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Julie  Stachowiak, Ph.D.

What Do the Results of the “Buffalo CCSVI Study” Mean, Anyway?

By February 16, 2010

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From a "big picture" perspective of the role that chronic cerebrospinal venous insufficiency (CCSVI) plays in MS, I honestly don't know what the results mean. I don't think anyone else claims to know, either.

In the most simple terms, here is what the data from the recent study conducted at the University of Buffalo says (from the data I have gleaned from the press release):

People with multiple sclerosis (MS) are 2.5 times as likely to have CCSVI than people without MS.

Now, this is in contrast to the previous studies from Dr. Zamboni and his colleagues, which were more along the lines of almost everyone they tested with MS had CCSVI and pretty much everyone without MS who was tested did not have CCSVI. Putting numbers to those results came out to something along the lines of "people with MS are 43 times more likely to have CCSVI than people without MS."

"Why is there such a big difference in the odds?" you may ask. I'm a little curious myself. There could be a number of different reasons and I am hesitant to speculate until I have seen the detailed results of the study and can compare methodologies side-by-side (the preliminary results of the Buffalo study were released in a press release, rather than waiting to publish in a journal, which is unusual but was probably done in response to the huge interest in this theory and this study from the MS community).

So, where does this leave us? First off, I am sure there are many disappointed people out there who liked the clear-cut answers that they were initially getting from the CCSVI theory when it was supported by an almost 100% correlation with MS. I am sorry (really) for all of us that the answer was not that black-and-white - once again, we are living in the land of gray with our MS.

Many things have been cast into doubt. Dr. Robert Zivadinov, the study's principle investigator, saying that he doesn't recommend having any surgery or procedure at this time, as "we don't know whether the endovascular treatment is helping or not." There seems to be some question what it means that people with more advanced MS have worse CCSVI, leading researchers to ask again if MS is contributing to the CCSVI or vice versa.

On the other side of the fence are those people who have gone ahead and had the surgery and have experienced huge improvements in their symptoms. For the individual who has actually felt improvement in fatigue, muscle weakness, cognitive dysfunction and any of the other things that come along with MS, statistics are meaningless. These people deserve our attention and respect for their experiences, too. (To read some of these, start here: CCSVI Treatment Reports from Patients)

My bottom line: I remain positive about the CCSVI theory. Clearly, something is happening here. I am also a little more comfortable with the newer numbers - as an epidemiologist, we were trained to be very wary of claims of "100%!" and words like "everybody" or "nobody." Let's stay tuned for what the science and the people turn up in the next couple of months.

How do you feel about the new developments? State your opinion in the comment section below.

Comments
February 16, 2010 at 10:33 pm
(1) Darrell Watchorn says:

I would like to remind everyone that the testing done in Buffalo did not replicate Dr. Zamboni’s testing which they say will be done with the next group of 500 test subjects which is to not only do the doplar exray but also include a MRV exray, I for one, am confident that if both these ex-ray methods are used the number of subjets with MS will be much closer to Dr. Zamboni’s findings of the occurance of CCSVI

February 16, 2010 at 11:26 pm
(2) Graeme says:

Hey Dr Julie

Yes, but this is not so widely reported:
“The researchers also found fewer cases of CCSVI in patients who had experienced a single MS attack, called clinically isolated syndrome, compared to those with more advanced symptoms of the disease -38 per cent versus about 80 per cent.”

Given that 5-15% of MS cases are misdiagnosed the figures for non-CIS rise to 85-95%

This information came from this thread on this is MS:
http://www.thisisms.com/ftopict-10255.html

February 16, 2010 at 11:28 pm
(3) Graeme says:

Sorry, that quote came from this article:
http://www.google.com/hostednews/canadianpress/article/ALeqM5h9fFcp3BUaMrK7YnuZlWEAgfVkvw

I must always cite my sources! I must always cite my sources!

February 17, 2010 at 2:39 am
(4) Bev Bentley says:

from Vancouver: I love what you said, “Let’s stay tuned for what the science and the people turn up in the next couple of months.” This shows this everything is moving fast, which is what it should do. Thank you for your professional thoughts and encouragement.

February 17, 2010 at 11:44 am
(5) Russell says:

hi from London, England
we,re right to be wary of or until proper results, there is clearly something in this, but Im sure it will lead to more questions than answers, but questions that need to be asked and Im sure that it will lead to another SMALL step rorward. be strong everybody

February 17, 2010 at 12:15 pm
(6) Gretchen says:

To me, it would have been shocking to see the exact same results as Dr. Zamboni. The fact that blockages are seen at such a higher rate in MS patients vs. non-MS patients is what is relevant. Research needs to continue in this area, but to me, this is growing proof that there’s a relationship between MS and CCSVI.

