CCSVI Background Info - added to FiscalRangers.com for reference
The SHORT url to this page is: http://tinyurl.com/CCSVIfixesMS
This page has not been updated with more technical info since 2012, but contains many website links and details to educate you about CCSVI - read it then do research on more current details. This top background section updated 10/2013.
CCSVI (also known as "liberation" therapy) is an alternative method to possibly curing Multiple Sclerosis symptoms. It requires diagnosis using sonar or MRI scans to detect clogged veins in the neck and then surgery to remove blockages to blood flow in the neck veins. That opens up blood circulation for the brain and improves cognitive capabiliies and reduces many symptoms normally categorized as MS symptoms. It is more effective on younger people who have not yet suffered brain damage from symptoms, but I have seen cases improving older people's skills also. I visited the MS group in the Villages, FL and four older members (it is a retirement community) all had improvements from CCSVI procedures and raved about it.
There is a huge underground resource network on its results and many YouTube videos by MS patients of the improvements they saw after the CCSVI treatment. Since it is a SURGICAL procedure, it is not a skill of Neurologists who control most MS patients, and they don't support it because it is not in their field.
The biggest impediment to education about CCSVI is that Neurologists are the primary doctors controlling most MS patients, and refuse to acknowledge its possible benefits because it does not require drugs. Thus the MS patient has to find an interventional radiologist TRAINED in CCSVI diagnosis and procedures and there are only a few in the US. Many Canadians with MS, where CCSVI is prohibited by their national health plan (controlled by neurologists and drug companies), fly to the US CCSVI experts or other countries to get CCSVI diagnosis & treatments. Thus skim this document, locate names of the skilled providers, and contact them, which could require travel. Not all intervential radiologists know how to read sonar or MRI screens to property determine CCSVI treatments, so don't just go to one who does not show up in this document. There are only 10-12 in the US I would recommend, or go to Costa Rica like many Canadians do.
CCSVI is the method of testing and removing blockages of neck veins to allow much better blood circulation to the MS patient’s brain, which many times has great improvements.
This
is a LONG, unorganized document containing links and references related
to CCSVI, a surgical (not neurological) treatment for Multiple
Sclerosis, and possibly other neurological diseases like Fibromyalgia.
I researched this as a background
for a possible medical business, but could not get local doctors
interested so I stopped my research. The biggest problem in the US is that there is a shortage
of doctors and CCSVI is not always covered by insurance, so patients
have to pay cash and not many doctors will invest the time to learn
proper CCSVI techniques. I have no connection to anyone profiting from CCSVI, and did this as background research for the business which I discontinued. I don't even have any relatives or friends with MS. I have an MBA and 20 plus years experience as a corporate internal audit manager and in my opinion, my research indicates many MS patients should consider CCSVI diagnosis, and possible treatments to realize improvements not provided by MS drugs.
This information was accumulated from Oct., 2010 to about June, 2011, thus some information may be out of date. If
you don’t know much about CCSVI, scroll down to find better info or
YouTube videos from doctors, TV news reports and from patients who post
BEFORE and AFTER videos of their CCSVI treatment. Also look for many of the dedicated CCSVI foundations or organizations for more current info. Do NOT rely on long existing MS associations because they again are controlled by neurologists and drug firms that profit from their continued management of MS patients using drugs, not alternatives like CCSVI.
Compiled & copyright by Vance Jochim, Tavares, FL - [email protected]
Facebook Page: https://www.facebook.com/CCSVIusa <<< This is an old Facebook page I updated until 2012..
Permission
is granted to use any of this data without charge, but please give
credit to this page or myself.
You
can get daily updates on CCSVI topics by creating a daily or weekly
Google alert, which sends you an email listing recent items. I also
find it helpful to do CCSVI google searches for other countries - I
found an amazing article on a website in Latin America with an English
translation.
I also recommend going to http://paper.li/~/publisher/601944#tab=created
and signing up for the “CCSVI Weekly News Digent” newsletter from the
National CCSVI Society which has an astounding number of articles. When
you get notified of a new issue by email, click to read the online
version which is better.
This information was accumulated from Oct., 2010 to about June, 2011. Some
issues will need to be updated through research. The data was
accumulated to create a medical tourism business focused on CCSVI, but
we found little interest from US doctors, and the skills of Latin
America providers was not at the level of those few CCSVI “thought
leaders” in the US. There is a large demand for competent CCSVI
providers for Canadians and British MS patients because their health
systems will not recognize CCSVI as a valid treatment. As a
consequence, Canadians will travel as far as Bulgaria to get treatment.
The awareness of CCSVI in the US is lower because CCSVI early adopters
CAN find treatment in the US, and the rest (in my opinion) have no clue
how effective CCSVI is for maybe ⅓ to ½ of MS patients. So, use this
fragmented “data dump” as a method to find information on CCSVI. Keep
in mind that CCSVI, or venoplasty, is usually not harmful, only costs
$8-10,000 in the US (plus travel), but the complication rate and
possibility of “re-stenosing” is greater if you go to standard
practitioners who have not kept up with current knowledge of CCSVI
effective procedures and diagnosis. My recommendation is to find a
CCSVI skilled practitioner and have both the sonar and MRI tests done
first. It is key to have them done by CCSVI trained practitioners, or
they might read the sonar and MRI readings incorrectly. Do NOT go to a
general medical doctor. This document will give you lots of insight
into who the good practitioners are and where they are located.
Vance Jochim Nov. 28, 2011
Notice:
All of this information is based upon my personal internet research,
and I am not a medical doctor. So, this information should be used as a
basis to do more research and ask questions of the doctors you consult
with, who should be interventional radiologists (for diagnosis) and/or
vascular surgeons for the CCSVI treatment. I do NOT believe any
neurologist will be helpful in providing CCSVI information unless they
have formally started providing or referring patients to CCSVI
providers. Also find new CCSVI specific societies for information and
for contributions to CCSVI research. The major MS societies are
controlled by neurologists and drug firms and are NOT good sources for
information on CCSVI.
The
entries in this document are not in any real order. Most recent items
are at the top, but about halfway down, you can find where I created
categories of entries, so you might start there.
This
document has not been updated with new entries since June, 2011. See
the Facebook page for more recent updates, and read the “likes” and the
newsfeed and wall.
vj
Events:
NCS ~ The National C.C.S.V.I. Society
Save the date!! Webcast in CCSVI Education series June 25th @ 3 PM Pacific Standard Time. Details coming soon!
NCS ~ The National C.C.S.V.I. Society
Dr. Salvatore Sclafani will hold a second Annual CCSVI Symposium in New York City this summer, July 15-17. July 15 will be reserved for patient education. The other two days will be dedicated to clinicians. Stay tuned for more details
New Items - March/June, 2011 - to be categorizedJul. 8, 2011 Toronto Star Editorial supporting CCSVI Clinical Studies in Canada - 2 versions
http://www.thestar.com/opinion/editorialopinion/article/1021576--put-liberation-therapy-to-the-test
http://edmonton.ctv.ca/servlet/an/local/CTVNews/20110708/ms-liberation-therapy-death-vein-surgery-110708/20110708/?hub=EdmontonHome
PatientsLikeMe.com - Forum for patients - this is the CCSVI list July 7,2011
11,000 posts are related to CCSVI ?? (maybe)
http://www.patientslikeme.com/search?q=ccsvi&commit=Search
Toronto Pensioner Billed $60k by Hospital in Dallas since Travel Insurance firm reneged - Jun 30, 2011
http://www.thestar.com/news/article/1017800--toronto-man-facing-65-000-in-medical-bills-after-incorrectly-filling-out-form
UK Telegraph - “Britain is the Worst for MS in Western Europe” May 23, 2011
100,000 Brits have MS.
http://www.telegraph.co.uk/health/healthnews/8529090/Britain-worst-for-MS-in-Western-Europe.html#disqus_thread
List of CCSVI Related Activities by Canadian Province - June 9, 2011
This article is about a London woman returning to Bulgaria for a second CCSVI treatment to “open up an irregular vein” they couldn’t do on her first trip.
http://www.lfpress.com/news/london/2011/06/09/18260706.html
BUT, there is a list at the bottom of the article of each Canadian Province and what they are doing about CCSVI:
What difference the procedure makes has been the subject of intense debate, with different Canadian provinces holding different views:
Saskatchewan: Will spend $5 million on clinical trials on the liberation treatment.
Manitoba: Will also invest $5 million in research.
Yukon: Will contribute to Saskatchewan's clinical trials.
Alberta: Will spend up to $1 million to examine the safety and effects the procedure.
British Columbia: Vancouver Coastal Health MS Clinic will get $700,000 in provincial funding to establish a patient registry for those who undergo the procedure and care-related protocols.
Ontario: Will create an expert advisory group to provide advice on follow-up care for people who undergo the procedure elsewhere.
Nova Scotia and Prince Edward Island: Physicians will help those who underwent the procedure elsewhere.
Newfoundland and Labrador: $400,000 for an observational study of people who had the procedure elsewhere.
Downer’s Grove, IL Interventional Radiologist, Dr. Scott Burstein, Raises MS funds, but no mention of CCSVI
http://triblocal.com/downers-grove/community/stories/2011/06/doctor-with-personal-mission-rides-to-raise-money-for-multiple-sclerosis/
http://doctor-finder.sirweb.org/details.cfm?xid=133351 ‘
(630) 275-1152 at Good Samaritan Hospital
Retinal Eye Scans Might be used to diagnose MS
http://www.medpagetoday.com/MeetingCoverage/CMSC/26889
ClarkesVille, TN Mayor has MS - June 8, 2011
http://www.theleafchronicle.com/article/20110608/NEWS01/106080335/Clarksville-mayor-diagnosed-multiple-sclerosis?odyssey=tab|topnews|text|FRONTPAGE
Article on Canadian Woman Raising funds for CCSVI in California - June 8, 2011
http://www.newsdurhamregion.com/news/article/178905
Publication on CCSVI - online generated newsletter
http://paper.li/CCSVI_Society/1306484186
CCSVI Book on Blurb.com “A Year of Hope” $25-39 online sales 36 pages long
You can preview the first 19 pages.
http://www.blurb.com/books/2229634
MS Types or Categories
RR - Relapsing-Remitting
SP - Secondary Progressive
PP - Primary Progressive
Article: London MS Patient Pat O’Connor is returning to Sofia, Bulgaria for another CCSVI treatment - June 9, 2011
She has to do the fundraising to pay for it. The first procedure, which restored blood flow in three veins, helped, she said - for example, she no longer loses her balance and falls from the disease that attacks the biological insulation for nerves. But she's still easily fatigued and confined to a walker or scooter, so O'Connor wants to go back a second time because doctors in Bulgaria say they can do now what was too risky last summer - open up an irregular vein.
http://www.lfpress.com/news/london/2011/06/09/18260706.html
Venous Multiple Sclerosis Hypothesis | CCSVI
Website - The goal of this website is to track development, especially research on CCSVI. Three languages.
This website was founded “by patients” based in Switzerland in 2009, and claims to be unbiased. Has many links to technical papers, some known to be biased. Needs to be reviewed to determine true objectives. Has many links and articles since 2009. MANY links to technical articles on CCSVI. http://csvi-ms.net/en
SXSW Conference Startup Bus - TripMedi Medical Tourism Website demo
http://www.startupbus.com/teams
Tripmedi website: http://www.tripmedi.com/
CCSVI Foundation in Chicago, IL - very inactive website, but good overview of CCSVI on this page
http://www.ccsvifoundation.org/about-us.php
Here are several YouTube links on CCSVI from their website
http://www.ccsvifoundation.org/links-details.php?id=18
See separate Word document with CCSVI overview, numerous CCSVI conference YouTube links and a FAQ - the VP was Dr. David Hubbard who went on to form his own Hubbard Foundation, which is probably why this group died around Nov. 2010.
Also has numerous “news” links HERE: http://www.ccsvifoundation.org/news.php
- only provider listed on the CCSVI Foundation website.
Information on CCSVI from Society of Interventional Radiologists (SIRWEB)
http://www.SirWeb.org
- and on Facebook: https://www.facebook.com/SocietyOfInterventionalRadiology?sk=wall
HERE is their position paper on CCSVI: http://www.sirweb.org/patients/CCSVI/
http://www.sirweb.org/news/newsPDF/SIR_MSstatement_JVIR.pdf
Chicago SIR Panel YouTube video of CCSVI panel featuring several CCSVI Gurus, March, 2011
http://www.youtube.com/watch?v=JZVmOw1rL6o&feature=player_embedded
SIR study results - March 28, 2011 : Angioplasty is safe for MS patients per study of 231 MS patients presented at Chicago SIR scientific meeting
http://www.healthimaging.com/index.php?option=com_articles&view=article&id=26981:sir-angioplasty-safe-for-ms-patients&division=hiit
And, here is a link to the original SIR press release, dated March 28, 2011
http://www.sirweb.org/news/newsPDF/3_MS_final.pdf
SIR Foundation Sets Research Priorities for Minimally Invasive Treatments for MS Patients - June 16, 2011
http://www.prnewswire.com/news-releases/sir-foundation-sets-research-priorities-for-minimally-invasive-treatments-for-ms-patients-123997984.html
Original August, 2010 SIR statement supporting CCSVI for MS
http://www.healthimaging.com/index.php?option=com_articles&view=article&id=23860:sir-supports-research-new-interventional-treatment-for-ms
And, here is link to original SIR press release:
http://www.sirweb.org/news/newsPDF/Release_JVIR_MS_final.pdf
SIR Research Consensus Panel on CCSVI - Oct. 18, 2010
http://www.sirfoundation.org/consensus-panels/Agenda-MS_RCP_FINAL_Oct_2010.doc
Website description of panel, including attendees
http://www.sirfoundation.org/consensus-panels/ - scroll down to section on CCSVI Oct., 2010 panel
SIR Position Statement on CCSVI& Clinical Practice Guidelines endorsed by Canadian IR Assoc. - in Sept. 2010 JVIR
http://www.sirweb.org/news/newsPDF/SIR_MSstatement_JVIR.pdf
Mar. 16, 2011 SIR Press Release on Annual Scientific Meeting - leads on CCSVI Issue
http://www.sirweb.org/news/newsPDF/Roundup11_final.pdf
“Interventional Radiology Treatment for CCSVI in MS Patients
Advancing MS Research: A Look at a Vein-opening Treatment
About 500,000 people in the United States have MS generally thought of as an incurable, disabling
autoimmune disease in which a person’s body attacks its own cells. A new study explores an endovascular treatment used by interventional radiologists to widen the veins in the neck and chest to improve blood flow. Will it encourage additional studies for its use as a treatment option for chronic cerebrospinal venous insufficiency or CCSVI in individuals with multiple sclerosis? Such treatments could be transformative for patients.
(Embargoed for release until Monday, March 28, 2011, at 8 a.m. Eastern) B-roll will be available.”
SIR Description of March 28, 2011 “Categorical Course” on CCSVI in MS patients
Pilot study: Is chronic fatigue the symptom of venous insufficiency associated with MS?
This report was published in the “International Angiology” journal and we found it on the website of the Soceity of Interventional Radiologists. It was conducted at Italy’s Ferrara University, and includes several authors including Dr. Paolo Zamboni.
http://members.sirweb.org/members/misc/Malagoni.pdf
Synopsis of SIR March 2011 Conference presentation on CCSVI
http://sirmeeting.org/index.cfm?do=ev.viewEv&ev=1801 or see text below, but get info on webpage
Or, here is webpage with presentation Powerpoints (not video - you have to buy the entire conference dvds for $600)
http://conference-cast.com/SIR/Common/presentation.aspx?ConfId=2&TrackId=13&SessionId=44 Neurointerventions II: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Sun, 3/27/11: 1:30 PM - 3:30 PM 0220
Workshop WK 20 McCormick West Room: W185BC
CCSVI is a hemodynamic manifestation of outflow obstruction or resistance manifested by memory loss, mental confusion, fatigue, headaches, ataxia, weakness and sensory deficits. The cause of CCSVI appears to be venous outflow obstructions due primarily to truncular malformations of the jugular and azygos veins. The use of endovascular techniques has been reported by Paolo Zamboni to improve symptoms and reduce exacerbations. This workshop will describe the clinical presentations, the use of ultrasound for screening, the venographic appearance, the therapeutic options and the pitfalls of diagnosis and treatment. In the last half of the workshop we will present a series of clinical case examples and discuss them with the audience.
Objective
At the end of this session, the learner should be able to:
1. Understand the pathology, the pathoophysiology and hemodynamic manifestations, and clinical presentations of CCSVI
2. be able to describe the various screening, diagnostic, and surveillance approaches to CCSVI
3. recognize the venographic appearances of CCSVI and a formulate a strategy for their detection
4. develop a coherent and effective treatment strategy
5. recognize and treat complications of thrombosis and restenosis
Coordinator(s)
Dr. Salvatore Sclafani, MD, FSIR
Speaker 2(s)
Dr. Kenneth Mandato, MD
DR. Sandy McDonald, MD
Fabrizio Salvi, MD
Dr. Salvatore Sclafani, MD, FSIR
LINKEDIN page for Interventional Radiologist “skills” with other links
http://www.linkedin.com/skills/skill/Interventional_Radiology?trk=tyah
====================================
Overview of Multiple Sclerosis without discussing CCSVI
http://www.gloucestertimes.com/lifestyle/x668045526/Headline
Direct-MS White paper on Why National MS Societies are Not Acting in the Best Interests of People with MS
https://www.facebook.com/notes/direct-ms/why-national-ms-societies-are-not-acting-in-the-best-interests-of-persons-with-m/149801465049361
Mark Miller Slideshow of CCSVI Procedure performed at Stanford in 2009 - marky77777 on YouTube
Very good 5-minute slideshow of scans of installation of three stents and result is that collateral veins vanish as vein flow increases and reflux is reduced. No relapse after a year.
This clearly was done at Stanford when they were using stents before a patient died due to abnormal condisions which caused them to shut the program down.
http://www.youtube.com/user/marky77777#p/a/u/0/cwc6QlLVtko
Liberation Basics - What is CCSVI by kelliedale99 on YouTube video - Apr. 27, 2011 - 10 minutes
Good layman’s overview from one CCSVI patient’s perspective of the process. “A venogram is similar to a colonoscopy - they look around and if they find something, they take it out. Venography is same related to veins...”. “IR’s are the future of medicine focused on minimally invasive treatments”. A 70% blocked vein was ballooned down to 30%. “I had a miraculous recovery.” All her problems were on left side of body, but problem was in right side jugular.
http://www.youtube.com/user/kelliedale99#p/a/u/0/tiP7R9-g6zA
She listed reference websites:
ccsvi.org
delmarveincare.com
thehubbardfoundation.org
ccsvi-atlanta.org
plus a fundraiser website to help get donations to pay off her treatments
MsHopeforhealing on CCSVI Insurance coverage - 40 year old mom, had MS for 10 years, diagnosed around 2005. Went to Dr. Hubbard who counsels that CCSVI should only be considered to help eliminate progression in disease. Other improvements are frosting on cake.
