Amy’s Acromegaly Story: Part 1

My name is Amy, and I’m a 37 year old single mom of two beautiful girls, ages 8 and 13.  I work full time as a business analyst for a major agriculture business in Central Illinois. I was diagnosed with Acromegaly in 2007.

I experienced a lot of complications after the birth of my first daughter in 2004.  Prior to that, I had lived a very healthy 24 years– never had any major medical complications or illnesses. The only medical complaint I ever received was advice to lose a couple of pounds to fit into a normal weight range. My first daughter was born via cesarean section and my roller coaster ride into the medical world was off.

For two years after her birth, I went through countless tests, procedures and doctor visits to determine why I was experiencing so many female related medical problems. I never began menstruating again after her birth and I continued to lactate even though I wasn’t breastfeeding my daughter. My weight had ballooned out of control. My hands and feet had grown several sizes during pregnancy, which I attributed to typical pregnancy side effects, but had never returned post-partum. I was experiencing daily headaches and was alarmed when I almost failed my vision test when renewing my driver’s license. I also spent some time repairing broken and damaged teeth with my dentist. I underwent Gastric Bypass surgery in 2006 in hopes to get my weight gain under control and during pre-operative testing discovered many small lesions in my chest.  At this point I was distraught over the road I was going down with my health, but hadn’t even begun to put all the pieces together in one puzzle. I was hyper focused on my gynecological issues, as I wanted to continue to grow my family.

In 2006, our family moved and I had to restart my medical care with a new round of doctors. First up was OB – I was ready to try for another pregnancy even though it seemed hopeless since my gynecological problems were unresolved. I explained my medical history to this doctor and his initial request was that I get an MRI. Explaining that hormone function was controlled primarily through the pituitary and that we should rule out any pituitary concerns.

That was it, that was the magic decision from the doctor who is now my personal hero. Within a day of the MRI my doctor called me personally and requested that I come in the same day to see a fellow doctor in the hospital who was a neurosurgeon. Red flags were going up immediately, a personal call from a doctor, a same day visit with a neurosurgeon, this can’t be good.

My husband and I walked into that appointment and received the most shocking news of my life. I had a pituitary macro adenoma. A 3.5 cm tumor, invading my cavernous sinuous, wrapped around my carotid artery and impinging on my optic chiasm. I was never a huge fan of any of my science classes in school, but I knew enough to know that this wasn’t good news. This neurosurgeon, my other medical hero, spent a good part of his afternoon talking with me about the diagnosis and asking detailed questions about my medical history. He poured over the details and perked up at the discussion of changes in my weight and physical appearance. He ordered a visual field and lab work and recommended surgery in the very near future, given the pressure of the tumor on the optic chiasm. The visual field confirmed severe deficits in my peripheral vision and the blood work confirmed the neurosurgeon’s suspicions of elevated GH. The level was so high it didn’t even have a number. With a range of 0.0 – 6.0, my result simply stated “>200”.

The doctor explained the diagnosis of Acromegaly, but my whole ability to comprehend anything at this point was so clouded by an internal voice that was just consumed with the words “BRAIN TUMOR” – I never really dwelled on the acromegaly at initial diagnosis.

Despite a deep respect and genuine appreciation for this new medical team, I chose to travel to a larger hospital to seek treatment and surgery from a more experienced group of physicians. I underwent transphenoidal removal of my tumor within the next few weeks and shortly after I received gamma knife radiation. I returned home to recover and wait to see what the outcome of surgery would be.

It was only then that I started to realize that this wasn’t a brain tumor story, it was an acromegaly story. And it wasn’t an event, it was going to be a journey.

About the Author: My name is Amy Beller and I’m a Business Analyst from central Illinois. I’m a proud mom of two amazing daughters and one super pooch. I love cooking, crafting and camping. My girls and my career keep me busy and I wouldn’t trade our over committed life for anything. I’ve lived with Acromegaly for the past 10 years – a roller coaster of symptoms, surgeries, radiation and a range of medication. I work hard to stay on top of my disease and treatments and live the most fulfilling life possible.

 


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