City/State: Toronto, Canada
Type: Ependymoma, C1 – C2
Hospital: Toronto Western
Neurosurgeon: Dr. Charles Tator
Surgery: January 28th, 2002
Radiation/ Chemo: No
In the summer of 2001 I fell head over heals from my kid’s scooter and landed on the left side of my neck and shoulder. I laughed at what a spas I was, but boy did it hurt. My neck hurt a lot and I started getting headaches intermittently. My neck always felt like I needed to stretch it. The headaches seemed to have gotten worse with time, and I usually had one upon waking and they increased with any physical activity. When I had my yearly physical in October of that year I asked my GP to arrange a neck X-ray for me. Needless to say, the X-Ray showed nothing, and I was told to do what ever I was doing (ie.chiropractors, massage therapy, acupuncture ) to help myself. Everyone seemed to tell me the same thing. Headaches and neck pain are normal signs of stress. Well I never did feel good about that diagnoses. I had a gut feeling something was wrong with me but no one would believe me. I told my friend Larry (who is the chief radiologist at a large Toronto hospital) that I thought I had a brain tumor. He told me that the chances of that were slim and none but to ease my mind he scheduled an MRI the next day. Well much to his surprise as well, the MRI of my head showed a tumor sitting at the tip of my cervical spine. C1-C2 to be exact.
I thought my world had come to an end at that very second because no one really knew what would come next. Could they get it? Was it malignant? Was it a secondary tumor originating somewhere else? The next few weeks were like a dream. 3 more MRI’s, one MRA, 1 Angiogram of my head, X-Rays, Mammograms, needles, Dr’s, Stress AAAHHHH! I was able to get an appointment with the best Neurosurgeon in the country. Dr. Charles Tator. He agreed to do my surgery Jan 28th and gave me a small chance of severe debilitations. I left his office feeling calm and strong and ready to get this thing out and move on with my life. Those next few weeks my case was reviewed at all of the neuroradiology rounds at the 3 top teaching hospitals in Toronto. As it turned out, after many radiologists reviewed my case they downgraded my prognosis to 50% severe debilitations because the tumor was so large for a very small spot and it sat closer to the front of my neck.
I just thought positive thoughts and got a lot of coaching from my friends at the SCT site. I awoke after the 5 hour surgery (It was planned for 6-8 hours) without a breathing tube, and felt a lot of people poking me and asking “sharp or dull pain”? I knew things had gone better than planned when I would feel the pin prick on my feet, legs and arms. My surgeon nodded yes when my mother asked him if my outcome was a miracle. The tumor was a benign Intramedullary Ependymoma. The best scenario it could be, as there is very little chance for regrowth in Ependymomas. My hospital stay lasted 5 days. 1 in UIC, 1 in step down, and 3 more in a regular room. The pain was not as bad as the nausea. Pain med’s were readily available but regular Tylenol did the trick with an extra shot of Gravol and an Ativan to top things off at night time. I was out of bed on the second day. Walking to and from the washroom was about all I could handle that day. Stairs and halls came on day 3. That was a strange and scary experience. I felt very unsteady and weak. I also was very weepy. Uncontrollable bouts of crying. I couldn’t explain what that was all about. Maybe all the anxiety and emotions that I kept bottled up were coming out full force. In any case, that passed about 9 days post op.
After leaving the hospital I realized that I had to get on with my new life and once again go with my gut. I was discharged with no further therapy or help. The OT’s and the PT’s had no further plans for me. After speaking with a few people on the SCT board I realized that physical therapy was imperative to gaining back my strength and mobility. I was left with numbness from neck to toe, loss of strength (more so on the right side), loss of proprioception and balance and an overall fear of getting outside of my tiny world at home. I felt very disconnected from my own body. I knew my legs were walking but I couldn’t really feel them doing it. I felt like I was in a very heavy spacesuit and I had tight bands around my feet holding them onto my legs. I was told I would end up with numbness, but to actually feel it was completely different to what I thought it would feel like. I did PT 3 times a week for a month and gained most of my strength back, and all of my balance and proprioception. More importantly for me, I gained back the confidence to live again. I drove my car after a couple of weeks. I couldn’t quite feel the pedals under my feet, but I knew I could drive safely. I tried things that I could do before, to find out I could still do them, just differently. I am 4 months post op now, and I try to live everyday to its fullest. I still suffer with the same headaches and neck pain as I did before, because those pains were not coming from the tumor. I actually had no symptoms from the tumor. Just a lot of luck and a good gut feeling!