Thread: neck pain
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Old 12-11-2010, 10:10 PM
annakkro annakkro is offline
Junior Member
 
Join Date: Dec 2010
Posts: 34
10 yr Member
annakkro annakkro is offline
Junior Member
 
Join Date: Dec 2010
Posts: 34
10 yr Member
Default feel your pain

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
Quote:
Originally Posted by kl2568 View Post
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.
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"Thanks for this!" says:
kl2568 (12-26-2010)