When “This is Stupid” Became My Acromegaly Mantra

Rob is a pretty incredible guy. He is a grade A techie and he is a family man. Rob is living with Acromegaly, a rare disease which is caused by a very overworked pituitary gland, and excessive levels of growth hormone which can lead to progressive enlargement of hands, feet, and face. Acromegaly, like most rare diseases, is a big deal that’s often misdiagnosed. 

If you haven’t already met Rob, he was first introduced in Acromegaly, Goliath and the Book that Inspired Me. He has a lot of future posts soon to come!

Rob, is retired military and currently works as an IT specialist for the Navy. His Acromegaly was diagnosed early enough to be treated by the first line treatment, surgery. We’ve helped Rob put to paper and the big screen his story and we’ve enjoyed the whole process.

Let’s give it up for Rob!

20 years in the US Navy’s Submarine Service has challenged me in all parts of my life. I once spent almost 5 days straight awake — it sucked. I knew the mission being accomplished was important, and it was all hands on deck. I was part of a team accomplishing a goal. It was TOUGH, but we pulled together and got it done.

Acromegaly is another thing altogether. Its insidious creep into my life was so slow, you don’t know what’s up until the doctor finally tells you what you have.


Wow, so what’s that?

… that was my reaction. The reaction from most medical professionals I saw, was

“You don’t look like you have Acromegaly.” 

True, I didn’t show any of the classic Acromegaly signs. No jutting chin, prominent forehead, enlarged feet or hands. All I had were the signs which crept up on me over the last few years…

It all started when I was experiencing these severe headaches along my left temple area.

They wrapped around my head and behind me left eye. While not totally debilitating, it made my workdays short, and family fun days non-existent. I began to feel like I was disappointing my family- my wife and two beautiful and intelligent daughters. I hated that feeling. Come January of 2014, I had simply had enough. I went to see the doctor and he told me I had a sinus infection. I was diagnosed with Sinusitis about 6 times over a 20 month period. 

What in the hell is going on?

The pain is always in the same spot. I had to get a crown on one of my upper left molars (#15). It was right in the same area where the headache pain would start to originate. Back and forth to the dentist I went for well over a year alongside my visits to my primary care physician. The dentist kept telling me to take Mucinex – if it got better it was sinuses. If not, it was tooth problems. I really thought the dentist was an idiot at the time. I actually walked out of the office once. I had had a migraine for like a week straight, and I was past the middle of the rope by then. We had some words…

“This is stupid!” was becoming my mantra.

I felt awful about getting upset with my dentist. I apologized. I felt awful about getting upset with all of my HCPs but, the last thing I wanted to hear was that it was just my sinuses because I knew it wasn’t. There was something wrong. Referred to an Endodontist who eventually performed three root canals on two teeth (#14 and #15) where my headache pain was. The whole ordeal was a hassle. I had a cracked tooth, had it extracted. Extracted both molars completely and to sum it up dry socket happened during the “healing” process. I sacrificed 2 teeth to the pain gods.

Guess what? Mass is medical-speak for tumor!

Let me back up… I had read online about Trigeminal Neuralgia– chronic, neuropathic pain that affects the 5th cranial and most distributed nerve in the human head. I self diagnosed myself and then made an appointment with my primary doctor. I was referred to a neurologist. The MRI read “Mass 1.2cm x 1.6cm on the Pituitary Gland”. 

Finally, the stars were aligning.  I was able to see an endocrinologist that week. She ordered the standard 12-tube blood and 2-liter urine sample collection for all the hormones. My GH came back normal, but my IGF-1 was 838. In September of 2015, my endocrinologist said,

You have Acromegaly.

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