I'm back. Brain/ankle probably is over simplified but only thing I can think of right now. It possible to relearn EVERYTHING. Don't let anyone tell you that it can't be done. Best thing that my mom taught me was "Prepare for the worst AND EXPECT THE BEST!" It irritates my husband but for me knowing what I have/need to do if the worst happens gets rid of the devil's advocate sitting on my shoulder whispering in my ear and frees up my head/heart to listen to the angel at my back telling me that everything will be ok.
Luckily, my son only had to have PT to regain strength in his arms and to help him move. He couldn't roll over because his head was too big and heavy. He had to grow into his head. First time he could sit and hold his head up by himself was on his 1st birthday. He had PT until he was about 3 1/2 years old. He's 100% neuroloically intact and seems to have none of the heart,kidney,liver,etc failure problems that almost all of the babies have had with Vein of Galen AVMs.
I will say that the most common side effect seems to be the headaches. I think they're the worst!
I don't even know what to say, except thank you ALL and I am so touched by your stories, I can't even describe it.
My brother is 23, and had his first cranial AVM operated on when he was 21 months old. I was 15 at the time, so kind of remember what that time was like, but my Mum has been re-living this the most. She said that after David's operation, they kept his head open for a few days to relieve swelling, so of course he was unconscious. The doctors warned her and my Dad that he might have lost the power of speech, yet when he came around, he cried out "Mummy, mummy" and pulled his little body up to the bars of the crib, ripping out wires left, right and centre. Alarms were going off and nurses and doctors rushed in, but one nurse told everyone to stop and watch what was happening. Apparently they all stood there in amazement. David couldn't even open his eyes, but he knew Mum was there. And he could talk.
That was our miracle. I'm sure we'll have another. And I'm praying for more for ALL of you amazing people. You all deserve them.
As a mother of two little ones now, I cannot imagine what the parents of children with AVMs are going through. And for all of you, you are not alone, even though it may feel like it sometimes.
thank you all for the information - it is incredibly helpful.