daughter with shunt (due to cyst in brain) anyone been though it?

Jenn - posted on 01/30/2010

My son has an arachnoid cyst on the left posterior fossa that is 5cm by 4cm. He is now 17 years old. It was discovered when he was 8 only because he had a seizure. The neurosurgeon did not shunt the cyst, I did not want that because of the risk of infection from the tube and the side effects that would have long term issues. Instead, they fenestrated the cyst (cut a window in the sac) which allowed the fluid to flow in and out of the cyst. Since he had this cyst since birth it has caused severe damage to specific areas of his brain. He endures severe learning disabilities and now mental health illness. I strongly encourage you and others to get a second opinion. Your kids are young enough to be able to do something about the condition, unfortunately for my son, it is too late.

Christy - posted on 01/29/2010

My daughter also has a shunt, since 2 days old and she is now almost 4 yrs. she has undergone multiple shunt revisions in the first 1 1/2 yrs due to malfunctions and infection. the best advise i can give you is if your not sure get it checked out! know the signs of malfunction and infection. (ie lethargic, vomits, headaches, and more) one of her revisions actually had to be redone bc the Dr placed the shunt right in a cyst that we didn't know she had, so they went back in and moved the shunt and broke up the cyst a little. I agree with Hope to keep track of what is going on so when you go to the dr you can tell them how often it is happening. My daughter hasn't had to have any revisions for the last almost 2 yrs (knock on wood). Good luck to you and your daughter and I hope you get to the bottom of what is going on with her! God Bless, Christy

Hope - posted on 01/11/2010

My daughter has had a shunt since birth for fluid on the brain (hydrocephalus). She was born with spina bifida (a hole in her spinal chord). She also needed surgery at 5mth to relieve pressure off of her brain from "chiari malformation". I did research on the official spina bifida website and realized that she had this "chairi" even before the doctor said anything. I know that her shunt has helped her and she's a smart little girl at 3yrs old.

My advice would be to take notes as to when things happen. Keep a running chart, if you can. I learned very quickly that "I am boss" when it comes to hospital stays. A wise nurse told me that! You are your daughter's best advocate . . . while retaining all grace and kindness. Be sure that you are seeing a pediatric neurosurgeon, too. They are detailed and very keen on those details you are sharing.

Meg - posted on 01/10/2010

Hi, I too have a daughter that has 2 shunts. I know that they are hard to figure out. Even more so if your child is not talking yet.. and can not tell you how she feels. We have also had issues but we push untill we find an answer or find someone to get the right test. Only you know your daughter (best of anyone) keep looking for the right doc. Let me know if you want to talk more about shunts my daughter has had one for since she was @2 months old and she is now 5.