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Sunday, June 28, 2009

Aly (Aly H), pituitary bio

Hi, my name is Aly and I am a 26 year old from NY.

I have been dealing with cushing's for the past 4 years. Like most suffering from cushing's, I went to a handful of different doctors who ordered test after test to try and get a definitive diagnosis.

I would hear the same line over and over again from the doctors I would see “I think you have Cushing's but I would like you to see another doctor to confirm findings.” I have seen at least 10 different doctors during this nightmare. Might I add that during my treatment/diagnosis process, 3 of the doctors left & moved away from the practices where I was seeing them. So I was forced to start over with new doctors and go back to square one.

Within the past month I have found amazing doctor’s at Mt. Sinai Medical Center in NYC and within a few weeks of my initial consult I was scheduled (and completed) Petrosal Sinus Sampling. Those results just came back and showed to have positive findings so the doctor now feels we are good to go for surgery. When I heard the words that the doctor was ready to do surgery

I felt like the weight of the world was lifted off my shoulders. A glimmer of hope is now in my future. We are hoping to plan the surgery as soon as possible.

For anyone who feels like there is no hope or that the road is never ending, keep going and fighting and you will make it to the end of the rainbow.

Update May 17, 2010

It is now May of 2010 and I happy to say that I am starting to feel like myself again. I had transphenoidal pituitary surgery in July of 2009 and then again in August of 2009. After the first surgery I was still producing cortisol so the doctors and I decided that it would be best to repeat the surgery. The second surgery was more intense and 90% of my pituitary gland was removed. After leaving the hospital I started my slow recovery which included months of heavy steroids. In February of 2010 I stopped taking steroids and I have started to feel so much better since I stopped that medication. I also have lost 50 lbs already and the weight is continuing to fall off.

If anyone would like to ask me any questions I am more than happy to talk and help. I want to be able to give as much help as I was given during my journey.

Listen to Aly's Interview May 06, 2010

Email Aly
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