Posted on by Mitch

A New Theory about the Root Cause of MS- Chronic Cerebrospinal Venous Insufficiency (CCSVI)

One of the frustrating realities of living with MS is that nobody has a clue as to its root cause. It’s hard to imagine that a cure is on the horizon when we don’t even understand why the disease exists. It seems that for the past 50 years neurologists have been telling newly diagnosed MS patients that the cure is “about 10 years away.” Sure it is.

There have been a lot of root cause theories presented over the years. None have survived the scrutiny of time and truth. This one probably won’t either, but who knows?

An Italian doctor by the name of Paolo Zamboni has discovered a correlation between MS and restricted flow in the veins that drain the central nervous system. Furthermore, he has used angioplasty to open up these restrictions in the veins of some MS patients, with apparent success. Dr. Michael Dake, of the Stanford School of Medicine, has been placing stents in the veins of MS patients, with similar success but also with more complications, a couple of them serious. Many patients of both doctors have stopped getting worse and started getting better.

Click here to watch an inspirational piece produced by CTV that does an excellent job of describing Dr. Zamboni’s CCSVI work. I find the tone of the piece a bit too optimistic, but again, who knows?

What is my take on CCSVI? I think the final answer will lie somewhere on a continuum between total fraud and a miracle cure. Here are three of the possible outcomes:

1.  Further independent studies by other researchers fail to replicate Dr. Zamboni’s results. CCSVI is thrown on the trash heap of failed MS breakthroughs, which is becoming a very tall heap indeed.

For me, unfortunately, this is the least desirable but most likely scenario. I don’t base this opinion on the facts of the case as much as I do on my experience as a long-suffering MS patient. Most great ideas simply do not pan out.

2. Some researchers are able to correlate some CCSVI cases with some MS cases. CCSVI continues to be studied, and a subset of the MS population benefits from new procedures developed to open up the stenosis (flow restrictions) in these veins.  More specifically, if only some MS patients benefit, it seems likely that it will be the more common relapsing remitting group, rather than the primary progressive group. This is a trend in MS treatment.

In my humble opinion, this is the second most likely outcome, and the second-most desirable one. Again, this is based on a gut feel from me, not a scientific argument for or against CCSVI.

3. Dr. Zamboni’s findings are confirmed by independent researchers. CCSVI is identified as the primary cause of multiple sclerosis. The world of MS research and treatment is turned upside down. We stop concentrating on developing new and expensive drugs that only treat the symptoms or secondary causes of MS. Doctors develop safe and effective ways to repair CCSVI in patients. Eventually, when a young person who would otherwise have been diagnosed with MS speaks with his or her doctor, the doctor will say something like, “We found the cause of your problems. It is a condition called CCSVI. In the past it was referred to as multiple sclerosis. I scheduled a procedure for you next week. Since we found this early we should be able to easily repair it, and you should have no lasting effects. Have a nice day, and a nice life.”

Naturally, I consider this the most desirable and least likely outcome of the CCSVI saga. Wouldn’t that be a wonderful thing though?

Just to clarify, even if scenario 3 comes to be, people like me who have already suffered significant damage to our central nervous systems will not see much, if any, improvement in our current conditions. We would simply stop getting worse. I need to stop getting worse, like, yesterday. Getting better can wait.

So, given all this information, what actions am I taking personally? I may very well subject myself to an experimental repair of a theoretical condition well before others might find it prudent to do so, simply because I’m on the doorstep of becoming a complete invalid. My risk/reward appetite is skewed away from the conservative and toward the aggressive, and I believe that to be appropriate given my circumstances.  I’ll try not to do something obviously stupid, but too much patience or indecision in this situation will yield a very predictable result.

Right now, as unlikely as I find CCSVI theory to be, it’s the best option I see out there, today.
 

Here are some more resources on CCSVI:

See my subsequent post  CCSVI- Is this the calm before the storm?

