The Scoliosis Surprise

I debated posting this.

It might not seem like it, but in a lot of areas, I’m a very private person.

And this story starts with a cancer scare, and switches gears bizarrely, and that isn’t something I’d generally talk about——but the fact is, no matter who you are, this post could help you and prevent a lot of pain for you or for someone you love.

So here’s what happened.

The Shit Goes Down

A couple months ago, I developed symptoms of colon cancer. Now symptoms of any sort of cancer are also generally symptoms of a million things that aren’t cancer, but if you value your life——and I value mine——the instant you experience the symptoms that could be something that MIGHT kill you, you have one sane option.

You IMMEDIATELY deal with the issue.

Now, I’m hell on wheels for skipping checkups, for avoiding medical testing, and for dropping out on age-group-standard recommended tests. I’m a retired RN, I detest hospital bureaucracy, and as far as possible, I avoid anything that might put me into the grip of this bureaucracy in world’s least desirable role: patient.

As long as I have no symptoms.

Symptoms change shit. When you have symptoms, you do not put them off, you do not ignore them, you do not wish them away, you do not hope for the best.

If you have symptoms, you IMMEDIATELY deal with the issue.

My symptoms started late on a Thursday night. Friday morning first thing, I called my GP and scheduled an appointment. The earliest one I could get was the following Wednesday. I continued experiencing symptoms up to and including the day of my appointment. Went in, talked with my doc, asked him what else it might be besides cancer.

He told me not to get ahead of myself.

I explained that my job as writer entails me immediately figuring out not just the worst-case scenario, but five ways to make that even worse. He laughed, I laughed. The truth is frequently funny, and there’s nothing like thinking you’re going to die to sharpen the edge on your laughter.

He got me a sit-down with a bowel guy the next day. I sat, he and I talked, I explained both my symptoms and my fears, and he scheduled me for an upper GI and a colonoscopy the following Monday.

Bowel Preps Are Fun

You drink horrible fluids in vast quantities at timed intervals, you avoid barfing at all costs, you live on the toilet. ‘Nuff said.

It Ain’t Your Mother’s Colonosopy

Things have changed a helluva lot since I stood beside a fully awake patient on an ER stretcher and instructed him to “pant like a puppy dog” while a tube the size of a city sewer pipe was inserted into unmentionable places by a sweating doctor.

If you have to do this, the procedure now is:

You fall asleep.
You wake up.

VAST improvement.

The Uncertain Results

Stuff on my insides were okay. No cancer there. BUT I had an atypical finding that required me to get a CAT scan. Might be we were still talking cancer, though of another sort.

Yippee. We scheduled my CAT scan for “soonest possible,” and on the appointed day, I got to drink barium.

Barium sucks.

And the WEIRD Results

The doc called me personally the next day to give me the results. Everything was fine. Well, fine for my age. I have a few normal “getting older” issues, but they’re no big deal.

Except, my doctor asked, did I know that I had a bad back? A really bad back?

If a doctor says something is “really bad,” he does not mean it in the way you mean it when you say “I have a really bad headache,” and two Tylenol fix the headache.

So I braced myself for BAD news.

I said I knew I’d had back pain since I was a kid.

What he told me wasn’t as bad as I’d considered it might be.

But it wasn’t great, either.

Turns out I’ve had scoliosis of the lower spine (Lumbar vertebrae 3 through Sacrum 1)——probably since I was a kid. I remember having awful shoulder pain when I was seven, so bad it made me cry. And I might have had lesser pain before that.

People who have idiopathic scoliosis generally know it. It’s a big deal, it’s visible with and without clothes, children are checked for it in schools when they’re young.

My kind of scoliosis——which turns out to be functional scoliosis from leg length discrepancy——is both fairly common and easy to miss. Mine is invisible externally.

But guess what. It’s capable of causing constant chronic pain including lower back pain, neck and shoulder pain, and migraines.

I did not have a single day or moment of my life from the time I was a kid in which my neck and shoulder muscles did not hurt. Folks ascribed this to me being tense. When I was a kid, I was told to quit complaining, to find something to do. When my back locked up, I lay on the floor with my feet on the couch until the pain lessened.

But consensus was that there was nothing wrong with me aside from the fact that I was a stressy bundle of nerves who would not and could not sit still.

Not so much, as it turns out. (Okay, I AM a stressy bundle of nerves who cannot sit still——but that turns out to be entirely unrelated to back, neck, and shoulder pain, and migraines.)

I figured out a free do-it-yourself test

The diagnosis on my CAT scan was “idiopathic scoliosis,” which just means “don’t know what caused it.”

But I was looking at myself in the bathroom mirror, and realized that my hips tilted just a bit downward to the left.

