Tuesday, September 30, 2014

"I had a bubble on my brain"

I was walking around yesterday and saw an ad in a bus stop that said, "I had a bubble on my brain and they took it out through my nose. Now I can go back to school."

I've been there! (Taking out "the bubble" through my nose part, at least. I was out of school by then.) So it turns out little Nile's tumor was not quite a pituitary tumor, but the surgery was the same. Can you imagine how tiny and delicate the passageway for the operation must have been.

I sent a photo of the bus stop ad to someone I had met just the day before- I was at my friend's niece's birthday party, and my friend's sister was like, "Hey you and this guy should talk, I think you had the same thing, your pituitary operation?" Turns out he had a pituitary tumor removed just three weeks ago, and wanted to know what the rest of his recovery would be like.  The doctors don't think his tumor was actively secreting any hormones (more test results pending), so he doesn't have acromegaly but we still had that kindred experience of getting diagnosed, facing surgery, surgery, and recovery.  It was strange to recall a time that was almost a whole decade ago! I was such a different person, so much has happened since then, and I hadn't even talked about my experience in detail in a while.  It was great to hear the similarities in our stories (for example we were both diagnosed because of vision symptoms, peripheral vision loss) and it also felt good to represent long-term recovery to him - like, "Yes, you will have a (semi) normal life again! I am proof!" He's my new "Brain Bubble Buddy!"

Monday, September 29, 2014

Pre-surgery: So Calm!

I'm super impressed by how this guy manages to be so casual about his diagnosis and scheduled surgery, and I love the way he is spreading awareness of the disease among his friends!

Monday, April 14, 2014

New Blogger: Dicky Moo!

This post has been saved as draft for way too long, I was meaning to post this in June of last year! 

Richard had pituitary surgery in November of 2012, and you can read all about it at dickymoo.com!

If you know of other acromegaly blogs out there, please leave a note in the comments so we can collect them all!

Monday, March 24, 2014


OMG I've been DREAMING of this for so long, and now it actually exists! I've always admired Kevyn Aucoin's philosophy, life, and work, and I knew about his struggle with acromegaly.  Now his company is partnering with Novartis to help women with Acromegaly (and Cushings) to feel better about their appearance, which I know first hand is a big part of dealing with this disease.


The Highlights Project provides tools to those living with Cushing’s disease and acromegaly to help them redefine beauty and change their perspective about the way they look.

Those living with acromegaly often experience physical symptoms that change their outward appearance. Some of the most common symptoms include: enlarged facial features like the forehead and jaw, enlarged hands and feet, coarse skin and excessive sweating. These symptoms can make those with the condition self-conscious. However, there are several ways you can use the art of makeup to help you take back control of your appearance and feel beautiful!  Watch this video to see how Shannon, an acromegaly patient, learns to use some everyday makeup tips to boost her confidence! Afterwards, try these tips out yourself and you will be well on your way to looking and feeling your best!"