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

Compassionate Treatment

I am going to throw this highly speculative post in here about compassionate use of new experimental technology.

I believe it is time to acknowledge the truth we all know on some level but do not want to discuss.

Dr Dake can't possibly treat all the MSers who want help.

AND at some point, he will be required to do a trial with inclusion criteria. As soon as he is required to outline an actual ...
Read more : Compassionate Treatment | Views : 5801 | Replies : 38

Opinions of likely changes please after ccsvi

I am very keen to have this procedure and would welcome your input on changes I can expect.
I have been diagnosed with Primary Progressive for twelve years now.
I'm guessing my EDSS is about 6.5.
What are my chances of improvement, or at least stabilization?
Is there anyone in a similar position to me who's had it? How did it go?
Read more : Opinions of likely changes please after ccsvi | Views : 1747 | Replies : 5

Timing on replies from Stanford

I am so excited and anxious to get my chance! How long after our latest honored invitee's to Stanford sent their info in did they got their invitations to go?
I realize they must be getting inundated with requests, especially after this weeks news articles! I'm just wondering how long is this backlog.
Read more : Timing on replies from Stanford | Views : 1309 | Replies : 1

radeck's Stanford experience

I had an MRV Wed night and have have an appointment with Dr. Dake Monday morning (hey Rhonda and Rose, hope to run into you...).

Not much informative to say at this point, except that the technician doing the MRA said afterwards that I breathed really regularly and that made the images come out crisp. I wasn't aware that this mattered, so y'all might want to practice some deep breathing before the next scan. I ...
Read more : radeck's Stanford experience | Views : 9002 | Replies : 58

CCSVI and sweating, etc

Hellou again, I'm always asking questions and once again. This time about ccsvi and it's relation to temperature issues and sweating. Many operated people has said that they have felt better dealing with hot/warm weather and sweating also.

Is there scientific explanation for this, yet? Thank you.
Read more : CCSVI and sweating, etc | Views : 1479 | Replies : 1

I am going to Stanford!

Well, I have dates. I am going to be at Stanford November 9th and 10th. I have been pretty nervous, but when Darcy gave me the dates, I found myself relieved. (Yep, that's right, Dr. Dake has more help! She said she was new because they were so busy! No one here would have predicted that, would they?)

I am meeting with an internal medicine doctor on November 4th. This name was given to me ...
Read more : I am going to Stanford! | Views : 2305 | Replies : 14

Clinical and pathological spectrum of brain-stem vascular...

The clinical and pathological spectrum of brain-stem vascular malformations. Long-term course simulates multiple sclerosis.

Three cases of brain-stem vascular malformation with progressive and fluctuating clinical courses of longer than one year were studied. One patient with a rare brain-stem arteriovenous malformation lived for 20 years with symptoms notably similar to those of multiple sclerosis (MS). One case each of cavernous hemangioma and capillary telangiectasis are also described. The clinical, roentgenographic, and pathologic features of these ...
Read more : Clinical and pathological spectrum of brain-stem vascular... | Views : 1308 | Replies : 3


Wobbly, I saw your name listed under "Users browsing this forum" today. Why not let us know how you're doing?
Read more : wobbly | Views : 1430 | Replies : 2

hey ladies and gentleman

I wanted to let you guys know that you were right and I was, well, not as open mined as I should have been about CCSVI. I have just been through so many treatment "duds" that I guess I have trouble with claims of "major breakthroughs". I now see that a major university is prepared to do a pretty large study on CCSVI and how it may relate to the progression of MS. I am ...
Read more : hey ladies and gentleman | Views : 3627 | Replies : 18

sleep position (not angle) & CCSVI

I rarely sleep on my back - always preferring odd positions on my face or side, all twisted up. I've noticed in the past that this is detrimental to sinus pressure/congestion, and recently noticed how much external pressure the pillow puts on my neck in many of my preferred positions.

Anyone think there is any chance this could contribute to jugular occlusion/reflux?
Read more : sleep position (not angle) & CCSVI | Views : 2000 | Replies : 3


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