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

Next move, getting MRV in Finland

Ok,

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 : 730 | 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...
http://news.bbc.co.uk/2/hi/health/8281673.stm
Read more : vaccination problems | Views : 928 | 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 : 2884 | 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 : 1331 | 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 : 913 | 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 : 953 | Replies : 1


The connection- Iron, hypoxia, and oligidendrocytes

When I first came on TIMS in 2007, there was a regular poster, twisted helix, whose posts always gave me plenty to chew on and lots of words to look up. He's not around as much anymore, and we miss him. MS keeps him down physically, but as you can tell from his "voice"...his brain and humor remain vibrant and engaged. He posted this in the general, because we all miss him and were trying ...
Read more : The connection- Iron, hypoxia, and oligidendrocytes | Views : 1903 | Replies : 6


thirtysomething

I just returned home last night from Stanford last night and seeing the man. I asked what "number" I was, and he said that he thought that it was about 34 or 35. I thought that he had treated more people by now.

I had the procedure performed on Fri. Dr. Dake said that my case was somewhat atypical, and maybe because that's because he doesn't see that many PPMS patients. I was dx less ...
Read more : thirtysomething | Views : 1905 | Replies : 14


Practical question on operation technique

I'm sorry if I have missed the explanation of this (and the laziness in not searching the net for angioplasty... :oops: ). Nonetheless, from what I understand, both the stenting or ballooning of veins using "key-hole" entry would require that the surgeon has a "view" as to the real-time placement / location of the stent or balloon.

My question is, is / has / was this done ...
Read more : Practical question on operation technique | Views : 1417 | Replies : 9


What a wonderful trip!

Hi All!

We went to Stanford on Thursday. Mel had her MRV, MRI. No need for an ultrasound now apparently.

Blood work too.

Met with Dr. Dake, he was just back from Lisbon and is heading over to Liverpool (my home town) in October.

Mel's stents look great, the flow is good and she can stop all the drugs apart from a baby aspirin forever.

Mel still feels great, so much so when she had ...
Read more : What a wonderful trip! | Views : 7123 | Replies : 66


 

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