And It's About Time There Was Some Support For Cushing's!
Originally from Windber, Pennsylvania, I now work in the College of Communications at Penn State University in State College, Pennsylvania, where I teach Broadcast Journalism. I have a wife who is a saint and a four and half year old son who is part time angel and part time devil. I am 43 years old.
I was first diagnosed with Cushing's disease caused by a pituitary adenoma in late 1993. Instead of the normal "fat pad" on my back, Cushing's caused a fatty tumor to grow on my spine. The tumor left me paralyzed without feeling or movement from the chest down. I had spinal decompression a few days before the transsphenoidal surgery in early January of 1994. (Afterall, I was already stretched out flat on my back just like a dead fish at the supermarket, why not?) It took nearly a year to recover fully and I have had problems with osteoporosis (12 separate incidents of compression fractures) and blood clots, ever since. But I did recover fully. Then in late 1998 I felt the familiar symptoms returning and was diagnosed with "recurrent episodic Cushing's." I had another transphenoidal which proved unsuccessful. I then underwent Gamma Knife surgery in the summer of 1999. That seemed to do the trick, even though it left me pan-hypopit. But this past fall the symptoms returned again.
I am currently undergoing treatment for recurrent episodic Cushing's once again. But the cycle of highs and lows seems to be pretty big. In short, my doctors don't really know what to do with me. But they are honest about it, which is a vast improvement over the egotists who think they have all the answers that I have seen in the past. I have learned many things in the past ten years. The most important is that I have to be my own best friend and not to be afraid to tell my doctors that, with all due respect, they are not always right.
Quite often the patient does know more than the doctor. Afterall, it is my body.
