Hi everyone, two years ago my then 19-year-old daughter had an AVM rupture that almost killed her. She survived, but at first she couldn’t swallow, talk, sit etc. and her left side was totally paralyzed. After a lot of therapy and hard work she has been able to finish high school with good grades and she can walk well. She even goes to spinning classes and works as a substitute teacher every now and then.
My only concern at the moment is her hand. The arm moves quite well, but she really can’t use the fingers for anything. Spasticity brings a new level of challenge to the game. After a few rounds of botox my daughter’s been able to straighten the fingers a bit, but that doesn’t help much in everyday life. How probable is it that the fingers still continue to improve after two years? My daughter gets occupational therapy once a week and we stretch the fingers and use electrical therapy on the hand every night.
My daughter is 21 now. She’d like to go to university and live on her own at some point. With only one hand everything’s just really hard.
I’d be grateful for all encouraging stories on hand recovery, although I’m well aware that each story is unique. Thanks!
Welcome to AVM survivors! It is great that you found us and I hope we can help you a little along the way.
My favourite warriors on a similar path to your daughter are @Teiry and @Cornishwaves. I know, I shouldn’t have favourites; what I mean is that both are often in my mind as people struggling in the same way. I am sure that two years is still early but I’m sure the ladies and hopefully some others can encourage you that there is still plenty of recovery time to be had above two years.
You’re so sweet Dick!! :’) And I’m so sorry for being a stranger lately. Life has gotten so hectic lately. I have been struggling with tachycardia problems and was sent to see a cardiologist and failed my nuclear stress test. So they went ahead and did a CTA and now I am currently waiting on the results on the 12th and hoping that the news is not so bad so I am bracing myself you would think having gotten embolized would end my health nightmare but apparently not… so hopefully there’s not another monster hiding in the shadows because a brain avm was scary. I don’t know how I would handle anything in the heart…
As for the hand. Still struggling to open that sucker here too. I had to give up my CBD supplement when I had acquired a new add on antiseizure backup medication. My normal carbamazepine dose is high enough and this add on medication makes me feel high if I take my CBD and would be asleep most of the day. I am working on my masters at the moment and hope to get back to work afterwards so not a good idea to be taking it lol. Unfortunately even though my neurologist keeps adding on my Botox it is not high enough of a dose to open my hand and I do ot daily and still nothing;’( but I will report on the day that I figure out the perfect algorithm I promise
I was 19 when my avm went bang and I didn’t walk or talk for sometime. I’m over 50 now!
My recovery was a bit like playing snakes and ladders. Some things recovered well, like going up the ladder but then I’d fall over and drop back again.
On hand specifics, my right is good but my left is average and I can’t catch a ball . Early days i had to hold a stick and go hand over hand to rebuild my coordination. It was incredibly frustrating and somewhat boring but it helped. Play with soft toys too!
Timewise, I probably got 60% recovery in 6 months, 80% in 1 year and 95% in 5 years.
I wanted 100% but I’m told not to expect that.
I‘m in a similar situation and unfortunately can’t give recovery advice, but what I can tell you is that I‘ve been living alone for the first time for the last 1 1/2 years finishing university! I can’t use my left hand either and I‘m doing quite well on my own! some things can be challenging but you find your own solutions to take care of things even with limited hand function! It may feel scary but I know she can do it too
I just got my first dose of botox 3 days ago (didn’t even know this option existed until recently) and also hope to see improvement!
Wishing you and your daughter all the best for her recovery!
thanks for sharing your story and the good advice. I really appreciate it, and I’m sure my daughter will try the stick trick out. Playing with soft toys sounds like a good idea, too. 95% recovery is amazing!
thank you for your encouraging words. It feels relieving to hear that living alone is possible with one hand, even though I can think of so many problems with that. But there must be so many people out there who can manage that, and as you said you find your own solutions.
I keep my fingers crossed that botox will help you with your hand!
Please keep us in the loop on your daughter’s progress but also she can message directly if she wants. There is an amazing collection of knowledge and experience here but we’ve all had our own issues and adapted responses until we get a solution.
Tim
you would think having gotten embolized would end my health nightmare but apparently not… so hopefully there’s not another monster hiding in the shadows because a brain avm was scary. I don’t know how I would handle anything in the heart…
