And It's About Time There Was Some Support For Cushing's!
Hello, my name is Renae and I am 16 yrs old. It all started in the beginning of 2006. I started to notice a change in my overall health and body. I looked like a body builder. Some of my symptoms consisted of puffiness, bad acne, fatigue, tiredness, and many others. It was a very scary time in my life, because I didn’t know what was going on. I started off by going to the pediatrician. They told me that everything was fine and just to continue on with my life. However, my Mom still knew that something wasn’t right. She made an appointment for me to go down to Dupont Hospital for Children and meet with a pediatric endocrinologist. He told me that I was overweight and I needed to go on a diet. My Mom was a time bomb ready to explode. After that, I went to a reproductive endocrinologist. He examined me and told me that I had high insulin levels and I would have to stop eating a lot of sugars. We were not happy leaving that visit. We knew that something was wrong when these changes and health problems started to happen so rapidly. The doctor sent me out of his office with a few scripts to get some blood work done.
So as I was waiting for tests results, my family and I went to Disney World in May. We had such a wonderful time. It was my Aunts 40th birthday, so the night we arrived we took her out and had a nice dinner with Mickey Mouse and all of the other characters. We spent all of the other days having fun and going on all of the different rides at the various parks. My mom received a telephone call on her cell phone one afternoon when we were at the hotel; it was the doctor that requested the blood tests. He told my mom that he wanted an MRI of my adrenal gland and my brain. Well, I can’t even begin to tell you what was going through my mind. All I could picture was my body going through a really small tube where I couldn’t see anything. When I got in there, I imagined it being pitch dark and a lot of really loud noises. I was so scared, because I get very Closter-phobic. We only had a few more days left so I wanted to make the best of it. The next few days were wonderful. I didn’t want to leave. The sun was shining, the trees were whistling in the wind, and the sky was bright blue.
When we returned home, I went back to the doctors the next week. The doctor sat my mom, dad, and me down and told us that I had developed Cushing’s Disease and they found a micro size tumor on my pituitary gland, which is on the base of your brain. I totally lost it and cried for days. I thought the tumor could be treated and they could shrink it with medication. I was wrong. When I met with my third endocrinologist, he said the best treatment would be surgery. I was very nervous, but he assured me that the cure rate was anywhere from 80-90%. I went along with it and we were set up to meet with the Chief of Neurosurgery down at The Hospital of the University of Pennsylvania. We took all of my MRI’s and tests and he wanted to be sure that there was definitely something on my gland, because he did not want to do any unnecessary surgeries. At that point, I just wanted to explode! He sent me to my fourth endocrinologist.
My first visit with him was in July of 2006. I went through about ten different additional tests from then until December of 2006. The last test finally determined that I could go ahead and schedule the surgery. I went back to the surgeon and they scheduled me for December 13, 2006. It had to be one of the scariest days of my life. I left my house at 5:00 AM for the trip to the hospital. When we got there, they had to prep me and get my ready to go into the operating room. The room was very bright and there were a lot of people in there. The last thing I remember was the anesthesiologist telling me to breathe in to the mask and don’t breathe out. It was such a weird feeling. My body got very limp, I started to get very dizzy, the room was spinning, and then I was totally out. It was the longest 7 hours of my life. I spent the night in the ICU, so they could keep a close eye on me. I went home four days later. I was out of school for a month, and limited with other activities. I recently found out that the surgery was unsuccessful. I have three different options and I have one month to pick. Either redo the surgery whicj is alot more riskier. Go through radiation. Or removal of my adrenal glands. If anyone has any information for me please contact me because I am a nervous wreck.
