CCSVI- just the facts, ma'am

amielzbth · Getting to Know You... Joined: Jan 25, 2010 Posts: 13

My main concern is whether or not my fiance will die after this surgery. I'll just be frank about that. I don't want him to die. I think that's a valid and justified emothion that I am allowed to have.

I read somewhere that the blood thinners a young woman took after the surgery caused her to have a fatal stroke. I'm not having this if this is the truth. What I need to know is what the name of that blood thinner was and how much she was taking.

My fiance wants to go into this "boldly". I'm calling this "blindly" as he sees what everyone else wants to see which the cure for MS. The thing is, I don't want him going into this with the wool pulled over his eyes so if anyone can help me, please let me know what the blood thinners were called and how much the poor woman was taking.

I don't mean to sound too frank. I just love him so much and to be honest a big part of me would die with him if he was killed over this. Call it selfish, but the person with MS isn't the only one living with the disease.

Thanks!
Ami

Dovechick · Posted: Mon Jan 25, 2010 12:39 pm Post subject: To die or not to die

Ami, I don't think that anyone can reassure you but yourself, you need to read all you can in the 'sticky' threads. The story of Holly is all there, full of hope and pathos, and all we can say from a distance and without being medically trained is what the doctors who treated her reported and that was that she had a predisposition to this event.
But hundreds have had the procedure done and she was the only death.
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Michele, warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

SCGirl · Family Member Joined: Jan 26, 2010 Posts: 42

Okay, this is my first post... I have been contacting, or I should say, attempting to contact Stanford University and Buffalo for updates on the CCVSI surgeries. As much as I have read ( information overload !), I may be still going into this blindly, but no medicine so far seems to help and I am sick and tired of being sick and tired. So, is there any new information out there that I am missing as far as how I can go about getting this treatment?? I am willing to go wherever I need too.

Dovechick · Posted: Tue Jan 26, 2010 11:47 am Post subject: go here

Hi SC girl,
I can't really say about stanford as I live in UK, but I know this thread has been significant for a few people and it might help you too.

http://www.thisisms.com/ftopict-9775.html
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Michele, warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

fiddler · Posted: Sun Jan 31, 2010 8:54 pm Post subject: Getting treatment

SCGirl, unless you can get a local interventional radiologist and/or vascular specialist interested in CCSVI, the only place you can go for treatment at this time is with Dr. Simka's team in Poland (that has a waiting list stretching into 2011 - but maybe you can get your name on a list of people who would go on short notice when there is a cancellation). It appears that another team in Poland may be starting up soon (not sure if that is only for assessments or for treatment, as well), as will a team in Bulgaria. There is hope that Dr. Zamboni in Italy and Dr. Dake at Stanford will get started again soon.

We are all hoping that the results of the study in Buffalo (due to be announced next Sunday in Hamilton, Ontario) will validate the CCSVI/MS hypothesis. If that happens, it should make it much easier to get vascular specialists and IRs interested in helping undertake CCSVI interventions.
...Ted
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Dx SPMS in 2004. Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com