Cushing's Info

My nightmare with Cushing’s began in the summer of 1981, I was 21 years old, married and the mother of a 2 year old. The symptoms began slowly, first my monthly cycle stopped, of course I went to my GYN and after an examination I was diagnosed with cervical cancer. After surgery and treatment, my cycles did not begin again, so my GYN proceeded to put me into hormone hell and after this failed, he suggested I see my own personal physician.

As the disease progressed I began to show all the common signs of Cushing’s, the weight gain, (in all  over 200 lbs), the bruising, the moon face, etc.  I knew there was something seriously wrong, I just didn’t know what.  Then my second nightmare began. Over the course of five years, I sought the help of 11 different doctors and without an examination or tests, I was told an array of things, from “It’s stress,” It’s hormonal,” Your just fat and lazy, you need to diet and exercise. I even had one doctor tell me it was all in my head. How ironic I found it after my diagnosis that he was right, it was all in my head. This went on until July 1987, at the time I was a nurse, working in a skilled nursing facility.  One night we were short staffed and I was helping an aide reposition a patient and when we lifted her I heard this crunching and snapping sound, it felt like a bolt of lightening had shot down my back and it brought me to my knees.

The following day I walked into the E.R. and I was loaded for bear.  I had brought pictures of myself and a journal of everything that had been happening to me over the passed five years.  After x-rays were taken, I was put into an examination room and a while later a doctor walked in with my x-rays. During this time I found out this “doctor,” was an actually an intern. I thought, great, I’ve been to 11 doctors in five years with no results and now I get an intern to examine me.  I ended out being very surprised. He told me that I had fractured my back, from the T-12 to the L-5 vertebra, one on top of the other. He explained that this was a very unusual fracture for someone my age, this was a type of fracture one would see in a person twice my age and he wanted to perform several tests on me.  After a week of massive blood tests and having to urinate in a Clorox bottle and two MRI’s, I was diagnosed with Cushing’s and was told there was nothing they could do for me, that I should go home and begin getting my affairs in order, that I had approximately four months. I went home, I was numb, then became very angry and began raging at God, I think I called him everything but All Mighty. Then I sat down and began making my own funeral arrangements.  I had contacted the funeral home, arranged for the service and the cremation.   What a strange feeling it was, to be 26 years old and arranging my funeral.

I truly believe in my heart that God heard me because a week later I was contacted by an Endocrinologist, , who was connected to UCSF and I was asked if I would see him.  I was given an appointment a few days later. He examined me and told me that UCSF currently had a surgical study (microsurgery) going on and would I be interested in joining it. This surgical procedure is now the common surgery for Cushing’s disease but in 1987, it was experimental. He gave me no promises, as a matter of fact I was given a 30% chance of success. I thought, well 30% is better than 4 months.

On August 4, 1987, I underwent an extensive but successful transsphenoidal resection. Unbeknownst to me, within the study, I had, had the tumor the longest, 5 years and had the largest tumor. The Neurosurgeon removed the tumor, 18 mm in diameter, the surrounding tissue and a good portion of my pituitary gland.  The tumor was wrapped around my pituitary gland, extended into the brain stem and had run up to my left eye, compressing the nerve. I was in a coma for several day afterward and wished I had stayed that way until I had healed as when I woke up I felt like crap.  My nose was stuffed full of gaze and my face began at the bridge of my nose and puffed out from there, I could barely open my eyes and looked like a Mac truck had hit me head on, but was alive.

Upon being released from the hospital I had asked about any long term consequences from the surgery and neither doctor could give me an answer.  I think this is where my frustration really began.  Over the past 22 years there has been numerous health consequences, all a direct result of the Cuhing's.  All my major organs had been damaged, a year after the surgery I was diagnosed with a chemical imbalance in my brain.  The five years I had the tumor has caused extensive damage to my cartilage, joints and bones. I was diagnosed with osteoporosis, osteoarthritis, degenerative disk and joint disease before I was 30, and finally in 2005, my adrenal glands and kidneys failed (Addison’s disease and CRI,(Chronic Renal Insufficiency) and my doctors took me out of work permanently. I now require leg braces and a cane to get around and my condition will continue to deteriorate

When the Internet came about, I began contacting every research, every teaching hospital there was across the United States and found out that the study had gone no further than the surgical procedure itself.  There was no follow up on the patients and there has absolutely been no studies conducted regarding what happens in the aftermath of long term Cushing’s disease and there really should to be.