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.

284 Members
1,572 Posts
0 Online
Endocrine System
/ Acromegaly Support Group

My jaw/smile post surgery

roughtimes78
roughtimes78

Hello there! I just joined this support group & am excited to find others like me. I had surgery on Feb 7th of this year (2017). I didn't really notice my jaw protruding too much before surgery but it definitely was there. After surgery it still is and may even be a little worse? My smile seems like a "joker" smile. I have a underbite (had this before surgery) and can't even open a ketchup packet with my teeth. Does this get better?? Also, one side of my nose is a little larger, will this get better too? 

Twomore
Twomore
I don't have any experience with the surgery. I wanted to let you know we hear you out there. you are not alone. I don't think you can reverse bone growth. I am just making an educated guess. Sorry. How are your levels? How do you feel?
acrobully
acrobully
I had a protruding jaw which I corrected with double jaw surgery. The bone growth is irreversible hence why I chose the surgery.
wesley84
wesley84
I have the malocclusion of the lower jaw... Lately, I had taken a big bite out of the left side of my tongue, hurt like hell!

You are lucky that you had double jaw work done. For me, the surgeon said that I would be obstructing my airway, if they did surgery to move back my jaw. Sucks that it can never be 'normal', however, I wouldn't want to risk obstructing my airway.
roughtimes78
roughtimes78
Acrobully... how did you talk your doc into operating on you? Also.. anyone have low ferritin levels, high DHEA levels or hair loss?
Lotosb
Lotosb
I was diagnosed in 1977. The deformities that came with acromegaly have not disappeared. I used to be a reasonably attrative woman but after acro I looked like a gargoyle. I have struggled with that my whole adult life. Sorry for the bad news.
wesley84
wesley84
Hey, I feel the same as you. I sometimes find with all these side effects of the disease, I don't even know who I am. Don't think I ever did. But Acro has a way of taking control.

What I have learned in my 9 years since diagnosis and surgery, was to let life take you, and to take the bad with the good. I keep on stating that I am very lucky, if we lived years ago, many of us would not have had these new life saving treatments. Acro is a part of me, it doesn't make me who I am. That's what I constantly have trained myself to believe.