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Brain Tumor Survivor with MS

Published on April 15, 2018 in Share Your Story

Four brain tumors. That’s how many I suffered through. The first began growing in 1984. My symptoms were excruciating migraines several times a month. Doctors checked but had no answers. Then in 1988, a second tumor began growing and the migraines increased. Doctors checked and told me I was doing too much. They said I was working too hard and trying to raise my young son and be a wife. Finally, one doctor bucked the chain and sent me for my first CT scan. At the same time, I left town for two weeks of training. You know it’s bad when the doctors’ office tracks you down and sets and appointment for Saturday morning, the day after your return. The diagnosis was just that, bad. There were two “lesions” as they called them, two brain tumors.

The first was removed during an 8+ hour surgery. I could immediately tell the difference. It’s funny how the mind works. After finally being rid of most of the pain, my mind said, “That’s It! We’re well! No need to do this (surgery) again.” Thanks to a family that pushed me and would not let me be complacent, I went ahead with the second surgery. Finally, no more migraines.

I was thrilled until about 4 years later, when the migraines returned. I immediately visited the doctor with “my prognosis.” I remember him smiling and saying that it was rare to have 2 brain tumors in a person as young as I was at the time and surely there could not be a third. To humor me, he agreed to do the testing. With awe and amazement, he told me that the tumor had returned. Following 3rd surgery in which the benign tumor was removed, I was left with a permanent blind spot. Time passed with no migraines until 4 years later when one returned. I was devastated.

It seemed no one could tell me the cause, and no one could prevent them from returning. This time, my case garnered a team of leading neurosurgeons, who again recommended surgically removing the benign tumor. By this time, I had learned of another method, which involved killing the tumor using radiation. Refusing the advice of the neurosurgeons. I teamed up with a doctor who was willing to radiate the tumor. I remember checking to the hospital at 7:30 am.

A halo was placed on my head (dents in my head from this still remain!) and a picture was taken, which pinpointed the tumor. That afternoon, I was rolled into a large radiation room. The halo was screwed to the table and I was strapped in, tightly. I was told not to move, as if I could, as I watched the doctors and nurses all retreat far away to a glass room. I remember thinking, what if there is a fire. I bet they all run out and leave me here. In my mind I worked out the details as to how to untie the straps and unscrew my halo from the table. By the time I had worked out the details, the radiation treatment was over, and the staff returned to release me.

Following an hour wait to make sure I was ok, I was sent home by 4:30 pm the same day. I thought “My how science has changed from that first tumor where I spent 8 hours in surgery and a week in the hospital.” Relief with some trepidation followed, thinking “what happens in 4 years?” Sure enough, pain returned 4 years later. This time it was a little different. Instead of migraines, I had a pins and needles and sharp pain in my hands and arms. A laminectomy would reveal that what was originally thought to be a tumor on the spine, was Multiple Sclerosis. So, treatment began for that. I was still wary of my 4-year curse.

For the past 20 years I had faced a grave medical condition every 4 years. Fortunately for me (?), the diagnosis of MS ended the curse. And while I live with this debilitating disease, it does not own me. I am here to say that MULTIPLE tumors can be overcome. It’s been 19 years since that diagnosis of MS, 19 years free from a major medical incident. While there may be another something, somewhere in my future, I’ll face it the same way. I won’t let it take away my joy.

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