And It's About Time There Was Some Support For Cushing's!
I feel like now I was getting sick about 6 years ago. I started feeling tired and weak, especially in my legs. Then I started gaining weight and feeling depressed all the time. I had always worked outside and was fairly active but now I didn't feel like doing anything. I got the "stretch marks" which I thought was from the excess weight. My blood pressure which had always been a little high started being difficult to control. Then in the summer I wasn't diagnosed until Oct. last year.
Well, let me try this again. I was about half way through when I hit something and either lost all I written or it got sent. Anyway I will pick up in the summer of 2001. My blood pressure started to really get bad and I was having headaches (really bad ones) every day. My doctor tried increasing my meds and changing them but nothing helped. I asked him if he thought I might have a brain tumor. I was scared because this went on nearly all summer and the doctor said he could run some tests but thought if was just my blood pressure and sooner or later he would find the right combination.
My wife is an RN and she told me to go to another Dr. she knew. He ran a bunch of tests and then referred me to Dr. Pyle. He took one look at my "moon face" and my stretchmarks and said "you have Cushing's". That was about the first of November last year. Dr. Pyle had done some research at NIH with Cushing's and I was only the second person he had ever diagnosed with Cushing's. He told me there were only 3 places in the world he would send me for surgery and NIH was #1.
Well, I had to wait until April of this year before I was called.
They did all of the tests everyone else had done and I finally had
my surgery on May 15, 2002. The reason it took so long is that they
were not sure exactly where the problem was. I showed a mass on my
pituitary but no tumor. Dr. Oldfield was very skeptical about how
my surgery would turn out. It turned out my tumor was inside the
mass, something he had never seen before. The morning after my
surgery my blood pressure was normal without any meds. Dr. Oldfield
and I were both very excited. I was told I was cured and I could go
home. Within 4 months I lost about 30 lbs. and could feel may
strength coming back. But then about 6 months after my surgery I
started feeling bad again. I was feeling weak and tired and
depressed. Then, a couple of weeks ago, I met Dr. Pyles other
Cushing's patient. She had her surgery a couple of years ago. It
was great to talk to someone who could relate to you.
She is the one that lead me to the Cushing's support group. I have
a lot of questions...
Had pit surgery one year ago today, 5-15-02, was back to work June 1,2002 (out of necessity) but started to feel like my old self only a month ago. Have last 43 lbs. since my surgery. They told me that would happen but I didn't really believe it. For anybody who has just had surgery, hang in there.
