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-   -   CCSVI-I can't help but think that there actually my be something to this! (https://www.neurotalk.org/multiple-sclerosis/107595-ccsvi-cant-help-actually.html)

PolarExpress 11-11-2009 09:23 AM

Achh..Where's Marc? He explains this so well. It does make sense. The surgery itself is risky, but finding out if it's a problem just takes a good MRI and someone who knows what they're looking at. It would be good to know how many MSer's have some kind of blockage or narrowing. I think it's a promising line of investigation!

kicker 11-11-2009 09:41 AM

There's a new technology, a helmet that looks like an alien Trojan soldier's helmet (google Brain bucket) you wear using a new type MRI machine, that really shows veins and stuff (lesions in particular) much better and is way faster than traditional MRI. Is it anywhere I go? No.

kicker 11-11-2009 09:53 AM

http://abcnews.go.com/GMA/story?id=7493337&page=1


Here's an URL (I think)

Lady 11-13-2009 01:41 AM

Good link. Thanks Kicker. Better than laying down and getting the whole body enclosed. Great information. I wonder what they charge for that one? Hmm

kicker 11-13-2009 07:34 AM

It should be same as traditional MRI and if you were covered by insurance, should be again. Johns Hopkins didn't have it, I sent my neuro the info last spring as he knew nothing about it!!

Jules A 11-14-2009 11:23 AM

I also think its promising although I'm thinking more about possibly stalling progression as opposed to curing MS or being the actual cause of our illness.

FWIW my leg circulation is poor, always has been, and standing on my feet for work all these years has taken its toll. In an odd way it would make sense that I have blocked channels elsewhere also I guess. I'd like to give it a bit more time before I went through a needless operation but I'm not concerned with the operation itself being risky. As things get wose I'd rather die trying I guess.

poetic license 11-16-2009 04:36 PM

I'm taking part in this research study:

http://www.ms-mri.com

I hope to find out if my veins are stenosed by taking part. I'd do the stents or balloon angioplasty in a heartbeat. The Charing Cross report (HERE) found that opening up the veins resulted in a four-fold reduction in relapses, plus any future relapse was due to a reoccurence of stenosis. When the stenosis was treated, the relapse resolved within four hours to four days. Speaks volumes. Plus, this is the only treatment that has been shown to significantly reduce MS related fatigue.

Most of the CCSVI research is here. It's worth in in-depth read. I'm personally not willing to wait the years that it will take to be hashed out--even if it's not the "magic bullet" for MS it can only be good to open the veins that lead to the brain.

gonnamakeit 11-16-2009 05:00 PM

Quote:

Originally Posted by poetic license (Post 590318)
I'm taking part in this research study:

http://www.ms-mri.com

I hope to find out if my veins are stenosed by taking part. I'd do the stents or balloon angioplasty in a heartbeat. The Charing Cross report (HERE) found that opening up the veins resulted in a four-fold reduction in relapses, plus any future relapse was due to a reoccurence of stenosis. When the stenosis was treated, the relapse resolved within four hours to four days. Speaks volumes. Plus, this is the only treatment that has been shown to significantly reduce MS related fatigue.

Most of the CCSVI research is here. It's worth in in-depth read. I'm personally not willing to wait the years that it will take to be hashed out--even if it's not the "magic bullet" for MS it can only be good to open the veins that lead to the brain.

It is very disappointing that this vein problem was theorized 45 years ago and just blown off. What a waste.

Hopefully Zamboni and others are on to something big for all of us. Good luck to you and your lab rat status.

gmi

zipfed 11-16-2009 05:29 PM

I'm going to get checked, I have an appointment with my GP to get a referral on the 11/23 and hopefully within a month or so I will be headed to Stanford to get checked and hopfully stented, I have done my homework and this looks very promising but I will admit at only 36 I am most afraid of what the future holds with only LDN and Copaxone which seem to do little to nothing.:cool:

poetic license 11-16-2009 05:36 PM

Quote:

Originally Posted by zipfed (Post 590329)
I'm going to get checked, I have an appointment with my GP to get a referral on the 11/23 and hopefully within a month or so I will be headed to Stanford to get checked and hopfully stented, I have done my homework and this looks very promising but I will admit at only 36 I am most afraid of what the future holds with only LDN and Copaxone which seem to do little to nothing.:cool:

same with you, huh? I just had a relapse plus two episodes of disease activity (that I'm not sure would be "relapses" per se). I'd heard so much about LDN but I'm still hanging on to hope that I'd be worse off with out it and the copaxone. I wish I could go to stanford but I have insurance issues, a baby, no job, yadda yadda, plus I'm allergic to nickel, I have to find out if they have non-nickel stents. I am going to email dr. Zamboni and see if there is some hope for me entering a trial with balloon angioplasty.


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