Since Dr. Paolo Zamboni appeared on Canadian television W5 last week, I have gotten several e-mails and blog comments indicating that many of you would like to know more about CCSVI and the link to multiple sclerosis. I have taken your requests seriously and have pulled the original peer-reviewed papers and presentations about Dr. Zamboni's theory and the actual results on patients.
I am currently working on a series of articles that will present the findings and relevant details and expect to be posting these over the course of the next week or two, after they have successfully passed through medical review, which is the policy here at About.com.
I can tell you a couple of things right now.
CCSVI stands for chronic cerebrospinal venous insufficiency. Basically, this means that there are blockages and narrowing of some of the most important veins that drain the blood from the brain (and rest of the central nervous system) back to the heart.
The evidence from some studies in people with MS shows that these blockages lead the body to find alternate routes to shunt the blood out of the central nervous system. This leads to strange flow patterns, as the blood has to use other vessels. This is presumed to lead to iron deposits and autoimmune activity, which (according to this theory) accounts for the plaques that are found in MS patients.
If we look at this problem as a simple mechanical dilemma, it seems logical that opening up those closed or narrowed veins would then solve the problem. Blood would flow out of the brain as nature intended and everything would get back on track, right? And, in fact, that scenario was what was presented on Canadian television - a young man who had undergone "Liberation Treatment" to open up these veins gave an emotional testimony about how he had gotten his life back following the procedures. He spoke of a cure for MS.
Now, understandably, many of us want the same experience. We want to speak of the days when we "used to have" MS. We want to schedule a benign procedure that should fix our problems.
There is much more to all of this. I will continue my work to decipher the information at hand. Like everything else in MS, this is not simple. It turns out that there are different patterns of CCSVI which correlate to the different types of MS. It also looks like the "simple procedures" have risks or do not work for everyone.
For some of us, this just might be it - the solution to our MS. For others, this might not be relevant at all. There might be quite a few of us that fall somewhere in the middle of the spectrum, and we are left to make difficult choices. I don't know.
Let us be hopeful, but let us be rational as we continue to monitor these developments.
Watch the videos here (then come back and tell us what you think): The Liberation Treatment: A whole new approach to MS
And in the meantime everything on the market available as a treatment or therapy for MS has made me even more ill than I was when I tried it. When I’ve been saying for years that when I have these attacks it feels like my brain and spinal cord are filling up and ready to explode! So while this is pushed to the back burner while more testing is done…all of us with MS can only wait. Doctors should at least be looking at each of their patients again with the thought that it might be something as simple as unclogging veins. What harm is there in looking? What harm is there in fixing a problem that is there?
There shouldnt be any harm in looking, and if there is a blockage of blood flow and a dangerous build up of iron deposits, regardless of whether this is actually an MS cure or not, it would appear to be something that should be viewed as potentially serious enough to correct. But of course, there are billions of drug company profits at risk, not to mention the careers of countless medical providers, researchers, and MS support groups also at stake here. Lets be hopeful that this is the breakthrough we have all been praying for, that none of this gets in the way of finding a cure and that this procedure can be quickly made available to all who will greatly benefit by it.
I agree with Denise. There is no harm with meeting a cardiovascular specialist who can perform the tests. I am not waiting. All of the MS I tried my body rejected and Tysabri almost killed me. I want to get a head of the game as you can imagine if this is successful I might be able to stop more damage being done to my brain. I am grateful I have found such an office that is going to conduct the tests for me. I am bringing with me a copy on how to look for the CCSVI that I got from this website http://csvi-ms.net/files/multiple%20sclerosis-USG.pdf
We’ve waited this long; I think we can wait a little longer.
No offense meant to long-time sufferers, but testing is absolutely necessary before we can call it a cure. That’s the scientific way of doing things, and it is science we’re banking on. If certain surgeons do offer to “liberate” (and inform us of potential dangers), I think the desperate among us should not be prevented from participating in the surgery. With that said, I do believe that patience will help most of us in the long run.
