We are AVM survivors, here for your support.
For those of us with AVM's outside the brain. Facial, Spinal, Lungs, Arms, Legs...wherever!
Location: medical/symptom type groups
Latest Activity: 18 hours ago
Started by Janey. Last reply by Lis 18 hours ago.
Started by jlizotte. Last reply by Claire yesterday.
Started by tinkersyl. Last reply by tinkersyl yesterday.
I don't know whether Russia has pain specialists as in the US, but if you have them, please consult one, Max.
I use also Norco aka Vicodin, but unfortunately 5-8 months and you become addicted, hooked... What to do in the future? Morphine?
Small is good! I hope it can be eradicated.
Thanks for your support. Mine is very small but i am curious about the effects this one has if it has been injured and if it is creating follow-on effects in other places that need to be managed. Hopefully Dr will have most answers.
Fennec, I really got educated by a youtube video I saw of a college-aged girl on a gymnastics team. She had Klippel-Trenaunay Syndrome, with a whole leg avm, and she was running, tumbling, and jumping with it. Amazing!
(sorry, extra "and" in there)
For all this, our members with Extremity AVMs can and do wonderful things with their lives.
Fennecfox, there is a lot of variability in foot and leg avms. They can be anywhere from marble sized (and removable by surgery) to taking up an entire leg. So, treatment plans need to be customized. Most foot and leg avms are involved enough by diagnosis that they cannot be entirely eliminated but must be managed. So, most of the folks on this group still have their avms to deal with. A minority have had them removed successfully by surgery, or completely "killed" with ethnanol or some other type of sclerotherapy. But, 90% are managing theirs on an ongoing basis. Sometimes they can ignore the avm and just go about their activities. When the avm "acts up" again, then it may be time for another treatment.
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