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Amy's Story

I have suffered from Cushings from the tender age of 19 (now am 34). It took over 7 1/2 years, multiple doctors, and tons of tests before I was diagnosed with Cushings Disease and a mild case of acromegaly in 2001. I had transphenoidal surgery to remove a pituitary tumor in September 2001.

Within 3 months, my symptoms started to recur. I was told that because I had had the disease for so long that the recovery would take quite some time.

However, the next MRI showed that I had grown back a pituitary tumor in the exact same spot as before AND I now have another one diagonally across from the first. I am now suffering from cyclical cushings yet again! My saliva tests have shown high amounts of cortisol, but the blood and 24 hr urine tests are "normal." Because of the "normal" tests, the doctors are unable (or unwilling) to do surgery or explore treatment. This is the same way I was treated before.

Sometimes I just don't understand how if they see the tumor, I had it before, all of the signs and symptoms are there, why can't surgery be performed?!! It is so frustrating. I am trying to remain positive and continue to do research as well. I did find once I went to Cleveland Clinic that my first tumor (that was removed) not only produced excess levels of ACTH and growth hormone but prolactin as well! The original operating hospital and clinic never noted that in any of my records.

I would love to hear from others - advice, prayers, and friendship needed. My prayers are with any others suffering from this devastating illness.

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