Looking for others with Pituitary Adenoma

Hi...I can't believe that I am not alone in my suffering. I need help finding a doctor who knows how to deal with the issues caused by my pituitary adenoma. Diagnosed w 7mm adenoma in 2012 and suffering extreme headaches, syncope , weight gain and dizziness. Severe problems with eyesight. My memory and ability to find words is terrible. Please give suggestions for someone who can help me as the doctors here don't know what to do or they tell me that pituitary adenoma have no symptoms. I know my body and I know what I have gone through. Trigemiinal neuralgia and severe one sided headaches lasting 3 to 5 days. PLEASE HELP...Thamick

The migraine passed, thank you. I realized I got viral meningitis again (fourth time) when I got my IVIG infusion on Saturday. That's why the migraine, stiff neck, fever, nausea, chills, etc. I have to get IVIG every three weeks because my immune system doesn't work anymore. I really am in pretty bad shape. But I went off sugar five years ago and I feel like I'm at least half my age since I did that. As sick as I am - I still feel like I'm in my 30s since ditching sugar.

How is he doing with cushings? I was recently diagnosed with cushings

Yes. Mayo performed pss. Now having ipss march 13

Hi, @parrotqueen - how is your migraine today?

The first time I had the surgery, they couldn't get all of my tumor out because it was on the optic nerve (2011). But they said they had a better procedure in 2018, and they don't think it will grow back. I didn't have headaches after surgery in 2011, but I DID have headaches after surgery in 2018. The headaches continued for a few months. I went to a different neurologist for those headaches and we got them stopped. Thank you for refreshing my memory.

So Ironic that I woke up with a migraine today! First one in a year.

My daughter in-law has had two surgeries at Mayo in Rochester the last two years for pituitary tumor/acromegaly. Both surgeries were done through the nose. Due to the tumor being extremely close to an artery, the tumor could not be completely removed during the first surgery. Radiation was going to be considered for remainder of tumor, however tumor grew back within six months, so surgery had to be repeated. She received radiation about three months after the second surgery in 2019 and to this date is doing well and tumor has not grown back. Recovery from both surgeries was without any major difficulties, other than headache, that I believe is common and to be expected.

I've had two surgeries to remove my pituitary tumor or adenoma. I had it again two years ago exactly this week! They did transphenoidal surgery - going through my nose - so no shaved head. I woke up with a horrible headache which they keep medicated right after surgery. Once you stabilize you go to your room. My pain was well controlled. I went home on the second day following surgery; however, the first time they did the surgery, I was hospitalized for a week. The first time they did the surgery, I had a balloon inside my head holding something in place to be sure there was no bleeding - but this has changed in the last ten years. They did take a bit of fat from my belly to rebuild the area where they went through for the surgery. That hurt more than anything else! I just resumed all my usual activities - I was out working in the garden within a couple days. It is an easy recovery. I felt a little spacy for a few days - but it wasn't so bad I couldn't do all the things I usually do. The following month I had back surgery and the month after that, I had a hip replacement - it was a busy year. I suppose it was more frightening the first time - they have really streamlined the surgery now. It made a huge improvement in my life. I was not doing well in life prior to the surgery - mostly because of thyroid, adrenal, and Human Growth Hormone insufficiencies. There is a very good book out that talks about the psychological aspects of these adenomas - called "The Hormone Factor in Mental Health: Bridging The Mind-Body Gap," edited by Linda M. Rio. I highly recommend this book. I had no idea all the ways these pituitary adenomas affect the way we are. The surgeon told me they got more of the tumor on the second try. They do not think it will grow back, and I get an MRI with and without contrast every other year. I live alone with some parrots and I did not require any help from anyone after surgery. I took excellent care of my birds and myself and nobody helped me.

Welcome to Connect @beckymattair.
I moved your message to this discussion (Looking for others with Pituitary Adenoma) where we have several members talking about this, and I thought it would be beneficial for you to be introduced them. Simply click VIEW & REPLY in your email notification to find your post.

I’m tagging several Connect members who have talked about their experience with pituitary tumors, and/or acromegaly–please meet @cherriann @nancye3 @robinlynn @dmedina71 @lindalongberry @sandysdoves @upartist @remsen and @ladydove417

What questions or concerns do you have, @beckymattair? How long did it take to recover from the surgery?

<p>Is anyone in this group who had a pituitary tumor partially removed and had Gama knife radiation 3 months later?</p>