Attack After CCSVI?

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

Attack After CCSVI?

Postby AMO » Tue Oct 13, 2009 3:52 pm

Hi Guys.. I just have a question regarding those of you who have done the operation did anybody unfortunately get an attack afterwards or did it stop? I know its still early but i was just curious.
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Postby gibbledygook » Thu Oct 15, 2009 7:16 am

I've not had a relapse and had the operation on 23rd June, so about 3.5 months ago...at least one relapse a year before this.... Some of the symptoms which disappeared after the surgery reappeared and then disappeared again. Some days I think my walking is becoming really good and then it gets a bit worse again so it's not a straight line but the trend is definitely positive.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby AMO » Thu Oct 15, 2009 8:05 am

The problem is that I'm way far away from the places that do the operation so i'm thinking is it worth it ?
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Postby gibbledygook » Thu Oct 15, 2009 8:14 am

If you're stable it might be worth waiting for more research to come through...
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby Loobie » Thu Oct 15, 2009 8:23 am

gibbledygook wrote:I've not had a relapse and had the operation on 23rd June, so about 3.5 months ago...at least one relapse a year before this.... Some of the symptoms which disappeared after the surgery reappeared and then disappeared again. Some days I think my walking is becoming really good and then it gets a bit worse again so it's not a straight line but the trend is definitely positive.


This has also been my experience. Up and down with an over net trend of positive change.
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Postby mrhodes40 » Thu Oct 15, 2009 8:59 am

No one can say how it would work for you, that's the heck of it. There is not enough published research to have firm expectations about results.

You could fit anywhere in the spectrum from being really successful as Jeff and Mel did all the way to a very progressed person who really won't see much if anything at all in terms of ""improvements" for a long time--if ever.

You'd have to want to be rolling the dice on an experimental new paradigm. Some people are delighted to do that like me because they don't have another option.

Others have other things to do and should consider standard options for now...

Here's food for thought: a considerable part of the damage we all experience is due to immune activation as the immune system reacts to the iron deposits, assuming the model here. If you do standard therapy and suppress immune activity to reduce that response until more definitive results are out and it is more readily available, that is a reasonable choice a person might make.
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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