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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Tmed 10/01/2015

Hi Everyone,

I was feeling pretty confident about everything until just recently. I had my surgery June 2014 and they were able to get most of the tumor. My IGF and GH are within normal range (albeit on the high end of normal). The doctor was so impressed with my MRI 3 months after surgery that they recommended that I have an MRI one year later. I have only been on Cabergoline and I thought things were okay (still a little tired, swell on occasion, but nothing too bad). So I just did my 1 year MRI and the tumor is almost the same size as it was right before surgery. Now they are saying I will need radiation. I could use some advice. I spent the better part of the morning crying. I was really hoping to avoid radiation. The idea scares me and I am worried I will end up frying my optic nerve or my entire pituitary. Any words of wisdom? I am so glad we have this resource. Thanks for your support.

J0KEYJ 10/02/2015

Tmed sorry to hear this..I had a large tumour..not surgery but on somatuline ..which shrunk the tumour and is keeping it small..so can you switch to this..before radiation..

Tmed 10/03/2015

I actually did the Somatuline Depot for 10 months before my surgery. We were attempting to maybe shrink it before the surgery since it was around the carotid artery. Unfortunately, my tumor did not shrink at all. Anyway, since this post, I have received some feedback from my surgeon that what the radiologist saw may not be re-growth. It may be scar tissue or something??? I am waiting to hear back from him. The initial information came from my endocrinologist. Still waiting to get the final verdict. Thank you for responding to my post. I am so happy to hear that the Somatuline is working so well for you. :-)

J0KEYJ 10/04/2015

I shall keep my fingers crossed it is good news..they certainly know how to scare someone..got the t.shirt for this one with something..the waiting..nightmare..yes somatuine works well for myself but it did take time to work as in shrinking tumour..Some symptoms it cleared so Im so pleased with this..I know some members dont get on with it ..so not suited for everyone..wish you all the best

Lifespalette 10/30/2015

Tmed....just wondering if you've heard anything more from your doctor. I know regrowth is possible and that scares us all, but hang in there until it's confirmed............Have you asked about going on Sandostatin LAR or the Somatuline Depot before taking the last step of radiation? I had the gamma knife procedure when my levels (IGF-1) didn't drop sufficiently enough following surgery and since my tumor was wrapped around my optic nerve it was scary, but I have to say they are pretty damned accurate with those beams. I had no problems, but the procedure didn't work either. I'm on monthly shots for the rest of my life and they have worked.

Keep us informed.

Tmed 11/06/2015

I have very good news to report. My neurosurgeon feels that the 1.3 cm "lesion" is nothing more than scar tissue from the surgery. I went away (like I am sure many of you did) for my surgery and so the doctor told me I could just have an MRI locally and then they would discuss the results with me. This was a tremendous mistake that I will not repeat. It was literally weeks before my MRI was read, meanwhile the local doctors were saying this was re-growth. Next year I will be making the trip to do the MRI and have the thing read immediately. I think that whole process took a few years off my life just worrying about what was happening. Thank you so much for your responses. This site really is incredibly helpful as we all truly understand how difficult this journey can be. I am so grateful for the support...thank you all very much!

J0KEYJ 11/07/2015

Timed...thankyou for update...such good news..:)

wesley84 01/11/2016

TMED I am in a similar situation. I had my MRI completed at a local hospital outside of the center that my lead Endo operates. My Endo had ordered the MRI be completed, and I am now awaiting for the summary report to be sent to him.

Its incredibly frustrating that two hospitals in the same system cannot simply send records electronically.

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