Just wondering if anyone has ever experienced or heard of Alien Hand Syndrome following an AVM bleed? I was diagnosed as having a mild case but after looking for information about it, I am not too sure. I have a feeling of “disconnect” from my brain to my left hand, with some pain. Sometimes I forget I am holding something and just drop it or if my eyes are closed I can’t identify what I am holding in my hand. When I researched it there was alot of info about involuntary grasping and hand movements, sometimes as severe as slapping or punching yourself (which thankfully I don’t do!). It seems it is common with injuries to the corpus collosum which is where my AVM was located. Wondeirng if anyone has this or has heard of it before?
i have that problem too. i sometimes even “lose” my hand or i can’t identify if i have my hand in a fist or open. i also catch my arm on doors or forget it’s over the stove. i hope i can get better using it because my daughter wants me to babysit for her.
Hi Judy- I hope you can get some relief with your arm. I have been complaining about this since I had a bleed 6 years ago and my neurologist said it was probably carpal tunnel syndrome which didn’t seem to fit the symtoms I was having. I have found a new neurologist and went to a neurophsycologist who said it is a direct result of an injury to the corpus collosum (where my AVM was). Because so much time has passed there is probably little they can do for it and after time I have learned to compensate for the “disconnect” my arm has from my brain. See if you can get into some type of rehab or physical therapy to see if it helps. I wish you luck and it is nice to hear that I am not the only one that suffers from this very strange thing!
I had something like that with my first stroke but they didn’t call it that. As long as I keep my eyes on my hand it did what I told it to do but if I looked away for just a second it would drop the plate or pour the glass out. As far as the hitting my self I had that also for some time lol now it sound funny to me I had to put my hand under my leg to keep it from hitting me and when I whent to the rest room oops thats another story lol All most all of it has cleared up its amazing how your brain can fix things that was 10 yrs ago Its amazing how you forget things I guess we are just busy with the new stuff Hope this helps Gordon
I haven’t been diagnosed with anything like that but I do have weird sensations that my right arm is not where I put it and sometimes it will just show up in front of my face and I don’t know how it got there and trying to get out of a seat belt from the passenger side is enough to make you want to now wear a seat belt. My arm pulls and stretches it’s self as well as my right leg. No one has told me why any of this happens. It’s almost as if my arm is completely detached from my body and has it’s own mind.
MY HAND IS SOMETHING TO LAUGH ABOUT NOW. MY KIDS LIKE TO CATCH ME SCREWING UP WITH THE HAND (THEY ARE ADULT). I’M GETTING USED TO IT ALTHOUGH I KEEP PULLING CLOTHING OFF THE RACK WITHOUT KNOWING, EMBARRASSING SOMETIME. I PET MY DOG LONG AFTER HE LEAVES, I GET EXERCISE FROM THAT, BUT I WISH HE’D LET ME KNOW. LITTLE THINGS BUT IT’S NICE TO HAVE SOME LAUGHS…BETTER THAN TEARS. (I’M NOT YELLING, I CAN ONLY USE ONE HAND TO TYPE AND I’M LAZY:)) MY FINGERS KEEP MOVING AND LIKE YOU SAY IT MUST GET TIRED OF ME BECAUSE IT WILL STRECH OR RESETTLE ITSELF. AT LEAST I IF YELL AT IT ENOUGH I CAN GET IT TO WORK IF I KEEP AN EYE ON IT. THE DOCTOR AT HENRY FORD DID TELL ME IT WAS AN ALIEN HAND SYNDROME, LEAST WE’RE NOT CRAZY TOO. YESTERDAY MY HAND TRIED TO “HELP” MY HUSBAND LIFT SOME HEAVY BAGS, MUST HAVE LOOKED FUNNY CAUSE WE HAD AN AUDIENCE:)
Kimberly Nolan said:
I haven’t been diagnosed with anything like that but I do have weird sensations that my right arm is not where I put it and sometimes it will just show up in front of my face and I don’t know how it got there and trying to get out of a seat belt from the passenger side is enough to make you want to now wear a seat belt. My arm pulls and stretches it’s self as well as my right leg. No one has told me why any of this happens. It’s almost as if my arm is completely detached from my body and has it’s own mind.
MEEEEEEEEEEEEEEEEEEEEEE!!! I am sooo glad you mention this. I have tgat same problem. everything is hypersensitive and I hate people even touching my left side. My therapists told me to always look at my left hand and make that connection with my brain. I just try to do everything with my right hand but its difficult feeling like your whole left side is gone.
I am happy to see this post. Yesterday, I was at a water park and suddenly had no feeling in my hands. I got really scared…thought I might be having a stroke, but it went away after about an hour, and I had no other symptoms. Is that what you guys have? Is it serious? Should I be worried?
Hi guys, I am a journalist in the UK and am really interested in finding out more about this very peculiar condition! Would any of you be willing to talk to me about your experiences? If so, please contact me at ■■■■■■■■■■■■■■■■■■■■■■■■■■
Thanks very much - best wishes to all,
Heather
I had the Alien hand (left hand r. temporal lobe AVM) before and after I had my first and only seizure. It only lasted for about 2 weeks and it drove my nuts I would drop things and feel like I had something there and would look down to see nothing. I am glad I never hit anyone too!