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Chronic pain after craniotomy

Posted by kkk19 @kkk19, Dec 12, 2024

I had a craniotomy for an optic nerve meningioma. The surgery was a success and I got a lot of my vision loss back. The issue is that I have had chronic scalp pain since the surgery. Apparently this is a rare occurrence and no one can tell me why it is occurring nor provide a good game plan for addressing the pain. I have tried accupuncture. I have been to an Integrative health center and a pain clinic. No one knows what to do. I am taking Lyrica twice a day which takes the edge off, but doesn't fully resolve the issue. I am wondering if anyone else has experienced scal pain after a craniotomy and if they have found a successful treatment.

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glowy | @glowy | Jan 9 12:00pm

I had a craniotomy on Oct 9, 2025 for a benign tumor on the bottom of my skull.
3-4 weeks later I started having itching not on the incision, but around my whole head especially the back of my head. I also cannot remember certain words of things when I carry a conversation. Is this normal?

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Maryann | @mkoch | Jan 10 1:50pm

After my craniotomy two years ago I had the same issue with not being able to remember certain words when having a conversation. I addressed the issue with my neurosurgeon during my 1 month post-op check-up. He said that was normal, most likely from the anesthesia. It did last about 3 months. Are you on any medication that could possibly causing this? Interestingly enough, about a year ago I started having the same problem but not to the degree I had it before. Then my sleep doctor told me he would no longer prescribe ambien because it was shown to cause memory loss. Since I quit taking it things have improved. Check in with your neurosurgeon. You're only 3 months out from surgery and it is his job to address all your concerns, major or minor.

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mimispree | @mimispree | Jan 17 2:26pm

I have always had pain at my craniotomy site. I just assumed that was to be expected. It's always been sensitive to the slightest touch or pressure. I had bad insomnia for almost a year because whenever I rolled over and the pillow touched the site, it hurt and woke me up, and the worry machine got going.

Fortunately, it was suggested that I try gummies. I take a quarter to a half before sleeping and it's made all the difference in the world. Plus, if I can get a good sleep, I can handle the pain during the day.

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elisabeth007 | @elisabeth007 | Jan 18 11:39am

pain is purportedly very rate post crainotomy. When i had horrendous pain (and very limited vision in my left eye) i had an undiagnosed antibiotic resistant staph infection. It lasted for months and was "marginalized" resulting in multiple re-hospitalizations, inadequate testing, disinterest/annoyance of not accepting NS (in absentee) determination of "in good condition"!

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canjdubs | @canjdubs | 1 day ago
In reply to @pumpkin77 "Hello - I am so sorry to hear you are experiencing these effects from your procedure...." + (show)
Profile picture for pumpkin77 @pumpkin77

Hello - I am so sorry to hear you are experiencing these effects from your procedure. I too have baffled doctors with my post craniotomy issues. I had a vestibular neuroma, or a small tumor on my vestibular nerve. I had a middle cranial fossa to remove the tumor and cut the balance nerve. The day after the surgery I developed a CSF leak that turned into another ten days in the hospital on my back with very little movement. From the beginning I had pressure in my head I could only describe as feeling like I was shot in the side of the head where I had the surgery. I experienced a lot of strange zinging, tingly feelings as well as dizziness, nausea and vision issues. These are expected but only for 8 weeks. It has now been over a year and I am still having all the symptoms. I had a very well respected and successful surgeon who continues to try to find an answer. I am on a steady dose of Gabapentin, emgality for migraines, cymbolta for depression and pain and maloxicam. I have had two injections, one in the trigeminal nerve and one in the occipital nerve. Nothing helps. Yes, some of the edge is taken off but my day rarely starts before 11am and is over by 5pm. I am constantly tired and have symptoms every minute I am awake. I lost my job as a VP at a well-known non-profit and have to fight for disability every month. I am at my end and am looking for any type of help. Next up for me is botox and visits with three different neurologists but I am not hopeful. If anyone finds anything that helps, please share. Thank you.

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@pumpkin77, I stumbled across your post and we have very similar stories. I had a craniotomy on July 31, 2025 followed by a CSF leak (10 days bed bound). Ever since I have had chronic pain at the site of the bone flap. I am an attorney and I have been unable to return to work. My neurosurgeon hasn’t given me any answers. I’ve tried lidocaine injections, steroid injections, Botox and now I’m on a pain patch. This surgery was supposed to save my life not ruin it. Have you found any answers? I’ve almost lost hope.

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