I’m not going to put any pictures on this post because it may be too graphic for some. Just know that if you Google my condition, the pictures that come up are all way worse than mine, so don’t freak out!
I was diagnosed with scoliosis (unnatural curvature of the spine) when I was about 13 years old. I remember the day we had a scoliosis screening at school; I’m not sure how, but I just knew that I was going to have the tell-tale curve, and I was right.
My parents took me to see a spine specialist. The doctor was a very young guy, probably under 30 years old, and I remember that even to my 13-year-old self he seemed a little inexperienced.
I asked smart questions, like: “Can I expect this to affect my mobility in old age?,” “Will I have to go on bed rest during pregnancies due to the extra stress on my spine?,” and most of all, “Will I have any pain?” That doctor looked me straight in the eye and told me not to worry about anything, that it wouldn’t affect my life at all, and that the only thing I might have to think about is wearing one-piece swim suits so that no one else could “see it.”
I was embarrassed at his dismissal of my concerns, but what happened next was even worse. He told me that because my hips were uneven, that I’d need to wear a shoe insert to make my legs the same length. He grabbed a handful of magazines and made me stand on a stack of them with one foot, and that’s the measurement he used to determine the thickness of the insert I needed!
I wore the insert for about 2 weeks before the excruciating pain it was causing in my lower back was just too much to bear. I threw it away without telling my parents.
For the first few years, I didn’t really have any pain, just some slight discomfort and a feeling of always needing to pop my back but not getting any relief from doing it. It was when I entered high school that things started to change. I started to notice that the muscle column on the left side of my spine was enlarged, as if I were permanently flexing that muscle group. My muscles were working overtime to give my torso the support it needed that my spine couldn’t provide. Over the years this muscle group went from just feeling tense to feeling painful and ultra-sensitive, and later just feeling numb.
The next problem was with my hips. I lost the swing in my walk as they got stiffer and stiffer. It got to a point were I couldn’t walk for more than 10 minutes without the pain starting to shoot down my legs. A two hour jaunt around the mall would always end in tears and ibuprofen, just getting between classes at school was tough.
The real problems came with the migraines. I had debilitating migraines at least twice a week, and on the days that I didn’t have one, I would still have a headache that was worse than normal.
I nearly failed my senior year of high school due to low attendance. I stayed home at least once a week, sometimes more, because I was in pain. I remember getting to the end of the school year with 2 months left until graduation and only having 3 more days that I could be absent and still pass the grade. I suffered through class many days in an effort to ration those precious days off for the worst pain. I am 99% sure that one of my teachers gave me a passing grade because she knew that my actual grade was low due to attendance and not due to my knowledge on her subject. I was an excellent student, but I was struggling to even leave the house every day, let alone get any work done.
You might ask, “Why didn’t you go to the doctor for all this?” My parents and I were told by that idiot specialist that scoliosis is not treatable without surgery and that I didn’t qualify for surgery because my curve wasn’t bad enough. I had just accepted that there was nothing I could do about it, that this was my life and that there were just going to be a lot of things that I couldn’t do and a lot that I would have to live with.
Jeff and I met just before my pain got to it’s all-time high. He put me on his health insurance before we were even married because he wanted me to get help so badly. I made an appointment with a chiropractor not really knowing what to expect and not really sure if that would help me.
I already had 4 ibuprofen in my system before I got to my 11:00am appointment. I told the chiropractor that and he put his hand on my shoulder and said, “Very soon, sooner than you think, you and I are going to flush those pills down the toilet together.” We talked and took x-rays, but I didn’t get an adjustment that day. He wanted to review the x-rays before he just started popping whatever. I had to stop by Jeff’s office for a hug afterwards because I was in so much pain and so disappointed that I didn’t get any relief that day.
I finally got that adjustment though, and I can’t even describe the way I felt even immediately afterward. I saw him 3 times a week for several months and I couldn’t believe how much I improved. I was feeling like I had as a young teenager again! I haven’t had a migraine in 2 years and suddenly I can walk for miles without pain!
