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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109 comments on “On Curves and Chronic Pain”

  1. Oh Honey, I am sooo very sorry . I just hate doctors. I am 81 and really enjoy your blog.
    I am a caretaker for my husband of 85. He has the dreaded altz.and dementia-etc… We have been married for 62 years. I cook weekly meals for several families so that I can make ends meet.
    I really enjoy all of your travel info and recipes. Smile at all of your beautiful pictures.
    I hate it that your back gives you so much trouble. Is the original doctor living? I would send him a “hot” telegram!!! That won’t help but would make you feel better for a moment!! I will pray for you and ask God to give you strength physically and mentally. When I have time–(smile) I will write a book about being a caretaker titled “Scream out loud- in silence”. I’m afraid that also describes your situation. AWWW!!! Send BIG HUGS Dottie

  2. Oh Honey, I am so very sorry . I just hate doctors. I am 81 and really enjoy your blog.
    I am a caretaker for my husband of 85. He has the dreaded altz.and dementia-etc… We have been married for 62 years. I cook weekly meals for several families so that I can make ends meet.
    I really enjoy all of your travel info and recipes. Smile at all of your beautiful pictures.
    I hate it that your back gives you so much trouble. Is the original doctor living? I would send him a “hot” telegram!!! That won’t help but would make you feel better for a moment!! I will pray for you and ask God to give you strength physically and mentally. When I have time–(smile) I will write a book about being a caretaker titled “Scream out loud- in silence”. I’m afraid that also describes your situation. AWWW!!! Send BIG HUGS

  3. Wow! What an amazing health journey. God has been working miracles of protection over you.

  4. I feel your pain. I was raised in Southeast Minnesota and have seen the Mayo Clinic do amazing things for family members. I would start a conversation with the best medical group in the USA!

    • Yes!! Mayo Clinic! If anyone can help you, it’s the neurosurgeons at Mayo. They fixed my scoliosis and changed my life.

  5. So much love to you <3

  6. My heart goes out to you. I already knew you were amazing, but this took it to a whole ‘nother level! Praying for you.

  7. Hi Ali.
    Just wanted to say a huge thank you for posting this.
    I have been and still are going through a difficult time with my femur and I have struggled and experienced the highs and lows of surgery,recovery,pain and greaving for who I use to be and hopefully one day acceptance. I praise God for your courage and strength to focus on what your body can do and how precious life is. Keep your chin up and focus on the things that really matter in this life Love and friendship Gratitude is a brilliant mind set and will sustain you through the difficult days.

  8. Sending you love <3

  9. I love your recipes and blog!! You are always so positive and beautiful! No one would know the pain you have been going through. I agree with some of the comments that suggested to keep looking, there must be a specialist out there somewhere. I feel so sad for the pain you have had and are experiencing now. You are so young! Sending prayers and positive thoughts to you!❤️

  10. Dear Ali, I appreciate your sharing of your scoliosis story. I too have had scoliosis for most of my life. Abundant blessings to you as your continue to navigate this slippery slope. SG

  11. You are my hero! Stay strong.

  12. My heart squeezed in so many ways for you. I had a cervical fusion at 40 on 3 levels and know what it means when you feel on fire all appointments or work is canceled. I also know the joy of every step I take because it could have been so much worse in a wheelchair or walker. I know I am blessed and so are you. Keep fighting my love, you are not alone in this fight.

  13. I just spent two months at Mayo and it was the most wonderful experience. I would check it out if you can. They seem to have it all together in the medical world!!! Good luck to you….pain can really pull a person down….keep that sweet smile going. Linda from ks

  14. You are just amazing!! Just spoke to our friend who was told he was going to die in a few months from cancer. Went to Mayo Clinic and the prognosis is much better, I know he’ll beat it. Mentioning only as somebody else mentioned Mayo Clinic, He said they were a league above the rest! Something to consider.
    Stay positive, strong and beautiful, cause you are!!

  15. Oh Ali, I’m so sorry for the pain you have had to endure. Your gratitude for the body you have been given is inspiring. It certainly makes me think twice about any kind of small pain I may be complaining about. Sending the biggest hugs your way!

  16. So beautifully written.

  17. “Yyyeah” summed it up so well. I’m so sorry. What a beautiful picture of this part of your story. My best wishes for you.

