JW - Sorry to hear it. You state " they " say the pain is from surgery. Who exactly are "they?" Your surgeon? Your primary? Your neurologist?
I searched for and read all your posts. Nowhere did I find where you had your surgery, or who the surgeon was or why you chose that doctor. I ask this because the causes of post-op headaches after AN removal are many and they may be addressed. My surgeon believes retrosigmoid approaches can cause headaches because they transect the occipital nerves. He uses a simplified retrosigmoid, or minimally invasive method, which makes the incision between the lesser and greater occipital nerves so he transects neither nerve and headaches are not a problem for his patients ( he has performed 600 AN's and 1000 meningioma's many of which are in the CP angle.)
Here is an abstract of a recent paper by Dr Ducic which I found with a quick internet search regarding occipital nerve injury from AN removals. I do not know if this is the source of your problems or not, but it is a start in finding what you can do. If your present physicians have no idea what to do, find other physicians.
Keywords:
acoustic neuroma;
headache;
nerve injury;
occipital neuralgia;
peripheral nerve surgery;
postoperative headache
Objective.— To demonstrate that occipital nerve injury is associated with chronic postoperative headache in patients who have undergone acoustic neuroma excision and to determine whether occipital nerve excision is an effective treatment for these headaches.
Background.— Few previous reports have discussed the role of occipital nerve injury in the pathogenesis of the postoperative headache noted to commonly occur following the retrosigmoid approach to acoustic neuroma resection. No studies have supported a direct etiologic link between the two. The authors report on a series of acoustic neuroma patients with postoperative headache presenting as occipital neuralgia who were found to have occipital nerve injuries and were treated for chronic headache by excision of the injured nerves.
Methods.— Records were reviewed to identify patients who had undergone surgical excision of the greater and lesser occipital nerves for refractory chronic postoperative headache following acoustic neuroma resection. Primary outcomes examined were change in migraine headache index, change in number of pain medications used, continued use of narcotics, patient satisfaction, and change in quality of life. Follow-up was in clinic and via telephone interview.
Results.— Seven patients underwent excision of the greater and lesser occipital nerves. All met diagnostic criteria for occipital neuralgia and failed conservative management. Six of 7 patients experienced pain reduction of greater than 80% on the migraine index. Average pain medication use decreased from 6 to 2 per patient; 3 of 5 patients achieved independence from narcotics. Six patients experienced 80% or greater improvement in quality of life at an average follow-up of 32 months. There was one treatment failure. Occipital nerve neuroma or nerve entrapment was identified during surgery in all cases where treatment was successful but not in the treatment failure.
Conclusion.— In contradistinction to previous reports, we have identified a subset of patients in whom the syndrome of postoperative headache appears directly related to the presence of occipital nerve injuries. In patients with postoperative headache meeting diagnostic criteria for occipital neuralgia, occipital nerve excision appears to provide relief of the headache syndrome and meaningful improvement in quality of life. Further studies are needed to confirm these results and to determine whether occipital nerve injury may present as headache types other than occipital neuralgia. These findings suggest that patients presenting with chronic postoperative headache should be screened for the presence of surgically treatable occipital nerve injuries.
Postoperative Headache Following Acoustic Neuroma Resection: Occipital Nerve Injuries Are Associated With a Treatable Occipital Neuralgia
Ivica Ducic MD, PhD*,
John M. Felder III MD,
Matthew Endara MD
Article first published online: 1 FEB 2012
DOI: 10.1111/j.1526-4610.2011.02068.x
© 2012 American Headache Society
Before giving up, pursue other physicians who do have ideas. Again, I have no idea if occipital nerve injury happened in your case. But maybe presenting your history to another professional might provide some insights into your case as to the cause. Good luck.