Running has become important to me because it is something that I had always believed I was not capable of with my condition. I probably will not ever run a marathon, 4 miles is my maximum without pain, but that’s ok because a marathon is not my goal. Running is hard for me, and not that enjoyable while I’m doing it, but the way I feel afterwards when I know that I’ve done something that I once thought was impossible is indescribable. My goal is just to enjoy the mobility I have been given and use it so that I don’t take it for granted.
I’ve mentioned it before but it’s worth mentioning again, that I am running my first 5K in late October. I’m not running for time, in fact I expect to take over 40 minutes to complete it, and that’s ok. Scoliosis has distorted the shape of my ribcage in a manner that decreases my lung capacity, so I’m not going to overdo it and wear myself out. I’m just going to enjoy having the ability to complete a race like this at all.
Everyone has obstacles that can keep us from becoming our best selves if we let them. I’m not going to let scoliosis keep me from doing anything anymore.
What obstacles do you have that try to hold you back? How do you work to overcome them, or how have you already?
Hey there. I just wanted to tell you that you are so beautiful and I think it’s awesome that you’re running. I’ve done several 5k’s, but never really trained for any of them. The only obstacle in my way is myself and my excuses and I’m not too sure how to overcome that. Good luck on your 5k, you will do awesome!
Thanks Stefani, I’m excited about it!
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Wow, I have heard that story before, only mine starts at age 39. I have had serious scoliosis since I was 8, my mother wouldn’t allow me to have the surgery because I was an active healthy kid. At 20 I started having mild back pain, but nothing till I tried to get back into running after my second child at 39. Ever since then I have had the migraines, the major knots in my muscles, I get muscle spasms that are worse than my labor contractions. Every doc (including specialist) keep telling me I need to focus on what my disease will allow me to do not what I want to do. I atleast have hope that I can get pain free now. Thanks
Hey Jen, thanks for sharing with me. I’m definitely not pain free today and probably never will be, but a mix of massage therapy and an excellent chiropractor has completely changed the game for me. I still worry about how independently mobile I’ll be in old age, so right now I’m just focused on maintaining this level of mobility and comfort for as long as possible. I can’t recommend chiropractic care enough, but finding a good one is difficult. I’ve definitely seen my share of nutjobs and charlatans, but there’s just as many passionate and helpful doctors out there too if you do some research beforehand. I hope you find something that works for you; anyone that tells you you’ll never feel any better just doesn’t know the right way to help you.
Thank you for sharing your story. I know where you’re coming from and it’s inspiring to know you’re out there accomplishing goals you didn’t know were possible!
Hi Jen, Thanks so much for sharing your story, it’s very inspirational and it’s amazing that you plan to run a 5 km race. Good for you! It’s very disappointing to hear that the specialist dismissed your concerns and said that there was nothing that you could do other than surgery. As a physiotherapist, I hear that physicians and specialists don’t often let their patients know about different forms of rehabilitation that can be very effective and give you so much relief. I am so glad that you found your way to a chiropractor and a good chiropractor on that note! You are very lucky.
Physiotherapists also work with patients that have scoliosis. Our expertise is more in movement and exercise management. We teach our clients to work on improving the imbalances that may be contributing to the scoliosis. In very basic terms, we work on stretching the tight/overworked side, and teach you specific strengthening strategies on the longer, more weaker side of the curvature. This can help prevent worsening of the curvature as you age.
I recently took an interesting course and they talked about scoliosis being caused by the nervous tissues (the dura which is the skin around the spinal cord and nerves). The instructor taught us that sometimes the dural tissues don’t grow as quickly as the bones and as such causes the bones to shift and cause scoliosis. I have tried some dural stretches on some of my clients with scoliosis and this seems to really help them as well.
Anyhow, just some food for thought! You should really be proud that you are pushing yourself and your body to achieve your goals! Congrats!.
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