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I underwent the CCSVI procedure 6 months ago. I felt bad before the procedure and 2 weeks after started to feel a lot better. Now the symptoms are back. No some of the ‘scientists’ and well-intentioned self proclaimed doctors on this forum will rush to respond: “oh Asher, so sorry to hear you are feeling worse. Did you have your veins checked? Ultrasound? It must be re-stenosis. Else how come you felt better and now the symptoms are suddenly back?” Well, sorry guys, the Doppler showed no trace of a flow problem.

Well, I admit I too was hoping for a quick fix for my MS. It is a simple and intuitive explanation for a complex and illusive Autoimmune disease. The treatment is relatively simple, painless and cheap. It sounds so great, so please, do not confuse me with the facts.

‘Misguided speculation’ because the CCSVI and an MS connection is not the kind of science that is responsible for the huge advances that humanity made: fact based experimental science.

One of the fundamental attribution errors human beings make, and that is why we need solid science, is the attribution of causality. If I dance and it starts raining, it must be my dancing that caused the rain, right? These are the myths that guide many of our rituals, and much of our behavior. That’s fine, except this is not fact and not science.

Consider the post procedure improvement was a remission, and that the return of the symptoms was a relaps? And consider the possibility that this may have been the explanation for Zamboni’s observed phenomena?

I honestly mean no offence, and I don’t want to hurt anyone’s feelings, but if this is what it takes to speak out what I believe to be the truth, so be it. As it stands, CCSVI as a causal factor in MS is at best a not very solid theory that yet needs to be proven in a REPLICABLE and controlled scientific experiment. I believe we owe all the pharmacologists, scientist, biologists, neuros etc. who are working hard and are dedicating their lives to help us MS sufferers a sincere apology. They cannot be blamed for not embracing our rain dance.

Asher,

If you don't mind, I have a question - were you on any medication post-procedure? Thanks.

Good question; non before, and non after.

As galling as it is to regress, it is as important that these responses are noted as well as the improvements.

CCSVI isn't the answer, it's the question from which we hope to learn the answer.

The chances of getting this right for everyone first time is 0% some will win some will lose.

My partner was treated in Scotland where they seem to be very interested in valve malformation.

Could it be that Stenosis is not actually the problem but a symptom of valve malformation and it's actualy the valves that need treating and not the stenosis?

It's questions like these that will get answered as more procedures take place and differnet centres combine their results.

My partner was liberated in December, we entered into this knowing we were part of the learning curve and it might not be what we hoped it would - but we've never thought anything different.

I understand your bitterness, but it's patients like you that also help expand the understanding of this condition.

Have you considered a scan at a different centre to see if the results are the same?

EJC, thank you for your kind and measured response. Interestinly It is a 'valve malfunction' that was resolved in my case. But here we go again, this is the 2nd response attempting to establish some kind of 'reasonable causality' that will salvage an unfounded belief. And the last explanation you suggest, namely that I am bitter is anything but true. I am one of the happiest and not cynical persons you would ever meat. It would take more than this to address my fundamental argument.

I would give this article a good read

http://en.wikipedia.org/wiki/Placebo#cite_note-89

and more interestingly a study on angina and placebo

http://eurheartj.oxfordjournals.org/con ... 0.full.pdf

Placebo is very powerful.

The data from Albany will be very helpful for determining if the procedure does help improve MS symptoms.

The other important question is does the procedure modify disease progression.

Sorry, Asher. We still do not understand why angioplasty works for some and not others. You're absolutely right, we need more clinical trials. I hope there are more answers ahead for you.

Just to clarify, patientx asked if you were on a DMD---and you said no.

Asher wrote:Good question; non before, and non after.

but I remembered this thread....

Posted: Wed Apr 14, 2010 11:20 am Post subject:
MarkW, I'm not "trying to overturn Prof Zamboni's words without evidence". I am on the waiting list for the procedure and I was hoping to also be liberated from the dependancy of what I consider to be poison.

http://www.thisisms.com/ftopict-11148-.html

cheer

cheerleader wrote:Just to clarify, patientx asked if you were on a DMD---and you said no.

