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A Big Pain in the Neck

Sometimes I wonder why I worry at all; it seems like I can spend hours ruminating about something, and in the end, the curveballs thrown my way always seem to be things that come out of left field. I can fret all day if I want to but it seems that life has its own idea about how to scare me. Recently, I learned this lesson again. The past few months I’ve spent a lot of time concerned about side effects to my new medication, and instead, a pain in the neck turned into a dire warning that my disease has progressed.

The pain started slowly…

Apparently, we all have a joint that connects our first and second vertebrae called the atlantoaxial joint and when you have juvenile rheumatoid arthritis over time this joint can become unstable. Often, a person won’t even know this is an issue until they begin to feel pain. For me, the pain started slowly, a stiff neck, a sore spot I constantly rubbed, and then one day a headache that wouldn’t go away. Then, an x-ray, an MRI, and a visit to the doctor who told me I need to see a specialist asap. This new development could lead me to a neck brace, to surgery, a limitation on my activities, or to sudden death if I’m not careful; at this point, I have no idea. Until I know more, I’ll be moving cautiously and avoiding dangerous activities, which for me is like trying to hold my breath – I happen to be the type of person who feels like I wasted my day if I haven’t done at least one thing that people shake their head at.

When something like this happens to me, platitudes fall apart.

Things may happen for a reason, I may not be given anything I can’t handle, life may or may not be fair, but right now I honestly don’t care. What I do care about is making the most of every moment I have here, doing the best I can in every situation I find myself, and in living with grace no matter what is going on. So right now, instead of worrying about the next thing that probably won’t happen the way I imagine it will, I’m going to focus on finding a good book. I’m going to look my dog Jasper in the eyes and tell him I love him. I’m going to hug and kiss my husband like I mean it. And I’m going to smile because I’m so, so happy to be here.

Having rheumatoid arthritis means that as the disease progresses, so can I. As my body becomes more limited in what it can do for me, I’ve decided that I’ll work on strengthening the 90% of the brainpower I supposedly haven’t been using. I’m going to show progress in my ability to control unnecessary worry, and instead focus on compassion because this will be a better contribution in the world right now. I’m confronting my mortality for the first time in a real way. None of these things are bad, in fact, my neck may be doing me a favor. By showing me its vulnerability it is making the rest of me stronger. I’m not thanking it yet, but I’m hoping someday I will.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Ann B Wall
    2 years ago

    I am in awe of your attitude and that of the other folks who posted here. Great article and thanks for sharing this serious complication

  • cheeflo
    2 years ago

    After my rheumatologist of 13 years retired, I found a new rheumatologist (who I just love). One of the first things she did was order an x-ray of my neck, as I had been having some discomfort — nothing major, but bothersome and persistent. She and her colleagues saw something on the x-rays that they didn’t like, which was an apparent instability at the C1-C2 vertebrae — the ligaments were not doing their job of supporting my neck and skull. She referred me to a surgeon, who told me to not to worry, to get an MRI, and then he’d probably never see me again. However, after interpreting the MRI, he said while it wasn’t urgent, he thought I should have surgery to stabilize the vertebrae at my earliest convenience. It involved a posterior incision, a bone graft from my own hip, some hardware, physical therapy, and in my case, about 7 weeks in a rigid neck brace with strict limitations on activity during recuperation.

    So I pulled the trigger and had the surgery done. It went as well as anyone could hope and I got through it. I had very good doctors, stellar care at an excellent hospital, and the love and support of my friends and family. I have lost some range of motion side-to-side, but with a panoramic rearview mirror in the car, I can drive again and have returned to work. My hair is growing back in where it was shaved underneath and I have a magnificent scar.

    I would suggest to you that you read as much as you can about the condition and the procedure and do not be afraid. That it is a complication of the RA, and not the result of an injury or accident works in your favor. It is riskier to forgo the surgery than it is to have it.

  • kat-elton author
    2 years ago

    Cheeflo thank you! I think we will be twinkles soon…. It relieves me to hear about driving as this has been a long term issue that’s been concerning me. I have a surgical consult next week and will be pro-active with getting the surgery done. Thanks again for all your helpful advice 🙂

  • Lucy
    2 years ago

    I was diagnosed with JRA when I was a teenager. I am now 59. I have had neck pain for as long as I can remember. It has finally progressed to the point where I pushed my doctor to that I can take action to see what is going on. I have nerve pain and tingling in my right arm that is sometimes unbearable. But I also have shoulder involvement. I am waiting on an appt with an ortho to discuss possible corrective surgery/treatment for my shoulder, and waiting on a prior authorization to be able to get a neck MRI. i want to know what is going on with my joints and the nerve pain and I want to get the appropriate treatment but it is overwhelming to have all this on my plate. Thanks for writing this as I knew nothing about the atlantoaxial joint at all. Good luck to you in your treatment.

  • kat-elton author
    2 years ago

    Hi Lucy! Thanks for writing. I’m glad you are getting this looked at and even though it must all be a bit overwhelming right now it sounds like you are on the right path to find some answers. I didn’t know much about the antaloaxial joint either, and I think soon I’ll know much more about it than I’d ever want to! I sure hope you get some answers soon and good luck to you as well. 🙂

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