Met with my doctor and his nurse for 30 minutes today.
They have done all the paperwork for the referral to the Neurology Center, including all my records and scans. He spoke to them himself, stressed the urgency. They have agreed to take me on as a patient asap. They said that it still might take a few days to actually set the initial consultation, as they are very booked, regardless of the urgency.
Nurse said if I don't get an answer by Friday, to call her personally, and she will bug the contact at the Neurology Center.
As far as meds for now, he upped my Fentanyl from 100 mgm to 125 mgm immediately. I filled the new prescription on my way home, and will use the first patch in the morning. He's wanting to get both an evalution and opinion, and possibly a new diagnosis for the pain before doing anything radical on the pain meds, since I am well tolerating what I am on. Wants to see what else might be going on before making huge change. Said at my August regular appointment with him, if things haven't been figured out by then, he will up it to 150 mgm. Was very sensitive to the increasing pain level and increasing frequency of "severe pain days" beyond my normal chronic pain days.
On the bladder spasm issue, not as encouraging. He has talked to the expert at Duke, and not looking good. He pretty well repeated what the doctor as MUSC said. The only hope of eliminating them would be with a high risk surgery, 10 -12 hours, long hospital stay, even longer recovery period than my original by-pass surgery.
Said that he had never seen such extensive radiation damage in that area before. That the chances of going into the rectal wall were high, and just like the other expert said, I could wake up with a colostomy to go along with my Urostomy (my worse nightmare). And as the other doctor warned, high risk of fatality with this type of surgery, and even if you can get by all the risky part, he said he couldn't guarantee that it would eliminate the pain in that area.
He's not saying absolutely "no", wants more time to consider the whole thing, and still hasn't decided to see me personally, said he had enough scans and medical records to get the picture. So we will see, be a shame to have to live with those spasms the rest of my life, on top of the chronic pain. So far, no available meds have helped.
He also remarked, that when my uro-surgeon did the by-pass, he should have left a Suprapubic port in place, so that in an emergency, there would be some way to access my non-functioning bladder.
Post Edited (Purgatory) : 7/5/2013 10:34:01 PM (GMT-6)