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382218 tn?1341181487

what does YOUR neuro think about CCSVI?

Last week I asked my neuro for his opinion on CCSVI.  It was the first time I'd seen him since the W-Five episode and the Canadian media going nuts about it.  He was a little chattier about this than I expected.  

As I did expect, he was reserved in his view, stressing that this has not been proven to be the or a cause of MS; that the testing method itself is experimental and there is not agreement yet on such mehods and what test results actually mean; that the idea of a vascular aspect to MS is not new at all though this particular theory is novel; that there are concerns about Zamboni's study design; that such results need to be duplicated in large, properly designed and controlled studies before drawing any conclusions; that there may be ethical issues with facilities offering the testing and treatment for big $$$ while this is all still highly experimental; that he is discouraging patients from seeking this out until more information is available.  

He said that while this theory is inconsistent with most of what is currently known and understood about MS, he did state that despite all this, : "One wants to keep an open mind."  

He told me he is involved with Dr. Emery's (neuro-radiologist) proposed study on the testing method and that if it goes ahead, I could apply to be a participant.  

A while ago I asked my GP for her opinion and she didn't know a whole lot about it, but had recently read a paper that said that at the 18 month follow up of those Italian patients, there was no significant improvement and for many, symptoms reverted back to what they were prior to the 'liberation' treatment.

What do your docs think about all this??
13 Responses
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1453990 tn?1329231426
Most of the studies have not been able to duplicate Zamboni's results.  That is a Red Flag.  They need to develop patient selection criteria and get a few payients to follow up on for 10 - 15  Years.  Look hop long it took to get the CRABs to market and they are not surgically invasive.  I they diagnosed me today, I'd start a CRAB, but I'm not sure how bad I'd have to get to even consider CCSVI.

Bob
Helpful - 0
704043 tn?1298056844
lol  go  ahead  and  run!!    we  needed  to hear it--  thank--you!!

hope your  ok  and still  doing  alright.       tick
Helpful - 0
333672 tn?1273792789
As Tick pointed out, I did have balloons (not stents) at Stanford.

There is a recent article in the Wall Street Journal that gives an overview of the CCSVI treatment at Stanford.

MS Program Halted Amid Controversy: After Patients Push for Experimental Treatment, Doctors Conclude It’s Too Risky

http://online.wsj.com/article/SB20001424052748704211704575140313904335240.html

If the link doesn't work, put the article title into Google News.

One thing the article does point out is that "There is no evidence that the stents contributed to the hemorrhage" in the woman who died of a stroke, although certainly the blood thinners she was on post-procedure would have exacerbated the effects of the hemorrhage.

Another thing to think about is that I think the MS neuro and the interventional radiology research cultures are radically different. This Scientific American blog post (Do Cardiovascular Implants Get Enough Testing?, http://www.scientificamerican.com/podcast/episode.cfm?id=do-cardiovascular-implants-get-enou-10-01-01) points out that

"Researchers evaluated the FDA premarket approval process for 78 high-risk devices, such as pacemakers, stents and implanted defibrillators. They had assumed that these types of devices should and would be subject to random double-blinded studies with controls over an appropriate time-frame to investigate safety and efficacy.

"But for 51 of the devices—65 percent—approval was based on a single study. Only 27 percent of studies were randomized, and only 14 percent were blinded. Only half of the devices were compared with controls."

I think too that it is probably far easier to see both the problems and the effects of treatment with vascular disease than something like MS where the cause is unknown, there are no biomarkers, the disease course is highly variable, and the effectiveness of the treatments approved to date has only been shown in statistical analyses of larger numbers of people.

I also think that when an interventional radiologist sees a severe impairment of blood flow in black and white, they don't find it odd to treat it with the tools of their trade, which is permitted by the FDA. Interestingly, insurance companies, at least in the U.S., also consider restrictions of blood flow in veins over a certain percentage to be medical problems in and of themselves and will cover treatment to open them up. The harder part for someone with MS would be to justify the tests to find the stenosis.

Although Dr. Dake is no longer performing procedures, there are at least a couple interventional radiologists in New York state who are doing balloon angioplasties (which, although not risk free and not so common in the internal jugular veins, are fairly routine procedures; they do, however, seem to have a fairly high rate of restenosis). There are also doctors outside the U.S. treating CCSVI.

Anyway, I think the procedure has had a positive effect on me. It's not been a miracle cure, but I am reasonably awake and alert whereas before I was like the walking dead. I felt like I imagine people who know they are getting Alzheimer's feel--like I was falling down a black hole or turning into an empty shell.

Whether the positive effects are a placebo effect or not is impossible to say in one person in a disease as variable as MS after a surgery-like procedure when surgery is known to be one of the most powerful inducers of the placebo effect. But I wouldn't take it back and I willingly took the unknown risk for a possible benefit over the nearly 100% chance of continual decline for doing nothing (my MS has not historically had obvious remissions so once something comes, it might improve a little, but it doesn't go back to the way it was before; also, I was in a clinical trial, which didn't seem to be doing much good, and my neuro told me I had no other viable options).

CCSVI and MS is a complex question and we don't yet know what will come of it, but it certainly elicits strong emotions, both in patients, their families, friends, and loved one, and in doctors.

Well, I'm running on again so I'll stop here.

sho
Helpful - 0
667078 tn?1316000935
My Neurologists think it is nothing.
Helpful - 0
382218 tn?1341181487
Letter to the Editor in today's Ottawa Citizen.  Hmmm.  I'm not sure that this treatment has been "peer reviewed as nauseum."  Is that the same thing as replicating results in a controlled study?  I don't think it means that.


http://www. ottawacitizen .com/opinion/treatment/2738212/story.html

New treatment for MS

The Ottawa CitizenMarch 29, 2010  It has been several months since CTV's W5 program popularized the liberation treatment for multiple sclerosis. Dr. Paolo Zamboni of Italy has been to North America several times and his work debated, peer reviewed and discussed by the neurological and medical communities ad nauseum.

Almost six months later, and 80 years since the theory of chronic cerebral spinal venous insufficiency (CCSVI) was first proposed, Canadians are spending as much as $20,000 to be treated in other countries like the U.S., India and Poland. Why?

Our medical establishment and provincial health-care plans cannot put Canadians' health ahead of policies, dogma and priorities.

Hundreds of procedures have been done globally with resounding success. In Canada, we still cannot even be tested under our provincial health plans, let alone be treated.

Shame on Canada. Stephen Harper should show some leadership. The 70,000 Canadians affected by MS will remember this at election time and will be making our points on May 5 on Parliament Hill.

Andrew Katz,

Ottawa
Helpful - 0
704043 tn?1298056844
just   THINK  MAYBE  MIGHT WORK  4  SOME--  BUT  SO  MANY  TRYING  TO  MAKE MONEY-  
I   WOULD   NEED  PROOF    THAT  IT  WORKS-   WASNT  IT  SHO SHIN   HAD  IT DONE-   I  MIGHT HAVE   NAME  WRONG  BUT   SOMEONE  ON  HERE  HAD  IT  DONE..    
YOUR  GOING  ABOUT  IT RIGHT!    FIND  OUT  FIRST-   SAW  WHERE  GET  THIS  THE FIRST 15     YEARS  OF  OUR  LIFE  MAKES  A DIFF.  IF  WE  R   AWAY  FROM  THE  EQUATOR!!     WE  HAVE  GREATER  CHANCE   OF  GETTING  IT-


WISH YA THE   BEST       TICK
Helpful - 0
378497 tn?1232143585
They have called off the MS-related stenting in California b/c of concerns about its being applied outside approved uses and one death and a crisis that occurred after stenting. That said, some patients reported improvement, although UCSF MS specialists are dismissing that as placebo effect. There is a lot of skepticism, primarily among MS experts, but I think the jury remains out on this one until more data are in.

Bio
Helpful - 0
382218 tn?1341181487
bumping up and requesting that anyone who has a chance to discuss this with their neuro or other docs, to let us know their thoughts.
Helpful - 0
382218 tn?1341181487
interesting feedback so far.  anyone either dx'ed or undx'ed seeing a neuro in the next little while, would be interested in the responses you get if you have an opportunity to ask this question.
Helpful - 0
198419 tn?1360242356
When I asked, my neuro said "what?" I briefly explained. He kind of shrugged it off as if it wasn't significant.

I asked at the tailend of the appt. so maybe he didn't hear me? Or, he had no clue? I just don't know.

-shell

Helpful - 0
1045086 tn?1332126422
My neuro wasn't very hopeful but didn't completely dismiss the idea.  He didn't seem to think Zamboni's work was overly scientific or a large enough sample to mean much.  He thinks there will be a variety of causes/factors found that come into play and what we now diagnose as MS will eventually be classified as multiple similar but distinct disease processes.

I heard the Stanford treatments were halted after two "adverse events".  One patient died of a brain hemorrhage.  Another had open heart surgery to recover a stent that migrated into a heart ventricle.  I don't know if they are still doing any balloon procedures.

Mary
Helpful - 0
293157 tn?1285873439
Hi there.. I haven't ask, but next appt I will and let you know.

take care
wobbly
Helpful - 0
Avatar universal
I asked my Neuro about it during my annual check up in January, she asked me what it was! I explained to her what I had learned about it (from this forum) - she dismissed it but the med student who was sitting in on my appointment was very interested - hope for the future maybe?

Mand
Helpful - 0
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