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

side effects of stenting

Hi All!
Our polish ms community suffer from lack of info about possible side effects of stenting,and all we hear from our neuros is bunch of threats (we think that's their way to stop us from trying to go ccsvi way) So I would ask You to help prepare list of possible side effects.This will help us to make decisions.We tried to compare risks of stenting of neck veins to stenting of superior vena cava,but ...
Read more : side effects of stenting | Views : 1943 | Replies : 8

Vascular Scientists vs Neuroscientists

The following is the body of an email that I sent to the Administrative Director of the Hope Center for Neurological Disorders at the Washington University School of Medicine in St Louis. Any comments ???


Dr Zamboni is a vascular doctor. Most scientists/doctors researching MS are neuroscientists/neurologists. We need this kind of collaboration at the Hope Center for MS research : discussions of Zamboni's work between vascular scientists/doctors and neuroscientists/doctors. All the information that ...
Read more : Vascular Scientists vs Neuroscientists | Views : 2836 | Replies : 16

Who is waiting for Dr. Dake?

I just thought it would be interesting to see who is waiting to see Dr. Dake. Maybe those of us who have our paperwork in could post here and keep the rest of us updated on the process, then post on the skicky post when we have the procedure. Some of us may end up at Stanford at the same time!
Read more : Who is waiting for Dr. Dake? | Views : 3091 | Replies : 15

PPMS. High iron levels


I'm a new PPMS UK member brought by researching CCSVI. I'm a 68 y/o male, dx late 1980's, but early symptoms since '70's. Have now been wheelchair bound for about five years, but am not on any medication.

I recently discovered/realised that my deceased mother had suffered from haemochromatosis - iron overload. I had a blood test and it was found I am a carrier of one of the two copies of the gene ...
Read more : PPMS. High iron levels | Views : 2749 | Replies : 5

Amazing resolution from new faster scanner.

Saw the scans on BBC last night. 3D showing phenominal detail of all the vessels and bones. Almost like a perfect model of the internal anatomy.

Acheived in seconds with new machine.

This is going to be great for the CCSVI research.

BBC: check out the video: ... 363756.stm

A scanner at a Cambridgeshire hospital which can examine an entire heart in quarter of a second, is being ...
Read more : Amazing resolution from new faster scanner. | Views : 1431 | Replies : 0

how many repeat procedures?

So my company's health insurance will be changing on Jan 1st, and there is a 50% chance that Dr Dake will no longer be in my network.

I'll be having my initial MRV and probable procedure prior to the insurance change.

If I am no longer in Dake's network, I'll have to find a local vascular doc to do my followup MRV. That's not a problem I don't think.

But I'm sort of worried about ...
Read more : how many repeat procedures? | Views : 1521 | Replies : 2

checking in

Any new breakthroughs/progress in the last couple of months to report? I know, I could go through the threads but I thought this would be easier and quicker!!!
Read more : checking in | Views : 1194 | Replies : 8

UK people having CCSVI tests & procedures done abroad

Perhaps like many of you, I see little point (for now) in trying to convince my GP and Neurologist to organise any kind of CCSVI tests for me here in the UK because they probably won’t be very sympathetic to the proposed links between MS and CCSVI. Even if they were, it would take forever to organise and I doubt that many professionals over here would conduct the tests in accordance with the specific protocols ...
Read more : UK people having CCSVI tests & procedures done abroad | Views : 3116 | Replies : 7

Anyone have Darcy's phone number?

I have Alex's phone number but need Darcy's. Alex's voice mail box is completely full--can't even leave a message now. She must be SUPER busy.
Read more : Anyone have Darcy's phone number? | Views : 1249 | Replies : 2

Liberation Procedure Research on line 11/24

OK. This out of Italy. Dr. Zamboni's paper on the results of the Liberation Procedure patients and their 18 months of followup after the procedure will be here for free on Nov. 24th-

Read more : Liberation Procedure Research on line 11/24 | Views : 3030 | Replies : 4


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