I had my surgery February 6th, C1 laminectomy and they did open the dura and did duraplasty using my own tissue. Everything was fine, they said they have never seen anyone do as well as I have after surgery, and I don't really have any complaints EXCEPT....
This nerve pain/damage, and I don't know if anyone else has experienced this, but I thought it was surgical pain, and I guess its not and it's only getting worse, at my two week apt they said oh it will get better on it's own and pain meds won't help that kind of pain, here is some sleeping pills so you can sleep at night (EXCRUCIATING to put my head on a pillow, so the sleeping pills is to help knock me out through the pain) and good luck with it. Well it is two week later, now 4 weeks post op and it is even worse, it feels like shallow cuts all over my scalp dipped in salt and lit on fire!!!! and the muscles FEEL like on my right side they are still sore, like they havn't totally healed, where as on my left they feel just fine, which they say means is nerve damage not that my muscles are not healed. So I call my neurologist and they say they can't help me bc it is surgical pain so I have to talk to my surgeon, and I talk to my behavior health med person so I can get meds for the anxiety this pain is causing me and get back on my regular sleeping meds I had been on in the past, no dice, Oh wait, I can get a benzo prescription but they keep saying no to the sleeping pills, I now have a call into my regular dr, I am so pissed, I am about to go postal and have a literal mental crisis caused by the lack of sleep, I am afraid to go to sleep, and if I try I cant from the pain, and no one even wants to help me get relief, and no answers about if this is permanent or not, they say there is a possibility it could or maybe not.
Of course they said there are risks with the surgery, they said it could not work etc and of course it could be dangerous but no one talked about risk of this, this was supposed to help with chiari not cause another problem I have to live with!!!! I am about to cry right now... what can I do, who should I talk to?
I had some strange nerve sensations post-op (nothing as severe as you describe however) and it did pass in time. It was kind of an off and on thing where at times my head was so sensitive I couldn't lie back on it and other times it was fine. I'm not about a year and 4 months post-op and I barely notice it. Hopefully it's just the nerves healing.
I have a similar problem to yours (started after my 2nd decompression) - my neurologist thinks its occipital neuralgia. She gave me a local anesthetic cream to spread on the back of my head, because, like you pills did not help me. It took 2-4 points off of my pain on the pain scale. I also just had an occipital block done on Monday. I'll have to wait another week to see just how effective it will be.
There are treatments for nerve pain! Don't take no for an answer! A NL is usually the person who will diagnose/deal with ON in the long run, so I would try them again or get a second opinion. NLs can be a pain in the butt - find one who will actually listen to you!
I did talk with my surgeon, his answer was "good luck" it should go away with time, and basically not anything he wanted to do about it, sorry it took me a bit to get back, family and all ya know. FINALLY, my regular dr got back to me and prescribed amitryptaline and after the first day I was able to sleep, and the left side of my head the nerve pain was gone and the stiffness and soreness I thought I still had in my neck was gone, but after taking it every night, I have noticed very tiny not much but tiny improvements on the right side, better than nothing. One of the important things is sleep, I have had severe insomnia in the past and when I don't get sleep it leads to severe mental health issues for me and have wound up in the psych ward on more than one occasion all because of lack of sleep and my husband was noticing the warning signs off the bat, and my regular doctor knows this as well, which is why I think he was eager to help. Thank you for the replies, again it is not all better but at least I am getting some sleep and there has been some improvement, and so grateful to my regular dr who listens and actually cares!