Has anyone ever heard or have been in a place where the AVM has damaged your cerebellum and has loss coordination? My sister is doing beyond well with her progress and therapy but a major change is her loss of coordination. I’m just wondering everyone’s different experience and what can help- if anything.
My AVM is located in the cerebellum, supposedly in an area that affects coordination. But the only thing I notice, is occasional balance issues and diziness. My avm has not bled, so I got gammaknife treatment one year ago.
My son has an AVM in the Cerebellum. He had 4 embolization's when he was 15-16 and he is now nearly 21. He suffered a loss of coordination in his left hand from those embo's. It hasn't changed since the emboss were done. He can still use the hand but his grip is very weak. Best wishes in her recovery.
I lost all coordination at the time of the rupture, but it is slowly returning in its own way, and I simply work with what has returned. It is a new normal, funny at times, but there is progress. My rupture was in March 2013, patience is your friend and things happen in years, not weeks or months. I do yoga with no inverted poses or anything that causes me to change the altitude of my head. And I practice things to help my balance like trying to walk in a straight line. And I dance to the radio anywhere in my house, doing whatever. Coordination is not perfect, but I make sure I have a good laugh at the funny scene I am. I also make sure to drink water twice a day.
Keep hope alive!
Yes, my eqallibrium is off since my AVM. It was located by my brain stem and the dr had to cut my balance nerve and right ear nerve. If your balance is off, use your toes to try to balance it helps.
My daughter had an AVM rupture in her cerebellum. Her balance is greatly challenged but the stronger she gets the better her ability to control her balance. Her trunk is particularly challenging for her. Lately my daughter has been doing swimming therapy. It has really helped her. We live in sunny California so have a pool. We put a 4 in wide floating foam around her waist and with two noodles under her arms she has a lot of independent movement in the pool.
I like the person who said measure success in years. Year to year your sister will make progress. My daughter also likes to sit on the floor and use yoga straps.
Best wishes and luck to you sister. Your support means everything to her.
Hello, my AVM was also in my cerebellum, it rupture in 2012, and my coordination has been off ever since. It has gotten better though, so just give it a little time. I have also noticed that it gets much worse once i’m tired (I get tired very easily though!) My advice for her would be to give it time, and just to learn ways to cope with it. I have been doing research on medications that may help a person cope with these issues, it seems that they affect a person who had their bleed in the cerebellum much more. I am going to talk to my Dr. about starting me on some ADD medications because I have read that these may help. I will let you know if I find anything else out! Sorry I replied so late! Take care. Hannah.