And It's About Time There Was Some Support For Cushing's!
My name is Shannon Linn. I am from Lewistown, PA. When I was about 15 years old, I began to put on weight excessively. I probably gained about 100 pounds in a year. My doctors all told me I was just fat and ate too much, although I probably only ate about one meal a day.
My gyno diagnosed me with pcos. I went through about 5 different medicines, none of them working, and finally I just quit seeing doctors, because they said that my excess weight was causing the pcos and that pcos itself caused weight gain, so basically I felt they were telling me it was hopeless.
After I got married though, I was thinking about the fact that someday I may want to have kids and the absence of a menstral cycle would probably put a big hinderance on that. So, I decided once again to go to the gynocologist. This time, I went to a different one.
Noticing some of my symtoms were not associated to pcos, he referred me to an endocrinologist who did the acth and cortisol tests. When they came back higher than usual(much higher), he suggested that I might have cushings. He explained it as a tumor on the pitutitary gland. I was scared to death. He ordered an MRI and it showed that his suspicions were right. I had a 3mm (I think that is the correct measurment) tumor. This was around June of 2001.
I had my first surgery in October (2001). I was feeling great after that. It seemed everything was going back to normal. I lost 40 lbs. in three months, the hair on my face and other places was just "falling off", and I had energy again. Then about a year later, I started feeling bad again. Another MRI revieled that there was yet another tumor. They weren't sure if it was a regrowth, or if the surgeon just missed a tiny piece.
In June of 2003 I had my second surgery. I will tell you this, the second time is worse than the first. I suffered from headaches and other things. This time though, I didn't have that period where I felt any better. I told my doctor and we discovered that I had yet another tumor, but this time it was inoperable, because it was too close to my optic nerve.
My doctor suggested gama knife radiation. I had that done in February of 2004. Well, it is July of 2006 now and I still have the cushings. I actually still have a tumor, it is just too small to see. The thing about gamma knife is that it can take up to 3 years, so I have about seven more months to go.
It is very frustrating. I am in constant pain. I now weigh 312 pounds. I get really frustrated all the time and I hate looking in the mirror. Hopefully, soon I can update my story to say that I am fully recovered, but until then, keep me in your thoughts and prayers and if there is anyone else who has been through all this, I will gladly talk to you. It is hard talking about it with people who don't understand. Best of luck to all.
