Poll: Getting treatment?

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

Are you getting treatment for CCSVI?

Yes, I am getting treatment at Stanford.
13
24%
Yes, I am getting treatment somewhere else (post where in this thread)
10
18%
No, but I am looking for someone locally to do it
22
40%
No, I'll wait for more research or my neuro to say do it.
10
18%
 
Total votes : 55

Poll: Getting treatment?

Postby mrhodes40 » Wed May 06, 2009 5:40 pm

This is a poll to see how many are going to Stanford or getting treatment elsewhere.

Post about your efforts to get this treatment here!
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Postby Artifishual » Wed May 06, 2009 5:59 pm

I voted yes, but somewhere else, that is only if I cannot get the attention at Baylor College of Medicine in Houston.
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Postby mrhodes40 » Wed May 06, 2009 6:04 pm

The baylor group looks promising. Dr Dake seems really open to talking to us I bet he'd chat up a storm with someone from Baylor who wants to look into it....
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Postby skydog » Wed May 06, 2009 6:47 pm

Checking local, but have my sights set on Stanford. Seems my whole family are Stanford grads. Sleeping on it tonight. May call in the morn. On the subject of ms age and duration. Seems I pushed right on thru the early stages. PPMS was my original diagnosis. The neuro's comment was that it appeared that most all my many lesions were healed over. no shine... Maybe the marbles in my head HeeHee Peace Mark
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Postby Loobie » Thu May 07, 2009 12:58 pm

We are trying Ohio State, but if no bite, California here I come!
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Postby Needled » Thu May 07, 2009 2:36 pm

I voted No, but I'm looking for someone locally. Actually, Cheer's looking, but she's been kinda busy lately, :) and I'm waiting on her contacts at Yale. I'm hoping her golden touch continues. If Yale's not interested, I'll start checking in Boston.
N
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Postby Sharon » Thu May 07, 2009 2:44 pm

Dr. Dake is going to get a rounded sampling of patients. Sounds like he will be getting the young, the mature :wink: ..... - female, male .... RRMS, SPMS..... MS'rs treated with the CRABS - MS'rs without the CRABS.....Chris with his Revimmune. This will be interesting.

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Postby peekaboo » Thu May 07, 2009 3:52 pm

Marie - Great Idea & thanks for posting the survey..this will be valuable information if we all enter our post treatment experiences like Cheer in the Regimin forum for Jeff. what would we do with such info? LOTS....

we can help other MS'rs that come to thisisms..case histories as a tool..we can use this info for exposure in the Vasular and Neuro platforms either to get local support like needled, loobie & skydog...or come up with a statement aka press release from us to high profile ms/vascular centers , clinics and publications.

Am i being to gradios?
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Postby mrhodes40 » Thu May 07, 2009 5:46 pm

Starting the PR already eh??? way to go...hope is good for us.

My expectations are modest-I am relatively progressed to a 6 and I do not expect a whole lot in terms of reduction in symptoms, but I am hoping that maybe if I can stop progressing that would be good. I'm not sure my regimen entry is going to inspire a lot of interest. I don't want to be a wet blanket but I do want to be realistic.

I am glad we can see how many are going though. I know of one going who is having trouble getting registered cause she is not forum savvy my friend Island Girl should be here soon. She gets to go to Stanford too.
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Postby peekaboo » Thu May 07, 2009 6:00 pm

marie -

U & I are in the same place time etc with ms...please keep your hopes, attitude and frame of mind towards the positive. yeah you & I may not fully recover because we are old hats in the MS gig but I turley belive that good things will happen because of this type of therapy. anything positive is a POSITIVE...
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Postby Sharon » Thu May 07, 2009 7:11 pm

Marie -

ditto to Peekaboo's reply
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Postby Needled » Fri May 08, 2009 6:20 am

Marie and Peek, My progression is not as far along, but I think my expectations are in line with yours. To just not have to worry if this is the day I’m going to have another damaging relapse would be wonderful. Knowing there wouldn’t be any worsening of the symptoms would be tremendous. I figure I can deal with the problems I have a lot easier knowing that there won’t be more of them. If the problems get better, BONUS! If not, at least they won’t get worse. And that’s as much as I’m allowing myself to hope.
BTW, my husband is ready to cross the country to Stanford. As much as I would love to do that, I also feel it’s important to start a network/contacts on the East Coast. Gotta spread the word, right?
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Postby chrishasms » Fri May 08, 2009 6:53 am

123
Last edited by chrishasms on Sat Dec 05, 2009 6:54 pm, edited 1 time in total.
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Postby zap » Mon May 11, 2009 11:44 am

I'm going to start digging around here in the Minneapolis area - you'd have to think that someone at the Mayo Clinic would be interested, maybe we can get a mid-country node going there ...

http://www.mayoclinic.org/vascularcente ... eases.html
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Postby mrhodes40 » Mon May 11, 2009 11:57 am

Dr Dake is an interventional radiologist- you might try that specialty at the Mayo... marie
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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