I just had the worst experience with a doctor. With having seen more than 25 just for my facial pain (sphenopalatine neuralgia), I’ve seen more than my fair share, so my experience overall has been pretty good. Today I got a taste of the other side.
Basically I walked in for botox injections for migraine, my third round with this neurologist after I had a change of insurance last year. So I’m not a brand new patient, but likewise we don’t have an extremely long history with each other. I brought four or five ideas of new treatments for my facial pain.
He shot them all down, one by one. I was talking about an easier nerve block, nasal lidocaine, oxygen treatment, capsaicin, and CBD oil. He told me that the equipment was expensive, heavily marketed to them, I don’t know - go see a pain doc instead (I lost mine in the change of insurance a year ago), capsaicin is too superficial, the oxygen is too short of a duration, they only use that for cluster headache patients (btw that’s the same diagnosis I have, just that my pain doesn’t present the same way). Then he told me that pain docs are in such high demand that they are picky about cases and insurance they take, insinuating that I might not even get one to accept me.
My hope was crushed (again) and I was in tears as he started the injections. He asked if I was “ok” and I said yes, you just burst my bubble. He was silent. Silent! No softening of words, no glimmer of hope, just botox crunching into my face (for which I am very grateful).
As I sat in my car all I could think of is why am I not worthy of trying some of these treatments? Why is my pain not worthy of attempts to fix it? If all of my ideas were junk, then couldn’t you offer something else instead? Or because I’ve had it so long does he just see a lost cause?
I want to write him a letter and tell him what I think, but can I risk losing him for what his specialty is? Did I just bark up the wrong tree? I just mustered the courage to pursue getting some answers and trying more treatments and this is an emotional setback for sure.
I try to see his side of it: 20 years of chronic pain is a long time, probably tried everything. Those things are long shots, I should tell her and not lead her on to think anything might work.
But I just don’t get that. I would much rather have a little hope that something might work, so that I could keep on trying and fighting. I’m sure he didn’t think that what he did today was cruel, but to me it was.
Tomorrow it will be better, I will get back up on the horse and go again. I won’t stop until I find something that helps. Today just sucked, that’s all.