For a more detailed and very balanced discussion about CCSVI, see this overview by a fellow blogger:

http://www.wheelchairkamikaze.com/2009/11/ccsvi-vascular-theory-of-ms-separating.html

A comprehensive website put together by an MS patient, tying to gather together many of the online resources dealing with CCSVI:

http://healingpowernow.com/

A link to a study being done at the Buffalo Neuroimaging Analysis Center, attempting to confirm the findings of Dr. Zamboni:

http://www.bnac.net/?page_id=517

A link to the original publication of Dr. Zamboni’s findings:

http://jnnp.bmj.com/content/80/4/392.full

A patient message board, called This Is MS, where the subject is discussed in great detail:
http://www.thisisms.com/forum-40.html

Dr. Zamboni will publish a second paper any day now. I’ll put that link here when it is available:  Here it is:

http://www.ctv.ca/generic/WebSpecials/pdf/YMVA_4198_Zamboni_final.pdf

A Canadian Broadcasting Company piece on the University of Buffalo study (added 12/16/09)

http://www.cbc.ca/video/news/player.html?clipid=1359955050

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10 Replies to “A New Theory about the Root Cause of MS- Chronic Cerebrospinal Venous Insufficiency (CCSVI)”

  1. Thank you so much for gathering together these sites to explore. I just yesterday became aware of this development. I like your balanced approach to evaluating its promise. I also understand why you would choose to go ahead with the procedure. What is the upside? It might work. The downside? It might not work. Apart from the finances of this, it seems to me that the upside is more compelling than the downside. I too am weighing this and will inform myself with your links. Wouldn't it be something if you could arrest your downward slide? I have a strong belief in the ability of the body to heal itself when obstacles are removed from its natural optimizing process. What if more than arresting our downward slide, this procedure enabled the MS body to begin healing itself?
    Judy

  2. PBWY,

    There is a possible downside. Dr. Zamboni's angioplasty procedure has resulted in only temporary relief in some patients. The veins have re-stenosed over time. This requires additional surgery, and any surgery comes with some risk.

    Dr. Dake, at Stanford, has done about 60 procedures. One patient died two days later.
    The "official" finding is that it was coincidental to the stent placement, but one has to wonder.

    Another patient recently had a stent migrate from their jugular vein, where Dr. Dake had placed it, to his heart. This required open heart surgery to remove it. That's a major complication!

    But that still leaves 58 or so patients who have had the procedure, and may be benefiting from it. I know of a vocal few who have had excellent results, but since this is not a true clinical trial, there is no robust database of results to pour over. We only have anecdotal evidence from Dr. Dake's work.

    I agree with you. If we can stop the damage the body may start to repair itself. My modest expectation is that my body will only be able to do so much repair with all the damage it has sustained, but who knows?

  3. Thanks for your followup. I've now read your links and appreciate that the risk-reward ratio is more complicated than my simple upside/downside portrayal. Again, thanks for the wonderful links.
    Judy

  4. I've been reading everything I can find about this procedure since Nov. 21st but yours is the first site that has mentioned that a patient of Dr. Dake's died and another needed open heart surgery. May I ask where you found this information? I'd like to read more. Thanks!

  5. Anonymous,

    Here is a link to the TIMS thread about the patient who had the stent migrate to his heart:

    http://www.thisisms.com/ftopict-8928.html

    The above is a first hand account from the patient, so it is quite reliable.

    The death was a lady named Holly. Unfortunately I don't have a link to any threads with first hand details. All I have is second hand reports to the effect of:

    She initially underwent the Dake procedure, without any complications. When she returned to Stanford (from Arizona) for her two-month follow-up visit, Dake discovered further stenosis and did another endovascular procedure to place more stents in her veins. Two days later, while flying back to Arizona, she suffered a brainstem infarct. Apparently, she fell asleep during the flight, and couldn't be woken up.

    Upon landing, she was rushed to a nearby hospital and put on life support. Dr. Dake flew from Stanford to be by her bedside. Both he and the attending neurologists declared that her hemorrhage had nothing to do with the surgery that had been performed, and might have only been exacerbated by the blood thinners she was on as a result of the surgery. Her family agrees with this assessment.

    I'm not here to trash Dr. Dake. This is just the information I have from second hand sources. I have applied for his treatment, and if he is still allowed to continue after the latest issue, I'd like to hear directly from him about the situations, rather than rely on what I read on the internet. But what I've learned is definitely concerning, and would need to be adequately addressed before I would agree to a procedure.

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