I’ve not seen anything that explains how this has anything to do with spinal lesions well away from the brain. Anyone?
Thank you Julie for bringing this topic up and I eagerly await hearing more of what you have to say on this topic. I know your research is thorough and I’ve always respected your opinion on things. Mary Jane, if you read this, is there any way you could specify a little bit more about what type of cardiovascular specialist you sought out? Is there a specific type of sub-specialty in the field that I might try (theoretically) or would I start with general cardiology? Something tells me that a general cardiologist would not want to give this the time of day. Correct me if I’m wrong.
Daniel,
I’m with you on being confused about how blood flow in the brain is causing spinal lesions. Hopefully that’s something Julie’s analysis will be able to clarify for us.
I guess I’m fortunate. I don’t seem to have a whole lot of disease process occurring in my brain; mine appears to be primarily centered in my spine. I also know my symptoms starting appearing approximately a year after I was very sick with mono. I was so strong and healthy prior to that event; in my mind it’s hard to accept something like “blood flow’ as the cause.
I’m skeptical, frankly (but would love it if someone could prove me wrong)!
MaryJane,
I hope you will share with us whatever you learn from your experience. My best wishes to you and much Good luck!
The same way that you get lesions in the legs due to varicose veins. Same shape, same appearance, and it’s been noted (the similiarity) in MS brains via autopsy since the 1800′s.
Cardio’s won’t get near this, it is a speciality related to interventional radiologists.
Mary Jane,
You wrote that you found an office that would do the test for you. Could you tell me where it is? My nephew has been looking for a place to be tested. He has had MS for at least 7 years.
Thanks,
Bruce
Twenty-five years ago I was diagnosed with primary progressive MS. A year later I had all invisible signs of multiple sclerosis and I was walking with a cane. It often felt as if I were walking underwater. Going up and down stairs was almost impossible. In desperation, I began taking massive doses of vitamins. One of these was niacin.
Upon taking the niacin I would develop the “niacin flush” which would last for about twenty minutes. As I felt the blood rushing throughout my body, for that glorious twenty minutes, I would feel the MS lifting from my body. I would run up and down stairs, stairs I couldn‘t navigate five minutes before. I would grab my husband’s hand and we would walk around the block (yes, without my cane). We would put on our favourite record and dance like we hadn’t done in more than a year. Then the flush would disappear and the MS would take over my body once again.
No doctor has ever been able to explain why the niacin flush had this effect on me, but I always knew it had something to do with blood flow. As this niacin website states: “Niacin causes the capillaries in your body to get bigger…capillaries are the main way for your body to rid itself of toxins.”
http://www.mens-total-fitness.com/niacin-flush.html
When I watched Dr. Zamboni’s Liberation Treatment on television it finally felt like maybe there was a connection.
Spoken like a true doctor! My doctor is very skeptial too. I am living with MS and it sucks! I am very interested in this treatment and will do anything or go anywhere to have this done, even if it’s not proven. The chance is worth taking.
I to want to thank you Julie for bringing this subject up. Just yesterday someone sent me an article on CCSVI. I do have so many more questions. I will wait with great anticipation the results of your investigation.
I think like many other medical conditions, that MS is multifactorial. CCSVI may be one factor in a complex disease process. I have only been diagnosed for 18 months and the MS is fairly “silent” most days. But screening for this type of physical anomoly is simple and at the very least MS patients should be scanned and numbers compiled. Whether the procedure is then recommended could be formulated. Even if there is an improvement for MS patient’s (and not a “cure”) wouldn’t it be worth it?
The way the spinal column would get lesions is if the Azygous vein system has issues. However, they are noticing in the neck, the lesions in the neck have a blockage in the jugs almost perpendicular to lesions.
Lots to be learned!
As I am watching this I can not help but wonder if this also explains the supraclavical swelling I have that NOBODY has an explanation for.
Vascular disease runs in my family.
