I haven’t been diagnosed with ataxia, but have some of the traits, also due to an astrocytoma. I believe I’ve had this thing in my head since I was a child but it wasn’t diagnosed until I was in my 20’s. I was also involved in an MVA as a kid and 60% of symptoms were labelled as being caused by the accident. 40% was just been put down to me being a shit of a kid. At times that 60:40 was more 40:60. But either way I must admit I was an awful child, if there was trouble there was a VERY high possibility I was involved. I had numerous dr and hospital visits with a ‘Nothing wrong, all in his head’ diagnosis.
So fast forward a decade and a bit and I’m driving down the road and the lights went out. I couldn’t see. I pulled over, called my girlfriend and off to see another dr. Had a scan, dr comes out with 'Ohh look what we found…". I was so angry, all those years of ‘nothing wrong’ and then they found it. I do laugh (sarcastically) to myself, “so spose they were right in a way, it was ‘…all in his head…’”. Over all of those years there were signs but nobody connected all of the dots. And I spose (Now I can say lol) I did live up to that title of being ‘a shit of a kid’ which only reinforced the opinion.
I did have some coordination issues as a child but I seemed to compensate ‘fairly’ well. But post surgery those issues seemed magnified. I eventually compensated a bit more and got away with them too. But with each operation I seemed to get a bit worse and a bit worse. A bit like yourself I’m not sure which surgery made it ‘bad’ but I’ve had 6 surgeries so far and each has knocked me a bit more.
Some people have some fairly bad ataxia symptoms and in comparison mine a minimal (Well, I think they are. My wife thinks they are bad). It’s my balance that’s my biggest issue now. After my last operations in '13 my balance, my gait and my coordination was awful, but it has improved with light exercise and lots of walking.
The headaches, now they haven’t improved and are my BIGGEST issue. I do still have ‘ataxia’ type symptoms which I try to ignore or I’ve again learnt to compensate for, but sometimes I’ll stand go to turn right only to find the floor DOH. I try to laugh it off, blaming the damn floor for moving on me, but it is annoying.
Believe me when I say “You are among friends here. We know 'cos we live it too.”
Merl from the Moderator Support Team