I have just been reading the posts from other people about their BIH problems. I just wanted to say that I myself have not had this problem but my hubbie has and he has spent the best part of this year recovering from his operation and from the other ongoing side effects.
When he was 19 months old he was diagnosed with hydrocephelaus (extra fluid around the brain) and had a shunt fitted way back then. When he was 19 years old he started suffering with strange headaches and fitting while being unconsous. All the doctors and consultants that we saw where set on a diagnosis of migraine with a faint, which was absolutely stupid. For years and years he had to suffer with pain and distress as people did not understand what needed to be done for him.
He had been suffering from migraine and bouts of unconsiousness for about 10years when last year about May 2007 he could not even work anymore as the pain was to great and I was having to go to his work and take him home so my employer was starting to get annoyed with me because she saw his problem as only headaches.
On 21st Decemeber 2007 I had to call an ambulance for him because he was unconcous when they came he was just coming to so they took him to the hospital to be assessed and once there he went uncosous again in the ambulance and then once again in A&E and it was there that he had diazepam (muscle relaxant) after this he was admitted onto a ward.
The next day I noticed he was dribbling when he was drinking, so to cut a very long and emotional story short they thought that he had suffered a stroke so after many cigarets later and much much crying at home all by myself we had him moved to a neurological hospital and it was there after much discussion, lumbar punctures and my hubbie losing his sight that they decided to operate on my beloved.
The op went very well it lasted three hours but his sight did not return in fact it got worse so they gave him three bags of steroids and luckily pixel by pixel it started to return but very slowly and he has been left with a few sight problems i.e. colour blindness with blue/green red/purple.
The only thing he has been left with now is mild right side facial weakness and propreciaption. The facial weakness started off very bad but it is now not even noticable. The propreciaption and facial weakness is not a definate side effect that everyone will have.
Also other than shunts being fitted some people just need diaretics (they make you pee more) and lumbar punctures and that gets rid of the extra fluid, so you have lots of options open to try yet.
I think what I am trying to say is that even with his propreciaption he is enjoying life so much more because the constant pain is gone and now he describes it as a fresh start. So please do not worry that the world is going to end as it will not. It just means that your world will change but it will be pain free and when you weigh up what life was like for us before his diagnosis (and his life saving operation) just having propreciaption is not a bad after effect at all.
Please try to be brave and not so worried
Emma and Dan