This is very exciting. Hopefully our doctors here will follow through and check this out.
oh maybe this is why there are leisons on the spinal cord
there are lesions on the brain….as time goes by the lesions spread to the spinal cord…the lesions on the cord are formed because of the lesions on the brain(maybe this happens as a result of the lesions on the brain!!!)
what can be checked is whether the lesions appear even after the blockage is removed!
they are actually testing it!
c’mon u say that many people might go jobless???
there are somany diseases that are without a cure…why should some people have all the suffering???
Thank you. This is one of the few web posts I’ve seen on this topic with factual information and without using the misleading term “cure” in the headline. I find your comments responsible reporting. We’re all hopeful. I have MS and I will continue to look at what the researchers find on this.
Marc makes some interesting points in this blog entry.
http://www.wheelchairkamikaze.com/2009/11/ccsvi-vascular-theory-of-ms-separating.html
The point he makes is that Zamboni uses angioplasty, not stents, to open up the veins. Veins get larger near the heart, so if the stent moves, it can go into the heart – not a good thing.
Even those people who have had angioplasty or a stent to open up the pancaked vein will still have neurological damage, and that takes a while to heal. It’ll take some time to see the benefits from such a procedure.
> As I am watching this I can not help but wonder if this also explains the supraclavical swelling I have that NOBODY has an explanation for.
Suzanne, that sounds like a goiter – you might need to have your thyroid checked.
I am watching this with interest. A couple of things that have not come out. Dr. Zamboni’s wife, I assume her Dx was RRMS? Mine too, except I haven’t had a relapse in three years i.e new symptoms that appear and then subside (but do have progressing gait problems substantiated with lesion activity as seen on MRIs).
Is Dr. Zamboni implying that no relapses mean the disease is “cured”?
Also, were there other results from the surgical procedure, such as improved functions (cognitive, physical, etc.)?
Dear Terence,
Thank you for taking the time to detail your medical history.
(I have cardiomyopathy + PPMS.) I happen to be very sympathetic to the idea that vascular insufficiency plays a role in MS, and this possibility has driven some of our research for the last few years. Your history of cardiac problems dovetails into it well, as you have guessed. Thank you for telling me about it.
Best wishes,
Prof. Kenneth J. Smith, Ph.D.
Head, Department of Neuroinflammation,
The Institute of Neurology (Queen Square), London
Following an abnormal MRV of the Head and neck, (but a normal MRI Brain and Cervical spine) I was dx with an anatomical vascular “deformity” in 2007. I had pulsatile tinnitus and enlarged jugular bulbs which the vascular surgeon felt were from issues with improper vascular drainage. Last year I was diagnosed with MS. One brain lesion, one spine lesion. Coincidence?
I am all for this.. My husband is 34 years old and currently on Beateron and he is fatigued every day all day. I say who cares about the risks let the choice be up to the patient. There are risk with almost all the drugs out there right now. I am praying to god this leads to something. Even if it does not cure Ms it might atleast make everyone feel better physically..
The following comments on the subject come from Dr. Jerry Wolinsky, director of the MS Research Group at the University of Texas Health Science Center:
—
This is an area that we have been following closely.
I have talked personally with Dr. Zamboni, first at this year’s ECTRIMS meeting in Düsseldorf where his work and the work of Dr. Zivadinov were presented in abstract form. I also discussed further findings presented by Dr. Zamboni about a week ago at the annual Charcot foundation meetings in Portugal.
What bothers me about the work is the claim that these vascular abnormalities are found in all patients with multiple sclerosis and in no one else. I know of no disease, other than possibly a few infectious diseases, where anything is absolute. This seems to be particularly true for multiple sclerosis which is such a heterogeneous process. I also have a difficult time understanding how this presumably congenital collection of venous anomalies is then associated with an obvious secondary immunopathogenesis over time. Even Dr. Zamboni agrees that there must be some secondary immunopathogenesis component or we would not have noted the substantial but incomplete benefit afforded by current approved and pipeline therapies for multiple sclerosis. Finally, my colleague pathology have a very difficult time connecting the vascular findings with what is known about the pathology of most patients with multiple sclerosis.
