And It's About Time There Was Some Support For Cushing's!
First, thanks for this great resource!
I have been diagnosed. My endocrinologist diagnosed Cushing's disease in Nov. 2003.
I'm now waiting for her to send my test results and MRIs to neurosurgeon, Dr. Ian McCutcheon at the M.D.Anderson's Brain and Spine Center in Houston.
I had the IPSS on June 23, 2004 and will be having pituitary surgery on August 11th or Aug. 13th, 2004. Dr. Ian McCutcheon, neurosurgeon at the Brain and Spine Ct. of M.D. Anderson Cancer Center in Houston, Texas, will be performing the surgery while at MDA Dr. Nicholas Sarlis will be my Endocrinologist.
My transsphenoidal surgery removing 40% of the right side of my pituitary was Aug. 13, 2004. My surgery was performed by Dr. Ian E. McCutcheon, a really experienced, competent, and compassionate neurosurgeon. I had a CSF leak which was repaired during the surgery. While in MD Anderson hospital, I required a blood patch to seal spinal fluid that remained in my spinal cord and was causing intense headaches. I also had some cardiac complications so stayed in the hospital for 11 days.
The pathology report revealed that my Cushing's has not been caused by a tumor. Instead it has been caused by pituitary hyperplasia which is extremely rare. The hyperplastic cells have been releasing excess ACTH. Hyperplasia can happen throughout the pituitary. In six months I have to return to MD Anderson for more tests for Cushing's. My cortisol level remains slightly elevated. The next step would be Gamma Knife Radiosurgery.
The news about the hyperplasia is unsettling, but at least I have very good doctors.
In the meantime, I'm back at work and am trying to keep a positive attitude (not always easy).
For the past few months I've been testing under Dr. William Ludlam, neuroendocrinologist at OHSU. Test results show I still have Cushing's. And so, I will have a second pituitary surgery with Dr. Johnny Delashaw at OHSU.
My doctors are all very competent and experienced, but Cushing's is a complex, difficult condition. I'm grateful that there are persons who care about us and do all they can to help us. Also I appreciate this board which provides the avenue through which we can extend our compassion and, hopefully, helpful tips to others.
