We are AVM survivors, here for your support.
This is for the people in their early 20's to connect and share their stories and all around just chat.
Latest Activity: Feb 28
Started by Michael. Last reply by Michael Jun 10, 2013.
In my case, I'm glad for my AVM to have been discovered and treated at a young age. Having had these medical events occur early in my life has done two (main) things for me. Looking at the…Continue
Cmd91, I can tell you my AVM was discovered after I had a seizure, my first one, when I was 15. 7 months, 8 embolizations later I had a 23 hour craniotomy split over two days. Three more surgeries after that (operations dealing with hydrocephaly, installing a shunt, then repositioning the same shunt), I had(what I thought was) my surgery on my 16th birthday. I had a stroke, lost all feeling and motor function on my left side. I was in medical rehab for 5 months before I really regained any use of that side. ( I was left handed) I also was diagnosed with left homonymous hemianopsia. Now, at 23, I've got full use of my left leg again, it is weaker lacks fine motor control. I can feel my left arm and hand again. Like my leg , Less strength/motor control but I can say with a degree of certainty not immediately, but it does get better. As difficult as it is and as cliché as it sounds, the largest thing is to give it time. While passing time, working the affected limbs will help the recovery.
Welcome cmd91! My situation is very similar to yours. I was 18 (now 21) when mine in ruptured, no idea it was there. I was sleeping when I woke up and was mumbling sounds that didnt make any sense. My right side was completely numb. So my roommate called 911 and they rushed me to st. francis hospital where I was in a coma for 15 days. When I woke up from the coma, I lost my speech and ability to move my right arm and leg completely. After almost 2 years of therapy, I am now walking without anything, just a little limp and talking almost perfect just a little slow. I expect my speech to continue to improve, not sure about my arm and leg. My arm has definitely come along the slowest, as I have no movement in my hand. My AVM was in the left frontal lobe and I had 2 craniotomies, 1 to relieve to pressure from the blood and 1 to remove the AVM. I have seizures now due to the iron in the blood. I guess it reacts with the neurons in my brain. Anyways, my doctor and I are trying to get them controlled
Hi everyone! I'm very new here, and I am 21. I had a stroke on February 2nd caused by my AVM rupturing. I never knew I had the AVM as I would only get headaches that I thought were normal. My AVM was on the left parietal lobe of my brain, and I had an embolization two days before my craniotomy which I had on Valentine's Day. I was in the hospital for a month and learned to walk and talk again with therapy; the hardest thing to get back has been my right hand, I still can't write or even type that well. Have any of you experienced problems with your fine motor skill? And I'm happy to finally be able to talk to people with similar situations.
@ Michael Reed
What do you mean paralysis? Complete paralysis or a disability? I have cerebellar ataxia.
I am 21 living in San Francisco where I study illustration at CCA. Anyway, December of 2012 I had a brain bleed and found out that I've been walking around for 17 years with a massive AVM on the right side of my brain. I've had a cerebral aneurysm on my right side at age 4. Leaving me with partial paralysis. I am no longer paralyzed but I do have weakness on my left side and left hand no longer functions. Anyway, I'm still pondering treatment. Its a really tough choice for me to make. The only options I have are to get multiple radiation treatments(with the chances of making things worse) or just leave it like it has been all these years. Focusing on school and giving my all to illustration and dealing with being in love with someone that you cant be with and other life things has been extremely tough. I'm not sure what to do anymore. I feel really lonely in a way that I can't explain.
Please let me know if you have any kind words of wisdom or anything at all really! ^.^
Thank you kindly, Jaana
Hello Everyone thank you all for the welcome! I was just curious if anyone is partially paralyzed and what progress has been made. Also curious as to if anyone has found anyone that has found anything about someone being partially paralyzed from an AVM surgery and made a full recovery. Thanks in advance!
You already did! Welcome.
I am 22 and living with a cerebellar AVM and a pontomesencephalic cavernous angioma. how do i join the group?:)
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Posted by Oleblue on January 22, 2014 at 12:18pm
My name is Barbara and I've worked in the insurance industry and hospital business office for over 25 yrs. I am now retired and the wife of oleblue (Dave) who is a CCM survivor. We have shared many stories, but this one really should be more in…
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