  18. God bless you with good health and much less pain!

  19. when you get back to the USA, try considering doing a great FOOD exploration tour of the South and exploring visiting a physician in birmingham AL for a second or third opinion-Bham is my hometown and a great area for exploring local food culture and look into Bham area
    physicians. so many great ortho docs there and a teaching hospital(UAB) as well as andrews ortho practice(many pro and college athletes go there for surgery/support) supports the huge college and high school/pro (they travel to bham) athletic community! bless you

  20. This post made my eyes water, thinking about what you go through, and the attitude you’ve held onto that drives you to live your life the way you do. Truly, truly inspiring. Thank you for sharing.

  21. You are very brave. I have had two back surgeries, both with more rods and long recoveries. Now more disc issues and pain but I refuse to consider more surgery.
    I love your posts and recipes but can’t believe that you do all of this and live in a foreign despite it all!!!!! Keep up the positive attitude. We are all praying for you!!!!
    Love
    Suellen

  22. I totally understand. 4 years ago my spine collapsed at L4, L5 and S1. I had surgery 2 years ago after dealing with horrific pain. Now my L3 is having issues and the pain I unbearable. I hate to talk to much about it and make a focus for my family. But now my L3 had deteriorated enough I am a candidate for more surgery which isn’t good. I am praying for a miracle so I don’t have to do it but the pain is bad. I hope you can get through it but I hope if you have surgery it is successful. Good luck to both of us and I will pray for you. Good luck. :)

  23. You are an amazing women.

  24. When I’m recipe searching and your blog comes up, I always know the result will be a delicious recipe for my collection that my family will request frequently! Now knowing you create all these recipes and write beautiful posts while in chronic pain I can guarantee I will say a prayer for you every time your recipes/blog come my way. Praying for strength and comfort and answers. Thank you for being vulnerable and sharing your story with us!

  25. Thank you so much for bravely sharing your story on World Spine Day. I pray you find an easier road! In the meantime, so glad you are LIVING with it and not being entirely defined by it.
    God Bless

  26. Hi Ali
    Its our life experiences that make us what we are. Sometimes I wonder why we have these challenges in our lives and then I hear a story like yours it it helps me understand better. Thanks for posting this, I’ll remember you in my prayers.
    Bye, Bob G

  27. I am totally in shock after reading today’s blog. I love everything you do in your blog and wish you a lifetime of success and good health. Goodness gracious!

  28. This really touched me. I had major back surgery (plate and screws) in my lower back several years’ ago to fix numbness in one side of my body. Well, that surgery fixed the problem, but only weeks’ after the surgery, I began having chronic pain in my mid-back…it is a burning pain like your pain. I have been told by 3 doctors that it is arthritis, disc problems, and not operable. I just made an appointment with another Dr. after years of suffering, back injections that don’t work, wearing a tens unit, back braces, etc…

    I, like you, count my blessings every day and do as much as I can on the feel better days, and rest on the bad ones. I am hoping and praying for some help in the future, and I will also be praying for you. Stay strong!

  29. I am in tears from this heart-felt sharing. I am sending you much love and support with my thoughts — what a brave and courageous person you are, for enduring, for seeking truth, and for being able to combine your vulnerability and strength to disclose this personal challenge. For the many readers who also suffer constant pain from their body, I thank you for your honesty and generosity, whether it’s the joy you have found in life or the constant challenges you face, your sharing does benefit us all immensely. Thank you for creating this fellowship of readers who can now support you! Wishing you the best as you continue on this journey.

  30. Ali, it pained me to read this post. After following your blog with interest as a bright spot in my day it came as such a surprise to learn of what you’ve lived with and not given a hint. Thank you for sharing with your readers, I’m sure it isn’t easy. I wish for you that you find relief and perhaps a resolution.

  31. I’ve never heard of anyone else that had titanium rods placed in their back besides myself. I had difficulty in walking due to degenetarive discs in my back. I met witja few doctors in Rhode Island and none would be able to perform this surgery. About 9 years ago a Dr David Meutuz in NYC performed the surgery. It was great, I was able to stand for long periods and walk. About 5 years ago I fell down the stairs, broke a few ribs and survived the fall. However during a snow storm I was using my snowblower to clear snow, bend over SLIGHTLY to clean the machine and heard a pop! I swear I didn’t know what it was (no pain). The next day the pain kicked in. Dr Matuz replaced both broken rods!

  32. That sounds terrifying and it sucks you have to go through it. Now there will be people all over the world praying that rod stays snugly in place.

  33. Ironically, I found your website as I’m laying flat on my back in excruciating pain trying to explain to my 15-year-old so how to roast a chicken breast! I couldn’t remember what temperature for the life of me. ( pain med brain! Lol) My web search led me straight to you. I think it was a God thing to read your story while feeling sad/angry about all I can’t do some days. I’m sorry for all your going and have gone through, and thank you for sharing it. I look forward to digging deeper into your site.