She recommends to get insurance pre-authorization form, she got approval for 3 of 5 tests, other 2 were considered “experimental.
http://www.youtube.com/watch?v=LhHFY5NZbAE&feature=related << this is before CCSVI
http://www.youtube.com/user/MsHopeforhealing#p/a/u/0/Giebb51t7Bg << May, 2011 2 month post CCSVI
Feeling so much better now. Can go on shopping trip now. Little victories are huge. Can put on pants without leaning. Less anxiety. Feel more stable. 3 months without steroids. Much more confidence and knows if MS symptom flares up, she knows it will go away. Taking a blood thinner. Still definitely has MS. Can go hours without thinking about MS, vs always doing so before CCSVI.
Aug 21, 2010 Video of Dr. David Hubbard, Neurologist at Haacke Fundraiser - this is a good, but slightly techinical overview of Dr. Zamboni’s CCSVI theory and then Hubbard’s evolving theory on CCSVI is a venous problem, not a neuro disease. This is very good support to give a Doctor who doesn’t understand CCSVI and wants to see a Doctor explain it in layman’s terms. This is probably easier to understand if you know about MS theories and myelin in the brain. He shows slides of fMRI exams of control and MS patients. At 18 minutes, he also talks about hostility of neurologists to CCSVI and CCSVI Politics. “”The leading MS specialists are uniformly negative and are actively suppressing” and there is no coverage of CCSVI in the Academy of Neurology. Internet has changed Doctor / Patient relationship. Open questions include: percent of MS patients with CCSVI range from 60% to 100% (Zamboni). Now doing Haacke protocol which is better than normal mri or mrv study. If done, send it to Haacke’s lab. If no negative procedures, not being aggressive enough. Haacke protocol is accurate. People seem to get better over next month. Is issue permanent nerve damage or compromised nerve conditions. We are seeing people with improvement in neuro conditions (not just vascular symptoms). Need to figure role of genetics in relation to CCSVI and MS. A cardiologist didn’t even know you could do IR on veins. Autoimmune theory is a hoax and drugs don’t work very well. Everyone should be studying this and encouraging patients to participate. Neurology specializes in untreatable diseases.
http://www.youtube.com/watch?v=bUku2TmZahI&feature=player_profilepage
Research on CCSVI and other Neurological Disorders - Possible Eye exam to detect CCSVI
https://www.facebook.com/notes/ccsvi-at-ubc-ms-clinic-information-and-support/look-into-my-eyes-ccsvi-in-other-neurological-disorders/10150190828907734
TedTalks on Transplanting Stem Cells, Not Organs - Susan Lim - Dec. 2010, India
Discussion about new methods of creating stem cells from fat cells that can be used to regenerate different body organs or repair them. Surgeon Susan Lim performed the first liver transplant in Asia. But a moral concern with transplants led her to ask: Could we be transplanting cells, not whole organs? She talks through her new research, discovering healing cells in surprising places.
http://www.hulu.com/watch/232937/tedtalks-susan-lim-transplant-cells-not-organs#play-queued-show-by-original_premiere_date-asc
Dr. Hubbard Interview by San Diego TV ABC station (TWO parts)
http://www.youtube.com/user/HubbFound#p/u/1/uEBcWJaUQE8 <<< Part 1
EXCELLENT interview (2 parts) current about His theory on MS, that “Big Pharma won’t pay for CCSVI clinical studies”. He also talked about “Medicine was focused on blood flowing into heart and brain which is arteries, and not outflow from brain into veins, but that became concern of new medical specialty, Interventional Radiologists, plus availability of new diagnostic tools like doppler ultrasound and MRI’s”. Results: Out of 60 patients treated, 2 had no improvement, other 58, most had improvement in vascular system symptoms like brain fog, coldness in limbs, one side hard to move, etc. But, longer MS patients didn’t see much improvement in neurological symptoms due to damage caused to brain by lack of blood flow, deposits of iron, etc.
Link to San Diego TV station TEXT and short video of the the above Hubbard interview - this includes naysayers from the neurologial community, which conflicts with most online testimonies of CCSVI patients.
http://www.10news.com/news/25585848/detail.html
Narrative of Dr. Hubbard’s theory of MS - main cause is poor blood flow, which is fixed with CCSVI treatment.
https://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/dr-hubbards-theory-of-ms/10150192191932211
National CCSVI Society ( NCS ) - NEED TO WATCH THESE This new website is empty except for links to buy “CCSVI” branded items like mugs to “support NCS” education and research. There are no details on who is behind it, or even white papers as of May 22, 2011, but there are Facebook pages, YouTube accounts, etc. The only content are links to some Canadian CCSVI seminars at the link below, featuring Canadian Dr. Bill Code, MD FRCPC (Canadian) and some videos are up to 2-hours long, so useful to watch. This organization seems to be a marketing vehicle for Dr. Bill Code or ??:
http://www.nationalccsvisociety.org/index.html
http://www.nationalccsvisociety.org/ncs-library.html <<< this is a hard to find page that has links to a number of useful videos.
Video of CCSVI roundtable with Dr. Kirsty Duncan,MP
http://www.nationalccsvisociety.org/nov26-2010-roundtable.html
CCSVI Patient information seminar in Victoria, Canada - Aug 9, 2010 starting with Dr. Bill Code - 2 hours - “You learn in medical school that veins are very unimportant”. Starts at beginning about Zambon, CCSVI definition, - slideshow to illustrate talk, stent history re Stanford protocol case, use of brain thinner caused early CCSVI patient to die but not considered a consequence of CCSVI treatment, thus Stanford neurologists shut down program. CCSVI not done by cardiologist but interventional radiologists (IR’s) who have training dealing with arteries and brains. Describes vein system and they vary between people. Azygous vein by spine and hard to see by doppler ultrasound unless injecting dye into blood. Bill Code spoke for first 16 minutes, then panelists who had treatment in different countries.
- Silvia - Chennai, India (June 10, 2010). Long wait list in Italy and Poland. Really happy story of her experience in India. “I was improving and improving and improving...”. “It was just like a honeymoon, but you can’t understand any of them even if they believe they speak English”. Stopped injecting drugs after 15 years. “I am very, very well”.
Betty - Poland - diagnosed 2004, had CCSVI around July 2010.
Didn’t go to False Creek for 6 months wait list for $2500. Neuro told her CCSVI was a fad.
Poland - Ginger Macqueen went to them, followed Standford protocol, Zamboni training
Clinic of Cadivicci Poland - $6900 Euros for July 12, 2010 which is $9000 Canadian. Spent $17,000 Canadian including travel. 70% of patients are Canadian, do 6 per day. Eye exam, Standford protocol MRI. Two people had prior no blockage
Ultrasound by Dr. Simca. Venogram, both blocked. Wanted stents to prevent restenosing, but Dr. said not needed. Treatment took 30 minutes. Drs all spoke English. Several improvements. Poland costs included all tests and five nights at hotel. Part of class action against Canadian Health System.
http://www.nationalccsvisociety.org/aug9-2010-victoria-info-session.html
- Valerie MacNeil - Tychy, Poland - clinical study - diagnosed 2008, got worse, can’t work - new college grad - had profound fatigue - had supportive GP - doppler and MRV didn’t show much in Poland, and other 10 in group had same results - had venography and both jugs blocked and installed stent due to weak vein, and Azygous vein was narrow - took Heparin shots for 14 days, plus 150 mg aspirin and Plavix for a year. have to to watch bumps and bruises. My quality of like makes it worth it. Not cured, and still have MS. On 2nd day, energy kept going up and increase “huge gift” - before couldn’t walk far, but after, took 2 hour walking tour, brainfog is reduced, no guarantees and energy going downhill in recent weeks, walking improved and perfect,
- BJ - treatment in Cabo San Lucas, Mexico - July, 2010 - Amerimed Clinic - Funny storyteller - Surgeon, Dr. MdDowell (??)Had doppler and MRI (not MRV). Right jugular blocked, was 90% restricted vs most others he is top10% worst. left Jug 35% restricted. Same day, had CCSVI for 3-hours - lot of time on right jugular - tried different size balloons, and vein re-collapsed. Choices do nothing, do surgery, install stent. Two days later, supplies flown in for stent, had it installed. Treatment put off until after World Cup Soccer game. Stent took 2 hours. His biggest issue is wheelchair, but didn’t have most other MS symptoms, didn’t take drugs. Can’t get up yet and dance. Biggest improvement was higher energy, feet swelling immediately and greatly reduced.
- Bob Fraser - July 2010 treatment, Dr. Raphael Miguel in Cabo , clinical trial - 50 years old, single. Same clinic as BJ. “Wonderful trip” - diagnosed in 2008 with ppms. Had rapid decline before CCSVI. Almost like a rebirth at 50. Profound. Balance vastly improved, can ride bike again, speech improved, no more headaches or pain in right neck, feet no longer cold - had 80% right jug restriction, no stents. His research indicated almost all CCSVI patients had benefits, even if only warm feet. “CCSVI is not a cure for MS”. “No-one has gotten worse” Going back for checkup.
- Sandra Birell - went to Albany, NY Jul 7, 2010, Diagnosed 2002, but symptoms for 30 years.
Got False Creek MRV and doppler - all 4 doctors said left stenosis - only venogram will show problems. Got diagnosis by Dr. Haacke looking at False Creek scans, showed that left jug was almost 100% blocked lying down. Venogram picture xray vs with radioactive dye. Most of dye wouldn’t go to brain. Vein was obstructed and balloon would not go into it. Obstruction was part of vein membrane wall. False creek showed blockage further down. Upper problems fixed if lower blockage is cleared. Had to balloon each jug twice. Azygous vein - found 5 stenoses - balloon wouldn’t inflate - had to do it 5 times. Results: Improved balance, stamina, leg spasms 99% gone, 100% improved swallowing. Improved finger dexterity (typing with 10 fingers). Stopped taking Rebif.
Q&A (1:06 ) :
- Sandra - wait and cost: Waited 2 months, now longer, total bill was $5000 US, pay $3k at start for venogram, then 2k for venoplasty.
- Betty: Canadian reimbursement - none except tax write off. If you are dependent, you can claim it, but otherwise not.
- Cost in Cabo - Bob - part of clinical trial, thus reduced. Total cost was $1500 and pre-approved. Airfare was almost $1500 due to short notice. Cost now is $9750 - includes hotel, $800 more for MRI - google Cabo San Lucas and CCSVI
- Did anyone feel worse after CCSVI - All at Cabo clinical trial have gotten better, others haven’t relapsed to prior condition. Was eating pizza with no swallowing problems same day. Was almost in wheelchair and couldn’t talk, now can walk, swim, talk (unbelievable). - Could feel stent, but gone in 2 days. Energy up after 2 days. If having 9 balloons, no extra cost. Other in Mexico, lady charged $2300 for each extra balloon (WorldMedAssist and Hospital Angeles in Tijuana). , stent would be $2900. Balloons cost $1500 to clinic per Dr. Code.
Continue at 1:17
2011-04-02 - CCSVI & MS Info 18 minute YouTube Video Session from CCSVIAustralia
by Kerri Cassidy, CCSVI patient
http://www.youtube.com/watch?v=F0C-ZAhB6eE&feature=feedf
Poor audio but transcript at www.facebook.com/CCSVIAUSTRALIA
Ginger MacQueen post-CCSVI 1 year update from Hong Kong (was in Canada)
This is a good 8 min YouTube overview for a CCSVI prospective patient and discusses "vascular health", large balloons, stent and valve issues. She talks about Dr. Sclafani, and the Newport, CA clinics and warns about some clinics aimed at just taking money.
http://www.youtube.com/watch?v=zoNP5X-_XnI
Italian Health Ad Tells CCSVI Story through URL’s
http://www.adweek.com/adfreak/health-ad-tells-story-entirely-through-urls-131739
TV Video Dr. Oz show to discuss questionable practices by drug companies with info from PharmedOut re drug marketing practices and issues - no specific info related to MS - “4 Things Drug companies don’t want you to know”
http://www.youtube.com/watch?v=RteUgNvHmmg&feature=youtu.be
Australian MS Awareness Week on MS (not CCSVI) - Good ideas for CCSVI publicity methods
http://www.mssociety.org.au/awareness-week.asp
MS Australia page on CCSVI
http://www.mssociety.org.au/documents/CCSVIandMS.pdf
Serono Case
Group that was named in Serono case as having received funds
http://mscare.org/cmsc/index.php?option=com_content&task=view&id=1164&Itemid=1099
Article: MS Charity involved in Serono payments to physicians
http://www.bnet.com/blog/drug-business/ms-charity-wants-8220money-laundering-8221-allegation-scrubbed-from-facebook/8258
MSactivist Blog
http://msactivist.blogspot.com/ - Very good - has list of other activist sites and blogs.
Q&A From Dr. Sclafani Regarding Length of X-Ray and radiation received for CCSVI
Hello Dr. Sclafani, nice to see you on FB.
Can you tell me please how long patient is under X-ray during CCSVI LIberation ?
And how much is one average received of effective ionic radiation (mSv?) during Liberation ?
Apr 13, 2011-
- Sal Sclafani, MD sorry, I must quote a range since all procedures are not identical in complexity, challenges and needs for intervention. Procedures take me about 2 hours on average, this includes vascular access, diagnostic venography, intravascular ultrasound, angioplasty, another round of venography and IVUS for each vessel. Radiation exposure is about 15-60 minutes. average doses will be about 3-10 mSv
Dianne Hartwick - Canadian story of success after CCSVI 5/5/2011
http://www.thepeterboroughexaminer.com/ArticleDisplay.aspx?e=3109158
Dr. Sandy McDonald - vascular surgeon - liberation therapy in Barrie, Ontario, Canada
http://www.youtube.com/watch?v=BmDXVNit5NQ << CTV video 7min
Doppler given at Barrie Vascular in Barrie, Ontario
Featured speaker at CCSVIFoundation.org sessions in Ontario, which sends patients to Rhode Island for treatment.
Albany - $5000 (Clinical study, thus lower cost since it is subsidized)
Others $9500 - $10,000
CCSVI Press Conference at False Creek Healthcare Center & Info - Mar 18, 2010
http://www.youtube.com/watch?v=8ocSlIfTxMs&feature=related
Featuring Dr. Marian Simka from Poland
With Dr. Mark Godley from False Creek.
Dr. Mark Godley is a chairperson of the International Society for Neurovascular Disease ( ISND )
Diagnosis with MRV and Ultrsound in Vancouver, Canada
http://www.falsecreekhealthcare.com/services/advanced-diagnostics/ccsvi-ms-studies/
CCSVICLINIC.ca - Does Screening in Fargo, ND
From one patient: “I was diagnosed with MS back in 1983.Recently I came across ccsviclinic.ca. They are screening in Fargo, ND. Called (404)461-9560 and spoke to Nurse Lisa. Their Liberation Package includes pre-op video consultation with their doctors, flight costs, visas, accommodation within their hospital premises. The treatment includes stent, medications, reports & post-op followup for next 6 mths. “Email:[email protected].
Lyme Disease & CCSVI - YouTube video by Thane
http://www.youtube.com/watch?v=Ps3---IJP_4&feature=share
Had it done at Atlanta CCSVI - “Brain is working much better - doesnt’ burn out as fast”
Can process world much better, i.e. stimulus from noise, etc.
Can handle Lyme disease treatments better due to blood circulation.
Can improve much faster.
Other girl who had CCSVI treatment got worse. Infection could now spread to whole body.
But now can be easier to treat with anti-biotics because toxins can drain out.
43% suffered restenosis - thus could happen to him - but not so far.
Imaging with doppler ultrasound using Zamboni protocol. Not covered under insurace, cost $550 2 hours.
If find CCSVI, used as referral to IR for procedure. Procedure is $10-15k, but covered by insurance.
He got pre-approval for CCSVI if positive after doppler.
For many Lyme sufferers, worst symptoms surround the head.
Another Lyme Disease patient comments (see “Notes” link below)
Healing Hope I tested positive for Lyme on the Igenex Western Blot. I have also tested positive for MS with an MRI and spinal tap. I took antibiotics for Lyme for 6 months and only got worse. I then tested positive for CCSVI and was treated. Liberation is the only thing that has given me relief and improvements. Not sure if I should continue antibiotics for Lyme.
Here is a Facebook Notes on the Lyme Disease and CCSVI - READ the many commentshttps://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/lyme-neuroborreliosis/10150200728392211
BlockedVeinsMSresearchgroup.com One page with links - seems to be created in mid-2010 and then no more work done on it. Has Facebook page.
http://www.blockedveinsmsresearchgroup.com./
Direct-MS videos of Dr. Joseph Hewett on CCSVI with Q&A in Calgary, Canada Apr. 6, 2011
He is with Pacific Interventional, now also has separate CCSVI group called Synergy Health.
This is a THREE part video - first is Embry Intro, then 2 is Hewett presentation and 3 is Q&A
Part 1: Introduction to Dr. Hewett by Dr. Ashton Embry: http://www.youtube.com/watch?v=VN-YC8JPZ9M This is a very good 8 minute preface to Hewett’s presentation. Explains why MS should be considered now a neuro-degenerative disease and not an auto-immune disease. “Neurologists are in a terminal case of denial and willful blindness.” “Get the CCSVI treatment as soon as possible.”
Part 2: Presentation by Dr. Joseph Hewett - 29 minutes ( Part 2 of 3 ) http://www.youtube.com/watch?v=A_R88CJTiX8&feature=related )- He has treated 600 CCSVI patients
Talk about venous stenting - history etc. - They use same same stents in both arteries & veins.
Guidelines exist for using stents in treatment of central venous stenosis (CVS)
17% of CCSVI patients have May Thurner syndrome
And non-CCSVI patients have same ratio, thus may not need MTS evaluation.
They perform 10,000 venous angioplasties per year on dialysis patients.
Rule is do angioplasty up to 3 times before stent.
Azygos - unpaired vein - only one, or right side of body..
Ask Doctor what their plan is
Use stents rarely except to deal with complications - i.e. patients have too small stent in place, or bad placement. - 8mm stent is too much for jugulars - took 6 hours to clean out bad size stent - have to then use high pressure balloon to fracture small stent and remove. 6mm stent in Azygous is way too small. Had to use bigger stent to fracture small one and embed in wall.
Only 3-5% of their patients get stents - many are “re-interventions”
Stents are last resort in Jugulars.
Part 3: Dr. Hewett Video Part 3 - Apr. 6, 2011 - Q&Q session with Dr. Hewett
http://www.youtube.com/watch?v=8OaVF1J_sVs&feature=player_embedded#at=38
Multiple angioplasties - having valvuloplasty may be reason to reduce multiple angioplasty
No broad statement applies on whether multiple angioplasties are helpful or hurtful
You want to find doctor who has been peforming venous angioplasties for long time.
Doing 300 CCSVI treatments is not enough if no other venoplasty experience.
Diagnostics is more important - they use Haacke MRI - downside - more expensive than doppler
Need good plan going from diagnostics to treatment to follow up.
Valvuplasty - less than 10% re-occurence but only for last year. No long term records yet.
Treatment can be blood flow in sinuses, or lower jugular that then resolve collapsed veins.
Haacke MRI (includes MRV) gives good flow data - can then look for abnormal area.
MRV is sub-category under MRI.
Some Azygos veins better if approached from arm, not groin.
