Best of a bad situation

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

Best of a bad situation

Postby Gordon » Wed Nov 24, 2010 1:51 pm

Proof is unfolding before our eyes... People that restenose or blood clot up there lberated veins get worse MS wise very quickly.

Sad but true

g
Last edited by Gordon on Wed Nov 24, 2010 4:57 pm, edited 1 time in total.
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Postby Cece » Wed Nov 24, 2010 1:56 pm

I agree, Gordon, although it's anecdotal, it seems to hold up.
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Postby Johnson » Wed Nov 24, 2010 6:06 pm

I am not sure of the broader population, but that is not true for me.

I am much better than I was in May - before my first procedure, and much better than I was in September - before my second procedure. I am having a relapse right now, but I have not had a relapse for years - I was just steadily getting worse. I am certain that I had become "Secondary Progressive"., but now, it seems to be back to RR. Is that positive? I hope so. Is it a reversal of the disease course - even if not immediate? I'll know in time. My first PTA lasted about a month, and the second made no real difference - because my veins would not stay open, and I did not take a stent. The two biggest benefits for me seem to be less fatigue, and better cognition - but just in the last few weeks, and the procedure was almost 2 months ago. I still definitely have "MS", but it is more like 6 years ago.

A caveat: I have undertaken a protocol targeting bacteria (which I believe is involved with my case), so there is a confounding variable. I do not know if my questionable benefits are residual of the second procedure. I doubt that, as the 2nd did not much for me, and I don't think that messed up valves and stenosis just spontaneously improved after an incomplete procedure. I can say that the two procedures did not make me worse. There are people who get worse even though their veins are patent. What is Dr. Simka's "unknown factor"? I think it is bacterial.


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Re: Best of a bad situation

Postby pklittle » Fri Nov 26, 2010 6:57 pm

Gordon wrote:Proof is unfolding before our eyes... People that restenose or blood clot up there lberated veins get worse MS wise very quickly.

Sad but true

g


Sad but true indeed. I am a testament to that. :(
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A few examples is not proof

Postby MarkW » Sat Nov 27, 2010 7:44 am

Gordon is totally incorrect when he wrote:
Proof is unfolding before our eyes... People that restenose or blood clot up there lberated veins get worse MS wise very quickly.

Evidence from thousands who have undergone de-stenosis says that their MS symptoms are no worse in the vast majority of cases. The majority of pwMS who undergo de-stenosis experience an improvement in the symptoms, according to research neurologist Dr David Hubbard. These are real clinical experiences of pwMS. The risks of being an early adoptor of any novel procedure is that the diagnosis and therapy are being developed and may change after my/your therapy.

My view is that there is reasonable evidence for someone with MS (that is progressing) to get a selective venogram to search for stenoses and balloon venoplasty to de-stenose any found. If you are risk adverse then wait for more evidence. But remember proof rarely happens in biological sciences, despite Gordon's view.

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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 Lyon » Sat Nov 27, 2010 8:15 am

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Last edited by Lyon on Sun Nov 20, 2011 5:16 pm, edited 1 time in total.
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Postby dania » Sat Nov 27, 2010 8:48 am

So much is unfolding that only time will tell the whole story. The truth is that open veins usually means less MS symptoms. But it seems many develope Intima Hyperplasia after the treatment, which leads to the veins blocking up again and in some case more than the original stenosis. That is what happened to me and many other. It is so disappointing to see your improvements vanish and then to find you are worse than ever.
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Postby BadCopy » Sat Nov 27, 2010 1:13 pm

Lyon wrote:MarkW,
Gordon and pklittle are talking about RE stenosis and you are talking about DE stenosis.


I am talking about REstenosis. 1st op in Aug, several things got better fot a while. Now things are just about back to pre-op. I had an US that showed at least one area is back that was ballooned.
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Postby patientx » Sun Nov 28, 2010 5:08 pm

MarkW wrote:The majority of pwMS who undergo de-stenosis experience an improvement in the symptoms, according to research neurologist Dr David Hubbard. These are real clinical experiences of pwMS.


With all due respect, how would Dr. David Hubbard, or anyone for that matter, know the experience of the majority of those who have undergone de-stenosis (as you put it)?
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Postby CCSVIhusband » Sun Nov 28, 2010 6:09 pm

So now you guys want to dismiss the collective stories of a bunch of people (saying nobody knows what a bunch of people report) - read this site and facebook.

AND you want to dismiss the individual reports (as anecdotal and not part of a blinded study) ...

?????????????????????


When is IT ever going to be enough?

You're right though, my wife had results after liberation ... they were good. In my opinion, that is all that matters to me! When she says there is something to being liberated of CCSVI ... that's good enough to me.

What will ever be good enough for you "skeptics"???
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Clarrification

Postby Gordon » Mon Nov 29, 2010 3:36 pm

Clarrification

If you get the liberation treatment

You see significant improvement - Majority

Then if your veins close back up

Your Symptoms returns

Proof as far as I am concerned

Gord
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