never ending craniectomy pain

[piper19119]

Hello, I had a craniectomy in Jan. 24 2007 to remove an eosinophilic granuloma from the right front temporal region.
The recovery has not gone as planned. I have debilitating head pain two inches back of the surgery site that feels much like the pain of an abcessed tooth.I have tried Indocin, neurontin, topomax, lyrica. Nothing helps. At first it was constant now I have some days of relief when it is down to a dull roar. Just when I think I am finally getting better I am swallowed by the pain again and life stops for days at a time. It is more a pain in the head than a "headache" as the rest of my head is fine except for a two inch area.No external stimuli effect it except high heat and humidity.From my research I thought it was closest in definition to a"chronic post-craniotomy headache"and one neurologist I went to see agreed with me and told me the nerves may have stitched together wrong and it could take as long as three years to calm down. I don't know if this is the right diagnosis or not but I don't know where to go or who to see to find out. I have seen the two neurologists and they want to help but seem to be guessing a lot.The last thing one did was inject me with Botox. That helped for a while but it wears off. I have two friends who had skull surgery and they are fine. I am twenty months out and still suffering. Can you offer any insight or suggestions? Thank you

[westie26]

Have you found any answers on your pain? My husband had a left temporal lobe craniotomy March 2012. He too has constant head pain. He describes it as a constant brain freeze with stabbing incapacitating episodes throughout the day. We have been to MUSC, Mayo, and many local doctors (ie: neurologists, neuro surgeons, oral/facial specialists, and pain management ), with NO relief. He also has swelling at the incision site that happens as the pain increases. No one has been able to explain the swelling or the pain. He has tried narcotics, lyrica, neurotin, and several anti seizure meds. He gets a little relief from the narcotics, but the drs don't want him on them long term. We are scheduled to try acupuncture and looking into Botox. Please let me know if you found an answer to your pain. Thanks so much!!

[piper19119]

Thanks for responding.
I don't think they would be able to find which nerves are the trouble ones.If it is what is classified as a "chronic post craniotomy headache", they are not sure what causes it, the nerves healing incorrectly,muscle attaching incorrectly to the dura,etc.

I wrote to a clinic that pioneered a new scan called Neurography that shows damaged nerves asking if they could help me but they did not respond to me. I think they use it more for back pain although he said in an interview that it does show cranial nerves.

I have even wondered if I am allergic to the material they used to form my skull back to shape.

If another surgery would stop this pain I would do it to get my life back!

I would love to hear from anyone else who hasn't bounced back from a craniotomy or craniectomy. I also copied and pasted my question to the Doctor forum so maybe they might have an idea.

Again, thanks for responding. Just talking about it helps break the isolation.

[ohmiss]

I guess the option of re-stitching the possible incorrect stitching of the nerves is out of the question? Can they @ least do some sort of scan to determine if that is the problem? Three years is a LONG time to wait to see if this situation 'calms down,' Perhaps a second opinion/scan may answer some of your concerns? Hope you get relief soon!