Coping With Hydrocephalus

My name is Linda. I am 41 and I have had hydrocephalus for 31 years. I graduated from a top private college with honors, and have had very successful carreers. Recently my neurosurgeon who I had for a number of years moved across the country to California. He understood my case really well and really thought through what he needed to do to continue to make me functional.

Since May, 2008 I have been having a shunt failure. It has only been getting worse. It is difficult to find a neurosurgeon to take my case. I am shocked that surgeons can just turn you away because they are afraid of the liability since my body has been through so much etc…

Each month I have gotten so much worse. I am at the point that I can be up for an half hour a day at a time without vomitting or becoming too dizzy. I am no longer able to drive. I stopped working in May and then my company let me go. I have a ten year old son and I am married and they need me back to do the things I have always done for our family. I have lost 35 pounds in the past 5 months and have become weak. The new doctors I meet tell me they want to get to know me before they would ever treat me.

I am not sure how much longer my body is going to be able to hang on at this point. I am shocked that doctors are able to send me away and sleep at night knowing I am in this condition. I have alway been a fighter and that is why I am still here today and I have hope there will be a solution to this current problem I am experiencing.