This Is MS Multiple Sclerosis Knowledge & Support Community

ozarkcanoer wrote:I've had a real chuckle over all these plumbing and electrical analogies !! Now if I could just get you guys to help diagnose our leaky roof that has caused us countless misery for 20 years. Is it the roof or the chimney or the tuckpointing or leaky bricks or the downspouts or just what the heck ?

sbr487 wrote:Mark, I am a bit surprised at the tone of your article given that CCSVI was able to correlate symptoms you have been having with clear vascular issues in the body.

There are 2 distinct aspects about CCSVI
1) impaired blood flow behind MS theory
2) approach towards correcting 1)

Lack of favorable results in 2) does not mean failure of 1) in anyway.

this shouldn't come as a surprise, but patients need to be keenly aware that the liberation procedure is not always the panacea that its most fervent advocates often assert it to be.

Given that quite a bit of knowledge is still evolving on the CCSVI and liberation procedure, it would be incorrect to pass judgement at this time ("liberation procedure in the current form" would have been more preferable).

Lack of expected results in CCSVI, in my opinion, might not be due to total flaw in the theory itself but probably because we are still grappling with some unknowns here.

L wrote:

marcstck wrote:As far as Simka,, Jordan, and Kuwait go, they haven't published any papers detailing the results of their work.

Sorry to butt in again, but Simka has published: http://www.ncbi.nlm.nih.gov/pubmed/20351666

MrSuccess wrote:Those 25 % in Buffalo ..... are not perfectly healthy. Healthy people have arteries and veins that flow unimpeded .

My initial MS research included ....reading information posted on the NMSS webpage . I clearly remember reading the NMSS information page regarding MRI brain lessions.

They [- the NMSS-] stated that healthy people have been subjected to MRI's .... which revealed lessions .....and exhibited no disabilities .

So ..... what do you make of that ?

So we have Neuro's saying CCSVI is bumpf .... as X % of people tested have blocked veins .... but do not have MS . They like to point their finger at your MRI ..... count the size , location , and volume of lessions ...dub you as having MS ..... and ask which drug would you like ?

Do they not read their own webpage information ?

So .... do healthy people have brain lessions ?

No they do not. Just as healthy people do not have restricted veins and arteries .

Accepting and immediatly treating CCSVI is vital .

To wait for disability is unconscionable.




Mr. Success

marcstck wrote:

nicko wrote:

marcstck wrote:Just posted to my blog late last night. This post may cause some angst, as it's not blindly pro-CCSVI, but it's my honest assessment of where we've been, where we are now, and the best way to move forward with Dr. Zamboni's theory.

http://www.wheelchairkamikaze.com/2010/ ... ccsvi.html

Well said,

You mention about hysteria and extremism. I don’t think for everyone it’s the fact that we cannot get ccsvi treatment right now that’s getting us fired up. Most people are intelligent beings and understand that this is very new and needs to be proven. All most of us we want the right to control our own health. Right now SOME neurologists are saying what we can and cannot do. Just look at the 2.4 million being awarded from the MS society is it not going entirely to studies run by neurologists? Wouldn’t you expect a vascular Dr to control a study on a vascular issue? Even my own neurologist told me that blocked neck veins are perfectly harmless. They do not have the expertise in the vascular field to control this matter. I want a vascular Dr to tell me what should be done. They should be the ones telling us what to do. Right now neurologists are controlling our ability to have proper health care. I can see where a great deal of anger comes from this. It gets me fired up as well. Just because we have MS doesn’t mean neurologist should control every aspect of our health. I do believe that we need to fight for this to change. Us as a ms community have a voice and we should use it wisely. A lot of this hysteria we are seeing is from people venting their anger on blogs, forums etc. It’s the only way for some people to get rid of this frustration. I think this frustration needs to be pointed in the right direction. We just need some organization so we don’t look like these crazy fools.

Here's another piece of heresy: neurologists are not the enemy. Every vascular surgeon or interventional radiologist I've talked to has told me that they know virtually nothing about MS. They can identify blocked veins. Once you get into the effects of those blocked veins are having on the CNS, you're into territory covered by neurology. Therefore, neurologists are a vital part of determining the relationship between CCSVI and MS. All of the studies funded by the MS Society's do include neurovascular experts as part of the studies.

It is possible that the blocked veins being found are entirely harmless. The CNS venous system has been so little studied that there is very little data on the number of people, healthy or not, who are walking around with blockages in their veins. We're not talking about arteries here, in which blockages almost always signify a potentially dire situation. Venous anatomy is much more flexible (both literally and figuratively) then arterial anatomy. There is redundancy built into venous systems, and collateral veins develop to take up the slack when the primary vessels develop problems.

This is not to say that the blocked veins are harmless. This is one of the known unknowns about CCSVI. It could well turn out that a significant portion of the "healthy" population has blockages that would be termed CCSVI, without suffering any ill effects from these blockages. On the other hand, it's possible, maybe even probable, that CCSVI blockages play a major role in MS (and maybe even some other neurologic diseases). As of this moment, though, we simply do not know.

To make the assertion that neurologists should play no role in the study of CCSVI is a completely misguided notion. There's lots of talk of "plumbers" and "electricians" here on TIMS. If we were simply talking about blockages for blockages sake in CCSVI, then, yes, we should only deal with plumbers. But since these blockages are allegedly causing severe dysfunction in our central nervous systems, the electricians are required to ascertain just how and what disrupted blood flow is doing to the CNS.

If your kitchen sink was backed up, but not affecting any other item in your kitchen, then only a plumber would be called. If that backed up sink overflowed and shorted out the electrical outlets in your kitchen, you'd need to call an electrician.

CCSVI presents a complicated picture, experts in multiple disciplines will be required to sort it out.

magoo wrote:"The blind of defense of any hypothesis or ideology does a disservice to that being defended, and diminishes the credibility of the person doing the defense."

Blindly supporting to me means there is no information or fact to support your cause. There is information to support this cause. Enough that you, me, and many others went out and tried the treatment.
I understand wanting everyone to keep a level head and not make remarks like "cure". I don't find too many people discussing CCSVI saying that. I just feel a lot of excitement and joy from the gains being made.

patientx wrote:

marcstck wrote: Every vascular surgeon or interventional radiologist I've talked to has told me that they know virtually nothing about MS.

I was told exactly the same thing by a few vascular experts. Not that there's anything wrong in this, and their candor was welcome.

If your kitchen sink was backed up, but not affecting any other item in your kitchen, then only a plumber would be called. If that backed up sink overflowed and shorted out the electrical outlets in your kitchen, you'd need to call an electrician.

Hey, good (counter)analogy.