Opinions of likely changes please after ccsvi

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

Opinions of likely changes please after ccsvi

Postby wonky1 » Sat Oct 17, 2009 3:54 am

I am very keen to have this procedure and would welcome your input on changes I can expect.
I have been diagnosed with Primary Progressive for twelve years now.
I'm guessing my EDSS is about 6.5.
What are my chances of improvement, or at least stabilization?
Is there anyone in a similar position to me who's had it? How did it go?
Thanks
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changes following treatment of CCSVI

Postby GiCi » Sat Oct 17, 2009 4:33 am

Hi Wonky1,
I do not think that anybody could answer your questions, not even Zamboni.
It is true that improvements following the liberation procedure have been observed, but the evidence is still being accumulated. If you decide to have the procedure you should do that on the basis that a normal drainage of blood from the brain is very likely to be better than a faulty one.
GiCi
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Postby mrhodes40 » Sat Oct 17, 2009 8:47 am

I agree with Gici, that is perfectly framed.

But I will talk about my experience, I am about a 6+ (cane all the time rollator sometimes) and have no big improvements to point to . If I could go back in time and talk to myself this is what I would say knowing how it came out ; DO NOT EXPECT ANYTHING DRAMATIC, it won't happen.

I spent the first few weeks looking to suddenly walk like a normal person even though I knew it was unlikely based on physiology, that didn't stop my heart from hoping MAYBE that would happen. :lol:

That having been said I do have improvements. See my entry in the tracking project sticky or my regimens thread.

It appears that with a functional electircal stimulator (Walkaid or bioness) I will be able to walk PERHAPS without a cane in some time--before the surgery the Walk aide didn't work that well for me because of spasms. FOR ME, as different from some progressed others, for some reason spasms are the most impacted so suddenly the bioness I tried last week worked perfectly.

But in general, I still feel very MS-y and disabled.

I dread people going into this with rose colored glasses on about results. Those of us who have had MS for a long time have a lot of iron in our brains and there has been a lot of damage that is not going away even if this is the cause of MS.

Looking at it as "I will try this with the hope that I can improve my circulation and give my brain a better chance at healing" is the best way to look at it.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sport » Sat Oct 17, 2009 9:07 am

I couldn't agree more. The way I look at it is that if their is improvement to be had it will take a long time. All these changes to my body didn't happen over night, and they certainly won't be cured over night. For me, as a progressive patient, I figure this will take at least 6 months for me to see a discernible change one way or the other.
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Postby Loobie » Sat Oct 17, 2009 9:18 am

I just wrote all about this on my blog. Since we aren't inflammatory anymore, there is no anti inflammatory response, thus no immediate jump from the source of inflammation being taken away. I thnk across the board, all of of progressives are starting to realize this. That we aren't going to get the results of someone who is still RR. Sucks, but stabilization might be all we get, but how good is not getting worse?
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Postby jay123 » Sat Oct 17, 2009 11:32 am

My hopes are to stop the progression, while I wait for the stem cells to fix the damages!
Didn't I read somewhere that Zamboni didn't see results in progressive people for like 18 months? That seems to stick in my head somehow.
And GiCi, I know and understand your logic on the balloning vs. stents, but that is one reason I prefer the stents that I don't won't to have to fight for re-balloning (is that a word? lol) without seeing results first.

Now when do I get my dang call!!!
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