MS Discussion

MacGuyver4.2.0 said:

O.K. Been awhile since any updates in this important thread. Here's GOOD NEWS.

There are already patients IN THE U.S. that have had the procedure done. (CCVSI) I am also looking into the financials to see if I can get this done for my spouse... it won't be cheap.
We found an excellent site online (actually a big MS forum) that goes into the details and we have been in contact with one of the first people in the U.S. to have this done, with RESULTS. The big challenge it appears is NOT that the procedure works, but HOW to pay for it. If anyone wants the link to the site, PM me and I'll give it to you, but I won't post it here.

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Babs34 said:

My understanding is they are only under a study in Buffalo...meaning, NO actual surgery performed lest under their "study".....that's normal procedure under the guideliines of the bogus FDA.
What sucks is that I have an appt with a specialist tomorrow and I am snowed in and it took me four plus months to get an appointment.
//////Feel free to pm ME with details (the sooner, the better)......I'm all for sugery....been there, done that.
Til then, I'm sincerely thinking I will take my chances and drive the long distance...time is of the essence.

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MacGuyver4.2.0 said:

Babs- did you get my PM? It looks like you did- I just wanted to make sure. Take care.[/QUOTE

I DID indeed.......coffee? I LIVE on it.
It will do me no good at the moment however, haha.

Much appreciation for the links.......
I hope and pray it brings me, and all people cursed with MS, a CURE.

Hopefully, time will alot me to read prior to nearing appt.

-Peace-

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mr west said:

If there are itll be private cuz the nhs wont touch it till its been blind trialed and retested a zillion times lol. Maybe 2015ish if wer lucky

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bobtokes said:

i'm going to have ccsvi op in three weeks, i'm fucking shitting myself, LOL

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mr west said:

good luck mate, let us know how it goes>>>>>>>>>>>>

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bobtokes said:

hi ya westy, i've had the op, my left jugular vane was constricted in 2 places and the right in 1 place, i'm seeing a few improvements, my balance is a bit better, i look like i've had 6 pints instead of 9 pints when i walk lol, and i don't fall over when i have a toke
i ve got a bit of strength back, i don't get the fatigue in my legs as quick, i don't get as many headaches, but the best thing is i feel a bit more positive.

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IOWNEVERY1 said:

thats awesome your seeing improvement....my aunt has recently been diagnosed with MS and im going to talk to her about this. Overall do you think the surgery was worth it? PLease keep updating on how your doing, you can message me or post here. Good luck to you and ill be praying for you.

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Oldreefer said:

I've been battling this damn MS since '98....just kept working as long as my body would let me. It's pretty bad when it rears it's ugly head to take a bigger bite outta life as it did in '06.....haven't worked since.
The Zamboni treatment has been talked about for some time now in the MS circles ...my MS doc is aware of it....He's got me back to walking (carefully I might add) with the therapies I presently on....While MS is a life changer, it hasn't taken my motivation to get up every morning and enjoy what is left.
I'm one of the rare ones who actually acquired MS at a later age...instead of the typical 30-40s...+ I'm male...most with MS are female...it truely is a SUCK disease for a young person....but with the meds that are available these days, it is much more manageable.

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mr west said:

So Bobo, have u been improving steadily since the op?

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