Glad to see there are others who have issues that I am having (well not really, I feel for you) and a community that can voice our concerns. My story...
I had a benign brain tumor (Pilocytic Astrocytoma) at the age of 12 on my brain stem, had surgery to remove it and enjoyed 17 great years from that date. I really didn't know how blessed I was until now.
This year at age 29, I went to have an MRI and they noticed that the very small peice of tumor that was left started to grow again. It was approximately 1.5cm or about the size of a lima bean. My NS recommended we put in a VP Shunt and use the Gamma Knife procedure. I would have pretty good odds that the tumor will completely die and not recur and the shunt would help if I developed hydrocephalus. I didn't want to have it done but the thought of tumor free was great, so we had the surgery and I did great. I noticed when I was in the hospital though, the nurse would touch my arm and I would feel a sensation in my right leg or just strange sensations like my tongue going numb. As time went on, I got worse and worse, having problems looking around and adjusting, tons of pressure behind my nose and eyes, balance issues, pains in my side, ect. Well I had the gamma knife procedure done 3 weeks after the shunt, and I have had my shunt adjusted (it's programmable) 2 times since then. I've been miserable, emotional and all I can say is I feel for those of you who have shunts and hydrocephalus. If you know me I am far from the type of person who feels sorry for myself, but this shunt (WHICH WAS A PREVENTATIVE MEASURE) has completely ruined my life. I can't life weights, I can't golf, I can't even walk around the neighborhood without getting cramps or my side hurting to the point I have to stop.
This past week I convinced my NS to adjust the setting to 8 which is off, and that was Monday. I was so happy I got this thing cut off. I went to sleep sore in my stomach due to the CSF and tubing down in there but was happy I wouldn't be draining anymore. I wake up TUESDAY night in the hospital and don't remember anything. Apparently I developed hydro and was throwing up and then just went in a coma like state. They drained CSF out of the shunt and I became concious and I finally remember things around 8pm. They are leaving the setting on 6.
My theory? I think my body became accustomed to the shunt and isn't draining CSF normally itself. This is so frustrating, I just want to be able to live the life of a 70 year old man, and I can't do that right now. I went from 192lbs @ 11% bf to 170 at no telling I've just lost faith it seems like nothing will go my way. I'm sure many of you have felt this way before.
I have a few questions? Does your body ever get used to the CSF? Do many of you have IBS from this? If so what medicine do you take?