Use MRV as map to determine way to insert catheter.
MRV quantifies iron level in brain. - gives data for future analysis of MS progression as baseline.
Follow up imaging - recommends MRI once per year.
CCSVI needs research to get respect in medical community.
- One way is MRI - send data to research
Participating in Hubbard registry plus setting up own and work with Haacke
Haacke protocol 1.5 is good, then another is better.
CCSVI on Canadian news all the time, but hardly ever in the US
US hospitals are resistant - legal resistance - but can use private clinics for treatment unlike Canada
“nobody will touch us here in Canada - we are shut down if we have MS”
No one in canada would read her diagnosis.
Drugs to halt early are blood thinners. Other drugs don’t impact CCSVI treatment.
Typical MS MRI is not going to help CCSVI diagnosis.
Prefer doppler or Haacke mri first, but ms mri won’t change what they do.
Meeting in Italy - wave of enthusiasm re nuerovascualar causes for neurodegenerative diseases.
Q - Negative outcomes?
- Procedure is very safe - venous angioplasty
- 1% complication rate - many are bruises, but some restenose etc.
- don’t put in stents too small i.e. like in Costa Rica
Restenose means: Gradual process is slow accumulation of scar that closes vein
- not a short term collapse of vein.
Wheelchair hope?
- More difficult to treat.
They are successfully treating lyme disease and parkinson’s disease..
Denser symptoms of MS have more variable response.
Goal in practice is to perform valvuloplasty
Mike Herata is genius on staff - one of 5 best IR’s
Problem is getting Canadian medical license to do work there
Was shut down trying to get one to just read MRI’s even if he is Canadian citizen.
Haacke MRI is $2500
Patients can preclude using stents.
Focus on patient centered medicine.
Blood clots: Healthy flow is good, block in flow causes higher chance of clots forming.
If can get to clots soon, not hard to deal with.
Vein bypass grafting: Hasn’t been studied. Tried in other parts of body like legs have been tried and outcomes not good. Not a great option.
Heredity - If parents have MS, should kid get diagnosis - up to individual - but good idea
If already have stent, and have good flows, then maybe do nothing.
Difference between venogram and Haacke mri - venogram is part of cost, mri is separate price
Do have patients with only ultrasound, but now want Haacke mrk
Reason is that some doppler tests didn’t follow Zamboni, thus HMRI might show need.
How to improve vascular health - don’t turn head to side, sit more upright to reduce blockage pressure.
- Don’t smoke. Smoking hurts blood vessels. Cuts down on oxygenation hurts venous system.
- Lose weight, exercise
Re Bill Code suggestions: CCSVI bible - including info from physical therapists, nutritionists, etc.
Pacemakers - can do mri on them, then get doppler test or can do venogram.
Veins and clinical symptoms are different for every person, thus can’t give general issue
Highlights of ???
- Lot more data is how CCSVI is safe.
- Most MS people have CCSVI
- More info on role of iron for MS
- Zamboni has new device that is collar to screen CCSVI similar to doppler
- Generalized role of vascular
- International Society of NeuroVascular disease - learn about it.
CCSVI is bowel and bladder dysfunction - catheter - long time, thus treatment might not be helpful
Jaw affect on CCSVI - maybe jaw position influences blood flow
How long have case studies been done - industry wants randomized, controlled trials.
Parkinsons: they have treated them and had good outcome, plus Lyme Disease patient, very good outcome
German stem cell transplant: Has he considered it. Not an expert. Do research and find studies.
- Ask specifics, standards, large research insitution to compare methods used.
MS re race - not looked at - see many more caucasions, and more women, but not studied.
Genetics: Italian studies looked at different phenotypes on handling iron in brain. Plays a role.
Geographical - Canadians have higher rate of MS. Seasonal effects more severe in spring and summer.
Most MS diagnosed people have lesions in brain.
4 in family all have MS, got CCSVI and 2 have regressed.
Restonosis rates were higher before they started doing valvuloplasty.
Dr. Sandy McDonald - vascular surgeon is Canadian
- end -
CCSVI Treatment Locator - by ReformedMS.org in Europe
Contains long list of CCSVI diagnosis and treatement centers in many countries including US & Canada.
ReformedMS.org is located in Vancouver, Canada and Blaine, WA (Washinton State in USA)
http://www.reformedms.org/ccsvi-treatment-locator/canada/ccsvi-screening
They have a REALLY good NEWS page that collect many CCSVI new articles from the media each day:
http://www.reformedms.org/ms-ccsvi-news
Here is Steven Simonyi-Gindele’s, the CEO of Reformed MS, report of a Japanese Hospital Group Agreeing to establish Clinical Studies.
http://www.reformedms.org/ccsvi-clinical-trials/ccsvi-report-japan-reformed-ms-making-progress-towards-ccsvi-clinical-trials
Albany, NY - Dr. Gary Paul Siskin (IR)
http://www.communitycare.com/Practices/Interventional_Radiology/CCSVI.asp
Professional Roster:
http://www.communitycare.com/Practices/Interventional_Radiology/Professional_Staff.asp
Note: Click on CCSVI menu in left column to see other details.
Direct-ms.org - Very Good list of CCSVI white papers, including all from Dr. Zamboni
http://www.direct-ms.org/CCSVI.html
Germany - CCSVI-Center.com - Frankfurt, German - English version website
http://www.ccsvi-center.com/venous_stents.htm
Has news of new venous stent introduced in conjunction with CoolMedical.com
Stents - Good overview and graphics from CCSVI-Center.com in Germany
http://www.ccsvi-center.com/Stents.htm
CCSVI Argentina - This is a CCSVI PROVIDER (see Team tab) and info on 1st International Conference
http://www.ccsviargentina.com.ar/en/
Wikipedia & Answers.com page on CCSVI
http://www.answers.com/topic/chronic-cerebro-spinal-venous-insufficiency
Accelerated Cure Project for MS - doesn’t appear to have any topics on CCSVI
But, if you search their site, the Google engine turns up a long list of CCSVI news articles
http://www.acceleratedcure.org/index.php
HUGE MS Forum with section on CCSVI - ThisIsMS.com - some topics have over 100,000 views.
http://www.thisisms.com/forum-40.html
Well known Dr. Sclafani posts answers to some questions.
CCSVI Could be Bigger than MS - Video from “Lyme Disease” Patient - diagnosed with CCSVI
http://www.youtube.com/watch?v=E0Vhall9TbI&feature=youtu.be < This is a 1 hour video
He knows two other Lyme patients who have CCSVI, and one improved after treatment.
Canadian Article about 6 people in British Columbia who went to Bulgaria and other countries for CCSVI treatment
http://www.osoyoostimes.com/news/2011/02/15/osoyoos-residents-heading-abroad-for-multiple-sclerosis-treatment/
YouTube Testimonies by MS Patients
Angelusa73 - Angela from Italy, now in US - got MS in 2006, had relapses. - early videos on CCSVI, then her success with Tysabari for 9 months, then she got PML and had significant deterioration when getting PML (fromTysabari) . Also founded foundation Flowers4MS.com to raise funds for CCSVI research.
Video of Italian songs and contributors to foundation: http://www.youtube.com/user/angelusa73#p/u/7/ISeneypNIkY
Video from Nov. 2, 2009 by Angela of MS drug Tysabari and PML after she was taking Tysabari before Nov. 2009 due to MS progression even after 3 other drugs. - Angela talks after scrolling text that tells that 24 out of 60,000 Tysabari users got PML. This video is Angela saying she had good success with Tysabari after taking it for 9 months, but she does think about PML risk . Very lucid.
http://www.youtube.com/user/angelusa73#p/u/42/tOwxn_SV8PE
Ameds Centrum CCSVI Clinic in Poland - also on Facebook
http://ameds.co/
Published five page paper “who Benefits Most from CCSVI Treatment”
http://ameds.co/ftp/who_benefits_most_from_ccsvi_treatment_by_ameds_centrum.pdf
2010-10-07 Two Neuro Based articles refute CCSVI - questionable data? - For reference only
http://www.aan.com/elibrary/neurologytoday/?event=home.showArticle&id=ovid.com:/bib/ovftdb/00132985-201010070-00011
2011-04-11 Annual meeting of American Academy of Neurology in Hawaii
http://www.aan.com/go/am11
Article on new Absorb stent used in Europe
http://www.trust.org/alertnet/news/abbott-absorbable-stent-shows-good-results/
2011-04-04 - TV News Video of CCSVI Protesters at Seattle MS Walk
http://www.facebook.com/video/video.php?v=10150143178354200
Article - Dr. Zamboni files patents regarding CCSVI process
http://news.nationalpost.com/2011/04/02/zamboni-says-no-con%EF%AC%82ict-in-applying-for-ms-patents/
Conference - ISNVD - International Society of NeuroVascular Disease (ISNVD)
- was in Italy - next will be in Orlando next year. (March, 2012?)
UK’s Dr. Tom Gilhooly Overview: http://us1.campaign-archive1.com/?u=646d7fd51cbebd959c3a5b033&id=f67ca3fe91&e
Dr. Hubbard Overview notes:
http://hubbardfoundation.blogspot.com/2011/03/summary-international-society-for.html
Ultrasound Manufacturers, Prices, etc.
Distributor: National Ultrasound - has Zamboni & BNAC recommended Esaote-Biosound
BioSound - Esaote - manufacturer of Zamboni recommended Doppler Ultrasound unit
Articles about possible Bias by Dr. Zamboni due to his receiving money from doppler ultrasound equipment maker Esaote.
http://www.thetelegram.com/Opinion/Editorial/2011-05-11/article-2496479/New-doubts/1
Doppler Ultrasound Training in Zamboni Method at BNAC
http://www.bnac.net/?page_id=608
A Doppler ultrasound study may be part of an ultrasound examination.
from http://www.compareultrasoundcost.com/ Doppler ultrasound is a special ultrasound technique that evaluates blood as it flows through a blood vessel, including the body's major arteries and veins in the abdomen, arms, legs and neck. There are three types of Doppler ultrasound:
- Color Doppler uses a computer to convert Doppler measurements into an array of colors to visualize the speed and direction of blood flow through a blood vessel.
- Power Doppler is a newer technique that is more sensitive than color Doppler and capable of providing greater detail of blood flow, especially in vessels that are located inside organs. Power Doppler, however, does not help the radiologist determine the direction of flow, which may be important in some situations.
- Spectral Doppler. Instead of displaying Doppler measurements visually, Spectral Doppler displays blood flow measurements graphically, in terms of the distance traveled per unit of time.
How does an Ultrasound work?
In medicine, ultrasound is used to detect changes in appearance and function of organs, tissues, or abnormal masses, such as tumors. In an ultrasound examination, a transducer both sends the sound waves and records the echoing waves. When the transducer is pressed against the skin, it directs a stream of inaudible, high-frequency sound waves into the body. As the sound waves bounce off of internal organs, fluids and tissues, the sensitive microphone in the transducer records tiny changes in the sound's pitch and direction. These signature waves are instantly measured and displayed by a computer, which in turn creates a real-time picture on the monitor. These live images are usually recorded on videotape and one or more frames of the moving pictures are typically captured as still images.
Ultrasound imaging is based on the same principles involved in the sonar used by bats, ships and fishermen. When a sound wave strikes an object, it bounces backward, or echoes. By measuring these echo waves it is possible to determine how far away the object is and its size, shape, consistency (whether the object is solid, filled with fluid, or both) and uniformity.
Doppler ultrasound, a special application of ultrasound, measures the direction and speed of blood cells as they move through vessels. The movement of blood cells causes a change in pitch of the reflected sound waves (Doppler effect). A computer collects and processes the sounds and creates graphs or pictures that represent the flow of blood through the blood vessels.
http://www.compareultrasoundcost.com/
Doppler ultrasound distributors and sources:
http://www.ultrasoundstore.com/
Doppler Ultrasound unit designed for Zamboni protocol
In early 2010, just as excitement about the Zamboni ideas was building, Esaote, based in Genoa, Italy, launched MyLab Vinco, a doppler ultrasound system touted in the company’s online brochure as “the only product designed for the diagnosis of CCSVI.” Mariangela Dellepiane, a spokeswoman for Esaote, said the company has worked with Dr. Zamboni and his centre for vascular diseases at the University of Ferrara for years, and developed MyLab Vinco according to his research.
“CCSVI clinic” in Canada, but services in US - acts like a facilitator
http://ccsviclinic.ca/
Kidney and Hypertension Center has partnered with the CCSVI Clinic to offer diagnostic screenings for CCSVI. We will begin offering these screenings in Grand Forks, ND ( http://ccsviclinic.ca/?p=760 ) in early December, 2010. The CCSVI Clinic will be coordinating all client scheduling for CCSVI. Please call (404) 461-9560 for more information
Package price: http://ccsviclinic.ca/?page_id=564 Uses Noble Hospital in Mass. http://www.facebook.com/NobleHospital
CCSVI Tracking Forum on “ThisIsMS” forum - contains many post op details from CCSVI patients
http://www.thisisms.com/ftopict-8346.html
There is also a CCSVI forum on this website. Searches on the main website on CCSVI as a topic will be blank - you have to go to the forum and look for the forum link on CCSVI which is massive and very instructive.
Provider - Dr. Gary Siskin, Albany, NY - Board Certified IR & Vascular Surgery
Located at Albany Med Neurosciences Institute
http://www.insiderpages.com/doctors/Gary-P-Siskin-MD-Albany
HERE is his Google Maps link
Community Care Physicians Latham NY of which Dr.Siskin is the principal have done over 500 procedures.
From comment on ThisIsMS.com CCSVI forum.
Provider - Dr. Caridi at the UF Gainesville?
Per ThisIsMS.com CCSVI forum: “There is also an IR at UF that I have corresponded with who seems EXTREMELY caring but I believe he has only performed the Liberation Procedure on slightly more than 50 patients to date and I know you mentioned wanting someone with more experience. I only started talking to him right as I was approved with my insurance for Dr. Sclafani in May. I am really blown away with how much time he has taken to explain things to me in multiple emails back and forth, especially given the fact that he is already extremely busy and has nothing to gain financially because he is on staff at UF. “
Provider - Dr. Salvatore Sclafani - Brooklyn, NY - did 20 CCSVI procedures, now doing trials
http://www.facebook.com/note.php?note_id=454584767733&id=182832983940 - this page contains very good discussions from him on CCSVI details
“i am of the opinion that some of the symptoms in patients with MS may be symptoms of CCSVI and other symptoms might be related to demyelinzation and other brain damage. The two entities might actually coexist. “
“Dr. Salvi told me that he believes that high flow venous collaterals drain through the thyroid when the jugular is obstructed. and that this leads to a thyroiditis, that results in hypothyroidism in many patients.”
“there are patterns of vein problems related to type of ms. PPMS was shown to have a higher incidence of azygos abnormalites by the zamboni group.”
HERE is a VERY detailed recap of Dr. Salvatore Sclafani’s comments on a CCSVI forum on ThisIsMS.com .
ReformedMSSociety
7 page story of MS cured by CCSVI: http://www.reformedms.org/Ruths-CCSVI-Treatment-Story.pdf
Continually updated Locator List of CCSVI providers in US
IRB’s - Institutional Review Board - Source: ReformedMSSociety & Hubbard Foundation
All Interventional Radiologists can now register to treat CCSVI patients through blanket IRB
CCSVI Multi-center IRB Registry - Established by the Hubbard Foundation HERE
IRB = institutional review board
|
Two IRB’s established by Hubbard Foundation |
|
Hubbard CCSVI Center of Excellence Testing, treatment and counseling for MS and CCSVI voice: (858) 486-1355 email: [email protected] web: www.hubbardfoundation.org San Diego, CA 92131 |
The Pomerado Hospital fMRI BOLD-MS Protocol IRB
Multi-Center Registry for CCSVI Testing and Treatment - National IRB
What is an IRB?
To start at the beginning, IRB stands for “institutional review board” a group of doctors, nurses, pharmacists and others that every hospital and every university maintains to protect patients or research subjects participating in research. A good definition of research is activity that is not for the benefit primarily of the patient but rather for the benefit of a third party: a drug company, government agency, private foundation or researcher hoping to advance his/her career. The IRB reviews proposals and decides if they are safe for patients, and also safe for the hospital, i.e. not likely to cause dissension or bad publicity. Typically the patients are paid, often handsomely, to volunteer, and the doctors are paid well too. Probably thousands of IRB proposals are approved and rejected every week in the U.S. Turning to CCSVI in particular, the neurologists in hospitals, in drug companies, at NIH, and at the big MS societies are against the theory and vote against studies of it. The argument is not that catheter angiography and venoplasty are experimental but that data is not being collected properly. So Hubbard Foundation has worked to overcome that resistance and has obtained two IRB-approved protocols.
The Pomerado Hospital fMRI BOLD-MS Protocol
The first was approved at Pomerado Hospital in Rancho Bernardo, CA. and evaluates the fMRI BOLD “venous undershoot” before and after venoplasty in MS patients with CCSVI demonstrated by the Haacke Protocol, a comprehensive MR examination of the CNS draining venous anatomy, and flow, CNS iron accumulation, new and old MS lesions, and BOLD. The data is sent to Magnetic Resonance Innovations, Inc. to be processed. Patients are tested at the Applied fMRI Institute and are treated by Dr Don Ponec and his IR colleagues. The study calls for 60 subjects initially but will be renewed.
The Multi-center Registry for CCSVI Testing and Treatment - See Hubbard foundation IRB link at top of this section on IRB’s and also click the link HERE for the Google Map of CCSVI IRB Locations - none are in Florida. Most are members of the Vascular Access Center chain.
The second much larger study has just been approved by a national (not an individual hospital or university) IRB. This study is a multi-center registry of CCSVI Testing and Treatment at interventional radiologist facilities all around the country. In this new Registry study, qualified IRs may participate if they abide by the protocol that requires objective testing by an outside MRI facility and clinical and MRI evaluations for restenosis or disease progression at 6 and 12 months after treatment. Any treating physician may refer his/her patient with suspected CCSVI, including but not limited to MS. After informed consent is obtained by the participating IR center, the patient is referred to a nearby MRI facility for the Haacke Protocol which will be reviewed by Magnetic Resonance Innovations, Inc. If positive, the IR will perform catheter angiography and if appropriate venoplasty . The patients will be evaluated before and at 6 and 12 months by MRI and disability ratings.
Several IRs around the country have treated a few patients without IRB oversight and without objective testing before treatment or on-going follow-up after treatment. To date hospital and university IRBs have halted this practice at the request of their neurologists on the grounds that patients may be susceptible to false claims and misguided expectations. A few IRs do not work in hospitals, are not under hospital jurisdiction and are proceeding in an uncontrolled fashion. Over time neurologists will likely abandon their resistance and begin referring their patients for CCSVI testing and treatment. Hopefully these neurologists will insist on objective testing before treatment and adequate follow-up thereafter, even if they do not participate in the IRB-approved Multi-center Registry
Source of most of text above on IRB’s is from Hubbard Foundation AND ReformedMS foundation:
MRV, Zamboni & other CCSVI diagnosis info
From Hubbard notes of ISNVD conference (International Society for NeuroVascular Disease Conference, 3/14-15, 2011) - http://hubbardfoundation.blogspot.com/2011/03/summary-international-society-for.html#more
MRI in treatment planning- M Haacke
Dr Haacke, the acknowledged expert in MR explained the superiority of MR. MR is the gold standard for describing MS lesions, it's the only technology that describes iron accumulation,it's the only technology that visualizes small veins, and it's the only technology that describes and objectively quantifies venous flow independent of operator expertise, which allows objective pre and post treatment comparison.
