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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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supernorva | @supernorva | Apr 13 4:36pm
In reply to @tbusker "I am 3 ish months out and I started having neck pain right after surgery. Now..." + (show)
@tbusker

I am 3 ish months out and I started having neck pain right after surgery. Now that I am getting feeling back, I have throbbing headaches in the area where the hardware is.

Being on the computer is still hard (get headaches)

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

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stacyh | @stacyh | Apr 14 9:53am

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.

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michael8sf | @michael8sf | Apr 27 6:38pm

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.

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lhunnewell222 | @lhunnewell222 | Apr 29 8:40am
In reply to @supernorva "I had a craniotomy ten years ago when I had micro vascular decompression surgery for trigeminal..." + (show)
@supernorva

I had a craniotomy ten years ago when I had micro vascular decompression surgery for trigeminal neuralgia. I was 28 when I had the surgery, 38 now. I have been dealing with chronic pain on my scalp around the incision and chronic tightness in my neck. I can literally feel my neck muscles constantly being pulled up towards the scar area. NO doctor has been able to give me any answers. I was already taking lyrica for fibromyalgia. I’ve done trigger point injections and monthly massages. I try to massage the area of my scar but sometimes it’s much to painful to even touch. My guess is that they damaged the nerves when they stapled my scalp back together. I have been searching for ten years for someone else who has also experienced this. Sadly I found someone. Sorry you’re also going through post craniotomy hell.

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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?

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supernorva | @supernorva | May 1 10:30pm
In reply to @lhunnewell222 "I had 2 MVDs last year for TN and this 2nd time, I also have pain..." + (show)
@lhunnewell222

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?

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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!

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