CCSVI- just the facts, ma'am

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

The Blood thinners after the CCSVI surgery

Postby amielzbth » Mon Jan 25, 2010 11:13 am

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
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To die or not to die

Postby Dovechick » Mon Jan 25, 2010 11:39 am

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.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby SCGirl » Tue Jan 26, 2010 9:55 am

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.
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go here

Postby Dovechick » Tue Jan 26, 2010 10:47 am

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
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Getting treatment

Postby fiddler » Sun Jan 31, 2010 7:54 pm

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
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby Stacia » Wed Apr 13, 2011 11:36 am

I live in Florida, is there a place to explore CCSVI in my state?
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Postby fogdweller » Wed Apr 13, 2011 12:09 pm

SCGirl wrote: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. I am willing to go wherever I need too.


I can't say about Buffalo, but on the outside shcne that SCGIRL is Southern california and not South Carolina, here is som
California information. Dr. Dake at Stanford declined to see me for possible restenosis from a previous procedure because he thought I should instead go to a place where they could provide treatment if there was indeed something wrong. That tells me that he cannot provide treatment in general. I think (but am not sure) that he is doing a study, so if you can qualify for the study he can treat you and follow you but otherwise probably not.

Dr. Sclafani has his American Access unit set up in San Diego. Call Dr. Rattner at (619) 263-9729. They are taking patients.
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ccsvi treatment in Tukwila, WA. (Seattle)

Postby kcj1963 » Sun Apr 17, 2011 8:03 pm

just had mine done last week at
Vascular Access Centers‎ - dr. mcGuckin
14220 Interurban Avenue South
Tukwila, WA 98168
(206) 439-1710
vascularaccesscenters.com

good staff, so far positive results have been mild but definite..
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Postby Cece » Sun Apr 17, 2011 8:06 pm

SCgirl's post is from a year ago, but Stacia's post is from this week. Yes, there are places in Florida to have this done. Tampa, Miami, and ... maybe Gainesville? This is a sticky thread but if you can post your questoin in the main forum, I expect you'll get the answers. Welcome to the forum.
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Re:

Postby FLJhawk » Mon May 07, 2012 9:58 am

Stacia wrote:I live in Florida, is there a place to explore CCSVI in my state?


Dr. Gerald A. Niedzwiecki in Clearwater of the Advanced Imaging and Interventional Institute. He has done over 300 CCSVI procedures and seems to be up on the latest. He doesn't like to do stents unless absolutely necessary or the patient insists. See my own history under "CCSVI in Two Days".

I don't think CCSVI helped me, but I can't complain about the doctor.
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