HERE is a slideshow by Dr. E. Mark Haacke, PhD on “Role of MR Imaging in the Diagnosis of CCSVIhttp://www.ms-mri.com/presentations/wash-dc-oct-18-10-final-web.pdf
-------------------------------------------------------------------------------------------------------------
Publication list on CCSVI
http://csvi-ms.net/en/content/publications-venous-multiple-sclerosis#current_publications
Bulgaria CCSVI clinic
http://ccsvibg.com/index.php
Finding the Zamboni Diagnosis Protocol
Many patients ask where they can find the Dr. Zamboni protocol for CCSVI testing.
Dr. Zamboni’s Venous Hemodynamic criteria for CCSVI in MS is as follows:
1. Reflux constantly present in IJVs and/or VVs in both sitting and supine posture
2. Reflux in the deep cerebral veins (DCVs)
3. High resolution B-mode evidence of proximal IJV stenosis
4. Flow not Doppler detectable in the IJV’s and/or VVs
5. Negative difference in the cross sectional area (CSA) of the IJV
A minimum of 2 out of the 5 must be present to confirm pathology.
A detailed overview of the criteria and the testing methods is publicly available online and can be found at The Zamboni Protocol. v- http://csvi-ms.net/files/multiple%20sclerosis-USG.pdf
Website on CCSVI - Germany - contains white papers - Created by MS patients as an objective source of information
http://csvi-ms.net/en
The Original Zamboni Diagnosis Protocol article - 2008
Doppler Haemodynamics of Cerebral Venous Return
http://www.direct-ms.org/pdf/CCSVI/Zamboni%20Doppler%20Haemodynamics%2008.pdf
Another Zamboni 2009 article published in the Journal of Neurological Sciences
“ The value of cerebral Doppler venous haemodynamics in the assessment of
multiple sclerosis“
http://ivcc.fr/pubblicazioni_sito/2009-01-13_Zamboni%20value%20of%20cerebral%20Doppler.pdf
Another Zamboni article - the one that links MS to CCSVI
“Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2647682/
Reference - BNAC - Buffalo Neuroimaging Analysis Center
Welcome to the Buffalo Neuroimaging Analysis Center (BNAC). The BNAC is located in the Jacobs Neurological Institute (JNI) at Buffalo General Hospital, part of the University at Buffalo and Buffalo Niagara Medical Campus in downtown Buffalo, NY, USA www.bnac.net Provides training in Zamboni protocol testing by ultrasound.
They have a list of papers related to Dr. Zamboni and CCSVI here:
http://www.bnac.net/?s=zamboni
In April, 2011, they issued a study on CCSVI that was widely criticized for different biases. Here is an April, 25, 2010 video by Dr. Zivadinov explaining the problem where they didn’t use doppler equipment propertly and 40 people were put into the “NO CCSVI” column, reducing “prevalence”.
http://www.youtube.com/watch?v=Yj1wFVLkn5c
Update: BNAC has been criticised for a biased research report issued on CCSVI, and yet they are in the middle of another study which is summarized by the Facebook page “CCSVI in Multiple Sclerosis” below:
Interim Report (Apr. 7, 2011) on BNAC clinical study on angioplasty and CCSVI
https://www.facebook.com/note.php?note_id=10150152748142211
Diagnosis Tips - Watch out for Doppler diagnosis that doesn’t follow Zamboni protocol
Feb. 24, 2011 Comment on Facebook written by IR specialist: It is very important for patients to verify qualifications and exam protocol training prior to getting a CCSVI Ultrasound Doppler exam. My name is Lanie. I am a certified CCSVI vascular sonographer at CCSVI-Atlanta. I was recently asked to review images from a patient in the mid-west that supposedly had a “CCSVI” Doppler Ultrasound.... The patient was told they were negative for CCSVI even though the images taken did not cover any of the 5 Criteria under the Zamboni protocol. The patient report did not list any relevant information that would be useful in a diagnosis of CCSVI. In actuality, this patient paid for an exam, left with the wrong diagnosis and is now making an appointment to have a full Zamboni protocol exam at our facility. Some facilities are applying a standard carotid artery approach to view the jugular without the full understanding of what needs to be evaluated to diagnose CCSVI. I want to help other patients avoid this in the future.
CCSVI is a doppler ultrasound exam following Zamboni protocol that has 5 Criteria. In order to be positive a patient must meet 2/5.
The protocol is complex & lengthy. Below is a basic list of what is evaluated:
internal jugular or vertebral vein reflux
deep cerebral vein reflux
b-mode anomalies
blockages
negative delta for cross sectional area
All the above contain multiple elements. For example, B-mode anomalies includes stenosis. This is only one element within one criteria.
Note: I am a CCSVI Certified Vascular Sonographer at CCSVI Atlanta. I was trained in the Zamboni protocol at the Buffalo Neuroimaging Analysis Center (BNAC). BNAC is at http://www.bnac.net/
------------------------------------------------------SIR Abstract on Whether to Test for May Turner Symptoms During CCSVI Diagnosis
http://www.sirmeeting.org/index.cfm?do=ev.viewEv&ev=2280
The incidence of May Thurner Syndrome in patients with Multiple Sclerosis (MS) undergoing endovascular treatment for Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Presented During: Vascular interventions: veins/other Sun, 3/27: 8:36 AM
Abstract No: 34
Authors: K. Mandato, J.F. Johnson, G. Siskin, M. Englander, C. Vera, A. Herr, Radiology, Albany Medical Center, Albany, NY; Dr. Kenneth Mandato, MD -
Purpose:
To determine the incidence of May-Thurner Syndrome (MTS) in patients with MS undergoing pelvic venography prior to endovascular treatment of CCSVI.
Materials:
A retrospective analysis of MS patients undergoing pelvic venography during an evaluation for CCSVI was performed. Medical records were reviewed to determine if symptoms classically attributed to MTS were present. Pelvic venograms were reviewed to diagnose MTS; findings were graded based upon the degree of left common iliac vein compression and the presence of pelvic collateral veins (Table 1). Grade 2 and Grade 3 findings were considered positive for MTS. These findings were compared with historical controls.
Results:
160 patients (mean age 47 years; range 25-68 years) were included in this retrospective analysis. 66% (105/160) of these patients were female and 34% (55/160) were male. Based on the pelvic venography findings, 17% of patients were found to have MTS (Grade 2 or Grade 3 findings on venography). 74.1% (20/27) of these patients were female, but this difference was not significant (p=0.378). None of the patients with MTS had a history of deep venous thrombosis (DVT) or left lower extremity swelling.
Conclusions:
In patients with MS undergoing pelvic venography as part of a CCSVI evaluation, there was a 17% incidence of May-Thurner Syndrome. Historically, there is a reported incidence of MTS in 6.3-24% of an asymptomatic population [1,2]. This data therefore suggests that MS patients do not have an increased incidence of MTS. Given these findings, and the fluoroscopic exposure time and contrast dose required to evaluate the pelvic vasculature for MTS as part of a CCSVI venogram, we do not support the routine performance of pelvic venography during these procedures, unless the patient has a history of DVT or leg swelling.
----------------------------------------------------------------SIR Presentation on Ultrasound and Venographic Correlation and the Clinical Response to Balloon Angioplasty in CCSVI - March 28, 2011 - http://www.sirmeeting.org/index.cfm?do=abs.viewAbs&abs=1453
A March 28th Technical Conference by the US society of Interventional Radiologists had several CCSVI related presentations. This one was a study of 30 patients to compare diagnosis from ultrasound vs MRV. They found that doppler missed 3 and venography later found 2 of them with CCSVI. 28 patients received angioplasty and "technical success was achieved in all patients" and “There were no major or minor complications”. Good info.
Abstract No: 113
Authors: M. Hall, T. Fischbach, G. Duprat, Leighton Vascular Center, Memorial Hospital, South Bend, IN;
Author(s) Dr. Michael Hall, MD - Radiology Inc. , Mishawaka, IN
Purpose:
Central cerebrospinal venous insufficiency (CCSVI) has recently been proposed as a contributing factor in the pathophysiology of multiple sclerosis (MS). The primary goal of this prospective single center study is to correlate ultrasound and venographic findings in patients evaluated for CCSVI. Secondary objectives of this study include the safety of balloon angioplasty in the treatment of CCSVI and the short term clinical outcome.
Materials:
This study was IRB approved. 30 patients were enrolled in this single center prospective study. All patients underwent comprehensive ultrasound evaluation and venography. All patients undergoing angioplasty were assessed with ultrasound postoperatively. Short term follow-up was obtained at 3-5 months. Patients were assessed for treatment complication and clinical outcome (frequency and severity of MS attacks pre- and post-operatively)
Results:
27 of the 30 patients demonstrated abnormal ultrasound findings. All but one of these patients with positive US findings also had positive findings at venography. 2 of the 3 patients with negative ultrasound findings had positive venographic findings. 28 patients were treated with balloon angioplasty. Technical success was acheived in all patients. There were no minor or major complications. Clinical outcomes are currently being reviewed.
Conclusions:
There was found to be a strong correlation between ultrasound and venographic findings in this prospecitvely evaluated group. There were 2 false negative findings at ultrasound and one false positive. Balloon angioplasty was safe and technically successful for all treated patients. Post-operative clinical evaluations are still in process.
SIR Technical Presentation March 27, 2011 - PERCUTANEOUS TRANSLUMINAL ANGIOPLASTY AND STENTING IN PATIENTS WITH MULTIPLE SCLEROSIS AND VENOUNS INSUFFICIENCY - PRELIMINARY RESULTS
http://www.sirmeeting.org/index.cfm?do=abs.viewAbs&abs=1373This study of 24 MS patients in Portugal was to evaluate the safety and results of patients receiving CCSVI treatment by angioplasty or stents. The conclusion was: “ PTA and stenting in patients with MS and multiple venous stenoses is safe with good preliminary results in most cases, however, with some recurrences short time after the procedure. “ “ The endovascular treatment improved MS clinical symptoms and QOL in every patient with involvement of both internal jugular veins, and azygos vein. The improvement was significant in 12 patients, moderate in 7 and slight in 2 patients.”
Abstract No: 33
Authors: J.M. Pisco, H. Rio Tinto, T. Bilhim, M. Duarte, , Saint Louis Hospital, Lisbon, PORTUGAL;
Author(s) Dr. Joao-Martins Pisco, MD - Hospital Pulido Valente - Lisbon, Portugal
Purpose: To evaluate the safety and preliminary results of percutaneous transluminal angioplasty (PTA) and stenting in patients with multiple sclerosis and venous insufficiency.
Materials & Methods: - Twenty-four consecutive patients with multiple sclerosis (MS) underwent venography of azygos and internal jugular veins followed by PTA of the venous stenosis as the only treatment or in association with stent placement. The age of patients ranged between 17 and 52 years (mean 36 years) and the length of the diagnosis of MS ranged between 3 and 22 years (mean 16 years). Mean follow-up was between 1 and 4 months (mean 2.1 months). The results were evaluated by questionnaires and by neurological changes.
Results: - Three patients had only one stenosis, two of them the stenosis was located at the azygos vein, the third one at the left internal jugular vein. The remaining patients had stenosis of the azygos and both internal jugular veins. One of the stenosis in the internal jugular vein was treated by stenting. The other stenoses in the internal jugular and the azygos veins were treated by PTA. The postoperative complications were 2 inguinal hematomas and 1 inguinal minimal bleeding. The endovascular treatment improved MS clinical symptoms and QOL in every patient with involvement of both internal jugular veins, and azygos vein. The improvement was significant in 12 patients, moderate in 7 and slight in 2 patients. The 3 patients who had only one venous stenosis did not have clinical improvement. In 6 patients there was partial relapse of the clinical symptoms 1 to 2 months after the endovascular treatment, however they are still better than before the procedure
Conclusions: - PTA and stenting in patients with MS and multiple venous stenoses is safe with good preliminary results in most cases, however, with some recurrences short time after the procedure.
============================================================================
March 28, 2011 - Researchers at the Society of Interventional Radiology's 36th Annual Scientific Meeting in Chicago, Ill. published reports that the new CCSVI venoplasty treatment to improve blood flow from the brain to the heart was safe and without many complications. (FB)
http://www.sciencedaily.com/releases/2011/03/110328092411.htm?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+sciencedaily+%28ScienceDaily%3A+Latest+Science+News%29YouTube Documentary of CCSVI procedure by American Access Care in Towson, MD - Jan. 10, 2011
A venoplasty procedure to treat CCSVI at American Access Care in Towson, January 10, 2011. Thanks to my father for standing by me with love and support. HUGE thanks to Dr. Suchin who made this video possible
http://www.youtube.com/watch?v=UAa4LiwS1lM
6-Day Follow Up after CCSVI treatment above - more tech details and improvements
http://www.youtube.com/watch?v=N3R11YpqAHA&feature=related
Two month follow up after CCSVI treatment - March 15, 2011 - comments about MS drugs
http://www.youtube.com/user/donotconcede#p/a/u/2/RuvVGBu_9z8
PRE-treatment video before the above treatment about poor behavior of Neurologist - This is good to watch AFTER watching the above videos. - “CCSVI: My Neurologist's Brain Explodes! ! ! IRB Rant and January Liberation” - was trying to get into Univ of MD clinical study - time delays resulted in her going to American Access Care.
http://www.youtube.com/watch?v=rxGRdu7epH4&feature=related
2010-11-26 Canadian CCSVI Roundtable1 Kirsty Duncan
Dr. Kirsty Duncan, federal MP and CCSVI proponent, is our special guest at a round table discussion on the future of health care in Canada, specifically as it relates to MS and CCSVI. In Vancouver BC November 26, 2010
http://www.youtube.com/watch?v=JmEUFDuoM58&feature=related
2011-03-22 Polish TV report on ISNVD Vascular Conference in Italy (with subtitles)
http://www.youtube.com/watch?v=wikz-_fsM0E
Twitter Account on MS LADY - @MSliberation
https://twitter.com/#!/MSLIBERATION
and related Facebook page:
http://www.facebook.com/pages/CCSVI-in-Multiple-Sclerosis/110796282297
Patient Story of 2008 MS Diagnosis - Jodi Bean’s Blog - Clinical Social Worker in Boston
Note: She is involved in MS fundraising, but there is no mention of CCSVI on her blog (as of 3/23/11)
http://jodibeansblog.blogspot.com/p/my-diagnosis-story.html
Music Video about MS Symptoms
http://www.youtube.com/watch?v=PtmuaSVHYLM&feature=related
Article: “Reflections on the first CCSVI International Conferences” - in Poland and Italy
http://us1.campaign-archive1.com/?u=646d7fd51cbebd959c3a5b033&id=f67ca3fe91&e=[UNIQID]
Average Cost for MS Hospital Stay per Cigna
Estimates by The National Institutes of Neurological Disorders and Stroke place the annual cost of multiple sclerosis in the United States in the billions of dollars. According to CIGNA data, the average length of a hospital stay for multiple sclerosis is over 7 days and costs $9,708 to $11,469.
From HERE.
Extracted overview of CCSVI & Dr. Zamboni
Background: In a recent study by Dr. Zamboni and colleagues, the team evaluated abnormalities of blood outflow in major veins draining from the brain and spinal cord to the heart in 65 people with different types of MS, compared with 235 people who were either healthy or who had other neurological disorders. They used sophisticated sonography techniques to detect abnormalities of venous drainage. The investigators reported evidence of slowed and obstructed drainage in the veins draining the brain and spinal cord in many of those with MS. They also found evidence of the opening of “substitute circles” – where the flow is deviated to smaller vessels to bypass obstructions, and these were often found to have reverse flow (reflux) of blood back into the brain.
The investigators call this venous obstruction “chronic cerebrospinal venous insufficiency,” or CCSVI. The treatment status of the people with MS (i.e., whether or not they were on an MS disease modifying drug) did not appear to influence whether they showed signs of CCSVI. The authors speculated that the reverse flow of blood back into the brain might set off the inflammation and immune-mediated damage that has been well described in MS. This study was published in June 2009 (J Neurol Neurosurg Psychiatry 2009; 80:392-399).
It is proposed, but not yet proven, that CCSVI may be corrected through endovascular surgery. This surgery is being called “liberation therapy” in some reports. One study getting underway was described at the 2009 ECTRIMS meeting in September. It involves a collaboration between researchers in Italy, Buffalo (NY) and Birmingham (AL) who are attempting to treat venous obstruction in 16 individuals using balloon dilation such as has been used for many years to treat blocked arteries.
In a small, open-label study by Dr. Zamboni and colleagues published in December, the team evaluated the safety and preliminary outcomes of vascular surgery (percutaneous transluminal angioplasty) in 35 individuals with relapsing-remitting MS, 20 with secondary-progressive MS, and 10 with primary-progressive MS. (J Vasc Surg 2009; 50:1348-1358) They reported some positive impacts and suggested that controlled trials were necessary to better determine potential safety and benefits of this procedure.
=======================================
I am NOT a medical person, so these are laymen’s interpretations of various online sources. My professional background is that I am an MBA who was a corporate auditor for 18+ years and I know how to research evolving situations like this to identify complications, etc.
This document describes a new surgical treatment that seems to reverse pain and other symptoms experienced by Multiple Sclerosis patients. The treatment eliminates a newly defined medical condition called CCSVI ( chronic cererbro spinal venous insufficiency) discovered by an Italian medical doctor (Dr. Paolo Zamboni - click HERE to see his original Dec., 2008 research study) while researching a cure for his wife’s multiple sclerosis (MS). The treatment is not approved yet by Canadian or US health authorities (FDA), thus MS patients are flying all over the world to get the treatment. Dr. Zamboni discovered that many MS patients had one or more blocked jugular or azygous veins. When unblocked, many of the MS symptoms disappeared or reversed slowly.
The Conventional View of MS
First, here is an overview of the conventional view of Multiple Sclerosis, written by Dr. David perlmutter, M.D. in an article on MS HERE.
MS is considered an "autoimmune disorder," meaning a disease characterized by the immune system reacting against the body. In MS, this misdirected immune response is directed against myelin, the protective insulation coating around brain neurons. Ultimately, collections of damaged neurons form a hard or sclerotic plaque in the brain and appear in multiple areas -- hence the name multiple sclerosis.
The mainstay of treatment for MS these days is the use of so-called "immunomodulatory therapy," or treatments (using drugs in pill or injection form) designed to modulate the overactive immune response. Common approaches using this approach involve the frequent injection of various forms of synthetic interferons. This approach has been shown to reduce the risk of new events or exacerbations of MS by as much as 28-30 percent. Unfortunately, this type of medical intervention is often associated with significant side effects and reports of patients feeling "flu-like symptoms" in as many as 78 percent of cases.
