And It's About Time There Was Some Support For Cushing's!
Pituitary surgeries June, 2000, and Dec.2001. Adrenalectomy is scheduled for July 30, at Toronto Hospital for Sick Children
Hi, my name is Deborah, and my son Curtis has Cushing's. He was 13 years old when this all started. He had always been very skinny, he was 5'8 and about 130lbs in December/99 when he stopped sprouting up and started sprouting out! I didn't worry at the time, thinking it was just the normal growth spurts that kids get, but it started adding up fast. At his yearly physical I discussed this with his doctor, he said he seemed healthy, just watch his diet and stay active. He always was involved in sports, running was his specialty. Soon he had no energy to be active, started having dizzy spells, hand shakes, stretch marks, body aches, very high b.p., teachers said he was falling asleep in class, couldn't concentrate, etc. etc. In April/00 he was having severe headaches, so the doctor started running tests. It didn't take long for them to suspect Cushing's (from what I have read on these boards we were very lucky). He was sent to Toronto Hosp. for Sick Children for consult with endocrine, who admitted him immediately. He was sent home 7 days later with a diagnosis of Cushing's. He had inferior petrosal sinus sampling and 3 MRI within the next month.
He had pit surgery June 6. Cortisol levels dropped off and they were sure he was cured, but I was not. He never seemed to improve much and by May/01 urinary cortisol was up to 600. They took him off hydrocortisone and 1 month later cortisol was 1700. Here we go again, another MRI and ipss. Pit. surgery again Dec. 21(merry Christmas!) Not successful. His case was presented at a pituitary conference, resulting in a trial of Ketoconazole, which did not help.
They decided to do a sub-total adrenalectomy, leaving a small portion behind, this was July 30/02.He had many complications following this surgery, but finally started to feel well! He felt great for about a month, even got to go to school! Then suddenly everything started again. Urinary cortisol was > 4000, started Ketoconazole. again but he got sick and I took him off of it.
Back to surgery again to remove the residual adrenal tissue. They had problems finding it laparoscopically, and after 4 hours the surgeon came to tell me he has to open up. His spleen was bleeding and they couldn't control it, he was loosing too much blood so they removed his spleen as well. It's been a month now and he seems to be starting to feel better.
I'm keeping my fingers crossed....
