I had my last shunt revision 11 years ago and have had no problems until March of last year when I have experienced chronic throbbing pain on and off on the tube and around it from the incision in my neck down to my chest. I went to see my neurosurgeon and he said everything is fine so he sent me home with tylenol with codeine 3 to help for the pain but nothing seems to make it go away I went to see a neurologist for the pain and he knew nothing about shunts but had prescribed me topomax which I took one every night 25 milligrams which lasted for a month but did not help the pain in my neck but helped with the headaches so then he was going to prescribe me nerve damage pills and i refused so i am wondering if anyone else suffers the same pain and any advice on getting rid of it. It comes and goes at random times.

Hi there,
I am 25 and just recently had my 10th-14th VP shunt revisions in the last 2 months. The last time was a month ago and they ended up pulling out the entire shunt and putting in an External Ventricular Drain for a week before putting in a brand new shunt on the other side of my brain/body. When they pulled the old shunt out, the tubing was so old (almost 20 yrs) and gross that it broke, and they had to make a small incision in my neck/chest to get the rest out. My point is, that all of my problems from the 10th-14th revisions, may have been caused by this crappy tubing because it was so old and decintegrated that it may not have been completely effective at draining the CSF. Unfortunately, they may not really have any way of knowing that, but maybe if you suggest that to them. Since most revisions require just a replacement of the proximal catheter (the piece at the very top that goes from the valve to the ventricle), the tubing can stay put for many revisions and many years. I try to remember that shunts are manmade and not something naturally occurring in our bodies. Therefore they will have problems and break down and need to be replaced. Most importantly, if you are uncomfortable (which YOU decide how much discomfort you can put up with, NOT a nurse or doctor) keeping pushing and advocating for yourself. Maybe try a different neurosurgeon! Don't give up until YOU are satisfied with your quality of life! Good luck and let us know how it goes.
Sincerely,
Anna

Thanks for responding I may have not made myself perfectly clear of why I had the last revision and I should have so I apologize. The last revision was not due to the proximal catheter but the distal catheter since I outgrew it. It was the distal end alone that got replaced not the entire shunt since at the time there was no need to completely replace it. I never really noticed it as much as I did the past few years since it kind of sticks out more below the skin like you can see under the skin where it leads to in the neck the most and ive had people ask me in the past if I had a huge bug bite and I said no its something else and did not bother saying what it is since it is none of their business but im wondering if it is scar tissue or the fact that it sits on top of the bone that is causing it. Like it shifted from where it was. The doctors never mentioned any of those things but it was something my mom brought up but im just hoping that there is nothing really bad going on and i try to just brush the pain off like its nothing.

Thanks for posting this and encouraging to advocate for yourself. I'm such a laid back person (some would say a pushover) and if they tell me no it's working I go with it, rather than fighting for some relief. God Bless you!

Thank you guys for the encouragement. I just practically gave up on it because im really spending money I dont have just to try and fix some pain. I do trust my neurosurgeon and if he says it"s fine then its fine.

Neck pain is my grandma's BIGGEST symptom!

really? I guess it is true that people are different. I don't suffer from nausea or vomiting or fever but I do wake up with headaches almost every morning and after ive been up for a while they do go away. The part of the shunt in my neck and chest hurt to the point where it is just annoying. My friend even said its sticking out more under the skin so it is more noticible. I don't know what to make of that but what I do know is that I notice it more now then I did years ago.