Pituitary Macroadenoma-Operate or Wait?

Posted by mkedave @mkedave, Apr 18 6:12pm

I'm in my early 50s and have a pituitary macroadenoma that was found 5 years ago. It was at 12mm then, and is now 17mm and abutting the optic chiasm. I have no physical symptoms and no hormonal issues other than low "T". Surgeon says it's up to me as to if/when it gets removed. I have concerns about having it done (recovery, lingering side effects, possibly unnecessary surgery) and concerns about not having it done (inevitable physical symptoms if it continues to grow, possibly losing health insurance before surgery becomes more necessary) If anyone has any thoughts or experience to share I would really appreciate it!

I also have an untreated superior semicircular canal dehiscense that gives me some occasional visual symptoms, so that adds to the complexity.

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Colleen Young, Connect Director | @colleenyoung | 5 days ago

Hi @mkedave, I'm tagging a few members like @stkarlen @tobyisaacs @drs22 @astaingegerdm, who have experiences with pituitary macroadenoma and may be able to add some thoughts to your post.

You are asking good questions. Concerns about not having surgery might be best answered by your surgeon. Have you thought about talking to a social worker about how to navigate the possible insurance implications?

Did your surgeon say that the tumor will continue to impact your eyesight?

mkedave | @mkedave | 4 days ago

Thanks for your reply!
I have good health insurance currently, I'm just concerned about my insurance changing to something less comprehensive if I have to change jobs.

My surgeon says it may continue to grow, and it may not. I understand there is no way to know. I am hoping to get some input from people who have personal experience and have thoughts on the pros/cons of having the surgery. The neuro ophthalmologist says the tumor is just touching the optic nerve, but tests continue to show no visual impairment. She says that if it continues to grow, that visual impact is inevitable, albeit slow. Surgeon says the same.