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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ledgy 09/17/2011

Yes,I am in recovery from my surgery! It went so incredily well! My surgeon, Sr. Steven Sullivan from Univ of Michigan is very happy, he said i had the best possible outcome and he believes he took out all of the tumor material....

It sounds crazy, but i believe i am feeling better already....slept better and reduced swelling and pain in the joints of the hands and feet.....

I am so hopeful and happy right now!!! The amount of time and support I received from the pituitary team at U of M was incredible (and I am an MSU grad!!!!!!). I would recommend them to anyone anywhere who wants a high level of care and personal attention!!! Endocrinologist is Ariel Barkan who is widely publshed in the field and who is a great guy!

Thanks to each one of you for your wonderful support, encouragement and ideas!

Ledgy

VicMarg 09/17/2011

Way To Go!! You will probably start to notice that your face, hands & feet are not Swelling as much. You can see the daily progress. It is amazing!

Even a year later, since my surgery, I look in the mirror (in the morning, I start to swell as the day progresses but not like before) & think that my face is thinner.

Lots of hugs & Speedy Recovery!
Vicki

mrslouie 09/17/2011

Congratulations! You will only feel better and better. It just feels good to "feel well". Some things are slower to change than others but as my endo says, I have to learn patience! Good luck to you in the days and weeks to follow!

J0KEYJ 09/18/2011

I was thinking of you..you feel very good alot do but please please dont overdo things ok..do not give this conditon a reason to set you back..

Harmony22 09/18/2011

Congrats Ledgy and be sure to take time to rest. All the best to you,
Harmony

JohnD1 09/18/2011

Congratulations, Ledgy!

And take enough weeks off to recuperate.

John

deleted_user 09/18/2011

so pleased for you, take good care and have plenty of rest. wishing you well. I had surgery 18months ago and I'm doing well, a neighbour just commented a few minutes ago how well I look and how my face is still changing. All the very best
flop x

JeriTX 09/18/2011

I'm so pleased to hear your good report! I know it is hard to hold yourself back when you already feel so much better. And to think, this is just the beginning of positive changes. Yes, patience is necessary, but the good news is that a lot of things will change. I continued to see observable changes for at least two years. This summer, FOUR YEARS after surgery I hit my lowest IGF-1 number yet. I had successful surgery with no follow-up treatment. I've heard lots of good things about the U of M program. My favorite endo, Dr. Richard Auchus, recently moved there. I hated to lose him, as he was very familiar with acromegaly. Continue to keep us up to date on your progress!

ledgy 09/18/2011

Thanks for all of the thoughtful replies, advice and especially the words of encouragement!

I am quickly learning to take it easy and to be patient with this! I tried to pick my grandson up and almost passed out! I am going to follow all of the instructions to the letter from now on!

I was wondering if any of you who had the tumor removed are on any treatments or vitamins to try to prevent the tumor from growing back? JohnD1 and I had an interesting chat about this a bit earlier.....Does anyone have any ideas???????

Ledgy

deleted_user 09/22/2011

Hi Ledgy: I am so happy for you! Please don't lift anything heavy for at least a month. ;-)
To answer your question: I really don't know of any treatments to prevent the tumor from regrowing. It is my understanding that it depends on what type of tumor it is that determines whether or not it will reoccur. My doctor told me that I had a 50%/50% chance of a regrowth. Not happy about that statistic, but I pray for the best. Pegvisomant keeps my IGF-1 under control.
Take care- Mish

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