Determined to Defeat Ependymoma

Name: Steven H.
Type of Cancer: Myxopapillary Ependymoma T12-L2
Diagnosed: Age 46
By: Steven
— Categories: Adult   Spine  


Determined to Defeat Ependymoma

When I was 35, I began training for a triathlon. When I reached a certain point in my training, I started having really bad back spasms. When I met with a doctor, he told me to take a break from training, take Ibuprofen, and apply ice to treat the pain. I also tried chiropractors, massage, acupuncture, physical therapy, rolfing and yoga to help relieve the pain.  I gradually gave up playing basketball, running and any other physical activities that led to back spasms.

I began experiencing new symptoms which worsened over the next several months. A new symptom appeared – lack of balance. I started tripping a lot. My toes on my right foot felt asleep and I had really bad back pain. I began having difficulty urinating in the morning and couldn’t hold it in the afternoon. I could also not hold back gas. With persistence, my doctor finally ordered an MRI. The doctors discovered a tumor inside my spinal cord. He sent me to a neurosurgeon. The surgeon said the back pain was unrelated to the tumor. Since this seemed odd, I searched online for a second opinion and found the best neurosurgeon that I could find.

Recovering From Surgery

Several weeks later, I had surgery to remove the ependymoma tumor, followed by months of physical therapy for a paralyzed right foot and left calf. It was very sobering to go from being an avid athlete to unable to walk for a while.  I was determined to get better. After two years of determination, I was walking normally. Then I started skiing again. Recovery can be very lengthy and challenging, but after seven years, I did my first backpack trip in Tetons (mountains in Wyoming). I learned how amazing your body’s capacity to heal is. Since then, I have backpacked 70 miles and ran a few sprint triathlons. However, I still continue to have some issues with bladder and bowel control.

Through this journey, I’ve found support and information online, especially the Spinal Cord Tumor Association.  It was great to discover a network of people who were recovering from surgery as well as those newly diagnosed with questions.  I have attended a few of their meetings and was able to meet people I knew only online. I was amazed how some seemed perfectly fine but had chronic pain or symptoms like myself. There were others who were seriously disabled by their tumor, the surgery, or both. Recovering from surgery, physical therapy and medications for chronic pain are common issues.

It is so important to get an accurate diagnosis in time and find a neurosurgeon with the skill and experience necessary to perform this type of surgery.

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