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.

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Endocrine System
/ Acromegaly Support Group

50 years of acromegaly

Waterman
Waterman

I'm new to this forum but have enjoyed reading the comments. I'm 68 y.o. and have been living with this condition for about 50 years. I was diagnosed in 1987 and had most of the tumor removed with surgery. Due to advances in medical care my life hasn't been too bad since. I'm still ambulatory, but my knees are in bad shape. At the time I was diagnosed I didn't expect to live past 50 so I'm quite pleased with the bonus years. 

GApeach23
GApeach23
Brappp, I just saw your question. I have done very well on Cabergoline with relatively no side effects. I take it right before bed twice a week. I do feel a little extra tired the next morning and my body feels heavy and a little worn down but nothing too crazy. When we found my prolactinoma I met with an Endo and Neurosurgeon at the same center. The surgeon said that he did NOT want me to take Cabergoline if I wanted to have the surgery- he said that in his experience the medicine seems to harden and shrivel the tumor (think grape turned to raisen) and makes it more challenging to remove it. Part of my tumor was wrapped around the carotid artery and I would have to be on meds either way so I decided to only do meds and no surgery. Luckily the medicine has shrunk everything to basically nothing but I do have to stay on it to keep it from growing back. Maybe that's why your surgeon also wanted you to skip it?!
Lotosb
Lotosb
I'm 78 and was diagnosed in 1977. It wasn't until I went to the doctor and said something is wrong with me, rattled off the symptoms all together that something clicked with the doctor. He sent me to an endo specialist. I just had 5 weeks of radiation followed by one year of bromocryptine for treatment. I was fine for 40 years, until 2018. I began losing my vision. An MRI revealed a tumor pressing on my optic nerve. It was a radiation induced tumor. Following removal I am fine. My pituitary is gradually dying so I take hydrocortisone and levothyroxine supplements. Other than that no problems. I'm lucky.
Waterman
Waterman
I guess surgical techniques have improved markedly since 1987. Glad they were able to remove the tumor next to your optic nerve. We seem to be in similar situations.
Lotosb
Lotosb
My diagnosis was in 1977. I had radiation for 5 weeks and took bromocryptine for a year. For the next 30 years I took nothing Then I had to go on Hydrocortisone and Levothyroxine. Two years ago I had a radiation induced tumor removed. The hardest thing for me has been living with the malformations caused by acromegaly. I feel like a gargoyle.
Lotosb
Lotosb
One of the problems with acromegaly is you will never know what damage was done to your body until it's too late. Having this diagnosis changed my outlook on life. I decided to enjoy life now rather than wait for a time that may never come. I've traveled to nearly 50 countries and enjoy life as much as possible. Who knows how much is left to enjoy.
Waterman
Waterman
Yeah, when first diagnosed in 1987 I didn't expect to live very long. I live with the attitude that I may not wake up in the morning. I'm always surprised when I do. It's hard for me to have a bad day.