Yesterday, I sat down with yet another doctor to talk about the story of this curve.
About how a titanium rod was screwed in to help straighten it when I was a freshman in high school. About how a decade later, I felt a frightening snap. About how after going from doctor to doctor to doctor — begging for months for someone to figure out why I was suddenly in so much pain — I woke up one morning and couldn’t move my knee. Then later felt a mysterious bump. Then, after being told by multiple doctors “not to worry about it”, eventually discovered that half of my scoliosis rod had somehow broken off…and (unheard of) come unscrewed…and (crazier yet) “migrated” down past dozens of critical organs, where it was lodged in my calf muscle.
Yyyyeah.
The radiologists clustered around the x-ray machine that day told me it was impossible. The nurses told me it was a miracle that I was alive. The orthopedic surgeon on call broke the news that — contrary to what we had originally been told — my spinal fusion a decade before had actually failed, leaving my spine unstable. But that unfortunately, it was too dangerous to re-operate and see if the remaining half of the rod was still screwed in tightly.
Ever since, this curve has haunted me. I try hard not to think much about it. But every time my back pops, or I twist an inch too far in yoga, or think about the next 5…15…50 years, I worry about that rod. And say my thousandth prayer that it stays snugly in place.
Ever since, this curve also just hurts. Most days, it’s a chronic ache that I’ve learned over the years to live with. Some days when I push too hard, it lights my entire back on fire and clears my calendar. Some days I forget all about it, although those days are fewer as I grow older.
Ever since, this curve is also my most visible reminder of the sheer preciousness of life. I used to look in the mirror and only see asymmetry and scars. But today, I see a strong body that still gives me the extravagant gift of being able to walk, travel, do my job, and go on living.
It’s the one precious body I’ve been given. And even though we’ve had a complicated relationship, I’m learning how to fear it less and love it more. And be so very grateful. ♡
You are in our our prayers my dear Ali. Never stop looking for a remedy. Check with large medical centers from time to time as they always have experimental modalities they are researching. Take care of yourself, do what you have to do to be happy, and never give up. Know that there are always people you can reach out to. Never give up…
You are very special. I wish you well. I enjoy your emails and your personal stories. You are right! each day is precious and you just helped me appreciate this day today more with your story.
This helped me so much today—thank you for posting it. I’m so very sorry about your back and your pain and worry. Bless you for being such a beacon of light in the world—I look forward to your posts every day. Sending much love, gratitude, and good wishes your way.
Wow! My heart just broke reading your story. I hope they can safely get that migrating rod out. My huband lives with the chronic pain of ankylosing spondylitis. People suffering from invisible pain get such flak from others who can’t see why they have pain. Prayers and blessings for you.
Praying for you.
Dr John Bergman – corrective chiropractor based in Huntington Beach CA. He’s doing remarkable things through natural treatments. https://youtu.be/H-bY7wvGs98 You can see how he does it in this video. He’s remarkable. Best of luck to you.
That’s incredible. That type of pain can effect every moment. As for not being able to operate can be so frustrating. My daughter had a Titanium implant put in her right shoulder after the shoulder bone was removed due to Bone Cancer (osteo -sarcoma) at age 8. She’s now 31. A few months back we were told they couldn’t operate due to muscle & tissue etc had grown over it. But they did say they could go in with a camera to see what was causing her pain. Just something I was wondering if they had mentioned something like to you.
I just cringed….my daughter had the same surgery in 8th grade…just 4 years ago. Were they able to at least remove the rod that moved to your calf? I’m so sorry you’ve had to go through this.
I love your outlook. Many people would have just given up hearing those 4 words of, “your spine is unstable”. I could not even imagine. I wish you nothing but the best while you continue to take your steps day by day.
This is beautifully written. I love how you haven’t let your curve take over your life. I, too, have scoliosis, and it’s on my mind at all times. I love that you’re so open about this subject and how it affects your day-to-day life.