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Hi...my name is Karen...
I am 3 weeks post op from adrenal surgery. - having problems with pain and not feeling well. I’m hoping to connect with other’s through this forum who might have gone through a similar experience. ..
To condense my story, after many months of symptoms and testing, I was finally diagnosed with Cushings Syndrome last February. I had a 4cm adenoma on my right adrenal gland that was producing excess cortisol. My surgery was done laparoscopically at the Mayo Clinic in Jacksonville on 3/30. I was only in the hospital a couple of nights and have been back since home Easter Sunday. The first 2 weeks were OK - I was a sore , but had pain medication, took it easy, and rested. They put me on Hydrocorisone with a taper schedule : 25mg 2 x day for 1st 2 weeks, and then 20mg 2x day for another 2 weeks , then down to 10mg, etc.
I started feeling unwell (more tired, achy and emotional) - and having more pain on my right side around to my back at about the 2 weeks ...I was out of the pain medication- which they said I should no longer need at the this point. I was feeling so poorly last week that I went to the ER on Tuesday (it was too long of a drive to go back to Mayo). They did some tests, gave me a 100 mg shot of steroids and 3 day rx for more pain medication.
This helped... and I felt a better until Friday. Once again out of pain medication. I tried to rest, take Advil , Tylenol & hot showers. By 2a.m. On Saturday, I was so miserable that I went back to the ER. They did some lab work , CT scan and everything came back “normal”. So home again with another 3 day rx of pain medication. Then last night , I took a pain pill at about 11:30 and went to bed. Woke up at 3a.m feeling awful. Pain on my side and mid-back, flushed, headache, nauseous, chills and felt very weak and lightheaded. I live by myself so this was kind of scary ... I tried to calm myself down and took another pain pill. Laid back down until 6:30-7 - when I woke up feeling even worse. I called 911 and was taken to the ER by ambulance. They gave me IV fluids , medication for nausea, more pain medication, labs and another CT scan. Once again, everything was “normal”.
I asked for another shot of cortisol since that seemed to help so much last time ...
I’m back home now and feeling better - just very tired. It is hard to tell - but it seems to me like I’m having a hard time with cortisol withdrawal ... and maybe need a slower taper ? Unfortunately the doctors at the ER know very little about Cushings or adrenal insufficiency - and could really only rule out a major problem with my organs or an infection (and treat my symptoms).
I’m calling my Endo at Mayo tomorrow to ask for some help ... I don’t think it’s normal to feel so sick - but can’t keep going to the ER every few days!!
So I guess my questions would be:
1) has anyone else experienced post op pain or problems with cortisol levels?
2) how can you tell between the difference between normal cortisol withdrawal and a “crisis”? (and what kinds of things can cause a crisis)? Thank you so much for taking the time to read my post... I didn’t mean to go on for so long!!
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