This Is MS Multiple Sclerosis Community: Knowledge & Support

Please someone refresh my memory: If one has secondary-progressive, does the treatment help or does it have no effect?

Well I was diagnosed as PP MS by my neuro (but according to Dr. Zamboni's criteria it should be SP MS as my azygous vein is fine).

After my first procedure I experienced dramatic improvements in all my symptoms. Unfortunately, the internal jugular veins re-stenosis and all the problems returned after six days.

I had a second procedure and the IR could only open up the left hand side (right side untreated) and there has been some improvements. While not as extensive as after the first procedure, the improvements have lasted for over six weeks now.

I have devised an anti-iron treatment plan and it does seem to be helping.
I have a suspicion that the liberated patients who do not experience rapid improvements probably have a lot of accumulated iron in their brains and spinal cords. Treating the vascular disorders is the first step but you also have to get rid of the iron (this is one of the main points of Dr. Zamboni's theory but seems to be overlooked).

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

The jury is still out about who benefits from a liberation treatment. I'm considered SP, but my only symptom is that I have trouble walking. My procedure was 3 weeks ago, and I'm just starting to see a little more strength in my legs. The only other change is that, soon after the procedure, my feet were no longer purple.

Some people get great results right away, some eventually and a few, none at all. It seems to be random, but since there are probably less than 1500 people in the world who have had the procedure, and most of them are too new to provide long-term results, we just have to wait and hope that each doctor adds data to the pool for everyone else.

At the SUNY yesterday, Dr. Siskin displayed a slide that clearly showed that one third of the patients he treated experienced very significant symptom improvements (most often involving cognitive, heat sensitivity, and balance and coordination issues), one third experienced slight improvement, and another third experienced no improvement whatsoever. The doctors did note that treatment efficacy didn't appear to be dramatically better or worse across the different "flavors" of MS (RRMS, SPMS, PPMS), although one of the doctors (in all honesty, I can't remember which one) did say that he saw some very good results in SPMS patients.

Regarding restenosis: Dr. Sinan, who is leading the Kuwaiti effort to treat as many of their MS patients with the liberation procedure as possible, has made significant use of balloons much larger than those used by other physicians, and has forgone the use of stents (due in large part to the orders of his government). He did state that aggressive balloon angioplasty procedures largely negated the need for the use of stents, and was quite adamant that treating valves in the lower part of internal jugular veins cleared up most of the problems seen higher up in those same veins. The other two presenting physicians were more open to the use of stents, but only after balloon angioplasty had failed repeatedly to open narrowed areas of the veins in question. The general consensus seemed to be that the use of stents should be considered a last resort, but that their safety and efficacy profiles appeared to be well within acceptable parameters.

How many patients were in Siskin's group? Were the reported improvements immediately after liberation?

Were the reported improvements from the Bulgaria group immediately after liberation?

Brian

eveable, not to be unpleasant, but if you are going to lift entire passages directly out of my blog, an attribution would be nice...

If the above passages interested readers, you can find the entire post here:

http://www.wheelchairkamikaze.com/2010/ ... osium.html

bretzke, Siskin's sample size was well over 100 patients. The improvements were seen both immediately after liberation and over a period of time after the procedure.

I believe the same can be said for the Bulgarian group...

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Marc
www.wheelchairkamikaze.com