extreme undiagnosed pain years after brain surgery- chest, back, head.

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My husband is a brain cancer survivor. They took out a golf ball 4 years ago. No cancer has come back, and that is spectacular, BUT..... We have gone to the ER at least a dozen times since then for intense pain. At least a half dozen hospital stays with no known cause for said pain.

My husband is a volunteer fireman, a macho man, not a whiny baby. For the brain surgery they pushed nerves out of the way and cut some. The right side of his face was paralyzed, not stroke, just angry nerves. Over the years he has regained some movement, he can close his eyes and his mouth. It took months to get from wheelchair to walker, more months walker to cane, and more months cane to without cane.

During these 4 years he has had intense headaches, but we figured brain cancer and brain surgery- duh! Hospitalized for intense chest pain, but we figured he has had a heart attack- duh! So, today, lower left back pain.... Hospital, tests. There is nothing in that area except the kidney and muscles. They did urine, blood and ct scan. No urinary tract/kidney infection. No kidney stones. No scarring of kidney, no nothing. Great blood results, great kidney function, clean urine, no bacterial infections.

With all eh chest pain visits, clear EKG, no arrhythmia, no blockage stent still in place, no ulcers (can present as chest pain), endoscopy shows beautiful clean insides. Headaches: clean brain scans, no sinus issues, no blockage, no infection.

So, why pain? We were getting so frustrated. Until today!!!!! I had an epiphany! Intense pain in various regions with no known cause. Upset and cut nerves. "Ghost" pain!!!! Nerves shooting off and causing pain for no reason. There was a cause, originally. Now there is no sign of that cause, but the pain is real.

I have been researching for hours. I have found a glimmer here, and a mention there. Most people are at the "what is making me hurt" stage, but most also report some sort of head/brain trauma. They are mostly at the "I am not crazy, I hurt, why won't the doctor believe me" area.

I am throwing this out there to see if we can find a correlation between undiagnosed (because nothing IS there) severe pain in odd parts of you after brain trauma/surgery. Anybody else?

Thanks!!! We can make a difference, we can bring this to the attention of the medical community. We are not crazy, we are in pain.

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  • Posted

    I have absolutely no clue if this has anything to do with it at all, but i have something called CRPS. I had major trauma to a part of my body and now i have MAJOR nerve pain, in the affected area (even though its "healed"), and sever nerve pain in areas i never hurt. Read about it, I know you're on to something. Hope this helps.

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    • Posted

      Thank you!!! You are too correct. I now have a direction to follow and something to bring to the doctor's attention. His is not limb associated, but the pain, heat and swelling are present where the "attack" is. This last, in the rear lower left back was certainly swollen and warm to the touch. You rock!

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  • Posted

    I'm so glad! It at least might be somewhere to start. CRPS Type 2 could be more like what your husband experiences. The brain is such a complex machine, I guess its not suprising it holds onto its own trauma. I really hope you find the answers. Having extreme pain, with no answer is one of the hardest things in the world. I was so lucky to be diagnosed by 4 different Dr.'s with CRPS, because its a hard diagnosis to come by. And it means my physician takes me seriously.

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