It isn’t anything I would ever have noticed, because it was a tiny difference. Only I’d been looking at my spine, trying to see if someone else might have noticed the problem just by looking at my back (the answer to this being, “Probably not”).

So I stood on my left leg and lifted my right leg.

Then I stood on my right leg, and lifted my left leg. I was noticeably taller. Did this a few times, went out and showed Matt. He said, “You’re bending your left knee.”

Only I wasn’t. We lined me up against a doorframe, and measured.

Standing on left leg.
Standing on right leg.

There’s half an inch difference in my height measured from left leg to right leg.

This is fixable, and the pain goes away

It's an adjustable 9-buck shoe lift.
It’s an adjustable 9-buck shoe lift.

I decided to see what would happen if I just made my legs the same length.

I bought a few of the shoe lifts shown in the picture to the left (if you click the picture, it will take you to the actual product).

For the first week, my lower back hurt horribly, my upper back hurt even worse, and on day six of wearing the lift in my left shoe or slipper every waking moment, my entire back spasmed and I was back on the floor with my feet up on the couch.

Next day, though, the pain was gone. All gone. Lower back, shoulders. I literally cannot remember a time when my shoulders didn’t hurt. They don’t hurt anymore. My lower back hurts after I’ve slept from six to eight hours, but that’s because the spine is screwed up, and there’s some permanent damage there.

If you or someone you care about has constant lower back or shoulder pain, this is worth checking.

The test is simple. Get a ruler and a marker, and stand (or have your loved one stand) with back against the wall, shoulders back, chin up, ON ONE FOOT. Hold the ruler at a right angle to the wall, and mark the height (and the foot standing on). Then switch feet, and mark again. If there’s a discrepancy, this COULD be the cause of the pain, and a nine-dollar adjustable shoe lift might be able to relieve it.

Could the pain come from other things? Yep, and you’re responsible as an adult for getting yourself to a doctor to have those other things checked. If your loved one is a kid, get your kid to the doctor to see if there’s something better than a shoe lift that can be done to prevent the irreversible damage I have in my lower spine (L3-S1).

If someone had known to do this simple “stand on one foot” test for me, or even if as a young adult I had known to do it for myself, I would have spared myself constant pain for most of my life so far.

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21 responses to “The Scoliosis Surprise”

  1. Julianna Avatar
    Julianna

    Hi Holly. I remembered you talking about spinal pain and how you and your doctor solved your back problem, so when I made my big “Ah HA” chronic spinal pain discovery I wanted to share it here. I have chronic spinal pain, and have had multiple treatments and surgeries. I (and I think you, too) are evidence-based practice types. I respect the scientific method – tradition and authority, not so much. So I did my own reading to see what the research could show me about what is truly known about back pain. Here is what I found out. So much of my, and others’, back pain is attributed to structural problems, but it has been shown in many, many different studies that a lot of pain free individuals have those same structural abnormalities that are thought to cause back pain in patients. Other studies show that the main difference between people with and without back pain are differences in the multifidus muscles that connect and stabilize the back. I found one very good layman’s book about this issue, it is called The Multifidus Back Pain Solution by Jim Johnson. If you have back pain, I would recommend this book for its evaluation of the scientific evidence about the source of back pain, for its clear descriptions of basic back anatomy, descriptions of common back abnormalities, and definitions for common medical terminology. I don’t know the guy or profit from sales of the book in any way, just to be clear.

  2. Jean Avatar

    And, yeah, colonoscopies are a breeze these days. I got some cool pictures from mine a few years ago.

    I have always had one leg shorter than another. That is probably why my hips are locked up so tight my osteopath cannot get them to release.

  3. Jean Avatar

    I missed this (I’m missing a lot lately, it seems). So glad you have so much good news from a potentially devastating situation.

  4. SageCentral Avatar
    SageCentral

    Dear Holly, I am so glad you didn’t put off getting at the root cause, and then using your common sense to fix your problem, enduring some pain while your body readjusted until you got to the other side. You’re a champ.

  5. Amy Avatar

    So glad you’ve found a solution, Holly!! As someone who had to fight for nearly three years to get a diagnosis for my thyroid problems (which turned out to be severe enough that I was given radioactive treatment), I know how much of a relief it can be to FINALLY know what’s wrong.

    That said, I just wanted to leave a note here about leg length. I suspected for a few years that one leg was shorter than the other, and finally started seeing a chiropractor some relatives had recommended to me. The chiro is brilliant, and it turns out that my legs WERE different lengths, but not because they are naturally; my hips/pelvis were just screwed up enough that it was making one of my legs shorter than the other! So, with the chiro’s help, my hips are slowly unlocking and my legs are the same length again. So for everyone else reading this too, just because your legs are different lengths, it doesn’t necessarily mean they are the cause of the problem; if the problem’s in your hips, like mine was, wearing a foot brace might just compound the problem. Worth getting it checked out by someone who knows what they’re talking about 🙂

    I’m so pleased for you, Holly, that you’ve found something that’s eased the pain though. Being able to skip the migraines – that’s got to be a massive benefit!!! 🙂 *cookies*

  6. Irina Avatar
    Irina

    I’m starting the fireworks! I had a similar experience after 7 years of chronic headache, and I keep my fingers crossed that the migraines won’t come back. Pain is crippling. Best Wishes to you!

