Originally posted Friday, November 21, 2008
Dear Cushie Companions,
“Without exaggeration, I’ve always been an incredibly energetic, exceptionally healthy woman with tremendous stamina and drive well into my 50’s. Since 2003, despite tenatious attention to diet and excersise, I’ve gained 45 lbs, now nearing 160 (I’m 61 years old and 5’5”). I know many large women with beautifully proportioned bodies. Mine, however, exactly replicates a Cushing’s patient. I know I’m seen as a pitiable “fat-so” who should learn to leave the table sooner and get off the couch more often. How ironic!! If I weren’t doing exactly that I’d easily weigh more than 200 by now. Equally disturbing are the other symptoms I’m experiencing, most of them attrituable to a pituitary adenoma. I’m utterly physically disabled when compared to my “abilities” of just two years ago!! More frightening is how quickly they’re accelerating! My symptoms aren’t caused by steroids, alcoholism or drugs.”
The above is a portion of a cover letter I sent to a neurosurgeon last week, along with copies of the films and results of my MRI (on a 3.0 Tesla, W/WO contrast) that showed a 5x5x6 mm adenoma on my right pituitary gland. I’ve been cortisol testing for nine months with mostly elevated, but not outrageous results. The neurosurgeon personally called me within 3 hours of receiving my package and agreed I do have an ACTH secreting tumor that needs to be surgically removed. He’s tentatively scheduled surgery for Nov 26th, the day before Thanksgiving!! Pinch me, I’m dreaming!!
It’s incredible this happened so quickly when so many of my Cushie comrads are still waiting for a diagnosis years into their disease. I must give credit for my success to sites like yours that provide education and incredible information, stress the importance of being your own advocate by taking matters into your own hands, being totally prepared for your doctor’s visits; speaking their language (in medical terms); immediately dumping those who aren’t effective, believing or productive; seeking out the most qualified and preparing your presentaion as if you were an actress auditioning for the lead in a movie!! It should include your “resume”, before-and after-photographs, all test results to date, a brief out line of symptoms and when they occured. I hope you’ll be as fortunate as I was!!! I promise to keep you posted. Thanks for your encouragement and prayers. I’ll be in recovery one week from today!! Happy Thanksgiving, everyone….