One interesting observation that has puzzled MS researchers over the past 30 years is the peculiar geographic distribution of the disease. It turns out that people who spend their early lives in northern latitudes (like Canada) have a significantly increased risk for developing the disease. More recently it has been demonstrated that the same is true in the southern hemisphere. So the farther away you live from the equator, either north or south, the more at risk you are for developing MS.
5/11 - Dr. David Hubbard’s Theory of MS - head of Hubbard fMRI Institute and CCSVI thought leader
This was from a presentation at a CCSVI Conference in early 2011.
https://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/dr-hubbards-theory-of-ms/10150192191932211
Overview of CCSVI
A new CCSVI clinic in Mexico wrote this really good overview of CCSVI:
http://liberation-treatment-now.com/ccsvi
Here is a GREAT YouTube video by a woman in Canada who is a teacher and uses homemade “concept” diagrams to walk you through a comparison of the OLD neurologist solution for MS and the NEW CCSVI treatment. She says to also check Facebook page “Berukoff”
http://www.youtube.com/watch?v=ZbCR8SZFNKg
HERE is the About.com page defining CCSVI
My Overview of CCSVI:
The treatment involves using angioplasty type procedures, with or without stents, to unblock jugular and azygous veins, which appear in 50-90% of all MS patients. Once the procedure is performed, the patients may show immediate, dramatic improvements, but risks of “re-stonosing” exist, which is where the veins close up or become blocked again.
The purpose for this document is to locate skilled Interventional Radiologists in the Orlando, Florida area who are willing to establish a CCSVI treatment practice and a business relationship with my company. We would use our internet marketing and “medical tourism” skills to refer non-local clients from Canada and the US to them to implement the CCSVI treatment after proper diagnosis to ensure that the CCSVI condition exists. We would be involved in helping define the CCSVI treatment process based on our research, plus providing internet marketing skills. They would be willing to accept 10-80 or more treatments per month, which range in price from $7500 to $13,000 (including travel). We would receive an internet marketing fee or marketing contract to locate prospective CCSVI patients, qualify them, and handle initial questions before “handing them off” to the surgery group for scheduling. We are flexible in designing a method of compensation. If needed, we can provide travel, insurance and concierge services similar to hospitals that focus on traveling patients.
Numerous Canadian MS patients have had the treatment and reported “amazing” reduction in their MS symptoms in personal videos on YouTube.com (see below). MS patients suffer such pain they are willing to pay cash to get the procedure even if veins re-stenose in a few months. US patients are also searching for treatment sources, but we are not clear how much, if any of the treatment would be covered by different insurance companies One hospital in Costa Rica has six surgeons booked for months to provide the treatment and 80 patients a month fly there from Canada for treatment paying $13,000 cash for a package price. A doctor in Tampa and one in Tallahassee have been performing the procedure and are backed up for months, and don’t answer their phones. Thus there is a demand for surgical providers who can provide an organized process for treating non-local patients, with all the extra services that traveling patients expect.
A clinic could attempt to find patients on their own, handle their initial questions, etc., but Sunshine Medical Tourism, LLC is about 6-12 months ahead in understanding the “medical travel” market, how to find patients using the internet, the extra services they require (travel, specialized insurance, airport pickup, translations (for those from Latin America).and providing initial answers and white papers about the treatment without the clinic staff being inundated with calls. In many cases, the patient may NOT be referred by a doctor, but is seeking a direct connection with the surgeon or an interventional radiologist. Many MS patients seeking CCSVI treatment have lost faith in their neurologists and seek separate consultations and diagnosis.
For US patients, we understand some have insurance which may cover the first angioplasty, but may not cover incidents where veins re-stenose or stents are required. The result is that patients must be educated about these and other risks which would be covered in a treatment plan document. Insurance coverage would also have to be researched for each patient, since some may consider this treatment to be experimental.
Although some clinics are doing the work in ambulatory facilities, at this time, we recommend only using hospitals in case there is a complication requiring other equipment or specialists.. If a surgeon has experience with more than 100 patients, they might know how to determine which cases could be treated in ambulatory facilities.
Diagnosis & Understanding of CCSVI
CCSVI is Chronic Cerbrospinal Venous insufficiency - defined by Dr. Paolo Zamboni when he formulated the theory and defined CCSVI as a possible cause for Multiple Sclerosis (MS) in late 2009 in Italy.. In a nutshell, it means blockage of jugular or azygous veins in the neck area. Dr. Zamboni’s studies indicated that CCSVI existed in 95% of patients he examined. Thus if the jugulars are partially or fully blocked, that is an initial indicator (in layman’s terms) of the indicator for a need for treatment to unblock the veins, which improves blood flow from the brain, which seems to reduce or eliminate MS symptoms.
Diagnosis is normally performed by an Interventional Radiologist, who then refers the patient to an endovascular surgeon for treatment. Or, the patient contacts the surgeon first, who arranges for their diagnosis, and treatment as indicated.
- The first level diagnosis is dopplar sonar to check blood flow through the left and right jugulars. - Second level diagnosis - Use of Magnetic Resonance Venography to examine possible blockage of the Azygous or other veins.
Radiologists or medical staff would know more specifics about techniques, needed equipment, etc. than my layman’s description above.
Definitions: occlusive (blocking) - thus vascular occlusive disease is blocked veins
endo (inside) vascular
CCSVI Related Technical websites:
“Endovascular stent surgery” - overview: http://www.surgeryencyclopedia.com/Ce-Fi/Endovascular-Stent-Surgery.html
HERE is website listing different Diagnostic Examination processes for Vascular Surgery
http://www.vascinsfla.com/about.html
CCSVI Argentina Page on Diagnosis steps and procedure
They call the secondary diagnosis method “MAR” or Magnetic Angio Resonance”
http://www.ccsviargentina.com.ar/en/procedure/
Diagnosis Method: IVUS or IntraVascular UltraSound diagnosis for CCSVI
This is a newly discussed diagnostic technique for CCSVI conditions. Rather than discuss it here, read the Wikipedia article. It mostly talks about using the system for arteries, but it applies to veins also. We have found references that at least two doctors consider it to be the new “Gold Standard” in diagnosis, but it will also be more expensive than external doppler ultrasound specified by Dr. Zamboni since it involves inserting a catheter into veins with a tiny ultrasound probe on the tip.
http://en.wikipedia.org/wiki/Intravascular_ultrasound
Two Well known CCSVI Doctors , Dr. Haacke and Dr. Hubbard Discuss CCSVI Imaging - 15 min - Sept., 2010 - discusses “Haacke” protocol for specialized MRv to evaluate CCSVI - (Note: other Doctors are not convinced that MRv is always needed, AND it is much more expensive that Doppler Ultrasound). Haacke is an “MR Research Scientist” from an imaging group at Wayne State Univ., and Dr. Hubbard is one of the only Neurologists to support CCSVI theories because it helped a relative. He performs CCSVI treatments in the San Diego area, and talks about the old auto-immune theory and treatments not making sense anymore. Hubbard has started a registry to track treatment results.
http://www.youtube.com/watch?v=H2P2urOD-MI
The Role of MR Imaging in the Diagnosis of CCSVI and in Pre-Treatment Planning and Monitoring Patient Outcomes - http://www.ms-mri.com/presentations/wash-dc-oct-18-10-final-web.pdf
Feb., 2011: CCSVI Update series of YouTube videos - Conducted by three doctors with CCSVI, MS and Doppler & imaging background : The current status (Feb., 2011) of CCSVI with Dr. Mark Haacke PhD, Dr Teri Jaklin ND, Dr. Joseph Hewett MD. This multi-part series captures a current discussion on all aspects of the ever evolving treatment for CCSVI in patients with multiple sclerosis - the latest in the procedure, imaging, stenting, restenosis as well as future directions and an open conversation that occurred after the official filming was complete.
Part 1: http://www.youtube.com/watch?v=nNXBz95CBtc
Part 2: http://www.youtube.com/watch?v=NVNrDfYiIi0
Part 3: http://www.youtube.com/watch?v=puq0piSAY6o Re-Stenosis rates were 50%, now MUCH less due to latest knowledge, using larger balloons, etc. Also, Azygous vein might be blocked but not visible unless use catheter.
Part 4: http://www.youtube.com/watch?v=8SZOQeCjFEM - Stents - “not evil” - Can use same stents as used for arteries. Used every day for other venous problems. In hewett’s practice, they have 4-6 paitents a week returning after other providers used too small balloons or stents, or malplaced stents. Need uniform standards.
CCSVI Atlanta Clinic Providing Doppler Ultrasound Diagnostic Evaluations for CCSVI
Test takes two hours and costs $550 - cash up front because insurance may not pay for it. They use the “same equipment and software” recommended by Dr. Zamboni and follow his protocols.
Note: This is only doppler ultrasound - usually an mrv (magnetic resonance venography) is used if warranted to evaluate veins that are deeper inside the body (like the azygous vein?). READ the “News & Updates” section.
http://ccsvi-atlanta.org/
How is CCSVI evaluated?
CCSVI is evaluated through the use of Doppler Ultrasound with equipment that is specifically designed to examine blood flow in the veins that drain blood from the brain. It is a non-invasive procedure, and represents the same primary evaluation technology used by Dr. Zamboni.
The procedure is conducted by a trained technician and uses sound waves to evaluate blood flow. The process involves the gliding of a handheld device (call a transducer) over the skin. The transducer is connected to an ultrasound machine, which examines the blood flow in the veins draining the brain.
Venous circulation is a relatively new field of study. Except for veins in the legs, it is often only arterial flow that is looked at when performing a circulatory evaluation.
What is the procedure to evaluate CCSVI?
In both seated and supine positions, each side of the neck is scanned by the Doppler ultrasound equipment. The venous flow is examined along the entire length of the neck. This scan will show the venous drainage from the brain via both the Internal Jugular Veins and the Vertebral Veins plus any collateral veins that may be present.
How much does the evaluation cost?
The complete Doppler Ultrasound scanning will take approximately two hours, and the cost is $550.
Is this evaluation covered by my health insurance?
Testing for CCSVI is not presently covered by Medicare or Medicaid. It is unclear whether or not individual health insurance will cover any of the cost of testing. For these reasons, payment is due at time of service.
What should one do if testing is positive for CCSVI?
Once the circulatory issue has been identified, the next step is to seek help from a specialist who deals with this type of circulatory problem.
Interventional Radiologists and Interventional Cardiologists are the specialists trained to further evaluate venous insufficiency, and if warranted, treat by venous balloon angioplasty.
CCSVI Atlanta does not treat these circulatory issues, but will help direct individuals to the proper specialists.
“CCSVI clinic” in Canada, but services in US - acts like a facilitator
http://ccsviclinic.ca/
Kidney and Hypertension Center has partnered with the CCSVI Clinic to offer diagnostic screenings for CCSVI. We will begin offering these screenings in Grand Forks, ND ( http://ccsviclinic.ca/?p=760 ) in early December, 2010. The CCSVI Clinic will be coordinating all client scheduling for CCSVI. Please call (404) 461-9560 for more information
Package price: http://ccsviclinic.ca/?page_id=564 Uses Noble Hospital in Mass. http://www.facebook.com/NobleHospital
Arizona Doppler - CCSVI diagnosis in Phoenix & Tuscon - uses Saguero Surgical for CCSVI
Our technologists are registered RVT with an average 15 years of experience and have received training specific to CCSVI screening at Buffalo Neuroimaging Analysis Center in the Jacobs Neurological Institute at Buffalo General Hospital.
http://ccsvi.azdoppler.com/
American Access Care of Towson, MD has recently announced that they are now providing Zamboni protocol doppler ultrasound testing. There are some of you who have not had a proper test done. Some need follow up from previous treatment. Please consider at least getting the test done if you have MS. (opinion written by another author, not Vance Jochim) 410-821-1910
“CCSVI clinic” in Canada, but services in US - acts like a facilitator
http://ccsviclinic.ca/
Kidney and Hypertension Center has partnered with the CCSVI Clinic to offer diagnostic screenings for CCSVI. We will begin offering these screenings in Grand Forks, ND ( http://ccsviclinic.ca/?p=760 ) in early December, 2010. The CCSVI Clinic will be coordinating all client scheduling for CCSVI. Please call (404) 461-9560 for more information
Package price: http://ccsviclinic.ca/?page_id=564 Uses Noble Hospital in Mass. http://www.facebook.com/NobleHospital
CCSVI Diagnosis Equipment Notes - diagnosis uses the following equipment:
1. Sonar Ultrasound (Color or Black and White) - usually the initial diagnosis step to determine if jugular and other veins are blocked. May be followed up by more extensive tests using MRI machines. This diagnosis step is described in detail by Dr. Zamboni, who developed the CCSVI diagnosis protocol. A Cleveland clinic study (led by Dr. Robert Fox, a NEUROLOGIST) is defining ambiguous areas in Zamboni’s protocol to ensure consistent results.
2. MRI (Magnetic Resonance ) . Also referred to as MRV (Magnetic Resonance Venography)
Basically an xray of the vein systems.
One article mentioned that a clinical study was using a new 3T MRI machine (twice as strong as standard clinical MRI) that will be used to perform MR venography scans to compare against the ultrasound tests.
One caveat is that apparently the US and Canada have strict standards about the amount of time a person can be in the machine because it uses radiation. Those standards may not be followed in other countries, and in one case, a CCSVI patient may have received longer MRV times, causing her hair to fall out.
- end -
MS Background Facts & Observations - this is from media and other reports I identified:
- There are 75,000 people in Canada with MS, and over 400,000 in US. About 1 of every 650 people have it. 75% are women, and it starts between ages of 20-40. Canada has highest per capita ratio of MS sufferers, and Canadian MS patients have been the most aggressive in seeking CCSVI treatment. That could be due to Canadian TV stations covering the issue several times.
- MS patients are normally under the care of a neurologist, who considers MS to be an auto-immune disease affecting the brain. Treatments are mostly drug based and there is no known cure. As a consequence, many MS patients “fire” their neurologists because they won’t consider or learn about CCSVI when there is a LOT of public information available on YouTube, blogs, etc of improvements in the “quality of life” and reduced MS symptoms right after the CCSVI treatment. Additionally, drug companies do NOT benefit from the CCSVI treatment, and they may be funding biased speakers (I saw one) and studies to confuse the issue. The embedded neurologists and drug research funds at some hospitals may (in my opinion) cause political issues for any clinic or hospital that offers CCSVI., since CCSVI is in the turf of Interventional Radiologists and Endovascular Surgeons, a completely different practice area.
Quote from a CCSVI supporter about Canadian Neuros:
“Would have been nice if the CBC (Canadian TV) did a story on CIHR (Canadian Institutes of Health Research - makes recommendations on MS research priorities for Canada’s health system). Looked at the supposed EXPERT panel. If you Google CIHR and the EXPERT panel you will see dominated by Neuro's. If you Google each Neuro's name you will find huge conflicts with the drug companies. Millions of dollars of funding for testing drugs for M.S.”
- The major MS Societies in Canada and the US resisted funding research for CCSVI, but finally allocated some funds towards research. Meanwhile, many MS patients are breaking from the established MS Societies and forming separate CCSVI focused foundations to fund research and provide educational information. Hospital, neurologist, or drug company funded and controlled MS support groups may suffer the same fate. Recently, a large Florida retirement community’s MS Support group had several members who had CCSVI describe at their January meeting significant improvements from the CCSVI treatment. What was interesting is the “MS Specialist” meeting speaker was to talk about CCSVI, but he turned out to be sponsored by a drug company and spent the first 20 minutes talking about new drug therapies for MS and then gave an ambivalent background on CCSVI, questioning its results.
- Types of MS:
Benign MS
Relapsing Remitting MS
Secondary Progressive MS
Primary Progressive MS
Malignant MS
Chronic Progressive MS
For Doctors:
List of Doctors who have MS and have had the CCSVI Treatment - May 15, 2011
https://www.facebook.com/notes/ccsvi-ivcc/doctors-with-ms-who-have-been-treated-for-ccsvi-les-m%C3%A9decins-avec-la-sp-qui-ont-/160260514038006
CCSVI Alliance List of Peer Reviewed articles on CCSVI
http://www.ccsvi.org/index.php/advanced-topics/published-articlesmaterials
Blog entry on WheelchairKamikaze.com on CCSVI - Author is medical doctor who got MS, and tried CCSVI diagnosis but veins are blocked by abnormal muscular condition. Includes 16 minute video by his Interventional Radiologist, Dr. Salvatore Sclafani (MD - Orthopedic Surgery, SUNY, Brooklyn, New York) , giving updates on CCSVI theory and his experiences with providing the treatment as of Dec. 31, 2010.
http://www.wheelchairkamikaze.com/2010/12/video-interview-with-my-ccsvi-doctor.html
Direct link to Dr. Sclafani’s interview: http://vimeo.com/17889703
This is an April, 2010 42 minute description by Dr. Sclafani of the CCSVI procedure in medical terms on YouTube during a conference: http://www.youtube.com/watch?v=tfweIvjWYuo
VERY good article on CCSVI by Canadian former Anesthesiologist Dr. Bill Code, who has MS and underwent the CCSVI treatment in Nov., 2010. He has spent years researching “natural” cures for MS, and includes an overview of post-op nutrition and eating plans to reduce inflammation and possible scarring inside veins.
Here is the pdf version: http://drbillcode.com/CCSVI.pdf
Here is the main website: http://drbillcode.com/ccsvi.html
Clinical Paper on Venoplasty & Stenting - Bjarnason - primarily to give background to patients
http://www.impact-ltd.ca/angio.pdf
Dr Gary Siskin: 43 minute YouTube video on the The SUNY Albany CCSVI Experience (SUNY Downstate Symposium on CCSVI, July 26 2010 - 15 min)- known radiologist expert for CCSVI - Describes cases and history - presentation to medical group. However, some techniques may now be different in 2011. Includes comments at end how they diagnose patient with “venous disease” (not MS) which justifies appropriate CCSVI treatment.
http://www.youtube.com/watch?v=jSIE5LFGsS4
Dr. Salvatore, Sclafani, SUNY (SUNY Downstate Symposium on CCSVI, July 26 2010 - 41 min)
Dr Sclafani discusses the Liberation Procedure, and some of his experience in treating patients. He defines the CCSVI condition, symptoms, clinical effects, results in medical terms. Will not use term MS or make it about MS, but about venous problems and “outflow obstruction”. He cites Gray’s Anatomy from 1858, which described CCSVI. MRv often done instead of ultrasound, but has false positives, and ultrasound is the most proven technique to detect CCSVI. He questions whether MRv should be done before catheterization.
Diagnosis methods:
- Catheter venography is most reliable. - the “gold standard” - shows flow, reflux, stenosis etc. - he discusses Dr. Zamboni’s protocol for this, and implementation steps. He discusses on procedure left out of Zamboni’s paper by the editor.
- IVUS - Intra-vascular ultrasound
- Ultrasound method should be very specific - he describes details (maybe Zamboni protocol)
- MRv’s are questionable -
http://www.youtube.com/watch?v=esaTBMV6EyI&NR=1
Online TV Station articles about CCSVI:
Canada TV stations were the first to break the news about CCSVI in late 2009, which is why more sources, blogs, etc are from Canada. Listed with newest articles at bottom of list.
