Acromegaly

When I was 50 years old, I went to a gastroenterologist for my first colonoscopy. That's what everyone says, get your first colonoscopy when 50 for a baseline. There is no colon cancer in the family and I had no need to be concerned about any test results. I also went to a doctor who I knew his family. I felt I was in very good hands.

During the initial visit to introduce myself and get his physical, he asked me some pertinent questions. Can you wear your rings? No, I must be getting fat. Then, he asked me what about your shoe size? I said, you know, my feet are growing. I used to wear a size 7 1/2 and now I wear a 10. Then, he asked, what about your face? I said, you know, when I look in the mirror, my face is changing. He did not alarm me on anything, but he did say that he would like to run a few tests. I said sure.

And I made the date for the first colonoscopy. No sweat, done and all was well.

It was quite a while before he called me in for the tests. He explained to me that no one in the town where I came from heard of the tests he was calling for, so he found it at Mayo Clinic and they had to send it.

After I took the tests, he then told me about acromegaly and according to the tests, I tested positive for it. He said my next step was to see an endocrinologist. He said that his wife was one, but there were many more to choose from. I thought, I'll just stick with the family.

And then I went home and looked up the disease on the internet. I FREAKED. I was going to die and my death would be painful and I would look gruesome.

As time went on, this search was a bad thing to do because of the pictures.

Then, I went to the endocrinologist and she wanted to do a MRI. Okay. According to the person who reads the MRI, he said he saw nothing. She told me that she went down to him and said that I tested positive for acromegaly and he needed to look closer. Lo and Behold, he did find a tumor in my pituitary gland.

That is what acromegaly is -- a benign tumor in the pituitary gland that affects your hormone balance. She explained to me that the hormone in the gland steadily drips and that is normal. When you have acromegaly the drip becomes a swish, then drips then swishes again -- and the cycle continues. What acromegaly does (it affects adults) is that if I was a child I would be a giant because the bones are growing upwards. In acromegaly, because the bones are already formed, they grow outward. A person with acromegaly becomes broader, the forehead droops and the teeth widen. It is what Andre the Giant had, and there is some speculation that Abraham Lincoln had it also. It is rare. She also told me that one fourth of the population, when doing an autopsy, have benign brain tumors but acromegaly is very rare.

From here on, everything happened very fast. Al would not let me freak out any longer and my sister, Jackie, even though she lived 1000 miles away came and together the three of us visited the doctor again and started learning about the disease. I needed to have the tumor removed.

I was scared and didn't want it removed. They would not hear of it. It had to be removed.

I called my insurance company and talked to them. I had a PPO at that time and because the insurance company had never heard of acromegaly, and I wanted to go to another state for the operation, I had their approval. Thank you insurance company.

I had a list of 3 doctors that my sister narrowed down for me, and I called them and interviewed them with questions that the doctor wanted me to ask them.
1. How many or these operations do you do a year? (my doctor wanted the operating doctor to do at least 100/per year. The doctor I chose did over 150/year)
2. How many of these operations have you done in your practice? (The doctor I chose did over 1000 of these)
3 What is your success rate? (The doctor I chose had a 98% success rate.)

There were three of us that were being operated on that day. The man had already gone blind and had diabetes from the disease. The young girl already had an unsuccessful operation for this condition and this was her second.

Me. I was very, very, very lucky. My tumor was in the small stage, like 9 mm, and 1 more mm would put it to the next stage, where it is harder to control the disease.

Before I left the hospital, the man could see and his diabetes was no longer. I don't know about the girl, but I heard she was good, and that someday she would be able to have children.

After the operation and I was back home, I could wear my rings, my shoe size went to an 8 wide, and with a bit of time, my face took on its original shape. The only thing that was permanent happened a few years earlier when my upper teeth were pulled because they started to widen and became too loose. Another sign of the disease. By me telling my dentist about this, he has been able to refer another person to an endocrinologist who was also diagnosed with the same disease.

Today, after 17 years, I am good. The disease did give me arthitis (which led to both of my hips being replaced) and sleep apnea and I never had a menopause, but I am good. I take my blood tests once a year. Check my skin on a daily basis (with acromegaly, you can pull your skin on your hand far from its structure). Freak out if I get a headache. And I thank God everyday that I am okay. That today I can live my dream of writing and traveling and doing my crafts.

So, for me, it is very important to know as much as I can about health. I have a lot more living to do, and I want to do it well.

Once again, if you have any question or want some research on a health issue, let me know. I will get you started on your journey of learning more.

Until tomorrow....have a great day!