Hi, I will chime in periodically. I'm one of the fortunate survivors whose lifestyle didn't really change too much post-AVM. Get in the pool and move around. Even if it's only for a few minutes. Add another minute each day or so. Just keep moving and listen to your body. Happy Sunday.
Hi im 55 now and was 18 when i had my bleed. It cdnt be treated so i waited 20 hears until i had gamma knife which workdd after two treatments. Yeah you make me feel i have been lucky. Quite an experience.
Hi Bill, hi Harley;
In many ways the experience has been one of the most defining of my life. Undoubtedly it was a miracle, or several miracles in combination. One of the top rated surgeons that did surgeries on AVMâs happened to be practicing in our own backyard. One of his interns jus happened to be the doctor who reviewed the MRIâs. One of the best neuro units happened to be local. And, they said that I was about a month away from biting the big one!! (They said that a bleed would have killed me instantly). All of this happening with few apparent symptoms.
I donât talk about it much now; it was so long ago. I just canât get over the idea that it all happened for a reason. Now, if I only knew what that reason wasâŚ
Yes, the AVM experience is a defining element of our lives. I'm actually reminded daily of the experience: the injuries from car accident I had that ultimately lead to the discovery of the AVM are my reminders. Problems with my neck began manifesting themselves, causing headaches, about 7 years ago. But with frequent stretching and OT type exercises they're manageable. So many of our AVM brethren have so much worse. So I have no complaints.
Be well...
Hi charles, similar situation, aphasia is the worst part of my avm, by a long shot. Every time i have to speak or listen, i have to work so hard, every time i remenber that i wont be able to communicate better than "normal" people. It can be so very frustrating.
Did u manage to get back to work charles?
harley, did they manage to wipe out the avm altogether after 2 doses? They managed to remove 90% of mine, but 10% is too far inside so i have a small amount left.
Hi Rich, where did you have your gamma knife and what part of your brain is the AVM in?
Daven. why do you presume most âlong termsâ would have moved on from the original incident, or have no reason to be on here? My AVM bled in 1958, when I was 8 years old. The experience shaped my life, changed who I was, and left me with left homonymous hemianopia. I fit nowhere comfortably, no one knew what really happened back then, and I had a craniotomy, and I was lucky enough to live. I will always be around this site until I canât anymore. This site validated me more than anything in my life.
beans
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I am also 55 and had my bleed in 1974. They never operated and it took 31 years for mother nature to heel me. Stay positive !!!
Sorry rich i went off line that day. Yes they told me and i quote its as if you have never had one at all. But i still have seizures complex partials. Yes im not under follow up anymore it was just a âcome back if you need toâ and i still go to the epilepsy clinic.
I was also 17 with my first (and only) bleed. I was miss diagnosed until I was 41 when my numbness began to increase and was causing me noticeable limp. I then went to a different neurologist who eventually found my thoracic AVM. When I was 48, I had to have it removed surgically. I have to wear a leg brace and have left leg numbness. I have neuropathy pain. I still work full time and continue to be quite active.Live is hard, but worth living!
I got my GK from here - http://thelondongammaknifecentre.com/ Harley street, dont know if the NHS can use that clinic anymore!
my brain was om the left side, worst bit was the aphasia still sucks :(
27 years post bleed. I think recovery is something that lasts your whole life. I have seen many people who started yoga or physical therapy years after and had improvements. My husband had an illness a few years ago so he can no longer work. I stepped up to the proverbial plate and returned to the work force. We survivors are strong people!!
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Rich, I think you may be asking how all are fairing post rupture or treatment? I like to look at it like by age, since most all of us are born with our avms. I was diagnosed in '87, had treatment in '09(4 embos, vp shunt, no rupture) and will be 42 next month. Have lead a relatively 'normal life and stayed active with sports and the gym. Congrats on your recovery. GK
Rich you give me hope and reaffirmed what I already knew but just wasnâtready to completely acceptâŚ
I just hit 2 years since my rupture and I just hate the loss of independence (no driving,working⌠etc. but I guess I just keep trying to make today a little better than yesterday and keep movind forward.
life is still good but I really miss the old me!
hi mike, must be very frustrating about the work/driving. Perhaps theres a different job you can do - i have often thought about doing volunteer work, but decided to go back into studying again.
yes; I just started volunteering at the local library to see what I am capable of doing and get some social interaction during the day.
I am hoping I can keep overcoming some of my deficits and build a new me⌠time will tell.
Ditto. Big time. I know this very well. God bless.