Quote:
Originally Posted by cr0604
Hi there. I posted the other day about my 8-month old receiving a shunt. This was his 5th surgery, the first 4 were embolizations for an AV malformation. This is all new to me and I just need someone to talk to or to be able to ask questions. It is very encouraging to read the posts from some of y'all who have had shunts for most of your life. ...I just feel like I really can't find information, everytime I read up on shunts...it's just the technical aspects of it. I know about shunt failures and shunt revisions, etc. ...but I guess I'm just curious, is there anything my son won't be able to do due to his shunt? What should we be careful of? Will he be able to lead a normal life? I want to be able to have these answers for him and for me. I'm sorry if i'm rambling....I guess I'm just looking for some guidance.
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I was born with an arachnoid cyst on my brain, they didn't find it until I was nine. I'm 29 now and I've had 99 shunt revisions since they first placed it. Despite how that my sound, I've been blessed being able to live a full life. I've worked full time since I was 13, played sports, I didn't even have trouble skydiving despite the Dr. telling me otherwise. Limitations vary from person to person, but I've known kids who have had just a few shunts placed, and they've lasted them their whole life. And they were able to live without the daily pain and discomfort.
They have made dramatic improvements on shunts in the last decade, which has given such better chances at a full life to kids/people. If your son has a medos valve/ programmable valve you have to be careful of magnets, because that's how the pressure changed on certain shunts without surgery.
FYI: There is a support group which is called S.T.A.R.S. that raises money for shunt research. It was started years ago in Detroit, they have event's and what not but more importantly other mothers & fathers who know exactly what your going thru.
I hope everything works out for you & I wish you and your son the best.
-Jesse