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.
Hi All,
I just discovered I have acromegaly. I went to the ER with a concussion and they discovered a pituitary tumor. My IGF-1 levels were found to be high and it correlates with a number of changes. My nose, brow bone and chin have definitely increased over the years along with my weight. My poor husband...I am definitely not the woman he first married. However, I am blessed to have a good guy! Looking back, I can't believe none of my doctors caught this sooner. I have hypothyroid, infertility (PCOS) -although I did get pregnant after undergoing 10 fertility procedures, thick and course skin, my feet are now a EE width, carpal tunnel, the list goes on and on! I am going to travel up to Cleveland Clinic to consult with Dr. Weil. Has anyone on here received treatment there? Did you have good results? They seem amazing so far. Everyone has been very helpful and friendly. My biggest worry is that the tumor has invaded my cavernous sinus and appears to be close to the carotid artery. I want to be around for my hubby and kids!
So I'd love to hear from you! Please let me know if I'm heading in the right direction. Also, did you lose some weight and get your face back to normal after your surgery? I hate to be so vain, but it would be nice to get back to my old pre acromegaly self. Also, did you have any surgical complications? Thanks for helping me!
I just discovered I have acromegaly. I went to the ER with a concussion and they discovered a pituitary tumor. My IGF-1 levels were found to be high and it correlates with a number of changes. My nose, brow bone and chin have definitely increased over the years along with my weight. My poor husband...I am definitely not the woman he first married. However, I am blessed to have a good guy! Looking back, I can't believe none of my doctors caught this sooner. I have hypothyroid, infertility (PCOS) -although I did get pregnant after undergoing 10 fertility procedures, thick and course skin, my feet are now a EE width, carpal tunnel, the list goes on and on! I am going to travel up to Cleveland Clinic to consult with Dr. Weil. Has anyone on here received treatment there? Did you have good results? They seem amazing so far. Everyone has been very helpful and friendly. My biggest worry is that the tumor has invaded my cavernous sinus and appears to be close to the carotid artery. I want to be around for my hubby and kids!
So I'd love to hear from you! Please let me know if I'm heading in the right direction. Also, did you lose some weight and get your face back to normal after your surgery? I hate to be so vain, but it would be nice to get back to my old pre acromegaly self. Also, did you have any surgical complications? Thanks for helping me!
You can expect some changes after surgery, but it is probably not realistic to expect to return to a pre-Acro state because the changes to our skeletal system are said to be irreversible. Soft tissue swelling should improve dramatically, though.
The most common and dreaded surgical complication that comes to mind is a cerebrospinal fluid leak. You should be instructed not to bend over, sneeze, blow your nose, use a straw, strain in the bathroom, lift ANYthing and so on in order to help prevent that leak.
Wishing you the very best.
Keep us updated about how things are going for you and take care.
Rose