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.
Even before my diagnosis, I\'ve been interested in getting a nose reduction. In fact, in a round about way, that was how the sleep apnea apparatus specialist\'s assistant suggested I get checked for this disease. Initially, the ENT/rhinoplastic surgeon said something like he could charge me a lot of $ to do plastic surgery, but he would do the right thing and hold the insurance/and my medical group liable for not making an earlier diagnosis.
Finally, after getting all the additional testing and referrals he instructed done, now he\'s saying "disfigurement" won\'t fly with the insurance co. And, more disconcerting: now he\'s also saying that the radio frequency technique of tongue reduction (that I researched to be less invasive, painful and risky) is ineffective, calssical tongue reduction requires a trach, and he advises against getting a tongue reduction- since his interpretation is that the jaw got bigger and the tongue followed (vs. cvice versa).
The frustrating thing is that one of the referrals he required indicated that my amlocclusion (under bite and cross bite) could be repaired with braces (and temporary implant) alone- provided the tongue is reduced! In fact, the oral surgeon also wanted to reduce the tongue (but has no experience in the technique). Have any of you had a tongue reduction? Have you been told that your teeth are getting flattened due to malocclusion?
I am very confused as to which way to go on this. I no longer trust this MD (who,by the way had moved into a very nice office and maybe over his head financially now). I haven\'t even been emailed the estimate for the 4.5 hour surgery, and I get the distinct impression from him that the part of my nose most disturbing to me is not going to changed at all.
For women, appearance is somewhat more important. I would like my nose back. My teeth are likewise very important nad functional. I would appreciate any information regarding these issues.
Finally, after getting all the additional testing and referrals he instructed done, now he\'s saying "disfigurement" won\'t fly with the insurance co. And, more disconcerting: now he\'s also saying that the radio frequency technique of tongue reduction (that I researched to be less invasive, painful and risky) is ineffective, calssical tongue reduction requires a trach, and he advises against getting a tongue reduction- since his interpretation is that the jaw got bigger and the tongue followed (vs. cvice versa).
The frustrating thing is that one of the referrals he required indicated that my amlocclusion (under bite and cross bite) could be repaired with braces (and temporary implant) alone- provided the tongue is reduced! In fact, the oral surgeon also wanted to reduce the tongue (but has no experience in the technique). Have any of you had a tongue reduction? Have you been told that your teeth are getting flattened due to malocclusion?
I am very confused as to which way to go on this. I no longer trust this MD (who,by the way had moved into a very nice office and maybe over his head financially now). I haven\'t even been emailed the estimate for the 4.5 hour surgery, and I get the distinct impression from him that the part of my nose most disturbing to me is not going to changed at all.
For women, appearance is somewhat more important. I would like my nose back. My teeth are likewise very important nad functional. I would appreciate any information regarding these issues.
Keeping my fingers crossed for good news from you. Thanks again.
I\'m finding that a lot of MDs are not only arrogant but lacking integrity. One oral surgeon was completely misleading- impled various expertise, gave inaccurate estimates of time I\'d be in braces, etc.
Well, true to form, my ring size and shoe sife each went up by 2 sizes. ALong with this, ALong with these areas, my face became coarse, I gained weight, and fairly recently I was told that my tongue is big, After my blood wrok stabilized, I lost 20# without trying, and my facial features were thinner. So much so, that the excess bones/cartiledge in my nose is now sticking out, close to the bridge. That\'s actually the least concerting to me. More so, my nostrils have gotten huge and the nose negatively affect my ability to smile- it appears to be dropping into my mouth.
But everything is relative- yesterday I saw a person who had his tongue swollen from a medicattion allergy- he needed oxygene and water.
Thank you.