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Pituitary Macroadenoma-Operate or Wait?
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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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.
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1 ReactionHave 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
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1 ReactionIf 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..
Just found out have pituitary macroadenoma from incidental head ct confirmed by mri trying to navigate getting with right team not symptomatic but don’t want to wait for problems still pending labwork
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3 ReactionsWelcome to mayo clinic connect. what does your gut tell you? have you checked out sites with your condition and what is your body telling you, hi i am randy and just curious as to like some of my issues not being found when they should have been caught and leading up to surgery because symptoms were missed. this site gives you patients from all over the globe, thousands of voices. pretty sure before the day is done you will have numerous messages to read as those who have been in your shoes step forward with their stories. i lean on my religious beliefs and know what my prayers can accomplish, sending you a prayer for the answers you seek ======= sent and have a blessed day. Hope you have an answer soon. personally i will avoid surgery until i have no avenues left to explore then make the call.
@jack89, if you would like to get a second opinion from Mayo Clinic experts, you can submit a request here: https://mayocl.in/1mtmR63
How are you doing? Did you learn anything more about your diagnosis and plan going forward?
Thank you i had visual field test normal now will see neuroendocrinologist soon so will see if they think surgery or follow up with mri frequently