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Pituitary Macroadenoma-Operate or Wait?

Posted by mkedave @mkedave, Apr 18, 2024

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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ksavage48 | @ksavage48 | Dec 20, 2024
In reply to @stkarlen "Hi @mkedave! I'm sorry you are going through this. I had a pituitary macroadenoma removed last..." + (show)
@stkarlen

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!

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So encouraging, my pituitary adenoma doubled in size within a 13 year period, have had intermittent headaches for years and my vision is deteriorating. Finally have my first consultation at Mayo in January. Local neurosurgeon has indicated surgery is recommended.

REPLY
susanmaria | @susanmaria | Feb 2 7:53pm

Have the surgery. Your eyesight and brain is at risk. Make sure the local surgeon has experience. Otherwise, Would not let him do the surgery if he has not done plenty of pituitary surgery. Husband is treated at the Rochester, NY pituitary clinic at Strong Hospital *. He finds them (endocrinogist/neurologist) experienced, thorough, and compassionate. Also make sure you follow with an endocrinologist right after the surgery. You are in the hands of God. My husband and I will pray for you.

The Pituitary Clinic at the University of Rochester Medical Center. Ismat Shaffoq, M.D., Assistant Professor of Medicine. Dr. Vates/Neurologist Sincerely, Susan M. Smith

REPLY
susanmaria | @susanmaria | Feb 2 8:08pm

If you have low T, it might be male menopause. Also
it might be that the adenoma is pressing on the part of the pituitary that makes testosterone (yes, the pituitary gland does produce some testosterone). My husband' growth hormone was almost "0" when he was diagnosed and his testosterone very low/below normal range. Make sure All of your hormones including pituitary hormones and thyroid hormones are checked out..

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