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My name is Bruce and I am an old timer when it comes to Cushing’s! In 1956 at the of 19, I was diagnosed with the disease. I was lucky enough to live in the New Haven, CT area where I had connections at Yale New Haven Hospital. My primary care doctor was Paul Lavietes (deceased) who was not only a relative but an Interist associated with Yale. I do not recall all of the details, but I believe my pituitary was checked and no tumor was found.
They decided to operate and check my adrenal glands. The operation was performed by Dr. Mark Hayes (deceased). I think in those days they used an ax and a pry bar! Two ribs were removed on each side. The procedure took approximately 12 hours. Not finding any abnormality on my adrenals, it was decided to remove them both anyway.
I had been young and very active before the operation. After about a six month recovery, I was right back to my old routine. Down hill skiing and distance swimming as well as automobile racing on an international scale were all a big part of my life. I really didn’t slow down much. Working on the race car 10-12 hours a day for days at a time preparing for a race, then towing it to Sebring or Daytona, FL, or the Bahamas for Speed Week as well as local races were all part of my usual schedule. Not unlike before surgery.
Later I worked for Saab as a Service Engineer, and a consultant and saleman for Robert Bosch traveling New England and Northern New York. I don’t remember having any of the psychological or physical symptoms the other survivors describe.
I am now 69 years old. About 4 years ago I started losing muscle mass, having leg cramps and pulling muscles. Since most people my age have high cholesterol and are on a statin drug, I blamed it on the Lipitor I was taking. I complained to every doctor I saw….General Practitioner, Endocrinologist, Cardiologist and Neurologist. They all agreed I was wrong!
When the pain got so bad I could not walk and had to ride around in a cart at the grocery store, I took it upon myself to stop the Lipitor. Within 48 hours the pain was gone, but muscle mass still was disappearing at a steady rate. When all this started, I was 5’11” tall, weighed approximately 250 pounds and was quite strong and agile for my age. I now measure 5’9” and weigh 205.
Finally all my doctors seem to agree that I have a steroid induced myopathy. But no one has a clue what to do about it! I have just had an MRI done of my pituitary as well as more blood work and am waiting for results.
I have lived a wonderful life despite a number of major surgeries. Bilateral adrenalctomy in 1959, Acoustic Neuroma in 1965, double heart bypass in 1991, a back surgery in 2002, another in 2004, and just had a hip replacement in Oct. 2006.
With all of this, I’m in pretty good shape for the shape I’m in! But why after all these years is this steroid thing showing up? What is causing the loss of muscle mass and what do I do about it? I am now at 25 mg of Cortef per day and we are still testing. Please let me know if anyone has had this type of experience!
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