CCSVI skeptics

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby CureOrBust » Thu Aug 13, 2009 7:41 pm

bump 8)

People still want to let out, so I thought I would raise the thread, since it has also been a long time silent. :)
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Postby zap » Thu Aug 20, 2009 8:22 am

Your neuro said there are risks w/ venous stents...did he elaborate? oops you said he was brief. maybe he was so brief because he didn't really have all the facts and was trying to save face :(


I emailed him on the 13th and asked:

If you have time, could you perhaps elaborate on the risks involved in venous stenting?

In the time since I last wrote you, several more people on the MS forum I am on have gone out there to be tested - and every one of them so far has been found to have major stenoses in their jugular or azygos veins. All have had venous stents done.

I know I am early in the disease, still very low symptoms, but I can't help feeling that it might be worth having this checked out - and if I DO have stenoses in my veins, it seems like I should want them corrected (regardless of if and how it connects to MS) ...


Today he responded:

I can only reiterate what I said previously. I think this is pseudoscience. I am certainly willing to change my position if persuasive evidence is presented to the contrary.


Bah. No response to the question of risks at all.

I should note that he is a major player with the local MS Society, and is the lead researcher in about a dozen ongoing clinical trials for various MS drugs ... so yeah, I guess his resistance is likely a bit subjective.
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Postby bestadmom » Thu Aug 20, 2009 8:58 am

I saw my neuro yesterday and we discussed some research currently going on and a speaker they had in their office yesterday who was talking about the relationship between the herpes virus and MS. Our conversation got philosophical and I decided I'd throw out the CCSVI theory.

I knew he poo pooed it to Marcstck but was curious what his reaction would be yesterday, specially since I knew he heard of it before. Without a second's hesitation, he said it was meaningless. I can't wait to get my diagnostics at Buffalo in a few weeks and hopefully move on to the surgery. These guys will lose their practices if surgery can cure MS.
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Postby turtle_fi » Thu Aug 20, 2009 11:13 am

i have been thinking that is it possible that neurologists might be against the ccsvi theory, due to that
a) drug industry and drug research is a major money business
b) theory goes out of their expertise with neurological system to vascular system?
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Postby Loobie » Thu Aug 20, 2009 11:50 am

Two phrases: know it alls & big egos.
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Postby IHateMS » Thu Aug 20, 2009 1:06 pm

turtle_fi wrote:i have been thinking that is it possible that neurologists might be against the ccsvi theory, due to that
a) drug industry and drug research is a major money business
b) theory goes out of their expertise with neurological system to vascular system?


But in US, neurologists can be board certified in vascular neurology.... the board certification process is relatively new (only since 2003).
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Postby Sharon » Thu Aug 20, 2009 2:08 pm

But in US, neurologists can be board certified in vascular neurology.... the board certification process is relatively new (only since 2003).


Interesting....I wonder how many will register to be certified once Zamboni's symposium goes international? :roll: :roll:

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Postby catfreak » Thu Aug 20, 2009 2:10 pm

They will be getting in line to get board certified in Vascular Neurology or lose patients to someone who is.

My 2 cents,

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Postby bestadmom » Thu Aug 20, 2009 2:18 pm

My doc is an ms specialist and treats no one who doesn't have ms. He can't afford to be so cavalier. He'll lose his whole business. He is vested in stem cell research and has his own research center. Unless stem cell transplants are viable in the US for MS, as a way to fix irreparable nerve damage, he'll have nothing.
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Postby CureOrBust » Thu Aug 20, 2009 6:16 pm

turtle_fi wrote:i have been thinking that is it possible that neurologists might be against the ccsvi theory, due to that
a) drug industry and drug research is a major money business
b) theory goes out of their expertise with neurological system to vascular system?
I have already tried presenting this idea to two significant MS neurologists in Australia. BOTH of their responses / issue with accepting this as the "cause" for MS has been "But how does that cause a lesion? activation of the immune system?" Neither of these neurologists tried converting me over to taking an existing DMD or use their "effectiveness" as supporting the current beliefs.

I think Dr Simka is working mostly in that field of investigation, so I think neurologists will find it easier to accept once this segment of the theory has been agreed upon AND sufficiently proven.

If Zamboni's tests ARE as repeatable as he implies, they simply will not be able to argue that segment of the theory, it will be a scientifically measurable fact. The other I think can still be labelled conjecture. And the current conjecture has been accepted for quite some time. Old habits...

OK, now for some actual scepticism...
From what I understand, not many (if any) people who have taken Campath have re-activated (may still be early). I would not think that it would change their venous issues, so why do they not re-activate? If they had dopplers a few months after, would they then fail 2 of the dopplers? (I don't see why not)

The only thing I can think of with the Campath thing is that a recent study found it activated and de-activated groups of gene's in such a way to encourage nueron growth. Maybe They are simply in a state of constant battle. Maybe its just a matter of time (I truly hope not for their sakes).
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Postby cheerleader » Thu Aug 20, 2009 7:13 pm

CureOrBust wrote:I have already tried presenting this idea to two significant MS neurologists in Australia. BOTH of their responses / issue with accepting this as the "cause" for MS has been "But how does that cause a lesion? activation of the immune system?"

