looking for some advise on how long how much recovery you have made .I left hospital june 1st I have problems walking(balance) double vision and a weak left hand it will not do anything i ask…I have slowl
y improved can walk around house unaided now any advise stories please
Hi Emma. I know it does not seem like it but you are still in what I call the early days of recovery. According to your profile page you had a bleed…the brain needs time to heal. I know how frustrated you are feeling right now. Patience is important. Have faith that you will recover!
Hi Emma. Like Barbara said, it takes time, lots of time and patience. I’m over 3 years post bleed. While some things I probably will never get back, I’m doing fairly well. I still have balance issues and I get dizzy a lot. The most major deficit I have is that I have a visual field cut on the left. Other than that, physically I’m doing great. I’m as strong as I was before my bleed. Considering I couldn’t even hold my head up at one time, I think that’s pretty good. Give your brain a chance to catch it’s breath, so to speak. This was not a minor thing that has happened to you. You survived something that many people do not, so that fact that you’re where you are now (even if it’s not where you want to be) is awesome! Get lots of rest and don’t be too hard on yourself. Improvements will come.
Its been 6 months since my sons AVM burst, he spent 73 days in the hospital and is now doing much better. He also had to learn to walk, eat, etc. He still has balance issues, cant walk in a straight line and bumps into things but he is improving each day. His right hand is affected, he has learned to write about the 4th month but he cant control fingers well at all. Therapists told us that the fingers are the last thing to come around and with what happened to him he has improved super quick. If this is quick, I would hate to see slow. I have talked with alot of people and I know it takes 6-12 months for most but it seemed recovery was very fast at first and therapy is going slow now but they tell me that this is normal. The great thing about this site is we all know what your going through because we have all been there, it really is important to stay strong and focused on your recovery. My son has bad days as well and totally expected so use family/friends to help you through as much as possible and good luck with recovery.
thanks for replying to my question.my bleed was in the same place as yours I also wear glasses with one side covered over.when you say you can geto work which is great how long did that take . i am finding the balance issue really hard and hoping I will be able to walk outdoors unaided, typing with r hand apologies …I travelled australia 10 years ago and loved it
Hi Emma, you will see our story above with my wife having her GK treatment around April of this year.
Our doctor says to monitor it and if it gets worse to call again. We are wondering if anyone is getting the same symptoms. Hope you’re getting better.
Emma, we are assuming that your son had a GK treatment also?
My wife had left side AVM bleeding that effected her right side. Her therapy recovery was fast and still progressing.
Just keep working at it and it will get better.
Andy
On the worst days, when you’re sick of it all, just remember how lucky you are to have such a crappy day. You have the opportunity to get better, and to see the day. Not everyone does. For me, even a crappy day is good if I just remind myself of just how lucky I am.
Also, it would be so strange not to be very angry, very frustrated and very pisseed off at times. just try to concentrate on what you have, not what you don’t. The people around you that are positive energies. i’m sending you some positive energy right now, praying for you to have a good day!!
I am a huge fan of video games like Xbox kinnect and wii sports/dance games. It’s a fun way to do repetitive actions. I love it, and it really improves all my physical issues. Just always make sure its done safely, and build up. It helps both energy and coordination. I LOVE the wii tennis games in particular and the dance ones. Simpler games like bowling or golf are probably great for any level. It’s all about repetition. Just like learning a language. You wouldn’t start to learn italian and be fluent in a month, and neither is a huge recovery. The games make such a grueling process fun, can’t bea that. I think ipad games would be good for fingers and hand movements, but i just had typing when i started. and now i use both hands since that helps my left arm a TON. Pretty much perfect with my left hand now.
Recovery is very very slow. It’s not noticeable until you look back at the last month or 2 and you realize that you couldn’t do X, Y, & Z and now you CAN. I’m exactly 1 year post AVM surgery and I realized I have come a long way.
I’ve got 2 girls. They were 6 and 9 when I had my bleed. (12 and 9 now). When I first got out of the hospital I couldn’t walk unaided. It took a couple of weeks before I could and even then it was very slowly. I would also suggest trying a Wii Fit board. They had that in the rehab unit I was in and I used it there. I got one of my own when I came home. It helped me a lot with my balance.
Hi Emma, I had my bleed in late May this year - close to the same time as yours. I was in Spain for a week’s holiday. I was in hospital for 10 days. I was told to rest and do nothing for 2 months. I know my symptoms are not as severe as your own. But the significant thing is that I have improved. Its not possible to see the changes on a day by day basis. But I am much stronger than 3 months ago. I am sharper mentally. The ability of the body to recover from a severe trauma is really encouraging - the important thing is that we are recovering and will continue to do so. I have learnt that I continue to need plenty of rest and be patient while trying to do something physically and mentally challenging every day. I started with crosswords and sudoko and short walks. Wishing you all the best.