Nevertheless, we are following rapidly evolving information here closely. I will be traveling to Buffalo in the spring as a visiting professor invited by Dr. Zivadinov. I will look carefully at his state and approach at that time. We have also begun discussions with our colleagues in the stroke program here. They, like we, are considered to be among the best internationally dealing with stroke. Thus this is an important area for collaborative investigation that we likely will pursue at UT. Clearly it is important to either substantiate the findings of the investigators in Italy in an independent fashion, or to determine the reality of this observation quickly, least to many patients with multiple sclerosis have needless and expensive intravascular interventional surgery, or alternatively are denied its benefits.
There is one issue that is particularly important for you about the findings of Zamboni and his colleagues. While they note consistent abnormalities on venous Doppler flow studies that seem to stem primarily from the azygus venous system in patients with primary progressive MS with spinal predominant symptoms, on venous angiography, they note a very disturbed venous architecture training the spinal cord in all patients with primary progressive MS. Dr. Zamboni freely acknowledges that there is no possible way to reconstruct this aberrant venous system that seems to be typical of patients with spinal primary progressive MS.
Best Wishes As Always,
Jerry S. Wolinsky, MD
Bartels Family and Opal C. Rankin Professor of Neurology
Director, Multiple Sclerosis Research Group and Magnetic Resonance Imaging Analysis Center
The University of Texas Health Science Center at Houston
6431 Fannin Street
Houston, Texas 77030, USA
“Even Dr. Zamboni agrees that there must be some secondary immunopathogenesis component or we would not have noted the substantial but incomplete benefit afforded by current approved and pipeline therapies for multiple sclerosis.”
Indeed. One has to wonder why the CRAB therapies would have any benefit, or why bone marrow transplants or stem cell resets sometimes work.
I suspect that there are too many variables at play, yielding too great a variety of MS conditions for this new theory to alone be that “cure” we’ve all been hoping for. Maybe CCSVI has one part to play, but only for some patients.
Great discussion.
I have noticed that when I am in, or near, or just after an attack; I feel as though someone is grabbing me around the neck. It is as if someone is messing witht the blood flow to my head.
I complained about this to my inturnest long before I heard about CCSVI. My dad and his 2 brothers have all had vascular problems. I thought that I was inheriting that trate. NOw, I think that this CCSVI makes sense. I had already noticed a problem, and now I see that this correlation might really exist.
Does anyone else have supraclavical swelling? No one seems to know what is causing mine and the CCSVI makes a lot of sense to me.
MS will hopefully in the future be reclassified into very distinct and separate diseases based upon location of the interruption of venous flow. Each with tailored therapeutic benefits. Then it (the physical abnormality) will be scanned immediately following first exacerbation, identified as to location and type, fixed, and disability will be kept to a minimum thereafter, possibly in conjuction with better and less toxic drug therapies to tame the immune system from any further involvement.
Saying that the %’s in Zamboni’s small but engrossing study prove something that is scientifically substantial, OR, don’t show enough of a % swing to warrant further investigation, do all our fellow MS people a disservice. The truth lies somewhere in the middle.
And honestly, if someone is happy enough with their condition or experience to call it a “cure”, then be happy for them, because you won’t find that word in any scientific publications or press releases. To then lambaste a particular story because someone somewhere got a little excited to use the C word, is no reason to then say, “oh see they are calling it a cure there’s no such thing as a cure for MS, look at how many of the Liberation people still have MS”. The counter-argument is almost as ridiculous as the cure assertion in the first place. If you have a cold or flu, and I give you a “magic pill” that alleviates 75% of your suffering, with very little side effects, do you honestly CARE what I or anyone else calls it or labels it?
I have an appointment with my regular internal medicine guy on the Dec. 23. I have an inexplicable fast pulse. When I excercise, like going out and walking I feel horrible.
THIS is from people here in the US at Stanford who got tested and had stents put in by Dr. Dake. THEY all had vein blockage just like Gamboni said. Every one of them I think there were 36.
