‘Cure’ for Multiple Sclerosis Promising, Trials Coming soon!!!
Zamboni's theory is that blockages in the veins leading from the head may cause iron deposits to develop in the brain. These deposits may cause Multiple Sclerosis.
A few months ago we mentioned how Paolo Zamboni developed an amazing possible “cure” for Multiple Sclerosis (MS) that’s based on a radical new theory of what causes the condition. There has been rampant speculation inside and outside the medical community as to whether Zamboni’s theory and treatments are sound. Now, at least some of that speculation can be put to rest. A recent randomized study out of the University of Buffalo supports Zamboni’s theory. Not only that, but the University plans on starting a trial to test Zamboni’s treatment on a small group of patients. It’s too soon to know if this will confirm Zamboni’s results, but there’s no doubt that this is an exciting moment in the MS community. Is a cure finally within reach?
The University of Buffalo’s Neuroimaging Analysis Center (BNAC) has found that 55% of those suffering from Multiple Sclerosis have reduced flow in the veins leading from the brain. This was the first blinded clinical study to examine connections between Chronic Cerebrospinal Venous Insufficiency and MS which were suggested by Zamboni. The University of Buffalo examined 500 adults and children (280 with MS) and found that while 55% of those with MS had signs of CCVI, just 22.4% of those without MS showed similar signs. This suggests that CCVI might indeed have some link to MS. To be sure, BNAC is pursuing further studies and has plans to begin a limited experiment on just 30 MS sufferers to see if venous treatments will relieve symptoms of the condition.
MS is a truly awful condition which often enacts a large toll on the physical and emotional health of those that have it. It’s also generally considered to be an auto-immune disease with a genetic bias, whose causes are somewhat nebulous. Zamboni’s theory that CCVI increases iron in the brain and that this is what causes the MS condition is definitely “outside the box”. Yet, his simple treatment (a angioplasty style stint in the veins leading to the brain) has had miraculous effects. If Zamboni is right, it lets one hope that other seemingly complex and perhaps unsolvable medical conditions may have effective answers just waiting to be found.
Of course, before we can start trumpeting Zamboni’s CCVI based treatment for MS, his work has to be verified. BNAC has taken a large step in that direction. They have a sample size that is almost an order of magnitude larger than Zamboni’s original study. Each subject was scanned on the head and neck via ultrasound. They performed MRI scans on those subjects with MS to measure iron deposits, and took genetic samples. While the doctors and patients were all aware of the MS status of each individual the test still qualifies as single blind as the analysts of the data were not notified of that information. A full report of the study will be made to the American Association of Neurology in April 2010 (about one year after the trial began).
Comparing rates of CCVI and MS symptoms, BNAC found that the degree of restricted blood flow seemed to have some correlation to the progression of symptoms. In other words, CCVI and MS may not only be linked, worse cases of CCVI may predict worse MS symptoms. To test this connection and increase their sample set, BNAC is recruiting another 500 subjects for a second round of the study (officially known as the Combined Transcranial and Extracranial Venous Doppler Evaluation or CTEVD). Those who wish to apply for the study should go here on the BNAC website. Fair warning, due to lack of funding the CTEVD study costs subjects about $4500 and it provides no medical benefit.
BNAC is also planning to perform a very limited study (just 30 people) on the efficacy of angioplasty on treating MS symptoms. Subjects will undergo extensive ultrasound, CT and MRI scans, and plenty of neurological examinations. They will also be given an intravenous angioplasty to treat venous narrowing and then monitored to see how they improve. Those who wish to learn more about the study should go to this page on the BNAC website.
As always when dealing with an illness that doesn’t seem to have a satisfying solution, there is considerable controversy surrounding the potential for a new cure. The US National MS Society has cautioned its members against rushing to a new treatment before it is thoroughly tested, For his part, Zamboni seems to be working with NMSS to keep patients on their immunomodulatory prescriptions (standard MS treatment) while the details of the CCVI-MS link are explored. According to the NMSS Zamboni’s own wife who was one of the first patients who underwent an angioplasty style treatment for her MS and who has not had MS symptoms for years, remains on her standard immunomodulatory medications. BNAC has made it very clear in its website (through a recent update) that its clinical studies are not treatments for MS and that the CTEVD study does not provide subjects with any medical benefits. In other words, as hopeful as Zamboni’s work may seem to be, the medical professionals are playing it safe.
