No problem, Cooper. I've had pain that no one could or would solve, and I absolutely hate when that isn't taken seriously. I really and honestly hope that this is not where you end up belonging (who wants to be in the cancer club?) but right now, it seems to be the place you're heard. I don't respond well to certain common medications, and one neurologist, who swore she had a whole list of ideas when I first went to see her after my family doc and my dentist ran out of ideas ... she told me, when I stopped the medication (I took it anyway, knowing it would cause me ill and long-term effects, so I could be seen as a good sport) that "No one ever has that problem, it's not a real side effect, it doesn't exist" and after I proved it was the first side effect on the list, she hemmed and hawed and then admitted she had no other ideas and "You're really a difficult patient, aren't you?" No admission that I was still in a great deal of pain. No admission that there was a real problem. Just that her one answer for everything didn't work, and so I must be the problem.

Yeah, I stopped seeing her and asked for a different referral. Who started with the same med recommendation, which I firmly refused. He didn't have any better ideas either, but at least he was still trying. I gave up altogether and just lived with the pain, till life circumstances (read: more cancer treatment side effects) caused problems whose fixes seemed to also change the pain issues. I think I was right about the problem and its origin, and I've got my bets placed for when it will resurface, LOL, but at least right now I'm okay and I have better things to say if I ever have to return to doctors like that ... more information for my file.

So ... I will listen, because everybody needs somebody to take them seriously. Can't do much more than that for you, but I can at least believe you. Some things are just pain with messed up nerves, and can't BE fixed (in which case, doctors ought to just say so, and it may be what you're dealing with too), but even knowing that much is a good start.

((hugs))


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery