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AVM Survivors Network

Stem cells for AVM?

Anyone ever tried stem cell to improve recovery? How did it work for you? Where can i find a safe FDA clinical trial?

I’m not sure that they are quite there yet with stem cells but would be interested if we are at that stage. I believe it will be the way forward in the future.

Cannabis oil has had quite a bit of success depending on the type of damage, it can be effective on nerves in particular and has also shown quite a bit of success in halting and repairing brain lesions. A close family member who had MS, and I say had, started Cannabis oil, 6 months later the lesions in her brain had halted their progression, 6 months later they had begun to repair. Her Neurologist now says that she no longer has MS though she will forever retain some of the damage. I have heard from other sources as well of more cases of cure in MS.

I haven’t looked into it yet as we can’t do it until the radiation has done all it is going to do for my son but his hospital are completely onboard with using it once we are there. They feel it could be a very good option to repair at least some of the damage caused by ruptures and radiation. A compound chemist can create the right combination and dosage depending on your situation. It could be worth doing some further investigation on this. To be clear Cannabis Oil will NOT get you high.

We have another thread going on about trials here:

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@Christine_Ottens
I first had a massive rare stroke in March of 2011 due to five blood clots -CVST was in a coma for a week, had brain damage and was paralyzed on my left side. A few months later I developed my AVM a DAVF and in Jan 2012 had my first angio and embolism.
The stroke left me with constant head and body pain and sleep issues. Sadly I am allergic to many meds and finally in 2015 I tried medical marijuana via gummies, topicals and tinctures. At the end of the year my brain scans showed no signs of the 2 strokes I had ( had a minor one during my embolism) MM was the only new thing I was doing. My drs think its the marijuana. So I totally believe it can help with damage although I still have the head and body pain. I do have hopes with progress they are making with stem cells in the brain that one day it will help for pain as its being shown to reverse paralysis.

Angela

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Thanks so much for that @Angela4. I have no doubt either. It has been shown to do amazing things with brain damage. Shame it has not assisted with your pain. Gets my goat that this is being blocked from so many because it provides cure, not ongoing income. In the same way that the single best way to reduce your risk of cancer is by taking multi-vitamins. Every doctor knows it but how many tell you? My dentist told me and then I confirmed it with numerous specialists we see. Not a one ever said anything about it, even when both my parents were dying of cancer. I’m sorry but I get angry. I think it’s reprehensible to prolong someone’s suffering for financial gain.

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