What an Acromegaly Diagnosis Meant for Rob

So my endocrinologist calls me and tells me I have acromegaly. First thing is she calls me and tells me I have this disease that I’ve never heard about before.

So in my goal to reach the end of the internet, I start searching for it and reading it and there’s information on it but there’s not a lot. You’ve got to search, you’ve got to look and you find out its one of the most under-diagnosed diseases out there. It’s almost never diagnosed until the bitter end of everything that happens to it.

And then I start looking through symptoms and I start checking the symptoms, and I’m going “Well I have that, joint pain, aches, I have that.” And it’s things that have crept up over the years that you don’t notice, like every joint in my body hurts, every muscle in body aches, headaches, no energy. And because it had whacked all of my endocrine system out, my thyroid levels were low.

I don’t know if you’ve ever seen the movie The Shining, but there’s a scene in it where they’re out in a snowstorm and there’s a maze. And they go in this maze, they’re in a blizzard and they’re lost, and it had gotten so bad to the point where you don’t even realize how bad things are getting. A complete and almost total loss of libido, nothing, testosterone is off the bottom of the charts.

My endocrinologist got me on some synthroid which helped tremendously with everything else. I’m waiting to get my blood work done to find out post-surgery now, to see what’s come up but after the surgery. I feel so much better.

The neurosurgeon said that when they went in there they were able to get my tumor out and it looks like a big softball. They were going go in there with suction and get it all out. He said it was textbook, the surgery took exactly four hours, so it took less time than what he had expected it was going to take. He had predicated five to six hours, I was out in exactly four hours, and it’s brain surgery! I had it done on Friday and I was out on Monday which to me is absolutely amazing. You know, you go through the sinuses. The worst part of the whole thing was the packing that was in my sinuses that I had to have in there for three days because you can’t breathe. You’ve got to mouth breathe, it’s all messed up.

So, back to the endocrinologist telling me I have this unpronounceable disease at first. So you’re trying to figure out what’s going on, your researching, and it was a relief. You finally find out the name of something you have and you can relate all of these symptoms that you’ve had over the years. You can look at that and you can say “Okay, well I’m not aging prematurely, I’m really not 85 years old, there’s a reason why I feel like this. I can now talk to my endocrinologist, I can now have a plan, I can now get with a  neurosurgeon, I can now maybe get meds, I can now get the synthroid, I can now start doing things that can hopefully make a change.” Which did make a change in my health, so short-term I was able to get the synthroid which made leaps and bounds of changes in parts of it, and then the surgery made other changes.

So the short answer is the diagnosis was a relief to find out exactly what I had and it helped me working with my doctors to formulate a plan for the way ahead.


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