Severe headaches after AN Surgery
often do not start right away

Story 1

(Mar'98) My mother had a acoustic neuroma removed in Nov '96. Her problem is unbearable headaches (these didn't start causing severe problems until about 6 months after the operation). She gets them 3 to 4 times nightly and periodically throughout the day. She is in so much pain that she just lies, holding her head and moans. Her quality of life is zero and it is difficult just getting through each day. She is understandably, virtually suicidal.

She has seen or contacted almost every specialist/pain clinic in Ireland (& some in England) since then to no avail. She has been in hospital for repeated MRI scans, x-rays, nerve block injections, every kind of pain killer (including morphine), natural remedies & therapy etc.. but again to no avail (most pain relief gave her severe stomach problems). Nobody seems to have any explanation or suggestion (the original surgeon doesn't seem interested because the operation itself was deemed a success!) as to what to do next. What we do know is that we must do something. My family are at our wits end.

Story 2

I thought I was doing just fine for about two months after the 2nd op. - no facial impairment at all; returned to driving and to work - then the headaches hit me - just after Xmas 95 - and they were bad. It was Easter 96 before I had them under tolerable control and I've tried many combinations of medication since. I've also had a course of hypno-therapy. I've been reasonably well stabilized for the past 12 months or so on 75mg Diclofenac Sodium controlled release twice per day plus a maximum dose of soluble Codeine/Paracetamol every day but I'm in real trouble if I let up on the medication.

Story 3

(Jun'97) I had microsurgery in 8/97 to remove a 2.2 cm vestibular schwannoma that was pressing on my brainstem, via a Translabrynthine approach (mastoid was removed--no bone replaced). Surgery was highly successful... After a fairly fast-track recovery (back singing in a choir at three weeks, back at work in four weeks, driving, swimming, etc. with little problem) I began having chronic headpain started about 7 months after surgery and this has continued for four months. Unless I take something, my wound and neck throb and my eyes and throat ache... I am becoming desperate.

Story 4

I had AN surgery using the suboccipital approach and am experiencing chronic long-term (2 years) headpain. Having seen several pain specialists, a diagnosis of "occipital neuralgia" has been made. I understand that this is kind of a "catch-all" for a number of things that may have happened to the occipital nerve...  I'm confused as to the treatment that I should choose to try to stop this ongoing, intractable pain; I am not sleeping throught the night because of it... The upshot of it all is I'm still having to withstand this daily pain until a solution can be found and am having to do so without a "whit" of a care by the original neurosurgeon in terms of my pain. 

Story 5

(11/98) I was operated on 2/18/98. The surgery went very well and he was very concerned for the first 3 months of recovery. The fourth month I began having severe headpain, nausea, and dizziness. If I moved my head or eyes wrong the dryheaves would start.  The Pain Management doctor said the occipital nerve is causing the pain, and I may possibly have labrynthitis.

Last Edited: Wednesday, October 30, 2002