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Brain/Pituitary Tumors Community
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Avatar universal

acromegaly

My tumor is 1.5 x 1.0 x 1.1  surgery will be in a few weeks.  Anyone have this size tumor that has not grown into the eye area?  Mine is abutting the carotid artery. What was your result?  Did the symptoms go away?  Were they able to remove it completely.  I have no one to talk to that has experienced this, any information would be greatly appreciated.
I am having surgery at a well known pituitary center.
3 Responses
Avatar universal
COMMUNITY LEADER
Not all tumors grow up around the optic nerve. Some grow down into the cavernous sinus, and some like yours grow near or even wrap around the artery.

There are medications for acromegaly to reduce the size of the tumor. Have they tried that as well?

Depending on your tumor and your surgeon, they may or may not be able to remove all of the tumor. It may then fall to the medication to keep it under control or to have some radiation. You will always need monitoring.

Some symptoms will go, but from the few GH people I met, some do persist and any bony or body changes don't resolve.
Avatar universal
Sounds bad no matter which way I go
Avatar universal
COMMUNITY LEADER
No.
I had surgery 10 years ago. I know tons of people. It can vary. I am probably in the worst 2% so I am an example of the worst of the worst, not the typical.

The best of the best typically go on with life and don't post anywhere, so what you see on the internet is skewed and it can make  you think that it is all awful, but it truly is not.

There is some work. You do need to have a surgical recovery - about 1 month. Doc should give you instructions and they can vary on sleep position and usage of saline (yes vs no) and don't bend over, use straws etc.

Concurrently, you have to balance hormones and that can vary based on your surgery and tumor. You may only need thyroid after, or you may need two or more. Either way, keep an eye on it and monitor.

I lost all but one. I still manage to do things - but I also have a lot of other things wrong with me.
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