  7. Katie Avatar
    Katie

    Every time I go into the chiro he adjusts for my hips. I’ve known for several years that I have one leg longer than the other. My sister’s first child was born with a club foot, and I always wondered if perhaps there was something similar going on. the interesting thing is that I do get frequent shoulder pain and I can’t sleep more than about 6 hours any night because my hips hurt like heck when I wake up. I will have the hubby check me, and maybe even look at the lifts. Thanks for sharing this.

  8. Kit Avatar

    One more think to be grateful to you for! I had my sister measure me and my left leg is about half an inch longer than my right. (I always knew I was a bit off-center, but this is ridiculous!)

  9. Jessie Haynes Avatar

    Glad that you are okay, Holly. To be out from under the grip of migraines must be incredible (I’m a semi frequent migraine-haver myself).

  10. Amy Avatar

    Amazing! I’m with everyone else in my hopes that this means the end to ice pick migraines!

    And it reminds me that I have some things I’ve been ignoring that I need to have checked out by a doctor. You talked me into it… I’ll go.

  11. david brent Avatar
    david brent

    Hory Clap! Have the migraines gone away?

    1. Holly Lisle Avatar
      Holly Lisle

      So far…

      I’m kind of holding my breath.

  12. Marilyn Czerwinski Avatar
    Marilyn Czerwinski

    Holly,

    I am not a doctor or implying any medical treatment. That said, I also had this and can really ‘feel’ your pain. Two years ago I began chiropractic treatments. No more shoe lifts, no more lopsidedness, no more severe pain. Not sure if you have tried this, but it might help.

  13. Texanne Avatar
    Texanne

    Wow. I am so glad to learn you don’t have cancer!
    Scoliosis is nothing to laugh at. We saw a lot of it in South Texas. Some of those x-rays were astonishing, even among kids who were hardy little athletes.

    So happy you devised a test to check for this problem. One other test: when you have your slacks tailored, and one pants leg consistently comes out half an inch shorter than the other.

  14. Damon Avatar
    Damon

    That is a bloody miracle! To think when I first met you well, not met, you were about to quit teaching altogether because of your migraines. As a fellow pain sufferer, all I can say is “it’s a miracle”!

  15. Michelle Avatar
    Michelle

    Thanks, Holly. My son suffers bad 1-2 day headaches every few months (he’s fifteen and they make him cry like a baby)and so far no cause has been found. I’ll be doing this test on him as soon as he gets home from school. And I’ll get him to do it on me too, since I get migraines every three months or so. Life without migraines (maybe)… Joy!

  16. Terry Avatar
    Terry

    I’m happy that you have found out what the problem is and have found at least some relief. Thanks for sharing this good news with us.

  17. Damon Avatar
    Damon

    So, were the colon cancer symptoms related to the scoliosis, or were they completely unrelated and still being investigated? I was diagnosed with scoliosis years ago, and like you, I’ve had chronic back pain for most of my adult life, though a lot of my pain is a direct result of sitting in a chair for most of my work day as well.

    I try and get up from the chair a lot more these days. 🙂

    1. Holly Lisle Avatar
      Holly Lisle

      The colon cancer symptoms were unrelated to the scoliosis. It was simply a bit of serendipity that let my doctor discover one thing while looking for something else.

  18. Stephanie Avatar
    Stephanie

    Holly,
    This is interesting! I’d never heard of this. Here’s hoping the lift provides a cure for your migraines. I’m betting not a whole lot of people are even aware of this as a possible issue. Too bad it wasn’t caught when you were a kid….(but medicine has changed a lot in the past twenty years or so) but glad you caught it now and have a work around in place!

    1. Claudette Avatar

      So glad that all is better on some fronts and explained on others. Migraines are no laughing matter and neither is scoliosis. My sister has very visible scoliosis and has since childhood. Me, well, I’ve certainly got the back pain and the rest. As I age, I see the weeble-wobble of disparate leg gaits more each day, but haven’t yet determined if it’s related to length or merely the lack of cartilage in one knee.

      So glad you’ve found relief with an answer. I’ll have to check for my own situation. My chiro always said I was a walking textbook of skeletal imagery. We’ll see if he meant this, too. 🙂

      Thanks, Holly, for the heads-up.

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