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

Bone vs. Soft Tissue Growth

kvb927
kvb927
Hi All,

I posted recently under, "Possible Second Surgery." I would love to hear your thoughts on that post.

Anyway, here is something that confuses me about my case: I haven't really had much soft-tissue growth, like of the lips, nose, fingers, toes...But, I've definitely had bone growth, most obviously to me in my face. I thought the soft tissue growth happened before the bone growth?? Has anyone had a similar experience? Can you think of a possible reason for it?

Thanks,
K
spiegal
spiegal
My daughter had both soft tissue and bone growth, soft tissue gone back to normal, just her rib cage is slightly bigger, hope this helps
PapillonRoseBleue
PapillonRoseBleue
I had both and looked very different just before the resection. After it the soft tissue changed. I don't know what "normal" is for me. I have to keep redefining who I am and what I look like. Now the soft tissue is starting to swell up again because the IGF1 is starting to climb up. The bones will never go back. I have major changes everywhere. I pulled out some old shoes to show a friend who has known me for less than 10 years what the disease has done to me, becaues she didn't really understand. I said I really am like Cinderella turned into Princess Fiona. I really do want to do what an acro sister suggested and get a tiara and form a sisterhood of princesses for us !!!!! (and especially adopt the idea internally!) I could buy size 4 children's shoes as an adult sometimes. I could share my mother's shoes. My feet were proportionally small for the rest of me before acromegaly. My mom is tiny. I'm 5'4" and used to be small-boned - used to be small framed. My feet, hands, ribs and head have most definitely grown. The jaws and the entire skull are causing unbelievable issues. I held up my before shoes next to my now shoes and you wouldn't believe I could possibly have worn those other shoes as an adult. I used to have a different color of shoes for every color of the rainbow so I could match whatever color of outfit I would wear to work. Now I have to custom order shoes at an astronomical price because I can't walk into a store and find shoes ready made that will fit my feet.

I suppose the question could be better answered by the people who understand WHY we get the swelling so they would understand why you're NOT getting it.....
kvb927
kvb927
Spiegal - where could you see the soft issue growth? Thanks.

Rose - (((HUGS))). I'm so sorry. Is there another tumor? I like your tiara idea!

I guess I am lucky in that I haven't experienced foot and hand growth - only widening. I wear my same shoe sizes, but am limited in widths, because my feet have gotten wide at my bottom toe knuckles and I can't wear bracelets you have to slide onto your wrists. I have bits of growth on my spine and hips, but I am most concerned about my FACE. My chin is such an odd shape, I am growing bumps above the inner corners of my eyes, and my nose is crooked. All of these things are happening asymmetrically, which is disturbing. Does this sound familiar? Is it very odd to have this without soft tissue swelling?

Also, do you know if our insurance companies will cover plastic surgery?

Hugs,
K