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

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Postby Lyon » Wed Jan 26, 2011 3:30 am

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Frodo says - correct me if I am wrong

Postby MarkW » Wed Jan 26, 2011 4:45 am

Frodo wrote:
By now the official situation is this (correct me if I am wrong)
-it is accepted that CCSVI exists
-it is accepted that appears associated with MS
-it is unknown if it is cause, consecuence or comorbidity respect MS
-it is unknown the effect of angioplasty in the MS evolution

It is NOT accepted that CCSVI exists - see recent Dutch study
It is NOT accepted that CCSVI is associated with MS - see neuro led paper from Jordan.

Sorry for shouting at you Frodo but the majority of the medical world has not accepted that CCSVI syndrome exists or is found in pwMS.

We are at the start in scientific terms. We need to demonstrate that CCSVI syndrome exists in pwMS and may be treated safely. Medical science moves very slowly unlike the minds of pwMS who have encountered de-stenosis treatment.

I fear that most CCSVI advocates (I place myself in this group) are moving far too fast for the medical world. CCSVI advocates would achieve more if they slowed down and brought the medical world with them. (Most neuros are a lost cause).

Not a popular message for other CCSVI advocates but look at medical history (stomach ulcers is a good one) to see how slowly the medical world changes.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Frodo says - correct me if I am wrong

Postby frodo » Wed Jan 26, 2011 8:40 am

MarkW wrote:Frodo wrote:
By now the official situation is this (correct me if I am wrong)
-it is accepted that CCSVI exists
-it is accepted that appears associated with MS
-it is unknown if it is cause, consecuence or comorbidity respect MS
-it is unknown the effect of angioplasty in the MS evolution

It is NOT accepted that CCSVI exists - see recent Dutch study
It is NOT accepted that CCSVI is associated with MS - see neuro led paper from Jordan.

Sorry for shouting at you Frodo but the majority of the medical world has not accepted that CCSVI syndrome exists or is found in pwMS.

We are at the start in scientific terms. We need to demonstrate that CCSVI syndrome exists in pwMS and may be treated safely. Medical science moves very slowly unlike the minds of pwMS who have encountered de-stenosis treatment.

I fear that most CCSVI advocates (I place myself in this group) are moving far too fast for the medical world. CCSVI advocates would achieve more if they slowed down and brought the medical world with them. (Most neuros are a lost cause).

Not a popular message for other CCSVI advocates but look at medical history (stomach ulcers is a good one) to see how slowly the medical world changes.

MarkW


I really think that CCSVI existence it is implicitly accepted in all the medical discussions I have read about, but even if it were not accepted, it changes nothing. Just read what I wrote in this way.

-it is accepted that vein impairments exist (webs, stenosis, etc).
-it is accepted that they appear associated with MS. We can further discuss this point if you want.
-it is unknown if they are the cause, consequence or comorbidity respect MS
-it is unknown the effect of angioplasty in the MS evolution

Again the conclusion is the same. Neurologist should not interfere with the veins problems of their patients.
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Postby Cece » Wed Jan 26, 2011 9:22 am

I agree with Frodo. ECTRIMS marked a changing point from the previous conversation with neurologists ("CCSVI does not exist") to the current one ("CCSVI exists and is associated with MS to a much higher degree than in the non-MS population but we don't know what that association means"). I look forward to what comes next! I'm betting on "CCSVI exists and is the biggest causal factor of MS and treating it fully and well results in improvements!" :D
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ECTRIMS is a small group of neuros

Postby MarkW » Wed Jan 26, 2011 10:38 am

I wish you were correct Frodo and Cece but I have yet to discover one practising MS neuro in the UK who accepts that CCSVI really exists in pwMS.
I would love to hear from people who can say their MS neuro accepts CCSVI in MS and agrees to screening (doppler scan).

I wish that MS neuros would not interfere with venous issues but in reality they do interfere in the lives of pwMS.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Jugular » Wed Jan 26, 2011 10:53 am

If CCSVI was the sole cause of MS, I could see the thread question being answered affirmatively. Otherwise, it's still a neurological disease or a disease that affects the nerves.

It's the interventionalists' job to fix a particular problem - obstructed bloodflow. It's the neurologists' job to explain why that may help the nerves and lead to less lesions.

Unfortunately, there are not too many neurologists who are willing to help answer this question, even if proposed theoretically. Instead, most seem unwilling to even entertain the notion and the ones that are interested seem to be more interested in finding ways to disprove it.

Unfortunately, we need a good clinical trial confirming that liberation produces a benefit to help researchers know what to look for exactly in MS patients and then to explain why such a procedure might work. But because they can poke holes in Zamboni's theory as to why and can point to prevalence studies that don't back him up, they can maintain that clinical trials are not warranted.

