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

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 : 986 | 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 : 1023 | 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 : 2022 | Replies : 6


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 : 1982 | 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 : 1531 | 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 : 7445 | Replies : 66

New Here

Hi All.
I am new to this site. Dx RRMS 2001 with more sx than I want to write about. Permanently disabled from my career.
I am very excited to learn about CCSVI and I have all of my paperwork into Dr. Dake.
Alex said my chart is on his desk so I am anxiously waiting for a call from him.
How long did most of you guys have to wait? I know he has ...
Read more : New Here | Views : 1642 | Replies : 14

Dr Dake Contact Info

Read more : Dr Dake Contact Info | Views : 3064 | Replies : 5

Welcome to Retta and other new visitors-

Just wanted to welcome new visitors to the site. We've been referring folks here from Facebook and other places to come and learn-

Learn all you can about CCSVI. Read the research sticky and the long, long thread. Check out the glossary, there are alot of new terms. Become acquainted with the search function. Most every question you can think of has been discussed before.

As far as diagnosis and treatment- I recommend that individuals ...
Read more : Welcome to Retta and other new visitors- | Views : 937 | Replies : 1


Hello everyone. Because I am highly allergic to copaxone and my body blocks the effects of the interferons my doctor has me on an "off-label" treatment for MS which is a once a month infusion of intravenous immunoglobulin (IVIg). I have been trying to figure out how this fits in with the CCSVI model for MS and have been having difficulty figuring it out. From what I can understand IVIg is antibodies extracted from plasma ...
Read more : IVIg | Views : 1270 | Replies : 6


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