I am brand new to this site. My 9 year old daughter just had surgery to remove the AVM in her brain. Following her initial bleed on January 21, that sent her to the hospital she experienced paralysis and numbness on the left side of her body. During the period between the bleed and the surgery she regained all sensation and movement on her left side except for her foot. Her surgery was successful, the doctor indicated that all of the AVM was removed. She has however in the days following the surgery had three occasions where she has had temporary numbness, (15-30 minutes) but no loss of movement in the same areas where she previously had experienced numbness and paralysis immediately after her bleed. Some have involved her entire left side, while another has only involved her left hand. She had an additional MRI after the first event, and the doctor found no physical evidence as to why they may have occured. Has anyone else had this happen to themselves or a loved one?
Welcome Herb!
Congrats on your daughter's AVM surgery to remove the AVM. It's hard to guess what might be causing the numbness or will it every go away. The best analogy I can come up with is your daughter's brain had TWO train wrecks happen inside it. First the bleed, then the surgery. A lot of sophisticated things have to reconnect and function properly for it to work right.
My wife had surgery to remove an aneurysm (in conjunction with AVM surgeries). The DR said going in he was going to be in the neighborhood of the optic nerve. He wouldn't touch it, or even be that close to it, but one potential result could be "temporary" double vision as the optic nerve doesn't like to be disturbed.
When Chari first woke up in ICU, she looked at me with both eyes focused on me. Then she blinked. When her eyes opened next, one was looking 45 degrees to the side! Double vision, with one image stacked on top of the other one.
We asked how "temporary" it was, and got a mumbled answer, but maybe 30 days or more. It lasted about 40. The high tech solution to impossible double vision: Wear an eye patch and alternate eyes each day, so neither atrophy.
As quickly as it showed up, one morning (30+ days later), she woke up and both eyes functioned correctly.
It sounds like most or all things are working for your daughter, so I think that is a good sign. For your daughter, I would suggest equal parts yoga, relaxation, mild exercise, meditation, stretching, good diet, and ice cream. You can also tell her Dr Ron prescribes at least 4 hours of hugs from Dad every day from now until she's 40! (no, I'm not a DR, but don't tell her that. I have a lovely daughter and I recall about 9, the dad hugs slow way down until they hit mid 20's.).
Hope this helps!
Ron, KS
Hi Herb :)
I first found out I had a bleeding brainstem cavernous malformation when i notice my left side being numb. I didnt have any loss movement. On February 17, I had my third bleed, a mini brainstem stroke, and was numb and temporarily paralysed. I regained movements about 6 hours later. The numbness didnt go away. On march 1, i had a craniotomy to remove the cavernoma and the risk of paralysis was very high. I woke up completely numb from head to toe, even my face. I had no strength or movement for about 2-3 hours, than i could move my arms :) I was in the ICU for 3 days than was transferred to a inpatient neurological rehab center where i relearn to talk, walk. Movements came back slowly but once it came back, it stayed, even if i was numb. I started by being able to wiggle my toes, to lift my legs etc. I couldnt walk but i could move. I was so numb my feet couldnt feel the floor when i tried to walk. I was told that the numbness goes away with time, but maybe not all completely. I was very numb, as of my skin could of been ripped off with no pain numb, for about 5 days. Its been 8 weeks and the numbness is practically all gone now. Sorry i was detailed, but the numbness can totally go away!! My extremities do get numb from time to time and i think its a blood flow thing, a lot more sensitive than normal. My hand will be tingly than numb after holding my phone up for only 2 mins. but it goes away.
Ok, time for ice cream :) Seriously, when i was numb head to toe, i ate a lot of sorbet and icecream, because i could feel the cold in my mouth :) The numbness i have now i dont notice much, maybe because i experienced complete numbness, but my thoughts are that with time, all your daughter numbness will go away
forgot to say that the brain is amazing and can take up to a year before it heals. If her numbness was to before permanent, it would of been numb all this time. It sound like her brain is just healing. What did her doctor say?