Asher wrote:Good question; non before, and non after.

but I remembered this thread....

Posted: Wed Apr 14, 2010 11:20 am Post subject:
MarkW, I'm not "trying to overturn Prof Zamboni's words without evidence". I am on the waiting list for the procedure and I was hoping to also be liberated from the dependancy of what I consider to be poison.

http://www.thisisms.com/ftopict-11148-.html

cheer

Actually, I didn't specifically mention DMD's. I was curious about medications related to the procedure. I should probably have been more explicit.

Asher wrote:I underwent the CCSVI procedure 6 months ago. I felt bad before the procedure and 2 weeks after started to feel a lot better. Now the symptoms are back. No some of the ‘scientists’ and well-intentioned self proclaimed doctors on this forum will rush to respond: “oh Asher, so sorry to hear you are feeling worse. Did you have your veins checked? Ultrasound? It must be re-stenosis. Else how come you felt better and now the symptoms are suddenly back?” Well, sorry guys, the Doppler showed no trace of a flow problem.

Well, I admit I too was hoping for a quick fix for my MS. It is a simple and intuitive explanation for a complex and illusive Autoimmune disease. The treatment is relatively simple, painless and cheap. It sounds so great, so please, do not confuse me with the facts.

‘Misguided speculation’ because the CCSVI and an MS connection is not the kind of science that is responsible for the huge advances that humanity made: fact based experimental science.

One of the fundamental attribution errors human beings make, and that is why we need solid science, is the attribution of causality. If I dance and it starts raining, it must be my dancing that caused the rain, right? These are the myths that guide many of our rituals, and much of our behavior. That’s fine, except this is not fact and not science.

Consider the post procedure improvement was a remission, and that the return of the symptoms was a relaps? And consider the possibility that this may have been the explanation for Zamboni’s observed phenomena?

I honestly mean no offence, and I don’t want to hurt anyone’s feelings, but if this is what it takes to speak out what I believe to be the truth, so be it. As it stands, CCSVI as a causal factor in MS is at best a not very solid theory that yet needs to be proven in a REPLICABLE and controlled scientific experiment. I believe we owe all the pharmacologists, scientist, biologists, neuros etc. who are working hard and are dedicating their lives to help us MS sufferers a sincere apology. They cannot be blamed for not embracing our rain dance.

Asher
i am very sorry for your disappointment. It disappoints me as well.

In trying to understand why some respond and others do not, and why some relapse and others do not, would you mind answering questions for me?
1. How long have you had MS?
2. Would you consider yourself RRMS, PPMS, SPMS
3. what was your worst disability?
4. how many veins were found to be stenosed?
5. How many veins were treated?
6. How old are you?
7. Did you refuse medications?
8. did you ever take DMDs
9. Do you have active lesions on MRI?
10. how did you improve at the beginning after the first treatment
11. Was your recent ultrasound done by the same operator?

I am sorry that this has happened to you.
s

Asher, I am sorry this is how things have turned out for you. Did the same person do the f/u ultrasound that did the original one?

Dear Dr Sclafani / Cheerleader,

Yes, the follow-up was performed by the same good Dr that was kind enough to treat me. No blood flow issue were noted in the follow-up.

But this is not the point I'm making. I'm not trying to bash CCSVI. I am however pointing to the 'religious' rather than fact based language that characterizes the CCSVI debate. The responses to my post are a vivid example of my argument; you are 'listening' to a disappointed person, which I am not. What guided me in having the procedure was hope. I have no regrets. But not withstanding, the burden of proof is on those who make statements such as 'i am sorry it did not work for you'. As if this theory is a fact and individuals like me are a mere statistical outlayer. Just tell me how you KNOW that what you think you are observing is infact what you believe you are observing, rather than some intervening variable e.g. placebo, remission?

Final note; nothing but respect for your commitment in search of answers.

Asher,

I think people are only pointing out possibilities (re-stenosis, change in meds) that are treatable/changeable. What would be the point of suggesting those options (placebo, etc) that nothing can be done about? When the data is released out of Buffalo, we'll have a better idea generally.