February 17, 2010 at 12:18 pm
(7) Stacy says:

Thanks Darryl and Graeme….When I read Dr. Julie’s note on CCSVI, my heart sank. I am newly diagnosed, in the “Kubler-Ross” stage of things, and hanging on to the CCSVI as being a possible cure in the near future. What you gentlemen have clarified in regards to the Buffalo study gave me some more hope. Thanks!

February 17, 2010 at 12:19 pm
(8) Stacy says:

Sorry Darren! Short term memory issues!

February 17, 2010 at 12:20 pm
(9) Stacy says:

Okay, I give up…Darrell!

February 17, 2010 at 12:36 pm
(10) Graeme says:

No problem Stacy

I forgot to mention that, if you do decide to do some amateur statistics to the 80% CDMS to bump it up to include a rough guess as to misdiagnosed subjects then you’ll have to apply that 25% (I think) of healthy subjects with CCSVI figure to the extra 5-15%. If that makes sense. So it would be more like 80% + 3.75/11.15%

Interestingly, I heard that most of the controls were relatives of the MS population studied, so that accounts for the high percentage of CCSVI in healthy patients statistic.

But we know nothing for sure until the publication of the detailed paper in April..

February 17, 2010 at 1:29 pm
(11) Donna says:

I have been seeing a NUCCA chiropractor who told me about the findings months ago. NUCCA trained practitioners work on increasing the opening for our spinal cord between our neck vertebra. I have had a reduction of my Lhermittes Syndrome symptoms with his adjustments. It may be a more conservative approach to increasing drainage in our brain for those who have the funds to try it.

February 17, 2010 at 1:53 pm
(12) richard says:

i asked my dr. to arrange the mrv of neck for me, actually the first one performed here in austin, tx, which i had on this past jan. 13, and it showed my left jugular very significantly less in diameter than the right. the left shows at least one narrow that i guess could be opened but the whole thing from top to bottom is very, very much less diameter than the right and it appears to be from birth. coincidentally, it is the left side of my head and face which tingles . . . which may or may not mean anything . . . i am trying to find someone in town, a ‘vein specialist’, to take some time to discuss the mrv with me so i can learn more but so far am only finding varicose vein people. i am mailing out copies of the data disc results to the other two drs. i have been seeing who showed no previous interest in discussing ccsvi subject and perhaps they will want to say something about it now. meanwhile, my mrv dr. is showing interest in the ccsvi theories and is gathering more mrv’s from other patients but told me to come back in 6 months and really had nothing more to say to me other than present the images. on my own, i am studying how to minimize iron in my diet and when i get some more money (no insurance) am going to have tests to see if i have more iron than normal. i you have an interest in ccsvi, i can only suggest you to be proactive. i was hoping to find a kink or twist or two that could be opened and was not really prepared to find the whole dang thang so diminished but i am going to keep chasing after what it means – try to get some info about blood flow up vs. blood flow down, whatever i can learn, etc. in light of my own mrv i would not dismiss any theories until you get one – without your own mrv, how can you participate in the discussion other than as conjecture.

February 17, 2010 at 3:04 pm
(13) Cece says:

Richard, you might want to check some of the older threads at the CCSVI forum at thisisms.com – all of the different thread done over the summer by people who were at Stanford getting stents placed by Dr. Dake had a lot of information. I believe he was able to open up thin veins as you describe by placing more than one stent throughout the vein.

February 17, 2010 at 3:54 pm
(14) Edward Murray says:

Based on the numbers in the Canadian Press article,
Zivadinov’s numbers are not all that different than Dr. Zamboni’s, certainly not enough to be walking around lamenting the differences:

“The researchers also found fewer cases of CCSVI in patients who had experienced a single MS attack, called clinically isolated syndrome, compared to those with more advanced symptoms of the disease -38 per cent versus about 80 per cent.”
http://www.google.com/hostednews/canadianpress/article/ALeqM5h9fFcp3BUaMrK7YnuZlWEAgfVkvw

Since only about half of those diagnosed as CIS go on to full blown MS, then 38% is closer to 80% for those who do develop MS. That assumes the 38% are those who in fact will develop full MS, but that is probably a good working hypothesis at this stage.

We will know more when the details are released in full.