TV01a. Canadian CTV Network Nov. 21, 2009 detailed investigative report on CCSVI that shook up the Canadian MS community. http://www.ctv.ca/CTVNews/WFive/20091120/W5_liberation_091121/
TV01b. Dec. 11, 2009 Canadian CTV interview of Italian Doctor Paolo Zamboni and his “amazing theory” of CCSVI. (includes Italian Sub-titles) which may cure or reverse Multiple Sclerosis symptoms. This is one of the TV interviews that appears to have started the CCSVI trend and is a good 10 minute overview - http://www.youtube.com/watch?v=ZV8xqNzd2F8
TV02. Canadian TV - CTV News - Dec. 12, 2010 article about “Liberation Therapy” about CCSVI.
http://ccsvinews.blogspot.com/2010/12/liberation-therapy-on-ctv.html
TV03. Canadian TV CBC Dec. 28, 2010 article about timeline of events in CCSVI issue in Canada
http://www.cbc.ca/health/story/2010/12/24/f-multiple-sclerosis-zamboni-ccsvi-timeline.html#socialcomments
TV04. Winnipeg actress to have liberation treatment:
http://liberationtreatmentccsvi.com/2011/01/winnipeg-actress-to-have-ms-therapy/
TV05. Early YouTube video in English by Dr. Paolo Zamboni, who discovered the CCSVI condition, in Nov., 2009, illustrating the problems caused to blood flow due to the CCSVI condition (blocked jugular or azygous veins). http://www.youtube.com/watch?v=C_RXs5dPh6E
TV06. KOMO News Channel 4 - Seattle - Report on CCSVI - Last week of Oct., 2010 - READ comments
Two parts by reporter Kathi Goertzen. Part two is about two women that went to Dr. Hubbard in San Diego for treatment - he is a neurologist, and one of only recommending it ( I think it is because he used it to help a relative with MS, but they didn’t say that in the TV report).. Treatment costs about $10,000, covered by insurance. One patient was Danielle Rheaume - see her patient video links further below.
Part 1: http://www.komonews.com/news/problemsolvers/106282468.html?tab=video
Part 2: http://www.komonews.com/news/problemsolvers/106377003.html?tab=video
TV07. Arizona man gets CCSVI treatment - June 2, 2011 - Fox News, Tuscon, AZ
Dr. Matthew Namanny, a vascular surgeon, in Tucson, AZ provided a CCSVI treatment for Ryan Noreen, perhaps after referral from Arizona Doppler - see June 1, 2011 Fox news article (both video and text).
““Traditionally ms has always been thought of as an autoimmune disorder and now it's hypothesized that this vascular problem contributes to ms and these plaque buildups," said Dr. Matthew Namanny.”
http://www.fox11az.com/news/health/Tucson-man-receives-new-MS-treatment-122978108.html
TV08. CBC TV News (Canada) article about New Brunswick Doctors urging caution over MS treatment (CCSVI)
The New Brunswick Medical Society is warning multiple sclerosis patients to be cautious when pursuing alternative therapies outside of the province. Dr. Allison Kennedy, the president of the organization that represents the province's doctors, said the CCSVI procedure has not been proven effective "it carries significant risks, including death."
http://www.cbc.ca/news/canada/new-brunswick/story/2011/06/09/nb-medical-society-ms-treatment-1228.html
Reported Results After CCSVI:
1. Tracking website has over 900 patients reporting better or worse outcomes in 9 symptoms after CCSVI
Click the “Treatment Graphs” link to see types of treated veins, abnormalities, and intervention types.
CCSVI-Tracking is an initiative of a group of volunteers who met on an early forum on CSSVI. Most of the volunteers suffer of MS and have had CCSVI treatment with results that vary from none to substantial positive effects on MS related symptoms. The group is fully independent and has no ties with medical specialists or the pharmaceutical industry. Site started Aug. 17, 2010. Most treatments were using venoplasty balloons and not stents.
http://www.ccsvi-tracking.com/
2. Ameds Centrum Study of Results of 47 CCSVI patients - 5 page report with graphs, etc.
Published by Maciej Zarebinski, MD, PhD www.ameds.co
They have provided over 500 CCSVI treatments in Poland. Complication rate below .005 or .5%
Shows under 30 age has 75% improvement, while over 40 age has 30% improvement.
Those with relapsing remitting had 45% improvement, other types were lower.
Under 5 years with MS had most improvement - 63%
Of all people with improvements, 69% were females while only 31% were males.
http://ameds.co/ftp/who_benefits_most_from_ccsvi_treatment_by_ameds_centrum.pdf
3. Clinics of the Heart in Cabo San Lucas, Mexico - 350 patients - “Open Study Results”
Severe complications 1.4% . “Objective neurological improvement” - 91.2%
Three months clinical restenosis: 24.5%, or 15.6% in one month, 14 stents used
“ These 350 patient series shows that the azygous and jugular vein angioplasty for multiple sclerosis is feasible and safe with very small complication rate plus a very high clinical efficacy of more than 90%. “
http://www.cardioabroad.com/news.php <<< scroll down to see the stats
MS Support Groups and Societies
Local MS Support Group in the Villages - (Jan. 2011 - based upon my personal visit) 6 of 90 members with MS have had the CCSVI treatment and all improved, except one who had congenital blocking of jugular veins and they could not be expanded. One went to Jacksonville, another to Tampa. Both physicians are backed up several months. Contact is Judy Heath at 352-750-6689 or 6684(?) Update: Feb 17, 2011 - per Judy, they are now only using Dr. Arslan in Tampa because he can get insurance firms to cover the cost, even Medicare.
National MS Society (US) - www.nationalmssociety.org
CCSVI VenoPlasty Procedure Description Info
From Ameds Centrum re veins checked during angioplasty
Dear Janet, during the procedure of angioplasty performed at our clinic the catheter is introduced into femoral vein and then passed through the iliac veins, vena cava inferior, vena cava superior and subclavian vein before placing it into the jugular veins. So naturally we check all the mentioned above veins while performing the procedure. The iliac vein is being checked only on the catheter's introduction site (i.e. only right iliac, not left). At the same time one should remember that intraluminar changes occur very occasionally in the iliac vein.
Possible Areas Overlooked during CCSVI treatment
“ THE DOCTORS WERE NOT LOOKING FOR LYME OR MAY THURBERS “
“I AM FINDING MSER'S WHO THINK THEY ARE RESTENOSING IN A LOT OF CASES THEY ARE NOT DRINKING ENOUGH WATER [IMPORTANT] AND THEY TRY IT AND IT HYDRATES THEM AGAIN WITH GOOD RESULTS..”
Patient Stories and Tips about CCSVI
A. TED Talks Presentation by Dave deBronkart on being e-Patients to find treatments for diseases
This is a very good overview of how patients are using online cures for diseases which he did himself for cancer. Read the comments, and a MS patient says that is what cured them after online research and getting the CCSVI treatment.
1. Emotional Video by Canadian Ginger MacQueen against Canadian Healthcare system and Canada’s MS Association for not supporting CCSVI more strongly. Sept., 2010.
She paid $10,000 to have CCSVI in Poland. One of several videos.
http://www.youtube.com/user/gingermacqueen#p/u/2/qKgt_3c0KIU
Here is Canadian TV video story about MacQueen. READ the MANY comments.
http://www.cbc.ca/health/story/2010/09/13/multiple-sclerosis-ccsvi-ginger-macqueen.html
Another CTV video follow up on Ginger - Sept, 2010 - it is clear that most of her MS symptoms are gone.
http://www.cbc.ca/video/player.html?category=News&zone=health&site=cbc.health.ca&clipid=1591317524
One year update on youTube from Ginger MacQueen at April, 2011 - She says that MRV tests of Azygous may not be enough, and she plans to have it checked with a catheter, since she had an early Azygous test by MrV. Wants to go to Pacific Interventionalists to have it checked. “My quality of life is amazing” other than some issues with legs.
http://www.youtube.com/watch?v=CRvDstctRIk&feature=uploademail
Apr. 28, 2011 - One year report (4 minutes) from Ginger after having CCSVI in Poland from Dr. Simka
“My qualify of life has improved immeasurably” “Blocked veins are not working. What do you have lose?”
http://www.youtube.com/watch?v=mH018EnzSqQ&sns=em
2. Denise Manley describes “Step by Step” Directions on how to get CCSVI done in US:
http://www.facebook.com/notes/denise-manley/step-by-step-directions-on-how-to-get-the-liberation-treatment-done-in-the-us/10150256608440608
3. A blog posting by Sarasota resident Nicki Beagle-Watts who received CCSVI treatment in August, 2010 from Dr. Bulent Arslan in Tampa’s Moffitt Center and raved about her improved quality of life.
http://godwatch365.blogspot.com/2010/08/lord-always-answers-prayers-in-his-time.html
4. 12 minute video of an MS patient receiving the CCSVI “Liberation” treatment in Nis Serbia
His balance is “back” two days after the procedure. Doesn’t need drug for balance. He shows video running up a steep hill 16 days after “liberation”. He is very improved. His wife had liberation but did not improve much, but she is in scooter, and has had it for 24 years. But here legs are warm now, and can use walker. “Neurologist and MS Specialists … you were wrong, you said not to get tested, and you were wrong...” “I feel great”. He is very angry at neurologists and “MS specialists” for lack of information and “being wrong for 120 years”. Also takes vitamin D3 (he must live in cold climate) of 20,000iu evry other day. It was done as part of a study and cost him 2,340 Euros plus travel and board . READ the many comments about issues. The second video is his two month update walking in the snow and says all symptoms are “nearly gone”.
http://www.youtube.com/watch?v=2ahkh1uH7aY
http://www.youtube.com/watch?v=1SCCZMIDN3g&NR=1
5. Jayne4ccsvi Channel for all those “Fighting for CCSVI” - Jayne Thomas, 51 years old, diagnosed with MS in 2000, and is in a wheelchair (May, 2010). Received liberation treatment around Dec., 2010. Very compelling set of videos - watching them in order is like watching a mystery - you want to see how it works out.. “I still have this chair tied to my ass, after two years”. Used to be a runner and worked out. Wants to go dancing in Paris in her red Prada shoes. Canadian. “Feel so much anger about problems with MS sufferers not getting liberation treatment...” She quotes a friend saying Canadian government should be charged with murder for not approving CCSVI treatment (May, 2010) She says many MS patients have this motto on their Facebook page: “I am not a cash cow” which refers to the constant costs dealing with neurologists and drug costs. Four “L’s” - Live, Love, Laugh and Liberation.
Has 16 uploads with numerous updates before and after CCSVI treatment.
Has numerous links to other CCSVI videos.
http://www.youtube.com/user/jayne4ccsvi
6. TracyLaws - Before and after Angioplasty CCSVI Treatment -
http://www.youtube.com/watch?v=IG-o0lXJzjA&feature=related
7. Danielle Rheaume - MS in Seattle - had CCSVI Treatment from Dr. Hubbard in San Diego. Covered in Seattle TV report (see KOMO4 ABC report in above video section).- 6 videos after treatment - Age 34
http://www.youtube.com/user/rheaume1976#p/u
Black & White pictures of doppler images of her angioplasty: http://www.youtube.com/user/rheaume1976#p/u/3/dlLV7tKh1Co
Blog: http://myelectricalstorm.wordpress.com/2010/09/09/post-liberation/8. Kathleen Lynch’s Pre & Post CCSVI Treatment Videos - 33 videos
http://www.youtube.com/user/klynch56
Her CCSVI treatment was May 27th, 2010 in Egypt, so she has update videos progressing over the subsequent six months. She had to return for second treatment due to “re-stenosing” of veins, but was “100% better” after second treatment.
9. British Columbia, Canada Newspaper Story on Five Locals who traveled for CCSVI
They described waiting times of 2 months to 2 years.
http://www.osoyoostimes.com/news/2011/02/15/osoyoos-residents-heading-abroad-for-multiple-sclerosis-treatment/
10. Jerry Gowen HAPPY testimonial after CCSVI treatment in Costa Rica - “My coordination is awesome”.
http://www.youtube.com/watch?v=ZAx0IwGYIX0
11. Teri Jacklin, naturapathic doctor, from Canada after CCSVI in Costa Rica: She had MS for 26 years - felt warmth for first time in many years, great improvement in balance, requires period of rebuilding for those with MS for many years. To prevent re-stonosing, monitor nutrition, improve health style (no cigarette smoking - negates angioplasty - (Google Basal constriction and smoking ); and increase physical movement.
http://www.youtube.com/watch?v=_UuBN1mZVvo
12. Australian woman 6 ½ month post CCSVI report - describes conditions, symptoms of re-stenosing, problems with hospitals not scheduling CCSVI anymore FOR MS PATIENTS unless approved by a neurologist, and most refuse to do so. She recommends Facebook page CCSVI Australia for more info.
http://www.youtube.com/watch?v=uzPLhyoVReU
13. Nikki Beagle-Watts Blog on CCSVI Experience
Nikki is a founder of CCSVI Floria and CCSVI Alliance, and she has had two CCSVI treatments
http://faithwalk365.blogspot.com/
2011-06-16 Alberta, Canada man, Darrell Watchorn, describes success with CCSVI treatment
Also incudes discussion with CCSVI providers Dr. Joseph Hewett and Dr. Bill Code (who has MS and has had the CCSVI treatment). This was publicity for an upcoming CCSVI seminar in Alberta.
http://www.dailyheraldtribune.com/ArticleDisplay.aspx?e=3169729#.Tfean9Yzu24;facebook
2011-04-02 - CCSVI & MS Info 18 minute YouTube Video Session from CCSVIAustralia
by Kerri Cassidy, CCSVI patient - she had the CCSVI treatment early in 2010 and two follow up treatments.
Her talk is on YouTube but the transcript on the CCSVIAustralia Facebook page (dated Apr. 2, 2011) has added information and is very good. It also describes frustration with Australia's health system for limiting CCSVI treatments.
http://www.youtube.com/watch?v=F0C-ZAhB6eE&feature=feedf
Poor audio but really good transcript at www.facebook.com/CCSVIAUSTRALIA
Ginger MacQueen post-CCSVI 1 year update from Hong Kong (was in Canada)
This is a good 8 min YouTube overview for a CCSVI prospective patient and discusses "vascular health", large balloons, stent and valve issues. She talks about Dr. Sclafani, and the Newport, CA clinics and warns about some clinics aimed at just taking money. See links to her earlier videos below. This is probably the best, long term one.
http://www.youtube.com/watch?v=zoNP5X-_XnI
Canadian Article about 6 people in British Columbia who went to Bulgaria and other countries for CCSVI treatment
http://www.osoyoostimes.com/news/2011/02/15/osoyoos-residents-heading-abroad-for-multiple-sclerosis-treatment/
YouTube Testimonies by CCSVI Patient Angelusa73, including problems from taking Tysabari
Angelusa73 - Angela from Italy, now in US - got MS in 2006, had relapses. - early videos on CCSVI, then her success with Tysabari for 9 months, then she got PML and had significant deterioration when getting PML (fromTysabari) . Also founded foundation Flowers4MS.com to raise funds for CCSVI research.
Video of Italian songs and contributors to foundation: http://www.youtube.com/user/angelusa73#p/u/7/ISeneypNIkY
Video from Nov. 2, 2009 by Angela of MS drug Tysabari and PML after she was taking Tysabari before Nov. 2009 due to MS progression even after 3 other drugs. - Angela talks after scrolling text that tells that 24 out of 60,000 Tysabari users got PML. This video is Angela saying she had good success with Tysabari after taking it for 9 months, but she does think about PML risk . Very lucid.
http://www.youtube.com/user/angelusa73#p/u/42/tOwxn_SV8PE
There are many more blog and YouTube postings by patients - search on CCSVI on Google and on YouTube.
Locations Providing CCSVI Treatment
See also these CCSVI provider locator sites which are comprenensive:
http://www.reformedms.org/ccsvi-treatment-locator
1. Hospital Angeles in Tijuana, Mexico - Just reduced price to $9500 (not including travel). They also provide a free webcast to educate patients. They treated 200 patients for CCSVI in 2010. The lead surgeon is “Stanford trained” Interventional Cardiologist Dr. Jorge Luna.They provide medical shuttles from San Diego’s airport.
http://www.prweb.com/releases/2011/02/prweb5024134.htm
They have even created a website CCSVI.mx to focus on CCSVI only, which has testimonials, etc. http://www.ccsvi.mx/
2. Newport Beach, California - Pacific Interventionalists - now Synergy Health - One of the first clinics in the US to provide CCSVI procedures. - http://www.pacificinterventional.com/about_ccsvi.html
They launched a separate firm called Synergy Health to provide CCSVI services. It is HERE.
Dr. Joseph Hewett is the CCSVI expert, and he conducted a tour of presentations in Canada in April, 2011.
Former CCSVI patients started their own Patient support Group on Facebook. Type in the Facebook search box above "Newport Beach/Costa Mesa CCSVI" and click to join. This is a CLOSED group not open to non-patients. They had 440 members as of June 2, 2011.
https://www.facebook.com/home.php?sk=group_1959864937477913. Hospital Clinica Biblica - Costa Rica - Has a very organized international patient group and has six surgeons providing CCSVI treatment. They get 19 CCSVI patients a week from Canada via a Medical Tourism Facilitation business, Passportmedical.com HERE. It is similar to Sunshine Medical Tourism. They pay a package price over $13,000 (which may be less now) for the medical trip, including travel and room and board. SMT has a marketing agreement already for reduced cost hip replacements, etc with Clinica Biblica, and I have visited their facilities, but they won’t add any more CCSVI patients from other firms. One patient died under their care after a third visit, but that was because Canadian health providers refused to meet with the patient when a blood clot appeared. That could have happened to any clinic. They are also said (in one patient blog) to use excessive mri radiation so that the patient’s hair falls out (unconfirmed). They are a JCI Accredited hospital, and have a good reputation for medical travelers. However, I don’t know whether their surgeons go to the CCSVI conferences to stay at the leading edge. ASK.
4. XCell-Center in Germany - NOTE: This center has been closed down in early 2011 due to a change in German laws regarding stem cell treatments.
focused on stem cell treatments, but has a CCSVI information page HERE: http://www.xcell-center.com/treatments/diseases-treated/venous-multiple-scelerosis-%28ccsvi%29.aspx?gclid=CJLU9dK67KYCFS9m7AodiGLBCg
They not only offer CCSVI treatment but an optional stem cell treatment to supposedly increase the strength of vein walls to prevent re-stenosing.
5. Rhode Island Vascular Institute - listed by one patient as a source for CCSVI diagnosis, but it is not discussed anywhere on the website: http://www.rivascularinstitute.com/
6. Moffit Cancer Center - Tampa - Dr. Bulent Arslan (radiologist) is cited by several MS patients as implementing CCSVI. He does respond to emails with process and price list.
[email protected] Hospital office: 813-745-8425
Facebook page: http://www.facebook.com/profile.php?id=100001590890935
He responds to email posted on the Moffitt website.
As of email sent to me Feb 3, 2011 - he is booked thru May, 2011
Bulent Arslan, M.D.
