...I posted the following last week. I'm moving it up to update it. We now know that Mike had a pre-op serum cortisol of 256. I cannot "say" that calmly. 256!!! Suzy had a tough time tracking that down. Too tough of a time. Someone needed to know that in the hospital. She says they want to do a bilateral adrenalectomy (otherwise known as a BLA and pronounced "blah" in jest/fun...) and radiation on the remaining tumor area.
Mike is in trouble:
My name is Susan and I am writing this bio for my husband Michael. He had a lot of health issues that were misdiagnosed and unanswered for several years. He developed osteoparosis, diabetes, high blood pressure and other problems over night it seems. He also had several features of cushings such as the moon face and buffalo hump.
He was finally diagnosed with Cushing's about three months ago. November 2007 he went into the hospital with backpain and he was unable to stand. Within days of being admitted I was told he had a compression fracture that paralyzed him from the waist down. [Robin's note: high cortisol from Cushing's Disease causes osteoporosis]
He had transphenoidal pituitary surgery June 23. The tumor was approximately 20 cm which had doubled in size since November. Only part of it was removed because it was in the nerve center of brain and "wrapped" around carotid artery. Neurosurgeon was able to remove more than thought, but he might need another surgery or radiation treatment.
Robin's Note: Since this was posted on the cushings-help.com website, Mike has had a turn for the worse. Gracie, who has been in touch with Suzy, writes:
I was in chat with a new member the other night ... Her name is Suzy...and her husband's name is Mike. She told me that Mike had pituitary surgery about 11 days ago. He is in a hospital in Philadelphia, PA. Mike is in serious condition! He is on a ventilator, and it had to be turned back up to 100% last night. He is paralysed from the waist down (I'm not sure if this was before or after surgery), when his PICC line was removed, a blood clot shot straight to one of his lungs. The other lung is in threat of collapse. The list goes on and on.
...I asked Suzy which type of replacement [hormone] he was on, and how much. She said he is not on ANY!!!! I asked why and the doctor told her he is more concerned with his breathing problem right now!! ...I explained the whole replacement thing to her and how this is crucial for life. His tumor was around an inch in size. It was rapidly growing, and it was wrapped around his artery, so they did not get all of it with that surgery. I truely believe that is the only thing still giving him enough cortisol to keep him out of a coma right now.
For those of you who don't know, if the body is used to high levels of cortisol, it goes into shock when those levels are rapidly dropped even if some is being produced. Updates as I get them.