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

Post CCSVI stenting - getting off meds safely and exercise

Hi Everyone,
I am post procedure and have been lucky enough to feel real improvement. I want to eliminate all unnecessary meds, ASAP! I have no patience, LOL. :lol: I do know how distressing this can be to my body, so I'm trying to go slow. :roll:
I was on pain, anxiety, and musclerelaxant medications, which I do ...
Read more : Post CCSVI stenting - getting off meds safely and exercise | Views : 2143 | Replies : 9

Erika`s procedure in Poland

I am very happy and I am very lucky! :D :D :D :D :D :D
I had me procedure in ...
Read more : Erika`s procedure in Poland | Views : 89333 | Replies : 493

CCSVI and change of seasons

Would change of seasons affect someone with CCSVI?

Everytime the seasons change, I feel horrible. I have been so dizzy and nausious the past 4 days, it's very miserable. I thought I had a flu or cold at first, but no fever or or other symptoms. Besides this is how my relapses often start.

There is so much information here and I have probably absorbed about 50% of it. it's overwhelming for me. ...
Read more : CCSVI and change of seasons | Views : 1810 | Replies : 5

Good supplement for all stenters - abstract only

Phosphatidylserine-containing liposomes promote maximal survival of retinal neurons after ischemic injury

This study was supported by the AHA Scientist Development Award 0735014B (DI); NIH grant EY017991 and Research to Prevent Blindness (RPB) Career Development Award (VS); NIH grant P30 EY014801 and unrestricted RPB grant to the University of Miami Department of Ophthalmology.

Galina Dvoriantchikova1, Christian Agudelo2, Eleut Hernandez1, Valery I Shestopalov1,3 and Dmitry Ivanov1,4

1Department of Ophthalmology, Bascom Palmer Eye Institute, University of Miami Miller ...
Read more : Good supplement for all stenters - abstract only | Views : 2311 | Replies : 5

SammyJo goes to Stanford

10/29/09 My husband said Dr. Dake came out to the waiting room after my 2.5 hour procedure and gave an enthusiastic run down, on what I gathered from the corner of my eye was a flawless installation of 3 stents & 1 angioplasty. Both jugulars a mess, but azygos OK. Flew back to Seattle Sun. and I'm recovering well, but muscles still weak. Neck pain initially severe, a few headaches, but now manageable, just using ...
Read more : SammyJo goes to Stanford | Views : 11000 | Replies : 47

Five Month Update

Quick recap (this site has exploded, even in the couple of weeks my attention has wandered it has grown exponentially, hence the recap!).

Mel was diagnosed summer 2007, had high dose chemo (Hi-Cy/Revimmune) in May 2008. HiCy paused progression, gave her bowel function back but the rest of the symptoms (fatigue, depression, brain fog, left sided disability) had all returned with a vengeance by March/April of 2009. She had been on rebif and was taking ...
Read more : Five Month Update | Views : 2841 | Replies : 14

Erika is in Katowice

Hi everybody,

I thought you might be interested that Erika is now in the hospital in Katowice.
Rici talked to her just now and posted it in the German speaking forum.

Tomorrow they will do a MRI in Zabzre.
Maybe she will have the operation in the afternoon.

Keep my fingers cross for her.

Read more : Erika is in Katowice | Views : 4799 | Replies : 37

I have been accepted by Dr. Haacke !!!!!!!

About 10 minutes ago I received an email from Dr. Haacke himself !!! He has accepted me into his MS-MRI study in Detroit !!!!!!!!!!!!! I can hardly control my excitement !!! Of course I immediately emailed his research coordinator to begin all the scheduling and arrangements. My husband and I will drive to Detroit one day, have the imaging done the next, then drive home the next day !!!!! I'll keep you all posted....

Read more : I have been accepted by Dr. Haacke !!!!!!! | Views : 4594 | Replies : 25

Possible animal model for MS by inducing CCSVI ?

One of the problems with the scientific study of MS is the lack of an animal model of the disease. Now with CCSVI, it seems like scientists can cause stenosis by clamping the jugulars and/or azygous of mice (do mice have them ???) to force reflux. Then see if lesions develop. Seems like a good idea to me !!!! Any thoughts ????

Read more : Possible animal model for MS by inducing CCSVI ? | Views : 1937 | Replies : 6

Dr. Haacke and his study...I need more info please

I volunteered for Dr Haacke's study of narrowed jugular, and after seeing a few of my scans, he wants me to come for detailed imaging.

Honestly, someone e-mailed me out of the blue, because I had posted somewhere on the internet a year ago about pinched jugulars, and told me about this site. In a weeks time not only have I found out Dr.'s are researching this problem, but they want to study me. Kinda ...
Read more : Dr. Haacke and his study...I need more info please | Views : 2627 | Replies : 12


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