It's a Catch-22.
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Re: ECTRIMS is a small group of neuros

Postby frodo » Wed Jan 26, 2011 11:31 am

MarkW wrote:I wish you were correct Frodo and Cece but I have yet to discover one practising MS neuro in the UK who accepts that CCSVI really exists in pwMS.
I would love to hear from people who can say their MS neuro accepts CCSVI in MS and agrees to screening (doppler scan).


Why a neuro? and why in MS people? CCSVI has been found in healthy subjects by Zivadinov. He reported several cases in which the sindrome appeared in non-MS persons and the neurology community was quite happy with this statement. This is a further proof that they admit its existence.
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Postby Lyon » Wed Jan 26, 2011 1:45 pm

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Re: ECTRIMS is a small group of neuros

Postby Jugular » Wed Jan 26, 2011 3:45 pm

Lyon wrote: It remains to be proven with like and accurate testing between controls and PWMS that CCSVI is more prevalent or worse in PWMS and only when that is proven will it be logical to assume that there is an association. Even at that point it will be essential to keep in mind that association doesn't denote causation.
Even if it is shown that there is no difference between healthy controls and MS patients regarding obstructions, you can still ask why relieving those obstructions may produce a benefit for MS patients.

It could be the case that the deleterious effect of an otherwise abnormal autoimmune response is substantially aggravated by CCSVI. Scientific causation is very difficult to prove yet the major combatants in this debate seem to have circled thier wagons around CCSVI either being the sole cause or no cause of MS.

I like what Harrison Ford's character said towards the end of Mosquito Coast when he realized his jungle refrigerator schemes had failed, "Nature is curved. I wanted straight lines and angles."
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Re: ECTRIMS is a small group of neuros

Postby Cece » Wed Jan 26, 2011 4:05 pm

MarkW wrote:I wish you were correct Frodo and Cece but I have yet to discover one practising MS neuro in the UK who accepts that CCSVI really exists in pwMS.

Here in the US, before he got going on a laundry list of concerns about the procedure, my MS specialist was very clear about CCSVI being found to a greater extent in MS patients than in the controls and that it tended to worsen as the disease of MS progressed. He didn't draw the same conclusions as I drew from that but we were in agreement on that much alone.
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Postby Lyon » Wed Jan 26, 2011 4:07 pm

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Re: Frodo says - correct me if I am wrong

Postby frodo » Sat Jan 29, 2011 2:16 am

MarkW wrote:It is NOT accepted that CCSVI exists - see recent Dutch study
It is NOT accepted that CCSVI is associated with MS - see neuro led paper from Jordan.


About the existence of CCSVI:

I have taken a look to the recent Dutch study. I suppose you mean this

http://www.ncbi.nlm.nih.gov/pubmed/21136256

Where do you see a questioning of the existence of CCSVI? I would like to remind that CCSVI is DEFINED by Zamboni as a clinical condition defined by a positive in two or more of these tests:

* reflux in the internal jugular and vertebral veins,
* reflux in the deep cerebral veins,
* high-resolution B-mode ultrasound evidence of stenosis of the internal jugular vein,
* absence of flow in the internal jugular or vertebral veins on Doppler ultrasound, and
* reverted postural control of the main cerebral venous outflow pathways.

It is really difficult to argue that it does not exists with an argument based on this definition.
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Neuros view on CCSVI

Postby MarkW » Sat Jan 29, 2011 6:35 am

I am not going to argue with you Frodo. I am just trying to share information on the neuro view of CCSVI (they are the gatekeepers on therapy for many pwMS). I suggest that everyone keeps up to date with Prof Zamboni's recent paper - CCSVI is a syndrome. It is important to study and appreciate the differences between a syndrome and a disease.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Cece » Sat Jan 29, 2011 7:39 am

That is not a study, that is an opinion piece. 8O

My neurologist mentioned the Amsterdam study twice, I assumed he was talking about an actual study.

There are well-documented testimonies by MS patients who have gained improvement in their personal quality of life (QOL) after treatment. However, there are no data available from patients who underwent unsuccessful treatments with which to obtain a more balanced view.

If they can say that, they are not watching closely enough or feeling the failures as fully as I certainly do. Even setting aside the outcomes that are due to complications (clotting, hemorrhage, exsanguination), there are people who go for this with no improvements. We don't know what proportion of people get that outcome, although we have Dr. Siskin's estimate of a third (which I think on its own is high but adding in the complications of recoil or clotting it might be spot on or a little low), but we have most definitely heard from people in that situation.
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