After waking up with sudden pains Kristen knew something wasn’t right… Following months of tests, she was diagnosed with chordoma. Kristen, from the US, shares her story below to raise vital awareness.
I woke up for work on August 12, 2002, and never made it. I had searing pain in my spine suddenly and I couldn’t move.
Just hot stabbing pain. Shooting down my legs. 4 1/2 months later, after dozens of painful needle tests, a surgical biopsy was finally performed on December 26. Two days later, I received the chordoma diagnosis. I was 27 years old.
I’ve had 12 spinal surgeries in all for one tumour, which was formerly squatting in my Lumbar L3. It’s gone now and I received a formal all clear in 2006.
The surgeries for Chordoma were consecutive and relentless. Complications left me a paraplegic temporarily.
I was also 350 pounds. Now that it’s all over, after 12 surgeries all due to Chordoma, I’ve lost 200 pounds, I can walk again, and I’m Chordoma free. The aftermath is just pain. For the rest of my life. There are 18 rods, 22 screws, and 3 titanium cages holding my spine together. And it hurts, but I’m still here!
The real experience has just been pain. I try and see positives in everything. Yes, I was sick but I’m not anymore. Yes, I couldn’t walk, but I sure can now. Yup, I was extremely morbidly obese and now I’m not. Sure, I deal with daily pain, but after everything I’ve dealt with I’m still here and fighting.
In every way possible my life has changed.
My career is different now. I moved to an area with less cold weather. And I’m careful about what I do. I stay active. Like I said, yes it hurts, but I’d rather live my second chance than wallow.
God has given me strength. I knew there was no other choice except to fight with everything I had! All I wanted was for them to get that tumour out! And they did. So, I’m grateful.
My message to others would be, do not GIVE UP! Your mental state has everything to do with recovery.
When I was paralyzed, I stared at my feet every day. I said a mantra daily, ‘today you will wiggle your toes’. Until one day, months later my big toe moved. Against all odds. And now I’m walking!
It’s extremely important to raise awareness. This disease is insidious and relentless and the only defence is early detection. My only symptom was extreme pain. Listen to your body!!!