JUST THE TRUTH

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

JUST THE TRUTH

Postby BadCopy » Sat Jun 11, 2011 8:09 pm

10 months post op.

So I realize that there are people that want this to be the answer and those that dont. I also realize that for some it has been the answer and others it has not.

I am doing better 10 months post op then when I went in. Am I cured?...No. I am still a Bad Copy of the original but better than I went in.

I had a second procedure in Dec, but I was not fully treated. Even then I did see some benefit but not near what I encountered after seeing Siskin. A third procedure may be in my future but not for at least a year or two. I want to see where this all goes. I can say with all confidence that there is something to this.

I just felt that after all the Info I got from TIMS I needed to give an honest feed back to everyone. If you have ? for me just PM.
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Postby blossom » Sat Jun 11, 2011 8:43 pm

good to hear you are doing better than before you had ccsvi treatment. that can only be a good thing. maybe in time you will see more for the better. i hope so.
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Postby Loobie » Sun Jun 12, 2011 7:46 am

You sound just like me BC. Not back to the original, but doing better. Overload of my CNS (too much stress, exertion and heat) and I still feel like ass, but overall, doing lots better than before. As I've said many times, nothing yet can undo damage that has already occured.
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Postby Cece » Sun Jun 12, 2011 7:55 am

Thanks for the update, I think everyone needs to hear the good and the bad and the in-between.

I can relate, too, I am definitely much better than I started but not cured. I thought the fatigue would be more gone than it is but I had no expectation of the remnants of my foot drop (from a recovered relapse) vanishing all the way, so that it's as if the two feet are equally good. It hasn't been like that for 5 1/2 years.
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Postby JCB » Tue Jun 14, 2011 10:29 am

Thanks for the update, the other Dr. S. is completely on board now. Glad to hear you are doing well.

Jim
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Postby BadCopy » Wed Jun 15, 2011 8:06 pm

Thats great to hear that you all have seen improvements.

Hey, thats great to hear about the other dr S being all in.

Like I said, better but not cured.

I have not taken DMDs since just before the first procedure, no more prednesone, and my provigal has been cut in half.

And yes, if you throw me in 90* and humid it will drain me. Definitly not as fast though and I recover much faster.

Where is a good place for a person that was recently diagnosed to find out information on CCSVI that really isn't biased either way?
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Postby Cece » Wed Jun 15, 2011 8:15 pm

BadCopy wrote:Where is a good place for a person that was recently diagnosed to find out information on CCSVI that really isn't biased either way?

TIMS, maybe?

We at least have both sides, in heated contention.

Or maybe Wheelchair Kamikaze's blog posts?
Ccsvi.org, of course, but maybe that would be considered too pro-ccsvi.
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