Check out what is really happening. Its amazing and I am SO in. I dunno about stents but angio plasty . .sure. its done a lot.
Stanford Patients do ALL have blockage and are healing!
Is it possible the vascular abnormalities are caused by MS, and not a cause of MS? I have MS and am just wondering. I know MS is an inflammatory disease, and inflammatory diseases cause vascular damage. I hope this may lead to a cure.
Thank you for comments but my supraclavical swelling is not a goiter and my thyroid is fine. I have an appointment with my cardiovascular doctor in a couple of weeks. Interestingly, two people have come into my life to let me know about EECP treatment in lieu of bypass surgery. I have cardiovascular diesase as well as MS. Interesting. I am looking forward to my appointment.
Mary Jane,
Is the “office” you found to do your vein imaging affliated with your Neuro doctor or is s/he a vascular surgeon. Because you need a prescription to have an MRI taken. So who’s reading the films for you?
Also, can you tell me where you are located and the name of the doctor/facility.
Thanks
I have RRMS, having been diagnosed 4 years ago, with the diagnosing MRI showing over 40 seperate lesions in the brain, and 3 in spinal areas. I have a family history of both MS and vascular problems, as well as a number of other immune disorders such as Coeliac Disease.
It would be nice to think this is a cure, but I feel that what has been found is a previously unidentified symptom of MS, that may lead to new and exciting treatment therapies and research – but not a cure…yet
My fear is this: what will happen to the veins if reopened? Is there a genetic weakness that is protected by narrowing the bloodflow? Can we see deaths from rupturing veins once opened, in five years time? I definitely feel more research is needed before starting treatments…although I’d love this to be available next Monday, Tuesday afternoon at the latest
How nice it would be for the CCSVI researches to join forces with others from around the globe, to create a registry for patients and other medical providers. Enabling all with access to protocol study information and the results of the studies…
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As a person with MS, I believe that there is more to MS than the vein problem.
Bone marrow transplants have been shown to help MS patients. One trial followed 17 people who had bone marrow transplants and the trial showed that there were no MS relapses following the transplant.
So though I find the vein theory exciting – I believe that it is hope rather than a cure.
I really hope the CCSVI people are not looking exclusively at narrow and/or blocked veins. Here’s why.
I have zero doubt MS is vascular. My sister has MS. I, however, have been blessed with good health – better than I deserve – for my entire life. Not even a cold in over 60 years. One exception: Venous insufficiency in my leg – diagnosed 2 years ago.
The way the vascular surgeon explained to me in lay terms why the blood was “pooling” in my foot and ankle is this. The circulatory system apparently works by a series of microscopic “valves” located on the veins. These “valves” pump the blood from one valve to another and this enables the blood to eventually get pumped back to the heart. With people who have vascular reflux, the “valves” don’t work the way they should. Instead efficiently transporting the blood back to the heart, the valves let some blood “slop” back down – in my case into my ankle and foot. My guess if that with MS, the neck veins have insufficient valves and thus the blood in the brain is “slopping”, i.e. refluxing back up into the brain rather than flowing efficiently back to the heart.
I don’t believe for a moment that my having venous insufficiency and my sister having MS are unrelated. Obviously, I can’t prove this, but I know it.
I hope the professionals investigating this consider the valve inadequacy aspect rather than just whether the vein is narrow and/or blocked. Seems to me that if what’s really going on is the valves fail to “pump” the blood efficiently, no amount of widening and/or clearing of the vein is going to address the issue.
after watching the video i am very interested and hopeful. i can see the connection. you can bet i will be keeping my eye on this treatment. i may be one of the first in line for the procedure. i have ms since 2001. i walk with a cane. i see a wheelchair in my future . maybe there is new hope
I have a few questions that I can’t seem to find answers to. I have been seeing an MS neurologist for almost 5 years, I have been having increased symtoms with very few remissions that my Dr. believes at some point should eventually point to MS as the culprit. The problem is that there is increasing damage being done to my body, tremor, hyper-reflexes, pupillary reflex issues, mobility issues with some attacks and on and on. Problem is the MRI’s show no plaques!! Is it possible that it could be CCSVI? We are at a loss. I just had an MRI the other night…again. Would CCVSI show up or would they have to be looking for that specifically?
