The first national CCSVI treatment study is approved

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

The first national CCSVI treatment study is approved

Postby HappyPoet » Wed Sep 01, 2010 6:48 am

It's a great day for CCSVI.

It is a pleasure to announce that Dr. Mehta's "Study to Evaluate Chronic Cerebrospinal Venous Insufficiency (CCSVI) in Multiple Sclerosis Patients" has been listed on clinicaltrials.gov, a service of the U.S. National Institutes of Health.

The trial is now open and recruiting patient volunteers. All information can be found here: http://clinicaltrials.gov/ct2/show/NCT0 ... svi&rank=1

This is a large-scale, multispecialty, double-blind, randomized venoplasty treatment trial.

~HappyPoet

edited for clarification/correction
Last edited by HappyPoet on Sat Sep 04, 2010 3:54 pm, edited 1 time in total.
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Postby ErikaSlovakia » Wed Sep 01, 2010 6:53 am

Great!
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby PCakes » Wed Sep 01, 2010 6:55 am

!! very exciting news !!
:D
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Postby sbr487 » Wed Sep 01, 2010 6:57 am

Round 1 goes to US :D
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby bigfoot14 » Wed Sep 01, 2010 8:07 am

Exellent, a large double blind study, just what the neuros have been asking for

I just called and got Megan on the phone on the first ring!

My wife is 55 and will be 56 before the trial starts...so she is on the waiting list for treatment outside the study
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Postby MegansMom » Wed Sep 01, 2010 8:48 am

I guess this is good news, but hey, I wouldn't want to be one of the sham procedure patients.

I guess its good if you don't have health insurance because they sure will have to be covering the procedure cost. But asking people to get a venogram twice is a lot to ask.

If I had the anomaly I would want it fixed pronto! Afterall we are talking about potential Brain damage and MS progression without venous impairment repair.

Bravo to those brave enough to join this study!
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Postby eric593 » Wed Sep 01, 2010 9:24 am

MegansMom wrote:I guess this is good news, but hey, I wouldn't want to be one of the sham procedure patients.

I guess its good if you don't have health insurance because they sure will have to be covering the procedure cost. But asking people to get a venogram twice is a lot to ask.

If I had the anomaly I would want it fixed pronto! Afterall we are talking about potential Brain damage and MS progression without venous impairment repair.

Bravo to those brave enough to join this study!


Without clinical trials, there would always be questions as to the efficacy of treatment. It is a necessary evil, in my opinion.

People had monthly IV's of fake Tysabri and fake Novantrone, and in the CRABs, people injected themselves weekly with saline. The risks of IV's and many injections and other risks to the placebo group are shouldered every day in the name of scientific method.

This is not so unusual or outrageous. It's par for the course for scientific research. MSer's in the gamma interferon trial on the real drug made their MS WORSE by receiving the active ingredient before the trial was halted. We NEED this kind of information to know the validity/risks of a treatment. Many more MSer's would have tried gamma interferon if it hadn't needed to go through a trial first and determined to be harmful.

Yes, definitely we need to appreciate those who are willing to participate in blinded trials because there are sometimes risks involved in the name of furthering research and protecting the larger patient population.
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Postby Blaze » Wed Sep 01, 2010 9:50 am

I'd be willing to participate in the double-blind trial, even if it meant there was a 50% chance of the "sham" treatment. Unfortunately, at age 59, I'm not eligible. I wonder why. There was a woman who was 72 who was recently successfully treated in Mexico.

I think I am still on Dr. Mehta's waiting list for treatment.

This is great news overall. Congratulations Dr. Mehta and team. I'm just sad (and mad!) that Dr. McDonald has not yet been able to get approval for his trial in Canada.
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Postby Cece » Wed Sep 01, 2010 10:19 am

It's a 2:1 ratio so odds are 66% treatment, 33% nontreatment. PPMSers excluded, only RR and SP.
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Postby Blaze » Wed Sep 01, 2010 11:11 am

Oops! I missed that 2:1 ratio. Those are good odds of getting the real thing in the trial.

Thanks for clarifying that Cece. Now, if they would only include us old fogies over that ancient age of 55!
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Postby CureIous » Wed Sep 01, 2010 11:49 am

My root canals/crown treatments were way more painful and exhausting than the angioplasty. Well the root canals weren't too bad, not like you you think, but the fitting in of the crowns, oh boy.

If I had to do another angio (and I had 2 already), I'd jump up on the table and say, "what's the hold up, let's get it on!"... lol. The first with four stents, of course had one night of misery followed by rapidly increasing days of improvement. The follow up angio though, was an absolute cakewalk compared.

So glad for this study, and that the sham model made it through. If someone is bad enough that they can't afford to wait for a little bit longer, they shouldn't be in waiting lines for trials in the first place. I know some are there out of necessity, and I get that from a poor person's perspective, but getting in and getting a free procedure is a crap shoot to begin with, wanting to also set the conditions for that is beyond possible in my book.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby hannakat » Wed Sep 01, 2010 12:03 pm

? Mr. Success... You lost me...but that's not particularly a hard thing to do.

This is great news! Thanks for the scoop HP!

~^,,^~
Last edited by hannakat on Thu Sep 02, 2010 1:02 pm, edited 1 time in total.
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Postby MrSuccess » Wed Sep 01, 2010 1:10 pm

hanna - this is beyond great news.

As far as I know .... and I have followed this from day ONE ..... the CCSVI corrective procedure ...... has been reported as being almost painless .... FOR MANY .....

The announcement by HappyPoet was just super super good news ....

A CCSVI Trial ...... Starting NOW ....... conducted by the NIH ......

600 lucky bastards ....... getting the procedure .... AT NO COST .... no begging or deceiving anyone or sketchy insurance claims .....

All in All .......... A superb day .

Mr. Success
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Postby MrSuccess » Wed Sep 01, 2010 2:53 pm

i hear ya kat :wink:


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Postby KateCW » Wed Sep 01, 2010 3:12 pm

This IS great news, but as a PPMSer, I do tire of constantly being excluded from clinical trials(drugs or whatever). It's like we are beyond hope/ help........
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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