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

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 : 10781 | 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 : 2752 | 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 : 4562 | 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 : 4337 | 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 : 1814 | 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 : 2528 | Replies : 12

FTY 720 (Fingolimod) Considered for Stroke (Ischemia)

Hi all

I posted some info about the development of FTY 720 (Fingolimod) for stroke in the drug pipeline but thought I'd post it here as well given the apparent reluctance of some neuro's to consider the impact of CCSVI in people with MS. (The link in that post is open access but you need to register) More info:

The immunomodulatory sphingosine 1-phosphate analog FTY720 reduces lesion size and improves neurological outcome in a mouse ...
Read more : FTY 720 (Fingolimod) Considered for Stroke (Ischemia) | Views : 1922 | Replies : 4

Lesion location relating to stenosis location?


I'm new here, and have spent 2 days reading a lot of the material. I'm exhausted, but in a good way. I made it through the 50+ page original thread, and a lot of the other threads. Thanks to all of you who are contributing and being guinea pigs! This is exciting stuff.

I'm very interested in the procedure, and have emailed Dr. Dake's office.

My diagnosis of MS was based on c-spine and ...
Read more : Lesion location relating to stenosis location? | Views : 1341 | Replies : 2

Hope Happens in St. Louis


I have a meeting this coming Wednesday, Nov 4, with THomas A. Woolsey (Google his name) and other researchers at the Hope Center for Neurological Disorders here in St. Louis. Please look at their website :

I have already talked to Dr. Woolsey about CCSVI and he is cautiously favorable to the idea, but says he doesn't know much about MS. I hope I will get to ...
Read more : Hope Happens in St. Louis | Views : 2607 | Replies : 15

CCSVI on TIMS front page?


What about writing a CCSVI news article to the TIMS front page?

It seems that the latest news article was added in 2007. Compare with

I think it's better if a native speaker writes a text. The submit link can be found on the front page.

Thanks to Juan for suggesting this.

Read more : CCSVI on TIMS front page? | Views : 1705 | Replies : 5


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