Also wanted to make note that my brother, perfectly healthy 32 year old has had 2 blood clots with no origin known. Both developed in his jugular vein. He is on blood thinners for the rest of his life, I wonder if there would be some connection there.
Also wanted to make note that my brother, perfectly healthy 32 year old has had 2 blood clots with no origin known. Both developed in his jugular vein. He is on blood thinners for the rest of his life, I wonder if there would be some connection there.
I saw a few of u who have PPMS.. so dont I. I was diagnosed at the age of 27… and now, at the age of 28,I need to use a cane. It came so quickly. I cant get a job, and I cant even get on Disability.. been denied… ARE ANY OF U FROM MASSACHUSETTS, who know of a doctor who would be willing to at least look at my veins? Noone in Mass is wiling to help me.. Im crying for a plea of help now!!! PLEASE LET ME KNOW IF ANY OF U KNOW SOMEONE I CAN CONTACT.. those of u have PPMS.. know,that it is not going to get better.. it is going to only progress for me as the times go on.. I dont want to wait for that!
I am 58 years old and was told.. you have PPMS…in 2008!
But, 15 years ago I had work done on my neck for blood flow analysis, I was having blood rushing sounds in my left ear, and a lot of tenderness and pain in the same area as the veins Dr Zamboni talks about ,
was told moving unusual, and that was a far as it went!!! It was like hitting my head against a brick wall to find out more. In 2000 I had a very weird “attack” that felt as if I was having a stroke. But CT scans and an MRI showed nothing! But the entire left side of my body became weakened..and the medical field seemed to be uninterested. I even had a neurologist tell me I was depressed and gave me an anti-depressant!!!
Personally myself, I feel the blockage happens first and not always in everyone with MS. I’m getting my records for that time period and we shall see….
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I have got 1 suggestion for your site. It looks like there are a handful of cascading stylesheet issues while opening a selection of web pages inside google chrome as well as firefox. It is working fine in internet explorer. Possibly you can double check this.
Hi there,
It would be wonderful if this liberation surgery would help everyone, but my husband has Primary Progressive MS and his does not have this blockage. He does have leasions in the brain and spinal cord. I can see worsening in his condition in just a very short time. He had what seemed a couple of strokes a year and a half ago (now they think it could have been MS episodes), and a few months there after was diagnosed PPMS. He is no longer working, and has started draging his leg and the use of his left hand is getting worse also. I can see some cognitive signs also he does not think so.
I would love to know how fast this deases progresses, or is it different for everyone. He is only 58 years old and it scares me, what our life will become.
Please if you have any further information I would love to here from you.
Sincerely,
Ursula Dion
Can you email me with some hints & tips about how you made this website look this cool , I’d be thankful.
2 ice
This is in response to “(11) Hazel Young says:” on this page. HAZEL YOUNG and others, I get results similar to HAZEL YOUNG from 500mg of regular niacin. My walking goes from difficult to natural and largely effortless during the flush (about 20 minutes or so). I have found extended-release niacin to provide less dramatic improvement but for a much longer duration. I take 1000mg extended release niacin 3 times per day. A total of 3000mg per day is quite a bit and I take it under doctor supervision.
I recommend seeing a Naturopathic Doctor (N.D.) if you want to work with nutrients or anything natural (as niacin is a nutrient). An M.D. (most doctors are M.D.’s) gets virtually no trainng in nutrition (roughly a week or less). When I asked about my results with niacin, my neurologist had “No Idea.”
Please be aware that vitamin B12 problems frequently mimic M.S. symptoms.
The book, Could it be B12, is a real eye-opener.
IF ANY OF YOU CAN GET THIS MESSAGE TO HAZEL YOUNG PLEASE DO SO !!!!!
Good luck everyone