Cure...sadly neuros do not understand how the venous system can create demyelination in congestive venous myelopathy of the spine because they look at the brain like it's not attached to the rest of the body...but just because they haven't studied it, doesn't mean it doesn't exist. It doesn't need to be "proven", because vascular doctors already understand it. Reflux of blood into tissue of the CNS causes demyelination and activates the immune system to clean up axonal death. Dr. Dake hit his head and said, "Why hasn't anyone ever thought gf this before? CCSVI is just like congestive venous myelopathy BUT IN THE BRAIN!!!" Yup. He got it.

OK, now for some actual scepticism...
From what I understand, not many (if any) people who have taken Campath have re-activated (may still be early). I would not think that it would change their venous issues, so why do they not re-activate? If they had dopplers a few months after, would they then fail 2 of the dopplers? (I don't see why not)

Campath tamps down inflammation in RRMS patients....but it does not work for progressive MS patients. Not sure if Zamboni or Dake have tested folks who took Campath. I'll ask them. Mel did revimmune, and her jugulars were both crimped and blood was refluxing into her brain. Maybe she wouldn't have had a relapse, but the injury was continuing, and her MS was still progressing. Stopping relapses is not stopping MS.
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Postby rainer » Thu Aug 20, 2009 9:41 pm

Loobie wrote:Two phrases: know it alls & big egos.


Pretty incredible from a field that still can't reliably test, diagnose, or treat the disease. :roll:

A doc should not recommend it if they are unconvinced by the research. But please, ditch the uppity attitude like you have some greater understanding of MS.
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Skeptics?

Postby HDragon » Thu Aug 20, 2009 11:43 pm

I clicked on this thread thinking it may present opposing viewpoints and be a healthy forum for discussion about CCSVI. Instead I am finding people complaining about their neuros not buying into the CCSVI theory and then assigning motive to that solely based on reasons related to money and inflated egos.

Many neurologists, mine included, are primarily motivated by making people healthier, not to make money. I would even venture to say that the large majority are motivated by this reason.

None of you are doctors. There has been ONE cardiologist who has weighed in in support of the CCSVI theory on this board. Zamboni and Dake are just as human as your "economically motivated and ego-driven neurologists".

Can a neurologist please explain to me why the autologous stem cell transplant study in Italy has had such great success if CCSVI is the cause of MS? No, they can't. A neurologist can't explain that because it doesn't fit the current model.

I believe there are MANY unknowns about MS. I also believe that doctors are not perfect.

MS, with its nebulous and temporal symptoms is an incredibly difficult disease to study.

I am not trying to poo poo the entire theory of CCSVI. I am just witnessing a sort of mob mentality that has lost its objectivity based on relatively few apparently successful stories.

Hope is good. I am very excited to follow these initial reports. But I believe that it is important that we try to maintain our objectivity and to not let our hope cloud our ability to reason.

Sorry to be a party pooper on the CCSVI thread, but after all, this is the "CCSVI skeptics" thread.

By the way, hello, I'm new to the site (and MS) and I really enjoy a good healthy discussion in case you haven't noticed. Next time I'll try to post before I'm into my third PBR tall boy. Cheers.
Last edited by HDragon on Fri Aug 21, 2009 2:03 am, edited 1 time in total.
relapsing progressive MS
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Postby Ernst » Fri Aug 21, 2009 12:45 am

Im sure there are lots of things to study with MS. My personal though at the moment is that CCSVI is very big part of the puzzle, but there are still things to study. Like Zamboni said something like this, that its time to co-operate, neuros and vasvular guys.
At the moment denying CCSVI findings feels weird - cause this is something quite concrete and operations have done very good effects to symptoms. So, if someone is saying immediately that "cant be" -- then he/she hasn't red the research papers.
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Postby whyRwehere » Fri Aug 21, 2009 4:24 am

Hello HDragon,
Your post was not that bad, compared to others. I didn't see you disagree at all, really. I think we would all welcome neurologists opinions here, but only ones who were actually reading the material and spending more than a second on thinking about it. I suppose this a thread for that reason...that people just want to say, "why won't you open your eyes (and your mind)?"
I think we walk a thin line with our neuros here. We want any help they can give us, but we also come knowing what we do, which often seems like more. My husband will be looking for a new doctor this Autumn, as I think our last one just doesn't want to see us anymore...too many questions or suggestions??
Well, I asked an older Frenchman who he was using, as I know he left this same neurologist, and he said the one he had was no better. He left the first one after he said to the man's wife, "are you sure he is as unwell as he says he is, because he doesn't seem to be...." I guess that was before MRIs.
Why don't you invite your neuro onto here, to discuss the matter with us? We'd love to have him.

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