February 17, 2010 at 4:34 pm
(15) Graeme says:

Richard – I think that I’m right in saying that it is only ‘free iron’ that you have to avoid. Such as that to be found in foods fortified with iron, like breakfast cereals. Broccoli, as an example of what not to avoid, is high in iron but also, supposedly a chelator of iron. Green tea has been found to be very effective in clinical trials for this.

http://www.ncbi.nlm.nih.gov/pubmed/16470637

February 18, 2010 at 4:21 am
(16) Linda Gagnier says:

I am 63 and was diagnosed with MS just 2 years ago. I have some cognitive problems, have had some cramping episodes. My main symptoms are optic nerve damage, numbness & tingling & pain in my extremities. Lyrica HELPS!!My mother is almost 87 and has optic nerve damage, is nearly blind, has had mini strokes that have left her with a happy dementia. Only in the past 10 years has she been told that she has MS and CCSVI. I know what MS is! But I don’t know much about CCSVI except that it has obviously ruined my mother’s health. I’m going to study up on it right away. Thanks, Julie!

February 18, 2010 at 11:31 am
(17) Em says:

I love that CCSVI is being presented here in a rational way. I got very excited when I heard about Dr. Zamboni’s results, and I can see how easy it is for me to get my hopes up. I am trusting that science will thoroughly research the corelation (I hope!). And hopefully soon we will have some answers and maybe some treatment options!

February 18, 2010 at 8:46 pm
(18) Ashton says:

For those interested in the meaning of the Buffalo results I refer you to my article on this topic at http://www.direct-ms.org/magazines/Embry%20New%20CCSVI%20Data%20for%20Guiding%20Actions%2002%2010.pdf

February 19, 2010 at 9:29 pm
(19) Bill Rouse says:

As someone that has been living with MS for over 16 years and has administered to myself three of the five ABCRT MS drugs over these many years, I prefer siding with the “43 times more likely to have CCSVI” claim. We must remember we have been provided over the years a variety of ambiguous claims by the drug companies that on average 30% of MS patients will see positive results by taking one of these five drugs. Doctors continue to prescribe these drugs in a “micro” style basis with limited cross reference/support from a “macro” perspective within their peer group. At the same time the various drug companies are more than happy to provide each of the doctors with all the information needed to influence docs and their patients to get on board with one of the ABCRT MS drugs.

February 21, 2010 at 10:01 am
(20) Lawrence Kollenberg says:

I read your article. It is an interesting slant and determination of the evidence that you chose to report. I suggest that in the future you report fair and balanced information. While you have documented research to suggest your slant in a positive vein (No pun intended) you failed to show the opposite arguments to your discussion with solid documentations. Additionally you have not shown a true source of peer review on this thus only making it your opinion. Need I remind you that we all have opinions. Additionally your references are not cited in a conclusive concise reportable fashion. Hence IF I wanted to build a case to my neurologist where I commonly use reprotable literature to make my case to him I could not use your article based upon the way it is written. Additionally while some may have the funds to push for this testing. Most do not. thus it would take a solid review of the literature to push it through “medical necessity of an insurance company to get reimbursement for this type of study.

As someone who has lived the nightmare of MS for 10 years post diagnosis and actually some 30 plus years with the diesase it is a shame that you did not see fit to properly give the necessary tools to allow someone like me to make my case in a proper and appropriate fasion.

remember that personal communication which you rely on from the georgetown arena is not acceptable in the REAL WORLD of insurance reimbursement

February 21, 2010 at 8:14 pm
(21) Graeme says:

Lawrence – the article was written on the back of a press release, the paper is to be published in April. Make your case then, when the paper is published and good luck!

February 22, 2010 at 10:21 am
(22) Lawrence Kollenberg says:

Graheam,

when your article is published please make sure that it is posted so that I can review. One thing that I do agree with you on is the drug companies and large non profits have too much money at stake. My comment of fair and balanced is to show both sides of the issue in an appropriate fashion. One of the things about a good article is it shows and discusses its own faults and where things can be improved.

February 23, 2010 at 7:18 am
(23) John says:

Graeme – where did you hear that “most of the controls were relatives of the MS population studied”?

I would expect that controls would be sex-matched and age-matched where possible, but it would be surprising if family members were used, given that MS “risk factors” are known to run in families. Maybe venous malformation is one of these congenital risk factors.

I agree that if you’re right, this could very well explain the high percentage of CCSVI in the control group.

February 24, 2010 at 12:35 pm
(24) Graeme says:

I might be wrong actually, John, I heard it on the thisisms.com forum ..