  34. I was just logging into your site to bake some of your oatmeal cookies…now I wish I could send you some!
    Prayers for a solution. You are an amazing, gifted sweet lady and as I read some of the comments posted, your readers are too! Wishing you the best!

  35. Beautiful words from a unbelievably strong person. From reading your blog over the years, I would never have thought for a minute that pain was part of your life. Thanks for being such a wonderful example of the beauty of life. I’m going to think of you the next time things are “rough”. If I can be half as positive as you, I will consider it a success.

  36. I’m sitting in the ER with my husband as I read this. He, too, has scoliosis and we are here because he’s having the worst headache of his life and it’s scaring us both. Back, neck, hip, and head pain are a part of his daily life as well and it’s been a frustrating road to find any answers of how to better control the pain. He’s 36, and we also both worry about the future. Thanks for your transparency and we pray for your health as well.

  37. I can’t stop thinking about you and your situation and am so sorry – am praying for some good solutions for you that will come quickly. Also praying for peace for you!!! Thank you for letting us know. Hugs to you!

  38. Thank you for sharing your story. We never know what is going on in someone else’s life, no matter the outer glow that shines.

    My daughter has lived with her post-scoliosis fusion/rod surgery pain for years, yet an ‘outsider’ would never know the struggles she overcomes everyday. It takes great strength, physically and emotionally, to live the life you have, not the life you are ‘dealt’. As a parent, her having the surgery is my one regret.

    The grace, strength, attitude and perseverance you both share (as well as anyone dealing with chronic pain/illness) is a gift, for it reminds us life is precious and living positively outweighs the negative.

    With gratitude

  39. A wonderful story. We should all be grateful for each day that is given to us in health. Your journey shows us how God’s blessings work in our lives every day. I thank you for sharing your journey with us — along with those yummy recipes! : ) May God continue to bless your and your husband.

  40. God truly has blessed you and kept you. Stay strong. Your attitude is the only way to look at life. We must live it to the fullest. Each day is filled with blessings no matter the down times or those times when we just want to give in, we have to keep moving forward. Keeping you in my prayers.

  41. Sorry to learn of your ongoing medical issues and pain. . As mentioned by another commentor, at some point you may want to consider a visit to Mayo Clinic. They specialize in challenging cases. They use a team approach so the doctors/specialists talk to each other. Family members have benefited from a trip to Rochester Mn. (home of Mayo) as have I. A Ken Burns TV special on Mayo was broadcast on PBS last month. A good video story that is available online. Discusses the history of the clinic and their team approach that places the patient first.

  42. Since I’ve read your post from Tuesday, you have been on my mind and in my prayers. Thank you for sharing your story. I will continue to pray for you.

  43. Please! Try Mayo Clinic in Rochester Minnesota!

  44. I just finished reading this post. Your story is incredible.
    I too live with fear of my body giving out on me.
    My fear can intensify at night. Like you, it comes and goes.
    I had a pulmonary embolism eight years ago, my filter was never removed. I’m told it could also migrate. But my biggest fear is losing my legs. My veins are very compromised. I’ve had people ask me what happened, if I’m wearing capris. Enough of my story. Your attitude is exceptional and an encouragement to me. I do need to be grateful for my body.
    This post came at the right time for me.
    I had a knee replacement five months ago and am still in pain.
    Part of my healing process is slow because of my poor circulation. My other knee will be replaced this January and I’m dreading the surgery. Now I have a new outlook, thank you.
    Your post also made me think of how many people in our world struggle with hidden day to day seemingly insurmountable fears!
    Karen
    Thank you for posting a very personal part of you.

  45. Hugs!! As an old rehab nurse…I understand your challenges…Barb

  46. Oh my goodness!!! Is the piece still in your leg? You have such a great attitude about it all. Praying your body stays healthy and strong.🙏🏻❤️

  47. Thank you for your post. I struggle daily with back pain from scoliosis. As I get older it hurts more often. I can’t tolerate work or standing or riding in a car…swimming is the only activity that makes me feel better. I appreciate your courage to share and your maturity to be thankful.

  48. You are a warrior! I’ve got stenosis, bulging disks and arthritis up and down my spine. I cannot imagine what your pain level must be!
    But…. your back is beautiful and a testament to the war you are fighting! God bless you.

  49. How did I not know?Oh friend, I am praying. You know I am here for you! Have they tried PRP on the muscles around the curve? I’m sure you’ve tried everything, but just know I’m here. <3