The Brave Dreams clinical trial of venous PTA

[1eye]

https://jamanetwork.com/journals/jamane ... le/2664001

This trial will be accepted by most physicians and scientists. While it recommends follow-up trials the main conclusion was that PTA (the so-called and misnamed "Liberation" procedure) is safe, but ineffective. This was a sham-controlled, randomized trial, with randomization 2:1 in favour of the real procedure. This procedure, PTA, cannot be recommended for treatment of MS.

I have long been in favour of this procedure, and I believe I have had temporary and long-term benefits from it myself. However in light of this paper's results I would not recommend it to anyone. I am just glad I had it, and had a chance to pioneer use of it. I am confident that research into CCSVI will continue, and I hope to encounter some of the people I met along the way, again, because I believe strongly in what they have done.

I have benefited from Dr. Zamboni's other results, in that I have mostly conquered my tendency to fall, which is directly due to CCSVI. I hope the temporary CCSVI-like effects of long-term living in weightless environments can be successfully treated, with something better than PTA.

[1eye]

This month there was also supposed to be something about the MSRV treatment. Anybody heard about that one yet?

[1eye]

I just received this:

Hello, I have had MS for 10 years now, I'm slowly getting worse. I have decided to go have a CCSVI done but then I read your comment that you wouldn't recommend for anyone to do it. I'm 44 years old live in NB Canada and like everyone else am trying everything that I can to stay healthy. Do you really feel that it's of no benefit?

Beyond what I said, I have no more. I got a pop-up ad on this site, that lead to http://daytonir.com/ccsvi/

You pay your money and you take your chance, when you're dealing with love and romance...

-- Bruce Cockburn

[tzootsi]

My wife had 3 CCSVI treatments about 6 years ago. The first one helped noticeably for about 4 months, the other 2 did little if anything. I think there is definitely something to the whole CCSVI issue, but we don't have the real answer yet. Perhaps lymphatic drainage is also part of the puzzle.

[Rogan]

I hope we all collectively as a group understand blood flow to the brain and back to the heart.

It is common sense that blood flow helps.

56% had better blood flow after PTA.

Evolutionarily vessels came before neurons.

[Duderock67]

All that blood pooled up, for who knows how many years then suddenly released with the liberation procedure might just explain why almost all of us ms'rs found immediate relief. I'm of the mind that, although the "Brave Dreams" report was less than hoped for, it certainly proved that drainage is safe and easily accomplished.

[81Charger]

In the CTV article about this trial, at the end I read this quote and I think that I should have the procedure done:

That research that could potentially explain cases like Tammy Lynn Tremblay. She was diagnosed with MS in 2006, and began losing strength, balance and vision.
"I would end up in a wheelchair. It was scary -- very scary," she said.
When drugs didn't stop her decline, the Ottawa scientist researched Zamboni's theory and went to Poland in 2010 for angioplasty, to open up blocked veins.
"The great thing is that I have never had any other MS episodes since and this was 2010. So, after seven years, if this is a placebo effect, it's a pretty good one."
Tremblay still holds out hope for her future.
"There is no cure for MS," she said. "I would still encourage them to pursue and investigate this possible avenue."

Can anyone explain this??

[ElliotB]

Yes, MS does not follow any specific path and its course is different for everyone. The treatment may have helped - or not. There is no way to know for sure. Like ALL known treatments/protocols/diets, all seem to work for some but not all.

The premise of this story is not an uncommon one for those with MS, one example that comes to mind, Dr. Terry Wahls. Many others have published similar stories/results touting whatever they did as the reason for their success.

Add my story to the list - when I was in the diagnosis process about 5 years ago, I was deteriorating at such a rapid rate I felt I would be in a wheel chair within weeks. Like most, I got better - I can speculate as to why but there is just no way to know for sure. Had I had the CCSCI or PTA treatment, or something else specific and didn't know any better, I would be advocating it as many do. But I am smart enough to know that perhaps the things I do/have done have helped, or maybe not - there is just no way to know for sure...

[vesta]

I hope we all collectively as a group understand blood flow to the brain and back to the heart.

It is common sense that blood flow helps.

56% had better blood flow after PTA.

Evolutionarily vessels came before neurons.

I also participate in the French MS site ForSeps.org. One lady reported that in 2012 her husband was lucky to be treated by Dr. Sclafani in New York. The procedure lasted 3 hours 30' and her husband enjoyed a spectacular recovery. Once returned to France his Neurologist was impressed, saying his recovery was incredible, miraculous. However, it lasted only 4 months. Dr. Sclafani had warned her husband against carrying a heavy weight with his arms down. Apparently this caused the veins to collapse again. (She conjectured that carrying weight on the head would prevent this outcome.) Stents might prevent this but there are drawbacks to stents. Anyway, I think one should discuss one's personal situation with an experienced Interventional Radiologist like Dr Sclafani.

[1eye]

http://www.macleans.ca/society/a-confli ... effective/

I don't guess anybody is going to actually do any follow-up, because MS doctors just view this study as an excuse to go on believing testing is also ineffective, that there's no such thing as CCSVI (just ask any astronaut), and most of the fake news that they have invented about it. If they were real scientists, this study would prompt further investigation. Luckily there actually are some real scientists around.

If it were not for Dr. Zamboni, I would still be falling too much.

At least they are prescribing biotin, even though I'd guess many patients don't know of its effect on thyroid test results. Probably it should not be taken until after a baseline thyroid screen.