May 13, 2010 at 5:18 pm
(25) Claudia says:

Hi Julie, I wondered what your opinion (or anyone’s) is of getting tested for this now. There’s a place in Glasgow, Scotland called Essential Health Clinic offering the scan for £450 and the total treatment if necessary comes to £5,500. I’m torn between being sensible (esp when £000s are concerned!) waiting for more conclusive results to taking control and action and not waiting for the scientists/doctors to get around to it. I have mild MS of a few years so far (touch wood). Thanks

July 5, 2010 at 1:37 am
(26) Tim says:

As the ex-husband and somewhat primary care giver of a 54 year old woman who was diagnosed 18 years ago and continues to slowly progress despite having the best nuerologists in Denver and the most up-to-date medications, I find a flaw in the basic arguments for CCSVI treatment.

To me, it DOES NOT MATTER whether or not CCSVI might be the cause or even a significant contributing factor to the onset of MS.

The way I look at it is that it should be self-evident that the narrowing of the veins involved CAN NEVER be a good thing and that it is possible that the problem could lead to all kinds of negative health concerns.

Since the Buffalo Phase I study showed a significant percentage of control patients with narrowed veins, the medical profession should decide that this condition clearly merits much greater attention and research overall, regardless of MS implications, particularly focussing on improving the safety and efficacy of treating the condition.

July 6, 2010 at 3:53 pm
(27) richard stewart says:

I am a doctor, but not a neurologist, though I have patients and friends with MS. All of us are following this diagnosis and treatment closely. My personal caregiver is a brilliant muscle kinesiologist, and he feels strongly that my peripheral neuropathy, which has been progressive for the last 15 years may very well be vascular in origin rather than neurological.I go on record here as saying that as soon as possible I will have the ultrasound studies done. If I should have venous insufficiency I think it will make more of a case for the brain problem being the cause. (I am not the Richard who has been writing the commwents.)

August 20, 2010 at 3:20 pm
(28) Michaela says:

I have had MS since 1985

I am very curious to find out more with regard to CCSVI

I haven’t been working because I’m on disability with my MS diagnosis

I would like to know why these tests that have been done in Italy on MS patients are not done here in Canada :(

September 25, 2010 at 2:00 pm
(29) Catherine Somerville says:

Please look at studies and to make sure that the conditions are the same before you spout them as fact. Dr Z in Buffalo was not able to include criteria 2 ( they didn’t have a machine that could test it) They only used dopplers and and Zamboni used dopplers AND venogram. There are many people that have negative dopplers and positive CCSVI when venogramed.

My daughter was diagnosed with CIS (early MS) Aug 19 2010. We had her tested for CCSVI Sept 21,2010 and she had 2 blockages- L IJV and Azygos- she had a successful angioplasty

Everyone that I know with MS thats been tested has HAD the stenosis of more than 1 vessel.

We need help spreading the word of this great discovery so funds are filtered this way……….not to BIG PHARMA.

We are not giving to any MS walk, bike a thon, run,etc until they filter funds where they belong…….

When the benefits outway the risks by as much as CCSVI and its treatment results have……….funnel the money and the press in the right direction.

May 6, 2011 at 9:36 am
(30) Dennis Cheney says:

My wife has had MS for over 20 years. She was getting so bad, I made arrangements for her funeral. She was completely in a wheelchair and had to be fed to eat. I heard about CCSVI in January and three weeks ago had the procedure done. She is making incredible progress. She can even feed herself some of the time. Her veins were so blocked you would wonder how she lived. When the last balloon was done on the left side, her worst tide, the blood made a whooshing sound in her head. She came out able to wave her right hand all around, wiggle her toes, and speak louder. Her nose hands and feet are no longer freezing and she can raise her dead left hand up to her chin. We are looking forward to the daily improvments we see in her mobility. I went despite the neurologist, who charged me 400 dollars to tell me he would not give the recommendation to have it done. Funny, they had her on copaxin shots for five years at 3,000 per month and NO sign of improvement but something that would help, he could not give approval. All I can say is follow the money explains the resistance.

October 24, 2011 at 7:19 pm
(31) Sandra Spadaccini says:

Hi Dennis, my sister has MS and is getting progressively worse. She has had it about 20 years. I am glad your wife is doing better and it was inspiring to read your comment. Where did your wife have the CCSVI procedure done. If you dont mind how much did it cost. I have mentioned this to my sister’s neurologist but both were negative about the procedure.

Thank you,

Sandra

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