Hi,my name is Nancy and ...I'm a Cushing's survivor, My story begins back in 99 when I began showing signs of high blood pressure, acne, and a few other mild changes. My family and I planned our first trip to Disney World and it turned into a nightmare! We arrived at our hotel, and I decided to "relax" I sent my kids and husband out to explore the hotel. When my husband returned I told him I felt as though my heart was racing. He tried to soothe me but nothing would I spent the whole night awake believing I would die if i fell asleep. I insisted we go to the emergency that morning, before continuing on to the parks. They checked me out and aside from a rise in blood pressure they sent me on to enjoy my day! I experienced one crazy symptom after another and after 4 days we were home.
My PRIMARY care doctor was seen next day. He said I had a panic attack. He sent me to a shrink who prescribed Xanax, and eventually Prozac.
Months went by and then my periods stopped. I wen t to my gyno who after a few tests referred me to a endo/gyno who sent me for an MRI which determined I had a Pit Tumor. He referred me to a neurologist who agreed surgery whould be necessary. I went for a second opinion and this surgeon agreed. (at this point the word cushing had not entered the picture) After a few tests i was ready for my transphenoiday resection of the tumor The procedure began with an inscision in my gum to reach the septum and on up . The ENT that perform this part had to abort the
surgery because my anatomy was a little different from most I had a thickness in the
sphenoid sinus cavity extra bone that could not be safely guided. So a day later i was realeased with a puffy face no feeling in the top of my mouth packing up my nose and still a tumor on my pituitary.
I was left with the belief that as lon as I showed no signs of loss of peripheal vision I could lead a normal life. no sense in tampering with the tumor because the only way to get to it now was intercranialiy. As the year went on I continued to notice weight gain that was completely out of my control specifically the belly. I had a lot of fluid in my body no water pills seemed to alleviate. My body was bruising all the time . My Primary questioned my son on a visit about possible spousal abuse! Finally after telling my story to an aquaintance I ran into at a party . She is a nurse she looked at me and said cushing's that was the first i heard the word. I called back my neuro surgeon to see what he thought. He refferred me to an Endo.At this point I was eating no more than 600-900 calories and still gaining. His response was Eat Less! He put me through a raft of test including urine testing for days and days. a petrosal vein sampling. after that he decided I didn't look cushy enough so he decided i has pseudo cushings!
After that Dr. sent me on my way I got on a cushing website not this one and looked up an endo in Philadelphia I Emailed him with my bio and he got back to me the very next day. I then went through a whole lot more testing to make sure that the cortisol was coming from the pit tumor and not elswhere. I then had to meet a new EMT to decide whether to try the nasal surgery route again or not . Based on the film he agreed the way to go was a craniotomy. I met with a new neurosurgeon recommmended by my present endo (he insisted i not use the old one} Surgery was performed in May 2005. I was sent home with 80 mg of daily cortisol which I was weaned off of by May 2006 I had a very weaked achey body to deal with for a good year and a half. I am now doing so much better my neuro says i dont need to see him unless my cortisol level elevate. I have them checked again in Dec and hopefully they will stay where they belong. My period returned and are now steady as always I'll be 50 in Feb so anything can happen with that and I'm sure when I miss my first one I'll begin to panic thinking cushings, but it will probably be the big "
I am so happy I have found this website I could have used it years ago! I have never met another cushing's patient . I always felt so isolated and lost! I would love to hear from anyone of you. I am still trying to figure out how to get in the chat room . Wish me luck!
PS I gave myself the name PoePoe back in 2002 because it seemed to fit my moonface!
Thanks for the time!
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