Chronic pain after craniotomy

Are your doctors treating the headaches or attempting to give you answers?

Go see a Chiropractor preferably a Chiropractic Neurologist if you have one in your area. This will release tension on your head from your neck and shoulders. Another thing to try would be see a craniosacral therapist. They work with releasing tension on the fascia that surrounds your brain and spinal cord. I have had great relief with both of these methods and do not need to take any medication or pain reliever.

I have similar chronic pain after Orbital Tumor excision on left eye in 2001. During last over 20 years, I feel good no pain, suddenly start January, 2025. My bone flap area starts to feel pain on the nerves. I check the previous surgeon note and find he cut the bone could damage nerves system around the eye socket or orbital rim. I am not sure why the recovery from surgery 20 years, there was no pain at all. I am trying to use cold and warm with release pain pad no help. Deep search online with AI, the bottom line is no one can pinpoint how patients have such post surgery pain can be diagnosis and get a good treatment. My previous surgeon was left the city. The other surgeons do not want deal with it. I think the pain will go away until the death.

I had 2 MVDs last year for TN and this 2nd time, I also have pain around the area of entry. I also have strange temple pain and recurrence of v1 pain. I had an MRI last night and meet with my surgeon today- but I am going to get a 2nd opinion at the Mayo in Phoenix as I live in chicago. Have you had any improvement since?

Oh my gosh. Having one mvd was hell I can’t imagine having two! As far as my TN goes, the mvd worked. As far as everything else, there hasn’t been any improvement. The pain around the incision area comes and goes. I do have fibromyalgia and sometimes I wonder if that’s part of the recurring pain. I really do think they damaged the nerves though. And the chronic neck pain and tightness is still very much an issue and all my doctors and masseuse believe it is caused by all the scar tissue on my scalp. It feels like all my muscles are being pulled upwards to the incision area. And no amount of stretching, trigger point injections, or muscle relaxers have decreased that. You’ll have to let us know what the Mayo Clinic says when you go!

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.