Cushing's Info

hi, my name is emily c. i am fifteen years old & live at the jersey shore.

in november 2008 i went to my pediatritian for a small cold & what i thought was a kidney infection, i was given a new doctor on her first day at my office, she wanted to give me a once over just for safe measures, because my weight had jumped a large margin upward. she had me left up my shirt over my stomach & when she saw all of my marks, [which turned out to be straie.] she was immediately alarmed. she sent me for a full lab work-up & it showed a bit of abnormal cortisol, she then sent us to an pediatric endocrinologist at cooper.

the woman i was sent to Dr. Xu was not very understanding, my mother is slightly heavy-set & she sort of just looked at her then to me with a look on her face that read "you're fat she's fat, go away." & tried sending me to her nutritionist, she tried to show me growth charts saying "i don't see how you can go from here, to here in two years" when really, i did. she explained to us how rare cushing's was, but we would check anyway, she asked is i had broken bones & things like that. also with her being oriental there was a strong language barrier.

so we followed up with the tests she wanted, such as 24-hour urinalysis, salyva cortisol, & more blood with dexamethasone suppression. now, at first i thought this was the dumbest thing, ever, i figured "if it's so rare, why even check ?" though when i started looking it up i sounded like a pure textbook case. & sure enough a letter came back with my results which still proved abnormal. we saw that there was another endocrinologist's name signed to the letter above hers, so my mother being determined while watching me change drastically before her eyes, called him, Dr. Ernest Post & sheduled a follow up appointment with him. when we went back a moth later on febuary 18, 2009 for that appointment he got my test results & said that all my restuls showed that i did have the hormone secreting tumor on my pituitary gland of cushing's disease. he sent us from his office in vorhees to the hospital in camden to get an MRI & meet with the neurosurgeon.

after that long long day we had everything figured out & i was sheduled for my surgery on march 11, 2009. i waited, and waited then the day came my mother, father & i stayed at the ronald mcdonald house the night prior & went to the hospital at 5:30 the next morning. i needed an MRI that they told me would be a half an hour. after two and a half hours my neurosurgeon, Dr. Alan Turtz, told me, my parents & i that my tumor was ambiguous, & we needed to go about this another way. he then referred us to capital health systems, at helene fuld hospital & set me up with Dr. Kenheth Leibman, & Dr. Erol Veznedaroglu for another type of test similar to an angeogram to find which hemisphere it was on.

after the results of that came back my surgery was rescheduled for April 29, 2009. this time the surgery went off without a hitch, everything was smooth sailing. since then i have been on dexamethasone everyday until my adrenal glands know how work on their own i currently take .5mg in the morning & .25mg at night. things are slowing falling back into place, my menstrual cycle has started back up again, my buffalo hump has shrunk, & my straie are fading.

i am truly thankful we've caught this & i'll be back to normal somewhat soon.

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