Associate Professor of Radiology, University of South Florida
Associate Member, Moffitt Cancer Center & Research Institute
Interventional Radiology & Endovascular Therapy
Phone 813-745-8425
Fax 813-745-1672
Email [email protected]
6b. Tampa, FL - Dr. Jerry Niedzwiecki, MD - Dr. Arslan (above) has a LONG wait list and he refers CCSVI patients also to “Dr. Jerry” AI3, Advanced Imaging and Interventional Institute
2730 McMullen Booth Ste 100, Clearwater, FL 33761 << West of Tampa
727-791-7300
http://www.advancedintervention.com
7. Clinical Studies at University of Buffalo, SUNY at the Baird MS Center.
8. Poland, Bulgaria and India - there are clinics there also.
8a. India - Apollo Hospitals - Chennai - see video press release below
http://www.apollohospitals.com/testimonial_landing_videos.php?hid=71&id=1000
9. Illinois - A vascular surgery clinic there (still looking for the name) just started providing CCSVI treatments.
10. Interventional Radiologists - some MS patients seek diagnosis first to determine they have the CCSVI condition (blocked veins), then they seek a surgeon, who could be local or not local.
11. Mexico - Biogenesis Institute (BI) in the U.S.A. has formed a partnership with Regenerative Medicine Institute, Mexico (RMI). The merger of these two companies will result in one of the most advanced and effective stem cell operations in the world. This organization ALSO adds a stem cell treatment to the process. Price is $17,000 including stent, and local room and board (2 nights), concierge service, etc. http://liberation-treatment-now.com/about
12. Romania - Dalin Medical AngioClinic - located in Bucharest, focused on CCSVI - Price is $6000 Euros “including flight ticket and hotels ($8,150 US at 1 E = $1.36 ). Advertises on internet. VERY basic website without ANY details on staff qualifications or testimonies. Pictures of equipment but no explanation. See “Procedure” page for acceptance criteria. Has list of possible complications in FAQ page. http://www.ccsviromania.com/home [email protected]
13. Merida, Yucatan, Mexico (near Cancun) - MTY clinic provides CCSVI treatment in Mexico for new rate of $9600 US including overnight stay, hotel 7 nihgts, 1 balloon (no air). MTY is Medical Traveler Yucatan .
http://www.onlineprnews.com/news/105029-1297128485-mty-lowers-ccsvi-patient-prices-for-ms-liberation-procedure.html
14. Mark Haacke, a medical physicist and MRI expert at Hamilton's McMaster University who directs the MRI imaging research centre at Wayne State University, said that he has "probably personally reviewed over 1,000 cases (of MS patients) so far, and there are venous abnormalities everywhere."
Personal Biography sheet from Wayne State Univ, Detroit is HERE.
Haacke devised the “Haacke protocol” for using MRI equipment to diagnose CCSVI.
His website is Here: Dr. Mark Haacke website on CCSVI diagnosis - it contains a good “history” section on CCSVI also. The website is good to understand the MRV diagnosis vs using just doppler ultrasound which is what was used by Zamboni to diagnose CCSVI.
HERE is a slideshow by Dr. E. Mark Haacke, PhD on “Role of MR Imaging in the Diagnosis of CCSVI
http://www.ms-mri.com/presentations/wash-dc-oct-18-10-final-web.pdf
15. Dr. Sandy MacDonald, a cardiovascular thoracic surgeon from Barrie, Ont., who was trained in liberation therapy by Zamboni, said that of 298 patients treated at a clinic in Cabos San Lucas, Mexico, "96 per cent were Canadians. (This may be Clinics of the Heart in Cabo)
16. Dr. David Hubbard, head of the Hubbard Foundation in San Diego
His foundation tests and treats CCSVI in MS patients. So far, 209 patients have been treated.
http://www.canada.com/health/specialists+competition+Canadian+patients/4246308/story.html#ixzz1DVd70n7i
Another CTV News report on Dr. Hubbard - March 14, 2011
http://www.ctv.ca/CTVNews/TopStories/20110313/ms-ccsvi-study-110313/
17. California - Stanford University - Michael Dake, M.D., professor, cardiothoracic surgery, Stanford University School of Medicine, Stanford, Calif.
Standford was one of the first practitioners of CCSVI and used stents. Then one person died, and they stopped doing it, but continued research. (This might have changed...)
Here is a March 14, 2010 video of Dr. Dake on “Stenting Jugular Veins for MS” (Note: Technology may be further along now, so don’t consider this current thought.)
http://www.youtube.com/watch?v=adbVIR1h7h8&feature=related
Here is another Dake video from same conference Mar 14, 2010 (SIR)Presentation on CCSVI part 1
http://www.youtube.com/user/RadiologySUNYDownst?ob=5#p/f/2/adbVIR1h7h8
18. Clinics of the Heart - Mexico Cardiologist and Cabo San Lucas Cardiologist - CCSVI Treatment page
http://www.cardioabroad.com/ccsvi-ms/
Pricing page: http://www.cardioabroad.com/blog/heart/the-cost-of-ccsvi-liberation-treatment-for-ms/
$9500 plus $850 for MRI (doesn’t say their doppler follows Zamboni, or if their “MRI” is really an MRv following Haacke protocols. )
“Every obstruction was initially treated mainly directed to the valves of the veins with balloon angioplasty using compliant balloons. The last patients were treated mainly with non-compliant, high pressure balloons to increase the likelihood of valve opening and reduce the damage to the walls.”
19. Vein Care Institute - Denver, Colorado - Has interesting marketing approach. Doesn’t mention CCSVI, but has video on “Venous Insufficiency” and describes symptoms - probably to avoid problem of marketing a non-FDA approved treatment for MS while still treating some of the symptoms - poor circulation, restless legs, “free your legs” etc. http://www.youtube.com/watch?v=oUKI_-enwZM
20. Arizona Doppler - does diagnosis in Tuscon or Phoenix, then refers patients to Saguaro Surgical.
This clinic focuses on doppler ultrasound, and staff have been trained in the Zamboni protocol. But, they don’t offer other diagnostics, including Haacke protocol MRv or venograms. Not much is available on Saguaro Surgical either.
http://ccsvi.azdoppler.com/ <<< has specific CCSVI page and the VERY GOOD “FAQ’s” page has many good details.
http://www.saguarosurgical.com/ <<<< refers patients to this clinic for CCSVI treatment
Another article indicated that a Dr. Matthew Namanny, a vascular surgeon, in Tucson, AZ provided a CCSVI treatment for Ryan Noreen, perhaps after referral from Arizona Doppler - see June 1, 2011 Fox news article (both video and text):
http://www.fox11az.com/news/health/Tucson-man-receives-new-MS-treatment-122978108.html
HERE is a video of a staffer at Arizona Doppler performing the CCSVI Doppler Ultrasound diagnosis:
http://saguarosurgical.com/2011/02/ccsvi-screening-in-action/
21. India - AAREX India - Mumbai - Medical REFERRAL website
http://ccsvi.in/index.htm
22. Shands HealthCare at the University of Florida College of Medicine
Dr. James G. Caridi, MD FSIR - Chief of Vascular and Interventional Radiology
1600 South West Archer Road, Box 100374
Gainesville, FL, 32610
Email: [email protected] Sandy Westergard: Patient Coordinator
Phone: 352.265.0291
Jun 2, 2011 - I talked to “Shannon” and received the following update:
- This is a University of Florida hospital and all employees are UFL employees
- They don’t market the CCSVI service since Dr. Caridi is Chief of the Dept, plus he is mostly a specialist in nano surgery for Cancer. “He has lots of other work”.
- Hardly any waiting list for CCSVI treatments.
- They primarily rely on MRv diagnosis & then a Venogram, and she did not know if they follow the Haacke protocol. Their diagnosis is aimed at detecting “Venous Occlusive Disease” conditions that then justify CCSVI. They only use doppler ultrasound if patient cannot afford the MRv diagnosis.
- They have treated about 40 CCSVI patients, some initially were from Canada.
- They DO have a finance office that will attempt to obtain health insurance approval for US patients. Canadians pay cash.
- CCSVI treatment price is $9300 plus Mrv diagnosis of $1644 plus stents, if needed at $1000 each.
Canadian Article about US Doctors Competing for CCSVI treatment patients:
Includes quotes from Dr. Hubbard and others who visited the Canadian Parliament to encourage them to authorize CCSVI treatment by the Canadian Health System (not happening).
http://www.canada.com/health/specialists+competition+Canadian+patients/4246308/story.html#ixzz1DVcrFkSZ
Medical Tourism Facilitators Focusing on CCSVI
1. Passport Medical in Vancouver, WA
You Tube Channel: http://www.youtube.com/user/passportmedical
2. WorldMedAssist with CCSVI Mexico website
Has specialized landing page that leads you to their website: http://ccsvimexico.com/
Uses Hospital Merida in Mexico and Appollo in India
http://www.worldmedassist.com/mexico/ccsvi-multiple-sclerosis-liberation-procedure/
Complementary Treatments for MS
1. Stem Cell Therapy is offered by some non-US clinics that claim to reverse brain damage caused by MS.
http://www.chron.com/disp/story.mpl/metropolitan/7438755.html
Article on Stem Cell treatment registry in Australia - June 2, 2011
Stem Cell treatments for MS - registry started in Australia. I haven't spent much time researching this complementary treatment - perhaps CCSVI fixes the blood flow problem, and this article indicates the "harsh" stem cell treatments might repair the damaged myelin sheath. No mention of CCSVI, and the registry is run by a neurologist.
http://www.theaustralian.com.au/news/health-science/ms-sufferers-to-pool-stem-cell-therapy-data/story-e6frg8y6-12260682407112. Scanning Techniques to Measure Amount of metal in the brain - mentions Dr. Zamboni, discusses a “synchrotron” device ( “a source of brilliant light that can analyze the microstructure of material down to the level of the atom.”) to scan the brain.
Info on Synchrotrons: http://en.wikipedia.org/wiki/Synchrotron
3. Atlas orthogonal adjustment
Lisa Whittingham • Jasmina, - from LinkedIn MS group
I had always suffered terrible coldness in hands and feet, so much that I could not sleep without socks and I would wear sweaters in the hot summer. That symptom immediately left after the procedure. It was the first time in years I felt my body was able to regulate temperature. I was very fatigued and felt poorly the week after the procedure, but then I noticed being able to lift my feet higher and walk better and then the energy level increased to where I am actually up most of the day.(Unusual for me). Then it seemed as if I lost my gains and I thought I re-stenosed. My Left jugular had been very bad, blocked n 3 places and right and azygous were also blocked. My migraines actually became worse than before.I had read information re: the atlas orthogonal adjustment by the upright doctor-ttp://uprightdoctor.wordpress.com/uc-subluxations/ and he discusses trauma and injuries as it relates to CCSVI and I did have a spinal chord tumor and neck injury prior to MS. I contacted him and found a physician here to do the adjustment after X-rays showed a severe Atlas issue. The atlas can impact blood flow. I had it adjusted for a moderate fee and all the gains I had came back with MUCH MORE MOBILITY. I am intrigued with the connection of cervical issues and CCSVI. The information on Upright Doc is very interesting and may help explain why some are helped more than others with CCSVI and perhaps a combo of treatments would be effective. Here is info on the Atlas technique-ttp://www.youtube.com/watch?v=O9wziwsu6QQ
Lisa
Complications and Problems With CCSVI
The largest complications (or fears) are 1) restenosing (veins close up, causing need for another costly treatment) and 2) fear over placement of stents which could cause thrombosis or blood clots, and 3) occasional detection of abnormal veins that cannot be opened up.
Facebook note by Arlene Hubbard about son’t restenosing Jul 14, 2011
https://www.facebook.com/notes/arlene-pellar-hubbard/recurrence-of-symptoms/201656483216321
Forum for CCSVI-MS -
http://ccsvi-ms.ning.com
April, 2011 Death of Canadian CCSVI Patient Maralyn Clarke at Synergy Health in Costa Mesa, CA
Canada's CTV TV report on the April death of Maralyn Clarke at Synergy Health in Costa Mesa, CA after CCSVI treatment. Excellent video and text. They say there was no required autopsy, and Synergy didn't participate in Hubbard Foundation's IRB to report complications, thus although the CCSVI community knew about 2 months ago, there was no clear investigation on the cause.
http://www.ctv.ca/CTVNews/TopStories/20110708/ms-liberation-therapy-death-vein-surgery-110708/Restenosing - May 16, 2011 Article about it, with lots of comments
http://ms.about.com/b/2011/05/16/feelings-about-retenosis-after-liberation-treatment.htm
Dr. Paolo Zamboni recommends: Surgeon should do at least 50 procedures to be comfortable with wide variations in treatment conditions and to see different abnormalities.
Montreal Gazette Jan 27, 2011 - Canadian man gets CCSVI treatment in Bulgaria, returns home, and when blood clot occurs in stent, Canadian doctors refuse to treat him - he had to call Newport Beach, Calif clinic and visit them to get further advice and diagnosis. (vj)
http://www.montrealgazette.com/health/patient+gets+liberation+therapy+abroad+struggles+find+followup+care/4177202/story.html
2011-06-20 - IR in Newport Beach, CA loses patient after performing “intracerebral sinus procedure”
Not sure if this is related to CCSVI. Case was revealed at CCSVI panel discussion in Canada by known critic of CCSVI. READ all the comments.
https://www.facebook.com/notes/arlene-pellar-hubbard/intense-moment-at-the-canada-meeting/192050110843625
Comments in above Facebook thread:
“Ok I am sorry but I have to comment guys in that I know this family well. They are from Alberta and can only comment so much out of respect to them because they are so still upset that there were other midigating factors as to why she died it was not stricly do to her having the procedure. She had other under lying medical issues a nd they knew she could ahve had risks by getting this done but he husband says she wanted to try it to see if it helped her with her MS because she had no other hope with this and was getting bad fast. W were not there, we do not know what actually happened so before any of us pass judgement lets just try to remember this family who is still greiving for their lost loved one an her children are on FB here and could be reading this. Thank you.”
“This shouldn't shock us. Rubin is a dork (& we know it).
He lives for any negative he can find about CCSVI & MS and preys on it.
Did he happen to mention the other 14,000 procedures that didn't have any problems?”
CCSVI and Thrombosis (aka blood clot formation in veins after venoplasty) - May 25, 2011
Thrombosis is the condition where blood clots are formed in the veins after venous angioplasty. “Less than 2% of CCSVI patients experience thrombosis”. By Rafael Moguel M.D. . Very clearly shows pictures of before and after the blood clot was treated in different ways.
http://www.cardioabroad.com/blog/heart/ccsvi-and-thrombosis/
Complications of Venous Angioplasty - no author stated - on blog CCSVI & MS - Oct. 10, 2010 http://ccsvinews.blogspot.com/2010/10/complications-of-venous-angioplasty-aka.html
Solutions for damaged or defective veins - One issue with CCSVI is the weak structure of vein walls and their tendency to re-collapse or re-stenose. Here is an article about alternative vein replacements - existing and upcoming techniques: http://www.cbc.ca/health/story/2011/02/02/veins-bioengineer.html
Doctors Stories:
Dr. Hewett in Seattle, correcting some of the reported problems with Stents in jugular and azygous veins: http://www.facebook.com/pages/American-Access-Care-of-Towson/107556919287875#!/notes/ccsvi-at-ubc-ms-clinic-information-and-support/venous-stenting-and-ccsvi-dr-hewett-presentation-january-29-2011-seattle/495642382733
Testimony to Canadian Parliament Feb. 8, 2011: Last year, an Ontario man died after undergoing the treatment in Costa Rica. Mahir Mostic had surgery in June. Blood clots formed around the stent that was inserted in his neck; his friends said he couldn't find a doctor willing to treat him in Canada.
The Niagara Falls man returned to Costa Rica in October, where he died soon after he was given medication to dissolve the clots, which may have triggered internal bleeding.
"I think it's unethical and unconscionable that when people come back and they're looking for help, they have medical appointments cancelled, they have tests cancelled," Duncan said. "They go to the emergency and they're sent home."
Lack of Sunlight could contribute to MS Development - Not directly related to CCSVI, but new research study shows a correlation with MS and lack of sunlight:: - people take Vitamin D
http://www.webmd.com/multiple-sclerosis/news/20110207/sun-exposure-vitamin-d-may-lower-ms-risk
Safety of CCSVI Confirmed in Several Studies - here is comment by Sief Hart on Facebook:
I really think that Dr. Rubin should start doing his job as the CIHR liason for CCSVI angioplasty. His concern is about the safety of CCSVI angioplasty???. This perplexes me as a physician as 3 recent large peer reviewed studies have been released recently by Dr. Petrov (Bulgaria), Dr. Simka (Poland) and Dr. Mandato (Albany, NY) and found that angioplasty for CCSVI in MS patients is safe. This has been confirmed by arguably the world's best medical school-Johns Hopkins University in a recent news article:
"Dusi’s article also states that the endovascular treatment which Zamboni intends to test may represent a “risk for the health of thousands of patients who undergo unproven surgical procedures”. This statement is proved wrong by a multicenter trial carried out in the US and led by Johns Hopkins University in Baltimore: the so-called “Zamboni treatment” is a safe one. The angioplasty performed to “restore patency” in the neck veins of patients with multiple sclerosis and chronic cerebro-spinal venous insufficiency has minimal side-effects. It is impossible to say whether it is effective or not because some years of experimentation are still required. However, the angioplasty procedure to “liberate” the stenosed or obstructed neck veins in patients with chronic cerebro-spinal venous insufficiency (Ccsvi) and multiple sclerosis is a safe procedure."
STENT Issues
Here is the Canadian Interventional Radiology Association (CIRA) page on stents
What is a stent, what can be treated with them. Doesn’t mention placement in veins.
http://ciraweb.org/drupal/en/patients/frequently-asked-questions/stent-placement
FACEBOOK Pages Dedicated to CCSVI
CCSVI - IVCC - Started May, 2011 and is only bi-lingual French/English Facebook page on CCSVI
https://www.facebook.com/pages/CCSVI-IVCC/158502877547103
Critics & Naysayers of CCSVI Success
Generally, most neurologists and drug company funded research facilities reject CCSVI, so they publish articles claiming there is not enough data, or that any success is a placebo effect. In my opinion, they are terrified by a new solution that completely avoids the need for neurologists or drugs. If you view the patient testimony videos above and other websites, you might agree with me. Canadians, especially post messages to fire their “neuro” and find an interventional radiologist or vascular surgeon to get the CCSVI treatment, even if ⅓ of the recipients may not see improvements. Here are some of those articles:
The Facebook Page “CCSVI-in-multiple-sclerosis” is tracking CCSVI naysayers and here is one
This is a “note” on Dr. Paul O’Connor, a neurologist and consistent critic of CCSVI, and it points out all of his ethical conflicts of interest regarding his objectivity towards CCSVI vs drug company interests. Examples include drug funding, being a drug consultant, financial disclosures inlcuding being the recipient of numerous grants from drug companies, etc.. READ all the comments.
https://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/canada-what-you-need-to-know-part-3-dr-paul-oconnor/430393377210
Reuters Article July 15, 2011 Citing only Neurologist & MS Society attacks on CCSVI - very biased
http://www.reuters.com/article/2011/07/14/us-blood-vessels-ms-idUSTRE76D4NV20110714
Long Interview with Dr. Bulent Arslan - July 15, 2011
http://www.ksat.com/health/28564250/detail.html
Press Release, Article and Response to New Brunswick Province, Canada Medical Society telling local province government not to spend planned $250,000 to assist residents having CCSVI treatment outside Canada. June 10, 2011
Article: http://dailygleaner.canadaeast.com/cityregion/article/1414041
Copy of actual press release and response from leader in C.C.S.V.I. - I.V.C.C.
https://www.facebook.com/notes/ccsvi-ivcc/message-to-the-new-brunswick-medical-society/166130073451050
Follow Up Article containing comments from CCSVI supporters:
http://dailygleaner.canadaeast.com/cityregion/article/1414447
Quote from above article from CCSVI supporter:
"I would like the treatment to be studied and at least given consideration. Right now, what I see is that people are speaking out against (the liberation treatment) to be very cautious. If I was (overly) cautious two years ago, I'd be in a nursing home right now."
