Are trials still going on in Detroit??

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

Are trials still going on in Detroit??

Postby BudgieM » Mon Nov 30, 2009 10:39 pm

Hi! I am brand new to both this website and CCSVI.( I'm 27 and was dxd at 19)
I just learned of CCSVI tonight and am overwhelmed on how to interpretate the data. I really want to get my neck scanned I live in the Detroit area, and have been reading a lot about Dr. Haacke. I went to his website and it was down. Now I kinda lost all hope at this point. Am I too little too late?
I really want to have the Liberation Treatment done...How many places are doing it in the USA?

Thanks for your help.

Oh yeah and I see my Neuro next week, what do you think I should ask him about all this??

Thanks again!
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Postby Shannon » Tue Dec 01, 2009 6:23 am

Hi, and welcome! I also live in the Detroit area, and even signed up to volunteer for the study at Wayne State with Dr. Haacke. I was not contacted, but I know others, even from as far away as Missouri, were contacted and will be going in for the study. I have no idea what the criteria are that they are looking for, but obviously there is more than just your proximity to where the study is being done. You could call there and ask to speak to someone about it for more information, but I am just going to bypass this and go right on to Stanford, when my insurance gets approved. I am already on the list there, just waiting. :D Goodluck to you!
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Postby ozarkcanoer » Tue Dec 01, 2009 6:50 am

Hi Budgie... I am going to be imaged next Monday, December 7, as a participant in Dr Haacke's MS-MRI pilot study. His initial study is small. It is more of a proof of concept. He needs more funding and this pilot study is a way to gather information to get funding for a larger study. I believe the pilot study is full.

If the pilot study is positive and Dr Haacke is able to get funding as a result, then I'm sure there will be further opportunities to participate in the future.
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Postby mrhodes40 » Tue Dec 01, 2009 8:19 am

No one is doing liberation treatment in the US. You could get stents at Stanford, but I am not sure if that is still available or not given a recent severe complication in a patient.

Keep studying and learn what is what and your day will come hopefully soon. The work is good in terms of saying that people do have these stenoses--and you can prove your own steonses if you can find a place that can test--but the treatment end of it is really up in the air at this point.

Keep reading it gets comfortable and will "click" with time!

Consider working your way through the "sticky" posts at the top, they have what we consider to be basic information in them.
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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Postby BudgieM » Tue Dec 01, 2009 10:28 am

Thank you all for such wonderful answers!!! :D

I will just continue to keep my eyes and ears open!!

Once again thank you for your help!
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