This Is MS Multiple Sclerosis Community: Knowledge & Support

So there is at least one serious complication that was at least related to the angioplasty. How many people have gotten the procedure? Out of the reports that i've read this must be at least 1-2%? And alot of those reports were for stenting so maybe closer to 3-4%?

(Oops.)

Rici isn't dead. His most recent post was this morning.

Sorry I got confused there reading another post.

But still a big complication right? which was my original point, not death.
I really need to get more sleep.

I was thinking the name Rita in my head for some reason.

Someone named Rita died recently but she wasn't someone who had the CCSVI procedure.

Yeah sorry, both of those things were new to me and got mixed up in my head for some reason.

To bad this does not apply to CCSVI research.

i'll be the first to admit i do not have the expertee with all these medical terms etc. and i really admire everyone that does. i know that from the time they whipped it on me that i had ms not one neuro. or any other dr. ever gave me an answer that made sence. first question that popped out my mouth was why after a bad fall and i stoved my whole r. side of my body and whiplashed my neck do i all of a sudden have ms. dr.'s answer was- oh a trauma doesn't cause ms. ok what is it-dr. says we "think it is a virus." i asked-well my husband's first wife had ms-he was in vietnam-could he be carrying a virus that and he is a carrier like a typhoid mary but he doesn't get it. dr.'s answer was oh no ms can not be sexually transmitted. ok, i said you say ms is caused by a virus--aids is a virus and ms is a virus but it can't be sexually transmitted. ok? then you hear-well your immune sysem is nuts-but they can't tell you why really. all through the last 20 yrs. not one of my questions were answered. oh, yeah i have ppms and as you know not too many treatments for that one but they wanted me to try some of the other drugs that were not even for ppms "maybe" they might help-but you run the risk of screwing up your liver or your heart and god only knows what else. and the list goes on and on. i opted not to take any ms drugs at all "MY CHOICE." maybe that is why at nearly 64 the only thing wrong is high blood puressure-which probably would go down if i weren't over weight. i have not followed the greatest of diets or anything else special. HERE IS MY POINT-FOR 20YRS. I SAID I HAD "BS" BECAUSE NOBODY SEEMED TO HAVE A CLUE WHAT MS WAS!! THEN FINALLY HERE IS CCSVI AND CTOS. THIS COMES INTO PLAY FOR ME PERSONALLY. AND SURPRISE!!!THEY EVEN GOT SOME ANSWERS-NOT ALL OF THEM-BUT ANSWERS!! AND THE ICEING ON THE CAKE IS A LOT OF PEOPLE ARE IMPROVING. LIKE MS HUSBAND OR CECE SAYS WITH WHAT WE KNOW IT IS "WORTH THE RISK." AND THE RISK IS VERY LOW. EVERYBODY DISCUSSES STUFF HERE AND I DON'T PICK UP ON THAT ANYBODY IS TRYING TO TALK US INTO DOING ANYTHING. "SO, IF YOU THINK CCSVI OR CTOS IS SUCH A BAD THING THEN YOU PROBABLY SHOULD PICK UP YOUR BALL AND BAT AND GO HOME!!!"

What do we "KNOW" that is worth the risk, and how do we know the risks are "LOW"?.... That's what I want to know. What about in the long term?
And yes, people here are telling people to do things.
A woman who said she didn't have any money inquired whether it would be worth it to take out a $10, 000 bank loan that she couldn't afford and she was told "You'll never regret it!" How do they know that? What if the experimental procedure went wrong?
People are telling people to try to sue for "human rights violations", people are saying that "Liberation" saves peoples lives, etc.

Guru did pose a specific question which was looking for information I think and not opinion. I think he deserves an answer. I am not a doctor so I cannot comment on the prevalence of adverse events in arterial angioplasty but I would not place much reliance on them anyway. I did discuss this with my GP and my wife who works in hospital before I went to Poland. I would suggest you do the same.

There is data we can look at for venoplasty in the jugulars. It is those people we have heard about on TIMS who have been to Poland or Bulgaria or have had venoplasty somewhere else for CCSVI. At a rough count Simka has done about 500, Kostecki 20, Grozdinski 50, Sclafani 40. Say 600 all together as a rough guess. Going by reports from Simka most people get one stent and at least one side ballooned. So between 300 and 600 have had angioplasty. No deaths have yet been reported so no actual percentage can be calculated. If there had been one death it would be between 0.3% and 0.15%.

It also interests me that so few people have reported re-stenoses. Zamboni’s rate for re-stenosis was roughly 50% after 18 months. So we should get 150 – 300 people getting the problem. It is roughly six months since people started going. So I think we should have had more than a handful by now. It will be very interesting to see how many more show up.

Good luck with your decision Guru.

Well I've mostly just seen results here on the tracking forum which has 88 posters, not all of whom have had the procedure done.

Thanks AMcG!!!!!!!!!

_________________
We must learn our limits. We are all something, but none of us are everything.
GuRu
RRMS Dx 07/09

WHO WILL APPROVE LIBERATION TREATMENT FOR MS?????????????????

The Same Bas****, they approved all these drugs for MS ( Avonex, Betaferon, Copaxone and Rebif ) they had clinical trials, they had enough research on these drugs????? And what now????

http://www.telegraph.co.uk/health/healt ... ients.html

The Same Bas**** ??? I am sorry to use this word but I don’t have any alternative.......

_________________
We must learn our limits. We are all something, but none of us are everything.
GuRu
RRMS Dx 07/09