Article with Study from Univ. of Birmingham, AL - Feb. 15, 2011
http://www.examiner.com/science-news-in-birmingham/uab-research-eliminates-one-multiple-sclerosis-cause
2011-01-29 - CCSVI Critic Dr. Barry Rubin
Here are notes from CCSVI patient who attended with his comments
https://www.facebook.com/notes/ccsvi-in-ms-toronto/dr-barry-rubins-public-lecture-on-ccsvi-follow-up/10150124144259919
“Study” That Indicates CCSVI is NOT a Cause of MS
Written by Neurologists in “Annals of Neurology” Journal - the “Potential Conflicts of Interest” section lists how most of the authors have received funds from drug companies.
http://onlinelibrary.wiley.com/doi/10.1002/ana.22228/full
Rebuttal article in “About.com” blog
http://ms.about.com/b/2011/02/13/ccsvi-does-not-cause-ms.htm
MedicalMyths Blog Opposing CCSVI - This blog is opposing CCSVI and is written by a doctor. Even though it is opposing the comments and arguments at the bottom of the pages are pretty interesting.
http://medicalmyths.wordpress.com/2009/11/24/the-zamboni-myth-ccsvi-surreal/
http://medicalmyths.wordpress.com/2011/01/15/zivadinov-proves-zambonis-ccsvi-does-not-exist/
Medical Article Abstract DownPlaying CCSVI - Published by a Dept of NEUROLOGY in Germany Feb, 2011 - Note: Fairly bad translation to English
http://highwire.stanford.edu/cgi/medline/pmid;21296899
Article in Internal Medicine News published in the Neurology section - Feb. 6, 2011
http://www.internalmedicinenews.com/news/neurology/single-article/conflicting-ccsvi-data-lead-to-call-for-new-research-united-message/713c8924c8.html
May 11, 2011 Editorial in “The Telegram” from St. John’s Canada critical of CCSVI.
They apparently had a series about CCSVI unraveling, but all the quotes are from neurologists who are afraid of losing the MS cash cow. Also accused Dr. Zamboni of bias because he received monetary support from doppler maker Esaote, who helped him develop the Zamboni protocol diagnosis techniqe.
http://www.thetelegram.com/Opinion/Editorial/2011-05-11/article-2496479/New-doubts/1
BUT, here is a great May 11, 2011 rebuttal from a Canadian MP, Kirsty Duncan - they wouldn’t publish her letter, so here it is...
http://kirstyduncan.liberal.ca/blog/unpublished-letter-to-editor-on-willful-blindness/
“Heffernan argues that human capacity to ignore what is in front of us is staggering. A Harvard study asked subjects watching a basketball game to count the number of passes; no one noticed a woman in a gorilla suit standing at centre court for nine seconds.” Duncan compares the editorial to this human trait to have “willful blindness”
CCSVI & MS Information Websites:
CCSVI Alliance - at CCSVI.org
www.ccsvi.org This website is probably the most thorough on documents about CCSVI. They also have a Facebook page.
List of CCSVI peer reviewed articles: http://www.ccsvi.org/index.php/advanced-topics/published-articlesmaterials
National CCSVI Society - Canadian - http://www.nationalccsvisociety.org/
Has neat Weekly News Digest at http://paper.li/CCSVI_Society/1306484186# It aggregates CCSVI news from Twitter feeds. NCS is a leader in CCSVI advocacy, research, and education support for Canadians. Our mandate is to serve as a resource for individuals with and at risk for CCSVI, their families and caregivers, government, the public at large, and medical and research communities.
CCSVI Foundation - Canada - founded by man who had MS and improved after CCSVI
Steve Garvie created the foundation after having the angioplasty-type surgery more than a year ago.
www.ccsvifoundationcanada.org Barrie, Ontario, Canada - Good example of event marketing approach.
They feature CCSVI Information seminars in the Ontario area, and one speaker is Dr. Sandy McDonald.
Short article on their first 3 CCSVI patients scheduled to go to Rhode Island for treatment:
http://www.simcoe.com/news/article/1007488--first-patients-treated-by-ccsvi-foundation
Video seminar with with Dr. Mark Haacke, Dr. Teri Jaklin and Dr. Joseph Hewett
discussing "stenting" and " imaging" on patients.
http://www.youtube.com/watch?v=nNXBz95CBtc
Wikipedia Overview page on CCSVI
http://en.wikipedia.org/wiki/CCSVI
National MS Society CCSVI page
This national group initially resisted the concept of CCSVI and many MS patients do not trust them and have formed separate CCSVI Foundations to fund CCSVI research. The pressure on this group was so intense, they now have funded several CCSVI studies and have this CCSVI page - keep in mind they still have the mindset of drug therapy and control of MS patients by neurologists, so you can identify possible bias in their statements or study results. There is a LOT at stake if MS patients find they receive better results without neurologists and expensive drug programs, and also if MS patients switch from this society to pro-CCSVI groups, which may be happening. A quick view of the panel members who selected the MS Society funded studies shows that almost ALL of them have “neuro” in their title or employer title. You will notice the “studies” were selected by a panel of mostly neurology experts, but not patients, nor any of the experienced CCSVI providers we have listed in this document.
http://www.nationalmssociety.org/research/intriguing-leads-on-the-horizon/ccsvi/index.aspx
msrc.co.uk GREAT CCSVI Page on CCSVI General Information.
http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2955
Scroll down the entire page to see all the video sources. Most were clinical discussions, not patients. Includes video interviews with Dr. Zamboni and Dr. Sclafani at Sept, 2010 conference and July, 2010 conferences. Other video interview links.including MANY videos of panel discussions at an April, 2010 CCSVI seminar held by the MS Society of Canada. (Note: This was early in 2010, and some speakers may be biased or defensive about CCSVI - during that time, many MS patients were angry at them for not focusing on CCSVI. (I have not watched the videos yet).
Canadian Institutes of Health Research (CIHR)
Search list of CCSVI documents on CIHR website. Caveat is that some people claim the studies and priorities are biased against CCSVI due to drug industry control of selection panels.
http://search-recherche.gc.ca/s_r?t3mpl1t34d=1&s5t34d=cihr&l7c1l3=eng&S_08D4T.1ct57n=search&S_08D4T.s3rv5c3=basic&S_S20RCH.p1r1m3tr5cF53lds=diseasetype%2Caudience%2Cinstitute%2Cdocumentkind%2Ccollection&S_S20RCH.l1ng91g3=eng&S_F8LLT2XT=ccsvi
NICE (the UK National Institute for Health and Clinical Excellence) has announced the timetable for its guidance on treatment for CCSVI.
http://www.nice.org.uk/ - search on CCSVI
On July 14, 2011, the NICE Committee on CCSVI met, and they will publish findings later
http://www.mstrust.org.uk/news/article.jsp?id=4829
And, here is the NICE guidance page on CCSVI - they use BIG words like “Percutaneous”
http://guidance.nice.org.uk/IP/891
Here is the article from MSTrust in the UK - READ all the comments
http://www.mstrust.org.uk/news/article.jsp?id=4690
Here is one comment on the mstrust.org article:
Name: Tim M
I do not understand the concerns of the neurologists, if your blood is not circulating then get it fixed. I have a diagnosis, Zamboni protocol type B (significant stenoses of both Internal Jugular Veins and the Proximal Azygous). Angioplasty certainly would certainly be helpful, if not a remedy, my concern is that re-stenoses seem to be very frequent and to occur quite quickly. So there is a real need to develop new stents of correct lengths and diameters, and that do not risk moving once placed. Another alternative is surgery, cutting out the stenosi and stitching the vein ends back together, or replacing lengths of vein. I do think that the correct approach should be Eccocolordoppler diagnosis first (Zamboni Protocol), then Angioplasty surgical review, then neurologist. Get the blood flowing!
General website for “Finding a Doctor for CCSVI”: - patients enter info of doctors anywhere in the world they recommend and they are listed in a custom google map. http://ccsvi-multiple-sclerosis.com/
Patient-experience.com page on CCSVI & MS
http://www.patient-experience.com/index.php/ms-and-ccsvi-the-state-of-play/
Facebook CCSVI and MS Pages
Clinical & Other Studies on CCSVI
CCSVI is not an approved treatment for MS in either Canada or the US (yet) - there are four clinical studies in the US, and a possible fifth recently announced by an Interventional Radiologist in Miami: The NIH studies are listed here and we will add the missing details soon.
Univ. of California, San Francisco - $2.4-million grant for CCSVI studies - Feb., 2011
http://ccsvimexico.com/ccsvi-research-at-ucsf/
Stanford University, Calif Clinical Study - Here is a direct link to a clinical study’s director at Stanford University: They were an early CCSVI provider and had a death resulting from a stent that broke loose in a jugular vein and dropped into the patient’s heart.
http://biodesign.stanford.edu/bdn/people/mdake.jsp
650-725-5202
Michael Dake (Stanford University)
300 Pasteur Dr.
Stanford University is now conducting a study on CCSVI and is accepting applicants, but is not making actual appointments Michael Dake is Chief of Interventional Radiology at Stanford and is a major contributor to the development of vascular stents.
University of Buffalo, SUNY - New York
San Diego
Chicago area
National MS Society page on CCSVI - has links to many studies
http://www.nationalmssociety.org/research/intriguing-leads-on-the-horizon/ccsvi/index.aspx
2011-02-12 - Chinese Website Article about Research Paper on Neurotransmitter levels in MS Patients
This article comes off as trying to say reasons other than CCSVI are the cause of MS, but one commenter on YouTube said the “area of the brain” mentioned is JUST ABOVE the jugular veins, which , when blocked, are the CCSVI condition that seem to be a major cause of MS. ALSO, notice that the last line of the article clearly pushes the idea that DRUGS should be used to “raise the levels of noradrenaline in the brain”.
http://news.xinhuanet.com/english2010/health/2011-02/12/c_13728943.htm
CTOS Treatment in Chili - A Doctor in Chile has defined a treatment similar to CCSVI but it focuses on “opening the neck muscles” - the blog and website are in Spanish however. The source of this info is:
http://ccsviclinic.com/index.php?title=W:CCSVI_Clinic_in_Chile
In the spanish speaking area, the blood reflux in veins (CCSVI) was detected before the CCSVI publications, and was corrected opening the neck muscles instead of using angioplasty. The condition in which neck muscles produce vein reflux is called CTOS (Cerebellar Thoracic Outlet Syndrome) and according with Dr. Noda it is the main cause of vein reflux in MS. The doctor involved in this research in Chile is [1]:
Dr. Raul Poblete Silva - calle Padre Mariano 103 office 204
comuna de Providencia - Santiago de Chile - fonos 2354714 y 2356564.
Blog personal: http://cirugiavascularactual.blogspot.com/
At this moment there are 20 operated persons. No problems have been reported. There is a facebook group following them:;
http://www.facebook.com/notes/para-apoyar-el-tratamiento-de-liberacion-en-esclerosis-multiple-en-mendoza/listado-de-pacientes-con-em-operados-de-sot-ccsvi-a-la-fecha/124532144261409
Recent Articles (2011)
Update on presentation to Canadian Parliament on CCSVI (Feb. 9, 2011)
Duncan said 12,500 "liberation" procedures have been performed worldwide in more than 50 countries, and that "80 to 97 per cent of MS patients show one or more venous abnormalities." "Half of our patients in southern California are coming from Canada," Hubbard said. "That's just not right, especially when it's being prevented by a very small number of angry neurologists in Canada."
http://www.montrealgazette.com/health/specialists+competition+Canadian+patients/4246308/story.html
Conferences & Events
- International Symposium of Endovascular Therapy (ISET) convention late February, 2011 in Miami - attended by Dr. Zamboni, and where a fifth clinical study was announced. Paper was presented by Dr. James Benenati, M.D., medical director, peripheral vascular laboratory, Baptist Cardiac & Vascular Institute, Miami - he is starting a clinical study and is overwhelmed with calls.
Accreditations and Professional CCSVI Assocations
Accreditation by the Intersocietal Commission for the Accreditation of Vascular Laboratories
http://www.icavl.org/icavl/index.htm - Used by Vascular Institute of Florida
Board certified Vascular Specialists - need info
International Vascular Surgical Society. - co-founder is Dr. Jon M. Weslet at Vascular Specialists in Orlando
ISND - International Society for Neurovascular Disease
CIRA - Canadian Interventional Radiology Association - CIRAWEB.org
They endorsed the SIR Position Statement on Interventional Endovascular Management of CCSVI
http://ciraweb.org/drupal/en/news/cira-endorses-sir-position-statement-interventional-endovascular-management-chronic-cerebros
| About the Canadian Interventional Radiology Association Thanks for becoming a fan of the Canadian Interventional Radiology Association! This page will feature the latest news from CIRA and is intended to be a space to connect with others interested in interventional radiology. Readers are encouraged to provide feedback to [email protected]. You can use the "Share" link to tell your friends about this page. Interventional radiologists are physicians who specialize in minimally invasive,... (read more) |
| [email protected] | |
| Phone | 514-282-2744 |
| Website | http://ciraweb.org |
Other Links Related to CCSVI and MS
Site where much of Dr. Zamboni’s research papers can be found as well as additional information on CCSVI: http://www.fondazionehilarescere.org
CCSVI in Multiple Sclerosis – Facebook page with lots of discussions as well as information about CCSVI (might want to start with Notes section):
http://www.facebook.com/pages/CCSVI-in-Multiple-Sclerosis/110796282297
Great site that is supporting CCSVI research, and also has lots of valuable information: http://www.direct-ms.org
Chronology of early research linking between circulation and the development of MS through to the research done by Dr. Paulo Zamboni and his uncovering of CCSVI: http://ccsviworldwidevictory.com/CCSVITimeline.aspx
Two sites where individuals who have been treated for CCSVI have posted information about their treatment and some have posted before and after videos: http://www.facebook.com/pages/Post-Liberation-Updates/122603281106215
http://www.thisisms.com/ftopict-8346.html
This Is MS website – extensive discussions about CCSVI – towards the bottom of the forums page select the Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI) http://www.thisisms.com/forums-search.html
2011-02-17 Canadian MP Requests Parliament approve CCSVI - article
http://www.wawa-news.com/index.php?option=com_content&task=view&id=8159&Itemid=99999999
Celebrities with MS
Meredith Vieira’s husband, Richard M. Cohen
http://en.wikipedia.org/wiki/Richard_M._Cohen
http://en.wikipedia.org/wiki/Meredith_Vieira
Montel Williams
CNN TV interview with Montel regarding his MS, marijuana treatments and also CCSVI - June 15, 2011
http://am.blogs.cnn.com/2011/06/15/montel-williams-talks-ms-medical-marijuana-and-experimental-surgery/
IMCA modified Racer Little Suamico's Sean Jerovetz - June 3, 2011 article - GreenBay WI
http://www.greenbaypressgazette.com/article/20110603/GPG0202/106030528/Joe-Verdegan-column-Jerovetz-not-slowed-by-battle-multiple-sclerosis
- end -
copyright 2011 by Sunshine Medical Tourism. LLC and Vance Jochim
Boilerplate
If you use Facebook, I have created a new page, CCSVI USA to cover the CCSVI treatment for MS at http://on.fb.me/ccsviusa . Just posted info about the new $48,000 MS pill vs the average $10,000 cost for CCSVI treatments. Good luck.
Boilerplate on finding CCSVI Training (posted ccsvi alliance discussions 4/30)
I would like to know of sources for training in CCSVI diagnostic and surgical procedures. I know about the Zamboni protocol training at BNAC and that there was a surgical training in Poland last year, but who is doing it now in North America or anywhere in the world. It seems the biggest barrier to CCSVI treatment may be backlogs of experienced providers, so where do the newbies go to get correct training?
Boilerplate on finding CCSVI providers
Go to the http://www.thisisms.com/forum-40.html forum on CCSVI to get current info, names of practitioners. Search on CCSVI on Facebook, try Canadian pages first. Don't rely on general Google searches. CCSVI is changing too fast from new knowledge, so you need to use a source that is current on latest issues - try Dr. Hubbard at Hubbard Foundation in San Diego, Dr. Sclafani in NY, Dr. Hewett at Pacific Interventionalists in San Diego, or Dr. Dake at Stanford. Try CCSVIUSA on Facebook (me).
Comment to CCSVI bashing article - Globe and Mail
This is clearly a planted article by the anti-CCSVI neurologists. I have been researching CCSVI for 4 months by examining MANY YouTube video accounts by patients raving of improvements, and a few medical practioners now defining MS as a neurovascular degenerative disease, not an autoimmune disease. As a profession corporate internal auditor, I became intriqued with this field and CCSVI is the REAL DEAL, and your writer was clearly a plant by the neurologists and drug companies that stand to lose the MS cash cow. I have personally talked to local MS patients after receiving the CCSVI treatment, and many improved. There are risks of "restenosing" which requires second or third treatments but that is well known. Another example of bias is the seven "CCSVI clinical studies" funded by the US MS Society. They are all being conducted by neurologists, not interventional radiologists. MS really is no longer a neuro disease, but a vascular occlusive condition. Once the blood flow from the brain is improved, most patients feel much better than before. You really have to get out and watch the patient YouTube testimonies. See my Facebook page CCSVIUSA .
Comment re CCSVI article in the UK MStrust.org
I am a yank (aka overinsured american per James) and write the CCSVIUSA Facebook page. My online research of patient and doctor videos and blog postings indicate here in the US, only about 5-10 doctors, mostly interventional radiologists, can talk about all the conditions that cause restenosing. Causes include using balloons that are too small (defined as not being aggressive), not treating valves in the veins that may need “valvuplolasty” (also known as a “stenotic or stiff valve” and mostly related to arterial valves) which may be causing some restenosing, not knowing where to place stents, not knowing which brand or type of stent to use in veins (since stents were designed for arteries, not veins) not having a proper CCSVI protocol diagnosis, or not knowing how to "snake" a catheter around some irregular bends in veins, etc. There is one US clinic that claims a 1% complication rate now, and others may be at that level, but the information is fragmented. Best bet is to find an interventional radiologist who has treated 100-300 patients and also attends the various CCSVI specific conferences to share and learn more. Unfortunately, since Canada, Australia and UK government health systems don’t provide CCSVI treatment now, their doctors will be the last to learn how to do it well.
