Phase 2 thoughts for after interventions...

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

Phase 2 thoughts for after interventions...

Postby jay123 » Fri Dec 04, 2009 9:14 am

OK, for after stenting or angio I think the next step that doctors are going to have to look at it is repairing the residual damage for those that already have it.
I have been looking at/thinking about this a lot. Here's a lot of thoughts I have had, just some ideas...
-To me the first thing is the iron has to be removed from the existing lesions. Is chelation warranted, or just go to ip6 or ecgc?
-Should ABCR's be continued?
-What about stem cells to re-grow some nerves?
-I have talked to my PT about this study ... ool=pubmed

which used electrical stim to get and or keep muscles moving while they recover (of course I haven't heard back yet...)
-General PT if not with stim
-Diet improvements (as Cheer has told me - but I think her and my wife must talk!)

Any other ideas? I do think that Dr. Z is on to something here, and I think all you "lucky' RR's are going to be very happy. Us progressive folks need to figure out how to get back to life now and I think it can be done with hard work. I know of one person who was done in Italy last spring who is now out of a wheelchair.
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Postby nives » Fri Dec 04, 2009 9:55 am

I would like to know history of person "liberata" in Italy.
Thank you.
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Postby Sharon » Fri Dec 04, 2009 11:01 am

jay123 wrote
Us progressive folks need to figure out how to get back to life now and I think it can be done with hard work.

We have muscles to retrain, nerves to stimulate -- I knew that sitting back and hoping that my muscles and nerves would repair by themselves was not the correct decision to make. I was back to an exercise routine two weeks after my procedure. I am now six months out.... I am stronger than I have been in three or four years. I am able to do Pilate movements now that I struggled with prior to the procedure. Fortunately, I have the time, the energy, and family support to encourage me and keep me on task. You are correct Jay--- it has been a lot of hard work -- the benefits are worth every minute.

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Postby Axiom » Fri Dec 04, 2009 11:36 am

I hadn't seen the abstract yet, but I have been very interested in the Terry Wahls story.

More info here:

I spoke with a PT who uses a lot of e-stim in his practice, and he told me he is reluctant to work with MS patients since one attack can wipe out any progress they've made. He has achieved remarkable gains with stroke patients though. If it's proven that CCSVI intervention really does halt progression, I'm sure he would gladly take on more MS patients.
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