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My first surgery was in February of 1992 in Oklahoma City. It was a prolactin adenoma about the size of a quarter. Within two years, I felt like my body was falling apart with more Cushing's symptoms. It took several months to convince my doctors to run tests to prove that I had it. By that time, the tumor was larger than the first time. The week before my second surgery, I was hospitalized for seizures, but never lost consciousness (the doctors say this is weird). The second surgery was in February of 1998, which left me with residual tumor around both carotid arteries and in the cavernous sinuses, which could not be removed. Nine months later, I had 30 rounds of Peacock radiation (relatively new at the time).
I had tissue samples studied (from both surgeries) at Vanderbilt University in Nashville, TN. They determined that I have a silent corticotropic adenoma. That basically means that my tumor "squirts and stops" at its own will.
About halfway through the radiation treatments, I started what I call "cratering" where I just can't stay awake for sometimes days at a time. Some of my doctors think this "cratering" is due to adrenal insufficiency. Others think that when the tumor is "triggered" by stress, then the radiation starts working. The treatment plan over the last three years has been for me to operate in "low gear" instead of "high"!
I tried to reduce my stress by not working. Once my retirement plan was used up I went back to work but I couldn't manage working more than two days in a row. After that, I'd "crater" for 3-4 days. I was granted disability in December of 2000 and do some work by email for the law firm I had worked for as a legal assistant.
Without a spiritual life, I don't think I would have been about to accept the reality of living with this disease. I find doing things for others helps to keep my mind off of me!
Questions for other: Has anyone been diagnosed with a silent corticotropic adenoma? Has anyone had a third surgery? Has anyone had seizures? How do you deal with the mental part of this disease when symptoms reoccur? |
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