This Is MS Multiple Sclerosis Community: Knowledge & Support

I've been joyfully reading all the stories of MS improvement here. However, I'm starting to see more accounts of people needing to be re-treated. Maybe the deficient veins in the jugulars draining an MS brain can never be permanently fixed? It reminds me of the efforts engineers have made to keep the Mississippi river in one channel...when they fix it in one place, they create problems upstream or downstream.

Maybe my anti-depressant dosage is too small, and that's why doubt has crept in. I have SPMS, my recent drug trial (Dirucotide) was suspended, and I really don't want to progress. But I can't afford an annual $85,000 operation and really need to believe that my 62 year old veins can be restored to function before I begin testing, etc.

Thanks for any information.
ALL (A Longtime Lurker)

There's only been one person who had another stenosis crop up after treatment, as far as I know. And there's been no mention of a problem like that in the liberation 100.

Rokkit

Hi Joyce-
The truth of the matter is, we really don't know. Dr. Zamboni had a 47% reoccurance of stenosis in the same place in the jugular vein in his patients at 2 years....but they were treated with a balloon procedure and no stent. He had only a 14% rate of restenosis in the azygos veins.


Dr. Dake is treating most patients with stents, and most of the folks he's seen have only jugular stenosis. The rational is that the stent keeps the vein open and flowing. Dr. Dake has one patient out of 40 who has developed new stenosis in new areas after stenting, and he is still trying to figure out why. So far, no restenosis in the other stent patients, but we're only 3-4 months out. I do know that if my husband has an MS flare or exacerbation, we would take him back to Dr. Dake to check his stents. All relapses in Dr. Zamboni's patients occurred after restenosis.

This is all new...I really like your sense of humor and your Mississippi analogy...I'd say your anti-depressants are working just fine

Stay tuned,
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Eh? I thought there were indeed some restenoses among the Liberated Italians ... which all were accompanied by return of symptoms (very significant in my mind, pointing to a connection more important than "mere correlation").

However, these were not stented patients - they were ballooned open (veins opened up, but not left with anything to hold them open after the balloon was removed).

There have not been many stented patients with restenoses to my knowledge - just one I think?

heh, Cheer beat me to the punch with a better post.

Thanks for the clarification, Cheer. Sounds like stenting is the only way to go. And time is what's needed to really answer most of my concerns. Your generous information-sharing is doing so much good for so many people, and I am truly grateful for your explanation of this new line of hope, CCSVI.

Joyce