occipital nerve pain after acoustic neuroma surgery

[rose525]

august 2000, i had a small acoustic neuroma removed, 1 month after surgery i started having pain along the occipital nerve and experienced many other draw backs, temporary facial paralysis, spinal fluid build up,increasing tinnitus and hearing loss. presently, since 6/01 have had increasing pain along the left side of my body - referred pain.  i took steroids for 6 months following srgery, neurotin, cortisone shot in the head, ultram - tried acupunture, massage therapy -all unsuccessful.  i have  not been on meds since.  i got 2nd and 3rd opinions and all lead to a second surgery to place a mesh covering over the hole left by the 1st surgery. yuk. i live in chronic pain along the occipital nerve that goes down the left side of my body. heat, cold, every movement seem to worsen the pain. i still go to work on a daily basis but am so exhausted, i can not get a good night sleep, i have no more comfort zone for my head. surgery scares me, meds do  not work and have multiple side effects, i feel like this pain will never go away. it was suppose to 1 month after my original surgery, now i am scheduled for 10/11/01 and wonder if a second surgery is the answer, alls i know is i can not function too much longer without proper sleep and chronic pain. no sleep meds work on me, i seem to get the opposite affect or they put me to sleep and do not touch the pain  help!!!!!!!

[CCF-Neuro-M.D.-JT]

I'm sorry to hear about all of your symptoms. Unfortunately, it seems from what you've written you are experiencing post-op complications that are related but not limited to a spinal fluid leak which occurs in 5-10% patients undergoing this surgery. Hearing loss and facial nerve dysfunction post-op depend on the size of the tumor and the surgical approach, but are also known complications of the surgery. As I (and perhaps you, too) do not know the actual technical details of your operation, you should discuss this with your surgeon. You probably do need another surgery if you really have a spinal fluid leak. Although it probably won't bring back your hearing considerably, it may help relieve the pain. I can understand your concern about undergoing a second operation, but this one will be reparative (if it's a spinal leak) and hopefully you'll feel better afterwards.

If you are uncomfortable with the prior surgeon who worked on you, consider a second opinion or going to a major medical center near you. Best of luck to you.