Hi. I am glad to find all of you! The story is long but I feel better putting it all down. So I guess I will jump right in...
My son, now 22 yrs old, was admitted to the hospital in Jan 2012 with horrible pain in his head. It turned out he had a raging infection, which was eating away the brain dura, as well as a huge Cholesteotoma, a benign tumor that eats away at the ear bones. The infection had created some blood clots in his Venous Sinus for good measure. He spent a week in the neuro ICU while the ENT surgeon and the neurosurgeon debated and disagreed about what to do with him. They finally agreed on surgery to remove the Cholesteotoma and clear out the infection. Surgery was successful, they put in a PICC line and sent us home. Everything settled down, yet his pain continued. His surgeon said there was no reason for him to be in so much pain and told him to get off the pain meds and on with his life and he'd feel better. He'd see him in 6 months for a "second look" surgery to be sure the tumor was completely gone because there was so much infection that he couldn't be sure.
About a week after coming home, he started having seizure-like or TIA-like symptoms. No one could tell us what they were or what to do about them. We saw neuro, who ruled out seizures.
All the while he was in profound pain. He would describe it as lightning shocks into his ear and deep into his head. He would have numbness and tingling all down his right side and sharp searing pain in his cheek. He also has the "normal" 24/7 headache. Docs couldn't find a good reason for it and recommended a psychiatrist. Finally I went outside the hospital system and found him a pain management doc. He was, and is, wonderful, though couldn't figure Jess out either. He tried every possible opiate, short and long-acting combinations, Lyrica, nortriptaline, migraine meds, you name it, Jess tried it. But at least, through it all, he never questioned his pain.
Second surgery in July, 2012. Cholesteotoma had regrown to the size it was before. This time he said he was confident he got it all. So we thought maybe his pain was from that. Onward and forward. He healed from the surgery but the pain stayed. He decided that short-acting oxy worked best for him, so he takes 30mgs, 5 times a day. He manages okay with that. He is driving again and trying to cope each day in horrible pain.
So Friday was our regular visit with he pain doc to refill his script. We were talking about the possible causes of his pain. I got home and pulled out all of his old MRI reports, CT reports, doctors notes and started reading trough it all again. Then I started googling. Well the google searches led me to Trigeminal Neuralgia. I COULDN'T BELIEVE MY EYES!! I was reading a synopsis of my son's pain to a T. You could put his picture under the description. I was so happy to finally find a reasonable explanation for all of this hell! Of course it was the weekend, nothing I could do. I will be calling his doc Monday morning and faxing him bunches of info!
I have a few possible explanations for what might be going on, Cholesteotoma sitting on trigeminal nerve? Infection wore sheath of nerve? Nerve nicked during surgeries? Blood clot sitting on nerve? He is having another surgery in a few weeks for the cholesteotoma and his blood clots are still there, though stable, they are in proximity to the trigeminal nerve, from what I can see of diagrams. So any of these seem to be conceivable.
We have been through hell these past months. He has been suicidal, depressed, angry, sad. He dropped out of school, and has absolutely zero quality of life. This experience has eaten away at our family bit by bit.
TODAY, I HAVE HOPE, and that is a wonderful thing! Thanks for listening! Any advise, suggestions about what has helped, or your stories is greatly appreciated. Meanwhile I'll just be reading some more!
Mercedes