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

Surgery complication that I had - verified by another

Well I have to post about my shoulder you've all heard me bitching about. With Marie's help :wink: , I finally thought it worthy of being checked out and I am going to write about it here. I was hesitant at first because I figured this would be pile on fodder, shell game for Bob to say it's not a good idea because there are some potential ...
Read more : Surgery complication that I had - verified by another | Views : 3891 | Replies : 26

Tracking Results

I've seen some discussion on tracking results. The text based patient logs are great for those of us who are going to do this procedure and need to know every detail. But for trying to show results to the outside world, a picture that sums up 10, 15, 20 years of MS history and interventions is helpful.

Here is my homemade version, pegged to EDSS scale

Then ...
Read more : Tracking Results | Views : 11120 | Replies : 47

How much for CCSVI treatment - Dr. Dake or Dr. Simka?

I am really convinced by CCSVI.

I doubt my neuro is going to be much enthused about it and I am considering just pushing ahead and travelling for the investigations and possible stents needed.

How much does it generally cost for the full investigations & treatment? Ireland is in the EU so not sure if that has any relevance.

Please feel free to PM me if you'd prefer not to post publically. Any replies ...
Read more : How much for CCSVI treatment - Dr. Dake or Dr. Simka? | Views : 2046 | Replies : 5

Akaheather's Turn

My appt is scheduled on October 8 and 9. I am totally scared to death!
I don't really like flying and am really sad about having to leave the children with Grandma. :cry:

However, I want to find out if I have a problem that can be fixed!

So for those of you that are praying...I am hoping for a safe flight, something worth ...
Read more : Akaheather's Turn | Views : 7033 | Replies : 45

Next move, getting MRV in Finland


So, I had no luck with Doppler, they just used neck doppler and cannot see anything.

So I hit my head to wall little time and luckily found neurologist who was very interested about this CCSVI model.

He schedule time for MRV scan on next wednesday.

YA! He laughed that this might be new and hard to radiologist to make but he was convinced that it is possible.
The may have to take two ...
Read more : Next move, getting MRV in Finland | Views : 1175 | Replies : 1

vaccination problems

I was reading this story and wondered if the girl's hidden medical problem was something like reflux going on. Of course, I don't actually know what her condition was, but considering the idea of CCSVI combined with vaccines, it seems to be a bad idea to me...
Read more : vaccination problems | Views : 1410 | Replies : 0

New and excited!

Count another MSer in on the CCSVI train! :D I am new to this site and have been reading messages here both today and about a week ago, when I first heard of CCSVI. I was reading the messages here today about people who have gotten calls and people who have been for the procedure already. It got me very excited! So, guess what? I just ...
Read more : New and excited! | Views : 3746 | Replies : 18

Does side matter?

I think a lot of people with mobility issues have one side worse than the other, at least it starts that way. My right is worse than my left. It seems Dr Dake has been treating jugulars that are worse on one side than the other. So for those with diagnosed jugular occlusion, is your occlusion bad on your bad mobility side, or would it be the other way around, or does it even matter?
Read more : Does side matter? | Views : 1825 | Replies : 11

serious questions...

I have been lurking here for a while so I talked to my neuro about it yesterday. Let me say up front I had decided I wanted to do this, I have a phone call in to Alex about it. My guy told me he really thinks that this hasn't been studied enough, he is worried that Dr. Dake is pushing the envelope, that he thinks the ballons are a better method - and that ...
Read more : serious questions... | Views : 1376 | Replies : 1

My magnetic pillow and CCSVI - discard it?

I am watching CCSVI with HUGE hope - think it might be the 50% commonality to all MS'ers we were looking for - the other 50% I am guessing might be variable (EBV, CPn, etc). I am so excited about CCSVI.

Last night I just had a sudden thought - I have used a magnetic pillow for the last 8 years. It has small magnets - about a half an inch - sewn into a ...
Read more : My magnetic pillow and CCSVI - discard it? | Views : 1397 | Replies : 1


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