I haven't updated in a while, so here's what is going on right now:
I'm still awaiting a surgery date. Dr. P's endocrinologist has to go over my paperwork and decide if I'm ready for surgery. He said I would hear back within 1-2 weeks, and Tuesday will be the end of week 2, so any day now, in theory.
Because of the feeling I got from him on that phone call (and all the negative reviews I've heard of this endocrinologist --even from his own mouth-- about his experience with and understanding of Cushing's Disease), I decided to come up with a "plan B", which then led to a "plan C" as well. ;)
Dr. F (MY endocrinologist) sent a second surgery referral to a neurosurgeon in Texas at MD Anderson. Dr. McC was my first pick, but surgery with him would have to wait until January 2014, when I have insurance coverage. There are various reasons this might be the best scenario, but I'm not closing the door on Dr. P in Ohio yet. Dr. F told me this week that Dr. McC accepted my referral and said he would be pleased to help me. (Oh, and he has already fought and won the battle to be able to decide for himself whether he will preform surgery without outside oversight, so that means that I wouldn't have to play this waiting game).
Dr. F also had me schedule a phone appointment for this week to discuss going on medication while I wait for a surgery date. I started 400mg daily (200mg at 8pm and 200mg at 10pm) of Ketoconazole on Tuesday evening, and so far so good. It is taken at night to try to flip my diurnal rhythm back to where it should be (ie, low at night, high in the morning). I have not needed a morning dose of hydrocortisone yet, but have them on-hand should I swing too low or my body not be "high" enough in the mornings. I have noticed a few improvements so far, the earliest and most noticeable being my ability to sleep. Many have said that it took a while for the medication to really kick in, and that they often felt worse for a while (with increased intensity of "low cortisol cycle" symptoms) until their body adjusted to the new levels. I'm in a high cycle right now and hopeful yet more improvements will come, though I am a bit leery of the aches, pains, etc increasing. I'm hoping it'll all go well and I can stay on this medication, getting my body in better health for my surgery and recovery.
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