On Curves and Chronic Pain

On Curves and Chronic Pain | My Scoliosis Story

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.  

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115 comments on “On Curves and Chronic Pain”

  1. I had this same surgery also at 14, but on my right side. What you described has always been a fear of mine, but I always imagined it happening from twisting too far or pushing my body too hard in some way. Despite how your body may feel you have managed to live a full life and enrich others and I hope you continue to do so! Praying for you!

  2. I have been caught up in the busy-ness of life, and completely missed this entry. My most positive thoughts and prayers are now flying heaven-ward! My mind is having trouble believing that nothing can be done. I will also pray for the specialists involved. You are so brave, strong, beautiful inside and out – God bless you.

  3. Your strength, insight, courage and sweet, sweet spirit are both inspiring and humbling. You will be in my daily prayers Dearest Ali. You are being lifted up by hundreds of devoted fans. Any time you need to have a virtual decompression session, we are here for you!!!!

  4. Your gratitude and outlook are so admirable! I am praying now for you and even more thankful for all the ways you serve me, and so many others you don’t even know, who haven’t done a thing for you, by sharing with us not only a wealth of delicious and beautiful recipes, but pieces of your story. “Mercy, peace, and love be multiplied to you,” (Taken from the book of Jude, verse 2). Praying for a comfortable day for you today!

  5. God bless you!
    I to have a screwed up spine….and I know constant pain!!
    But you are so much stronger than I.
    I’m not upbeat about it as you….. I’m pretty darn depressed.
    I do hope they can help you in the near future.

    • Yes. Spondylolisthesis, not Scoliosis. Now and for a few years, a second S’esis developing under the FAILED first surgery, which is 26 yrs old. Constant pain, unable to repair, or fuse newbie because age. I have lived in pain, poverty and disability w/o any help from my universal healthcare system, who could have provided me with physio, chiro, therapeutic massage, at least, but only offered me oxycodone which I refused. Both these conditons exist primarily in women, did you know?

      I find it hard to cook now. But I can read along! The shopping, bringing in, preparing, cleaning, is a guaranteed relapse, if it’s possible to relapse for something that never recovered in the first place.

      I am in awe of your achievements.

  6. Whoa! What a story! You are certainly fortunate to have gotten through the rod migration without terrible injury. I also have rods from an injury in a tornado and have worried about the same thing. I’m cautious about doing twisting poses in yoga and have often wondered just how long the rods will hold. But.. worry is useless and if we can put our minds to something positive, we’ll be better off. It’s a process to get to that point, though. I’m happy that you are grateful for the function you have and that you can see past the ‘curve’.

    I don’t know how I found your blog but I tried a soup recipe the other day and it was stellar! I gave the chicken marsala on my list to try next. Thank you!

  7. Oh my. This is indeed a crazy story. And like some other people have said – you’ve managed it all so well! Your voice on this blog is joyful and excited and thankful; your recipes are super solid and delicious, but your sparkle makes me excited to visit every time there’s a new post. I love following you! I’m sorry that the pain has become more chronic and debilitating recently. I’ll be praying for your healing and for strength and grace to get through each day. I’m encouraged by your positive and determined outlook to move forward and be grateful. You have my admiration and support. <3 <3

  8. Wow, that is absolutely insane and God most definitely protected you from further spinal and vital organ damage! I was gripped with sorrow to read that you are living with Chronic Pain, but seriously so impressed and thankful that you continue to pursue your dreams and share your well thought out, perfectly executed recipes, beautiful photography and stories with your readers. I’m very slow and new to this blogging thing and even though I haven’t posted much, I have a glimpse of how much work goes into it. Bravo for you and thanks be to God for giving you the strength to live your life to the full in spite of Scoliosis.

  9. I just had spinal fusion surgery in March to correct my upper thoracic kyphoscoliosis. I went from an 84 degree “hunch” to a 45 degree curve. I also grew 2 inches! I so related to you when you said your back feels like fire and almost every day you are in pain. I did A LOT of research before I had the surgery and Dr. Hey with the Hey Clinic for Spine and Scoliosis at Duke Raleigh was my God send. I would seriously love to talk with you more. It can be a lonely journey!! Feel free to DM me on Instagram at Katerslpatt8.
    P.S. I just googled a potato soup recipe and now I’m writing about scoliosis!? 🤷‍♀️

  10. I also had the same surgery–twice. After two years, one of the screws became “loose” and the rods had to be removed. I now just have six fusions in my lower spine.

    Thank you for sharing your story. You’re not alone :)

  11. Hello Ali, I dont know you but I had neck surgery and a fusion in 99….it lasted almost 20 years. But then I began to loose feeling in my arms and my fingers would not always work. The nerve pain was something I lived with everyday but when I was told if something did not change I would be a quad and it could literally happen without notice….we toured the US hunting for possible help or some answers. Mostly what we heard was they ‘could maybe not make me better, but they could “almost promise they could make me worse. “. It was through the research of my son we discovered this doctor in BOgan Germany that had done over 10,000 of those procedures and although there had been some less then perfect outcomes, the reviews were amazing. And many of the NFL go to him to help with injuries. You could send him your information and they can get back with you about possibilities? His name is Dr. Bertignoli and he is in BOgan Germany at the Pro Spine Institute. If you want to call or email me I will share more. Praying for you. Our issues may not be identical but I completely get the pain and terror. Xox. Deborah

  12. Hi really sorry to hear your story. I live with chronic pain too due to hyper mobility problems. I’m in the UK. You should look into the National Orthopaedic Hospitsl in London. Princess Eugenie had a spinal operation there for scoliosis I believe and she is now a fundraiser for them.