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Chronic pain after craniotomy

Brain Tumor | Last Active: 2 days ago | Replies (24)

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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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Replies to "Hello - I am so sorry to hear you are experiencing these effects from your procedure...."

@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.