Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
Anyone from New Jersey? Can anyone recommend a neurosurgeon in new jersey area? Newly diagnosed.
GApeach23
I'm in Georgia. There is an amazing team at The Pituitary Center at The Emory Clinic here in Atlanta. Worth the travel if you havent found anyone in your area.
Jameela
Thank u. I will look them up
Jameela
Did u receive surgery there
GApeach23
I met with an endo and neurosurgeon there to discuss my 2 options. I decided to try meds first and ended up having a great response to cabergoline and the tumor shrunk significantly. There is a piece that is around the carotid artery that the surgeon would not have been able to remove so even with surgery I would have had to remain on meds forever to regulate my prolactin and keep the remaining piece from growing. Even though I didnt do surgery there, I was very impressed with the surgeon's knowledge and experience and felt very grateful that he would be the one to operate if needed.
GApeach23
I guess the part that I didnt realize at first is that it's ok to live with a small tumor- as long as it's not affecting too much (headaches, vision, etc...). The tumor doesnt have to be completely gone- you just have to stop it from growing and jacking up all your hormones... so lots of prayers that the meds help you regulate everything!
Jameela
Was your IGF high as well? Mines is slightly elevated and my tumor is small as well. I'm on cabergoline right now too
Jameela
My prolactin level is good
GApeach23
Ohh ok. Yes, only recently did my growth hormone become an issue. It got up to 700. I take octreotide injections and it is almost back to upper normal range.
bella57
I totally support Emory as I was diagnosed, out of the blue, by an enterogastronologist from Emeroy during a colonoscopy. He recognized some symptoms (physical) and sent in a blood lab, My life has not been the same since. I wonder where I would be physically/psychologically if he had not done that.
bella57
I could not edit but wanted to follow up. I went to UCLA for my pituitary surgery. I went for two reasons: They are a Center of Excellence and my family is near (20 mi.) there so I had a place to recuperate.
Jameela
Check your inbox GApeach. I inboxed you
Jameela
Yes I heard good things about UCLA
Lobo56
Had my surgery at NYU Langone Dr Dimitris G. Placantonakis, MD, PhD did it he was great removed a 2.4 cm tumor. and got it all.
Mimi8
Had mine done at Mt. Sinai in NYC - Dr. Joshua Bederson - extremely experienced and great bedside manner.
Jameela
Thanks everyone
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