Until then, it's all speculation. But it's neither guided or misguided speculation until we see objective data. Before then it's basically a guess. People are giving you guesses of possibilities that can be treated, that's the best they can do to help. No point in pointing out that there's many unknown reasons why you've had this experience - people are just suggesting you rule out the known factors that can be fixed first.

OK, bitterness was a bad choice of word.....Frustration is probably more suitable.

Let me explian my thought process on this particular thread.

Asher has a procedure and reports improvements, however after some time the improvements dissapear.

This prompts the following set of questions:-

1/ Why did symptoms improve then regress?

2/ What happened over 6 months that made the improvements regress?

3/ Is the liberation procedure a permanent fix or simply transitory?

4/ Is liberation only part of the answer, or infact is it the answer at all and has all this been placebo?


If you'd had the procedure and shown no response then it's quite straightforward to suggest that it's all hogwash.

However you've had quite a marked improvement, so it's logical to ask now why it's gone?

This is part of the understanding of the theory (the proof people are looking for either right or wrong).

I understand where you're coming from with the "religous" analogy, I'm an atheist and I'm comfortable with that, I find peoples argument about the existence of a diety quite ludicrous personally, yet some of the largest superpowers on the planet are run by people that belive in "God" and I've yet to hear a single convincing argument (or a modicum of proof) that one (or more) does exist.

Now personally I find the theroy of CCSVI logical, but then I might be barking completely up the wrong tree. However, if the options for my partner are being filled with DMD's that simply don't seem to do much other than make her more ill, or watching her slow steady decline, then we'll take a shot with this procedure knowing that it is unproven and there are no long term results.

Do I belive it's the answer? I'm not completely convinced yet but I think there's something to it.

Anything that makes the medical community ask questions in a different way is a good thing. In the meantime I have my only personal study at home, my partner.

Time will tell if this is sound or utter nonsense.

Misguided speculation’ because the CCSVI and an MS connection is not the kind of science that is responsible for the huge advances that humanity made: fact based experimental science.

But not withstanding, the burden of proof is on those who make statements such as 'i am sorry it did not work for you'. As if this theory is a fact and individuals like me are a mere statistical outlayer. Just tell me how you KNOW that what you think you are observing is infact what you believe you are observing, rather than some intervening variable e.g. placebo, remission?

Dr. Siskin has grouped a third of people into the "no improvements' category; a third is far too many to call statistical outliers.

If you thought you could fly and were proven wrong, I could say "I'm sorry that did not work for you" without anything in there to say what my belief was one way or the other. It's fairly innocuous, all things considered. And yes, I am sorry that your improvements did not last and we do not know why or what impact improving blood flow has on MS, if any.

I think the science is underway but it's not done yet. We are caught in interesting times.

Asher wrote:Dear Dr Sclafani / Cheerleader,

Yes, the follow-up was performed by the same good Dr that was kind enough to treat me. No blood flow issue were noted in the follow-up.

But this is not the point I'm making. I'm not trying to bash CCSVI. I am however pointing to the 'religious' rather than fact based language that characterizes the CCSVI debate. The responses to my post are a vivid example of my argument; you are 'listening' to a disappointed person, which I am not. What guided me in having the procedure was hope. I have no regrets. But not withstanding, the burden of proof is on those who make statements such as 'i am sorry it did not work for you'. As if this theory is a fact and individuals like me are a mere statistical outlayer. Just tell me how you KNOW that what you think you are observing is infact what you believe you are observing, rather than some intervening variable e.g. placebo, remission?

Final note; nothing but respect for your commitment in search of answers.

ascher
i think that you miss the point. I am not saying you are disappointed. I am saying that i am disappointed.

i am seeking facts and if you could answer those questions for me, it will help me understand any factors that might make such outcomes predictable. No one has ever said that this works for everyone. help me determine if there are factors that help me give my patients more information before they are treated.

So far, i havent seen a trend, but i am hoping that one will emerge if we can get some answers from those who do not respond.