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: yesterday
Started by leela_pip. Last reply by Christina Mullins yesterday.
Started by Samantha. Last reply by quiet_waters Sep 8.
Started by Matt1983. Last reply by wandawoman10 Aug 25.
I would recommend you leave the same comment in the Spinal AVM group, Christina, so those members have a chance to respond, too.
Christina, sometimes members express a sense of "unworthiness" when they join, when they see others with more challenges than they have, but please don't feel that way. You have plenty going on, and you should fee comfortable posting about any issues that arise. AVMs are so individual that it is hard to predict how your recovery will be, but I hope some of our members here will share their experiences with you.
Hi Miriam, I had coloration on my leg as a tween but my AVM started to really change and cause swelling and was diagnosed when I was 14. It is in my left ankle and goes up to my knee but isn't too noticeable on my skin. It was active, moving, growing all through my teens. By the time I was 20 it stopped growing or moving and was very, very stable every year until I was pregnant with my son at 36 when again it was active, moving, swollen and sore. After I stopped breastfeeding my son it was again very stable. It really did react to the growth hormone in my body in those two times but never got to be very painful or stopped me running or skiing or doing anything I would normally do. I did (and do) wear compression stockings most of my waking hours and that helped a lot. I also moved to a cool climate city from a hot one, which also helps. Good luck to you and your daughter. I remember how scary it was to not know exactly what was wrong with my leg.
Hi, everyone, take a look at Rosario's discussion up above about hip or pelvic avms. Please advise her if you are able to.
Please take a look at Samantha's discussion about limb avms, and give her some feedback if you can.
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Posted by Svetlana on September 10, 2014 at 2:49am
It's now 2 weeks after the 3rd trip to Arkansas that was the most successful. Dr Richter did lasers and bleomycin injections (he chose bleomycin again because it showed better result than doxycycline), it worked very well, with no complications,…
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