Rob’s Acromegaly Diagnosis

In the video above, PW Contributor Rob tells us about working to get an acromegay diagnosis. As he describes:

Acromegaly, unfortunately, a lot of times doesn’t get diagnosed until the bitter end so you don’t know what you’ve been through until a doctor tells you “hey you’ve got it” which is what my endocrinologist did. I look back and I’m not sure how long I’ve had this.

I retired out of the navy in 2000, it’s possible that I had this all the way back into 2000 looking back at some of the symptoms I’ve had over time. In 2005 I was diagnosed with dilated cardiomyopathy, and I almost died as a result of it. Dilated cardiomyopathy is something you can get from that as a result of the growth hormone– it can cause the cardiac muscles to grow excessively which is what dilated cardiomyopathy does.

About two years ago in 2014, I started getting very severe headaches in my left area over in my sinuses and after repeated trips to the doctors, diagnoses of sinus infections, antibiotics, a suspected diagnosis of Trigeminal neuralgia, and a referral to a neurologist in August of 2015, the neurologist said “Okay well lets send you for an MRI, a brain MRI. The brain MRI was done at the naval hospital and because I had a civilian neurologist I had to go pick up the results.

Well when I picked up the results I got to read it and the results said “mass on the pituitary gland” so I know what a mess means. Mass means tumor on the pituitary gland.

So I got to sit there and study that for a week without the benefit of talking to a doctor. So I’m one of those kinds of guys who always assumes the worst. So I went to talk to him and he’s like “Oh that’s exactly what it is”. I consider myself extremely lucky in this situation. I never developed the classic acromegaly symptoms. The only thing I really had was my jaw had grown out a little bit and I think that I did have a little bit of growth right up in here, I was able to immediately get into an endocrinologist, literally within about 3 days.

The endocrinologist was able to order the blood work and about three or four days later, when the results came back, I got right back into her and she said based on my IGF1 which is about 900, she said “Hey, you have acromegaly.”

About two weeks later I had a referral to Portsmouth naval hospital to the neurosurgeon and he was like “Yeah this is surgery” and my endocrinologist was [all about] surgery. The general rule of thumb in the medical community for acromegaly is [that surgery is] the first line of defense. The first line of attack for acromegaly is pituitary surgery on the pituitary gland to remove the tumor.

I was able to get in and have the surgery to remove the tumor within about three-and-a-half-months of my initial acromegaly diagnosis, again I considered myself extremely fortunate at that time to have had that done.

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