Update on my recovery journey

After yet another round of hyperbaric chamber sessions and using my myomo :mechanical_arm: I have started noticing my left affected arm sometimes (what I call drop like when your arm falls off the bed when you’re laying down feeling) or feel as close as normal as possible happen out of the blue and my index and thumb, as well as middle fingers move on command. They are still not useful to grab or do something but movement is better than nothing!! I am psyched you guys!! I also went for a 1st opinion about my drop foot (in Mexico to a traumatologist) and turns out according to his professional opinion, it is not drop foot because it isn’t flacid, but instead club foot. I wasn’t sold on the surgery despite similar just because I don’t know I just don’t think it is club foot and I don’t want to get a surgery I don’t think I need. He would essentially be adding or elongating my tendon rather than releasing it. BUT he said it would be making my using of my afo more comfortable and not stop using it… The reason I’m seeking a surgery is to stop wearing it, not keep on using it. So I don’t know you guys, I will seek that 2nd opinion and based on what they say, is what decision I will take. Another thing I noticed with my 3rd oxygen therapy was that it’s a bit easier to walk barefoot ON SOCKS. Still not “normal” walking though. And I know I know I may perhaps never get to normal or full recovery but y’all know I seek as close to 100% as possible or at least to somewhere I am comfortable and say ok I’m done digging deeper into my recovery journey. Hope everyone has been doing good and for anyone who is new, don’t give up!! It’s not always as frustrating, heartbreaking or impossible to deal with having an avm or recovering from the damage it does before we murder the little demon. 5 year angio coming up in November as well!! Crazy that it’s been that long since my stroke…


Great to hear from you Teiry! Always like positive updates. Take Care, John.

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Where is your AVM? You are the first person I’ve read that had both legs and arms affected. Mine is spinal at T5.

My workarounds for foot drop - mobility service dog and safety caps on my shoes. The foot that drops gets so numb sometimes I lose track of it. I’ve broken toes before, which is ok in the moment when it’s numb, but not so good when the numbness wears off. I slammed my dropped foot into a curb a couple weeks after the only boots on sale in my size had aluminum safety caps instead of soft toes. My service dog kept me from falling over, and I fully expected to have busted toes again. Big scuff on my new boots, but other than that no harm no foul. My neuro team and podiatrist think that’s a great workaround, so I now have summer shoes with safety toes. Keen has a nice line of work shoes with safety caps for the toes. My podiatrist said to check out Timberland too. My ankle gizmo for drop foot is super uncomfortable so I gave up on it, hence the workarounds.

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Hi Teiry, second opinions are always good. This all sounds like good news. Prayers and good thoughts coming your way.