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

In Honor of Jeff and Joan

On an earlier post, Joan (cheerleader) informed us that Jeff did the music for tonight's "A Dog Named Christmas" on the Hallmark Hall of Fame. The time is 9ET/8CT on CBS television. My husband and I are going to watch this show in honor of Joan and Jeff. It makes me happy that they have done so much for people with MS, and I am waiting to hear the music !!

For people who are ...
Read more : In Honor of Jeff and Joan | Views : 1657 | Replies : 3

Dr. Dake--Stint only?

Hello everyone. Thank you for answering my newbie questions. Your site and insights are all very helpful to me.

Question: Am I correct in assuming from what I've read that Dr. Dake is only doing stints with angioplasty and not just angioplasty alone?
Read more : Dr. Dake--Stint only? | Views : 1289 | Replies : 0

How long is wait to see Dr. Dake?

After much research I have sent an email request to Dr. Dake for an appointment. Does anyone know how long it is taking for him to respond and how long the waiting list is?
Read more : How long is wait to see Dr. Dake? | Views : 1951 | Replies : 2

Continue using DMDs after procedure...?

Hey all,

those of you who have had the procedure (stent or balloon) or are planning on getting it, are you planning on staying on your current DMDs (copaxone, rebif, avonex, betaseron, etc.)? What are everyone's thoughts on this?

I added a poll, but I'd like to hear why or why not,. I'm just curious about my future options if I decide to get this done - weigh costs/benefits - but wanted everyone's experiences, thoughts, ...
Read more : Continue using DMDs after procedure...? | Views : 1357 | Replies : 2

Known Risks/Complications of Angioplasty and Venous Stenting

Complications reported by Dr. Zamboni regarding "The Liberation Procedure"
-headache, nausea
-restenosis and need for reballooning

Complications self-reported by venous stent patients-
-headache, nausea
-accessory nerve damage caused by pinching in the lumen
-vagus nerve aggravation caused by pinching in the lumen
-risk of bleeding and other complications including stroke, due to use of coumadin, heparin and blood thinners as part of aftercare
-risk of venous stent migration into larger veins and the heart
-restenosis ...
Read more : Known Risks/Complications of Angioplasty and Venous Stenting | Views : 89085 | Replies : 129

CCSVI Research Transparency web site

Dear friends My wife has been afflicted with MS for 20 years now, wheel chair. WE live in canada and last week you may be aware that our national ctv w5 presented "the Liberation Treatment" CCSVI. Needless to say it has stood the canadian MS population on its head.

I/WE believe that due to the amount of Money involved in the Business of MS CCSVI has a difficult fight on its hands.

We further believe ...
Read more : CCSVI Research Transparency web site | Views : 1698 | Replies : 0

alternative MS mgmt for now

Very interested in all this new MS info. Collecting bits of info for my MD
to see. Hoping that it won't be too long until we can all get releif from MS.

Have been dealing with RRMS for more than 20yrs & remained in remission for almost 10. Bladder functions normally now, can walk easily with a cane & found alternative methods to sleep better than I had ever hoped I would.

No pain at ...
Read more : alternative MS mgmt for now | Views : 1358 | Replies : 0

Jugular veins


I have RRMS. Diagnosed 3 years ago. I am excited about all the CCSVI. I went to my neuro yesterday. I told him a lot about CCSVI.
He is pretty young and ready to try whatever. He hates big pharmas.
So we downloaded "Doppler guide" made by Dr.Simka and checked
my neck veins. My doctor said he is examining veins for the first time
and therefore we cannot expect any kind of conclusion since ...
Read more : Jugular veins | Views : 2575 | Replies : 1

Buffalo CTEVD Study MRV images

I participated in the CTEVD study on Monday and Tuesday of this week, while I was home in Buffalo visiting family for Thanksgiving. I'm glad I set this up back in September, because they were swamped with phone calls on Monday after the CTV W5 program! It was a great experience, I had the dopplers, MRI/MRV, study questionnaire, even a mini neuropsych exam and a neuro exam from Dr. Bianca Weintock-Guttman, one of the PIs ...
Read more : Buffalo CTEVD Study MRV images | Views : 4572 | Replies : 14

Is it a case worth trying ????

Hi group members,
I am Bibek from India,had several diagnosis since 2003.First PPMS than Aqueductal stenosis in 2004 , Deymelinatory dieses ? Progressive MS in 2003.In your opinion is it looks a case to try out CCSVI angle ?I have gone through the posts in this site and know there are much knowledgeable people out there.In Aug'09 I had a relapse ,the effects of which are still there,my legs are hairless below knee and seems ...
Read more : Is it a case worth trying ???? | Views : 1117 | Replies : 1


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