Though I was never diagnosed with epilepsy, I had a brain tumor removed from my right temporal lobe two years ago in a procedure that is similar to what some epileptics have the option to undergo.
Since my surgery in June of 2010, I have had consistent, but not completely constant pains and aches in my temporal muscle and have had nerve burning and pain near my incision site. The pains are occasionally sharp and sudden, almost like brain freeze or charlie horse in my scalp, and other times the pain and discomfort lasts for hours and is a constant, incessant burning ache in the entire area of my temporal muscle but centralized in a spot just above my ear where my incision site passes over.
My neurosurgeon just last week removed one of my titanium pins to try and help alleviate the pains, but I sadly have been experience familiar pains in the same areas as before.
My hope is that I'm having these pains currently because of the healing incision of the removal of the pin, but I just don't know anymore.
Did anyone else have long term pains after a temporal lobectomy or other brain surgeries?
In 2000 I had a lobectomy in my left Temporal lobe. Short version of the story, I was in a skiing accident when I was 13 that shattered my skull. Years later we realized I had epilepsy. After years past, lost of different meds and treatment, the doctor realized I was in need of surgery. Approximately 2 years post-op I started having terrible “migraine” like headaches. They had a major impact on my life. I tried new meds, treatment, even acupuncture, but nothing worked. They just continued to last longer and get worse. Now in 2012 I still have them. All day, every day with flare ups as you suggested that feel like a brain freeze. I still work everyday and function as a father but the impact, I believe, is long term. The best conclusion I have gotten was from a Doctor that was a pain specialist and had tried numerous tests. He said “It may just be the result of surgery and you will have to deal with it”. I take Amitriptyline and it helps with depression and anxiety. I know this doesn’t solve it but the reality that the Doctor (and research) gave me help me cope. Let me know if you have any results with any meds or Doctors. Take care!
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