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Epilepsy Blog Relay: A Pituitary tumor and seizures leads to a life in search of answers

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Sylvia’s Story

In March 2013, I was working full-time as an Industrial Engineer, taking care of my mother, who lived with me and had Congestive Heart Failure from chemotherapy and Dementia. It was around 7PM and I was completing the last chapter of my doctoral dissertation. I went from my home office to the kitchen for a bottle of water. That was the last thing I remember from that evening.

I woke up 3 days later, in the hospital, with medical professionals and loved ones surrounding me. I had no comprehension of what happened, or why I was in the hospital. I was told that I was transported to the hospital having seizures. A few hours later I went into a diabetic coma with a glucose level of 927 (a normal level is around 100). Now remember, I was taking care of my mother with dementia. She was wearing an alert button on her wrist and when she discovered me on the kitchen floor, she pressed her button. When the EMTs arrived, mom would not open the door because she didn’t realize she had pressed her emergency button. The EMTs called the county police and when they came, she opened the door. When asked who I was, my mother could not remember my name and as a result, I was taken to the ER as a “Jane Doe”.

Related: Epilepsy Blog Relay™: Using Tech to Improve life with Epilepsy

The medical professionals at the hospital were confused with the high blood glucose levels. The EMTs didn’t find any diabetic IDs in the house or on my person. Once I came out of the diabetic coma, I was asked why I did not take my insulin or check my blood glucose levels. I told the doctors and nurses that I was not diabetic and that I did not know how to check my glucose levels. During this time, the MRIs, CT Scans, X-rays results were back and being analyzed. On the fifth day of my hospitalization, an Endocrinologist entered my hospital room and asked me if I knew that I had a pretty good size tumor (Adenoma) on my Pituitary Gland? I answered no and asked him, where is the Pituitary Gland. The doctor told me that this was a small gland in the center of the head that controls a lot of very important functions. Well, all of this information was a surprise to me and began my epilepsy journey.

After further consultations and examinations, it was determined that the tumor on my pituitary gland had completely stopped my pancreas from working and subsequently there was not insulin being produced. The seizures experienced at home and in the ambulance, were caused by the high blood glucose levels.

I transferred my care to a well-known Pituitary Clinic for further evaluation. I was under the care of a different Endocrinology Specialist. The clinic’s plan was to observe the tumor for a few years to analyze how fast it was growing. The years 2014 – 2016 passed. There were countless MRIs, with and without contrast. Each taking longer than the previous test. In 2017, I was advised that the pituitary tumor was growing and nearing the ocular nerve that controls eye site.

In December 2017, I chose to have the tumor removed. The pituitary gland is located at the bottom of your brain and above the inside of your nose. The surgery was 11 hours. I was scared to death, but was very confident in all of my surgeons.

Today, I still have seizures and they are being caused by something else; the physicians have not found a cause. They are controlled by medication. I wear an Epilepsy device on my arm that makes life a little easier. Because I live alone, I am constantly looking for helpful things to make life safer. I read everything I can about Epilepsy so I have up-to-date information. There is a 3 percent chance of a re-occurrence of the tumor. I am no longer walking around in the fog, but a light mist still exists.

My mother is no longer here, but she gave me life more than once while she was!

Sylvia Palm serves as the Maryland Ambassador for the Danny Did Foundation, a nonprofit focused on issues of safety, technology, SUDEP and other forms of mortality in epilepsy. Learn more at www.dannydid.org.


NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.

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