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

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UlrikeCT
UlrikeCT
Hello everybody!
Thank you so much for the hugs, information about CFS leaks and face changes. I am so glad I found this group.
My neuro surgeon told me that he will not be able to remove the whole tumor, he calls it debulking. I did find a website"Skullbase Institute" in Los Angeles. I talked to them on the phone, they are saying they could remove the whole tumor, However they will not bill Medicare or my 2nd insurance, I would have to pay the whole amount. They were so vague about the cost. I decided to do the surgery locally and I will worry about what's left of the tumor later.
Many hugs, you are a great bunch of people!
UlrikeCT
PapillonRoseBleue
PapillonRoseBleue
Something seems fishy about the discrepancy between the 2 places and the refusal to take your insurances. It makes my antennae twitch all over the place - as if they don't want to have to deal with insurance companies and have to keep things within limits that are considered acceptable by them or some such thing. I may be off base, but I respect your decision, and each person's for that matter. I personallly believe it is of the utmost importance to have the most highly skilled and experienced surgeon possible. If you have confidence in your surgeon you have a lot going for you from the outset. I had the same situation, where I was told up front that there would be remnants because part of my tumor was wrapped around the carotid artery. Something I read recently on a pharmaceutical site claims that only 50% of surgeries result in a complete "cure", so I guess it is fairly common for many of us to have to deal with those remnants. In any case, the surgery still made very dramatic improvements to my life -
my facial features,
the way I feel,
my headaches ( although they did NOT disappear as I had hoped and are controlled very well now with migraine medications), sleep apnea (CPAP setting has been reduced & I am still not very compliant following all those months of being told not to use the machine because of the danger after the sugery), weight reduction with NO effort,
diabetes (not really active - A1C's are normal now),
blood pressure (medication was reduced - but now that I"m on Sandostatin it seems a bit more touchy again)
There's probably more, but I'm going to stop now and get back to my grandchildren ;-)

Seems like a good choice Ulrike. Good luck