Welcome aboard, sorry you had a need to find us and be among us.
I am always amazed at the variety of stories that brings a person here. Haven't read of case quite like yours, but it sounds like it would almost make you go mad, with all that severe pain in the face itself.
Yes, for all the talk of the age we are in, with CT's, PET Scans, MRI's, I am amazed at how often they come back either clear or inconclusive. I am dealing with severe cancer related pain, and during a series of MRI's in April, a spot appeared around the L4 part of my lower spine, right where I was having such severe pain. 2 radiation doctors looked at the scan, plus my cancer doctor, plus another expert, so 5 doctors looked at the spot and couldn't determine what it was. they didn't think it was metastisis from the cancer, but then they said they couldn't rule it out. Some thought it was some kind of disc bulge, but they wouldn't agree on it either.
So I was still left with the pain, went through all that and the expense, and still don't have an answer..
Good luck to you, hope you find the right combination of meds to make life more bearable for you, and please keep us posted on what you are going through.
david in sc
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incont & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA still rising
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries
Member of Prostate Cancer & Chronic Pain HW Communities Since 10/2008
“I live in the weak and the wounded” – Session 9