Clearly those with MS are not so inclined to a safety-first attitude as those without the condition. Even a cursory Google search on the subject reveals many demanding and seeking venous solutions to their MS condition. This is not unlike the demand for stem cell treatments in the US which has furthered the medical tourism industry. The lessons to learn here is that there is an ever increasing pressure on the medical/scientific community to find effective treatments for all ailments as quickly as possible. Also, all barriers that might inhibit the speedy arrival of treatments, whether they are political, bureaucratic, or geographic, are going to be vigorously opposed by the associated survivor/sufferer community. Luckily for everyone on both sides of the pressure there are trends in technology which may accelerate the scientific process and yield faster results. For now, we do have to wait to see if CCVI will yield a cure for MS, but it’s certainly not too soon to hope.
That's an interesting article, but wow, it veers around a lot. Kind of like most of us when thinking about the implications of CCSVI, I suppose.
Cure is a loaded word, and dangerous to throw around lightly with something like MS that doesn't lend itself to a straightforward cure. Zamboni himself says that vascular abnormalities may be a factor in MS and that treating those abnormalities may have a positive effect on MS. He doesn't talk about cures and he does say more research is needed, although he also advocated for compassionate treatment, at least for those with SPMS and PPMS, in one of the extended segments on W5 TV.
What does it mean to cure MS? Stopping the disease mechanism is one aspect and a very important one. It would be wonderful if treating CCSVI could do that, but more rigorous and longer-term measurements are needed before we can know that. Many people with MS have suffered permanent damage that cannot easily be reversed even if future damage is stopped so we also need strategies for neural repair.
The BNAC study found that 55% of people with MS had vascular abnormalities, which is quite a bit less than 100%. Some of the remaining 45% may be people mis-dx'd with MS. Some of the difference may also be due to the fact that the right protocols have not yet been developed to identify all the relevant vascular abnormalities. But it does also suggest that CCSVI may not be the answer for everyone with MS.
That said, I think we are all hoping and praying that there is some substance to this theory. There are starting to be more studies, both trying to validate the correlation between CCSVI and MS and looking at the potential effects of treatment. You may be interested in the W5 TV segments and an upcoming webcast (tomorrow) that are described at http://www.medhelp.org/posts/Multiple-Sclerosis/CCSVI-f-u-TV-segment-on-Canadian-W5/show/1216239
Thanks sho for your balanced comment, (I have been following your CCSVI journal with interest).
I believe that your comment has highlighted many of the questions that need answering and that further testing or retesting of the people involved in the groups will answer the discrepancies in test results between researchers world wide to date. For example the group of people without venous problems will need to be followed up as it may be that there are times when the veins are functioning, which indicates a possible valve or flap that is dysfunctional but not permanently dysfunctional. And another example needing followup is for confirmation of the diagnosis of MS in all the patients, most importantly the patients with out obstructions. I believe the data so far for the first trail at BNAC has not been fully analysed so a lot of mis-beliefs have been circulating which is damaging the process and fuelling allot of comment because of this speculation. I hope the next media release will address this.
The possibility that CCSVI links to other diseases is food for thought.
Professor Schelling who found blood flow drainage problems all those years ago (and was turned down for research funding around the world) is fortunate to see this news surface again and that technology is giving it credibility within his lifetime!
Excellent also to see that Kuwait's Government is to test and angio with conditions their population of PWMS! Watch that space!
I think it is stupid now that they expect you to choose a "best answer" to your question! It's now just like yahoo answers..ppl are just going to answer questions now so they get lots of points! Whereas before, people took there time just because they care.
I am very disapointed that it has gone this way and thought this forum was allot better then any other forum! Now it is the same!
Not going the wrong way at all!!! It's very, very important to discuss this information! Knowledge is power! You posted an article, Sho provided a great response to this information. Please don't be disappointed, it's all good. Quix confirms or corrects our information all the time, it's what keeps us grounded and factual.
We never let anyone get mislead, it's what stands us apart from the others. YOur thoughts are right, we are a lot better than others (of course I'm biased ha/ah).
No worries on this, pleeeease. We should know what is printed, the good bad, incorrect, etc. It's good you posted it.
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