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

Here I go again..

notfeelingthis
notfeelingthis

Never in a million years would I have thought I would be joing a support group. Not that I am above it, I just have always been able to handle whatever life has thrown at me. Feb 2015 I was first diganosed with Acromegaly , surgery was April 2015. In 2 weeks I will be having my second surgery due to it growing back and my IGF-1 levels extremely high again. This time seems so much harder then the first go round. The aniexty , depression, fatigue that its accompanied by is overwhelming .  I keep telling myself, just 2 more week...I can do this but its getting so unbearable .  Anyone else experience something similar with a reoccurring tumor??

zippy62
zippy62
Facing this for the second time is very rough. The instinct is to say, Why me ? From deep within you will find the strength to get through this - maybe with moments of tears in absolute frustration. We have been through so much already and acro keeps sending more each day. I faced increasing IGF
zippy62
zippy62
.... increasing IGF-1 levels that led to sterotactic radiation treatments and a long list of medication changes. I was absolutely terrified and confused, but I had great family, friends and medical team to help me through. Not all days are filled with sunshine and roses -- some are crappy and overwhelming. I push through those times and hope that tomorrow will be better. Please know that you are not alone - we are here to help each other.
notfeelingthis
notfeelingthis
Thank you for the words of encouragement. There are days when it defiantly feels overwhelming. I had my pre-op yesterday and due to the complications from the first surgery they are going to insert a spinal drain tube in before surgery. I had a very bad leakage of spinal fluid coming out my nose after the first one which kept me in ICU for a week. Most painful thing I have ever experienced. I feel very lucky for the family and friends I have who support me the way they do. I also have a great team of docs and surgeons who I absolutely trust. It was not fault of theirs that he could not remove the entire tumor with the first surgery.

I think because I have been through it once and I have a pretty good idea what to expect may be causing additional anxiety. I need to keep reminding myself that so far my track record for making it through bad days is 100%.....fingers crossed!