Pituitary Macroadenoma-Operate or Wait?

Hi @mkedave! I'm sorry you are going through this. I had a pituitary macroadenoma removed last April that was producing excessive growth hormone. I had horrible headaches and muscle pain in my head and neck for as long as I can remember. My surgeon said it was most likely there for at least 10 years. I'm just so glad we finally found the cause of all the pain. My tumor was partially wrapped around the carodid artery so they were able to remove about 95% of it which should likely keep it in remission and keep my growth hormone levels stable. Having the surgery was the best decision I've ever made. It gave me my life back quite honestly! Your situation may seem less urgent but the tumor will most likely keep growing and eventually cause issues with your optic nerve....and then it becomes harder for the surgeons to navigate and operate. I'm also not sure how your other condition factors into things. I can speak to the surgery. For me, I was in and out of the hospital in 24 hours in Rochester. Surgery was 7 am and I was discharged the following morning. I had a Neuro and ENT surgeon as well as anesthesia doc operating and an amazing team of nurses supporting them. They usually do the surgery endoscopically (through the nose) and it's a little uncomfortable for about a week after (your nose is healing, so you'll feel congested until you get back to see the ENT and they clean your nose out). It just feels like a cold where you have to breath through your mouth. It took about 6 months I think to regain my taste/smell fully but everything came back and is normal now. I don't have any other long term side effects from surgery. I will need to continue going in for follow up MRI's annually for a while. Don't be afraid of the surgery! I was hesitant at first too but Mayo surgeons are amazing. I would definitely let mayo check into your insurance coverage for you. They will provide you an estimate for your procedure before hand which is SUPER helpful. Let me know if you have any other more specific questions. Happy to continue the conversation and I'll be praying that you find the best pathway forward!