living with scoliosis Posted in: Personal Experiences

The following post was written by June Hyjek, an award-winning author, speaker, wellness coach and scoliosis patient and advocate. Her books, meditations, and workshops offer hope and encouragement to people experiencing life’s challenges. She is the author of “Unexpected Grace: A Discovery of Healing through Surrender,” an inspirational story of her personal journey in dealing with scoliosis, and a meditation CD, “Moving into Grace.” June’s new book, “Being Grace: A Story for Children about Scoliosis,” shares the emotional consequences of having scoliosis through the eyes of Grace, a young giraffe who learns to accept the differences in herself, not just in others. More information can be found at http://www.APlaceOfGrace.net.

June HyjekThe birth of your child should be a wondrous experience, and, for me, it was. But the pain was another story. Because while I was dealing with labor pains, I was also dealing with excruciating, unimaginable back pain and a broken lower rib. This was well beyond the pain of contractions. When the doctor tried to give me an epidural, he was unsuccessful in getting the needle into the spine. In the deep haze of blinding pain, I heard words like “lumbar curvature,” “bad alignment,” “hips tilted” and “too close to the ribs.”

My son did eventually arrive; and yes, he is wondrous. But the back pain didn’t go away. I had trouble bending over, picking him up, and doing household chores. We all blamed it on the fact that I’d just had a baby, but I knew my body and something was wrong. Initial x-rays showed I had scoliosis, but I was told scoliosis doesn’t cause pain. (That’s a myth I’ve since learned is as big an urban legend as Bigfoot or the Loch Ness Monster.)

The Search for a Diagnosis

The search for the underlying disease began. A whirlwind of doctors later, I was diagnosed first with lupus, then Lyme disease, and next, rheumatoid arthritis. I was even patted on the head and told all new mothers have back pain. Further testing, though, proved these diagnoses wrong – and well, I felt it was best to ignore the “new mother” comment. So at the time, when someone experienced this kind of pain and doctors couldn’t find the cause, the default diagnosis was fibromyalgia. What I didn’t know then was the neurological impact of scoliosis can create symptoms that often mimic those of fibromyalgia.

I began to doubt what the doctors were telling me, especially when treatments for fibromyalgia didn’t work. I started researching scoliosis. And we’re talking about prehistoric days before the Internet (I know this is hard to imagine), so I went to the library – that big building with all the books – to get answers. However, there wasn’t much information to be had. No one seemed to know what caused scoliosis, and the accepted treatment seemed to be surgery. And I was not ready for that.

Although my diagnosis is considered adult-onset, there were signs I had scoliosis as a child. But not only do I pre-date the Internet, I also pre-date school screenings. I used to complain to my mother that one pant leg seemed shorter than the other, and when I wore a skirt or dress, the hem was uneven. My posture wasn’t good and it hurt to stand for long periods of time. I always thought I had one leg shorter than the other, but I discovered later that wasn’t the case. One hip was higher than the other because my spine was curved.

If I had a mild case as a child, and scoliosis is the cause of my pain, why then was the pain so much worse with childbirth? When the library didn’t give me an answer, I started talking to doctors and chiropractors. I learned that because of the hormonal component, scoliosis can worsen during periods of hormonal changes, like pregnancy and menopause. Another pregnancy and my curvature could get at least 5% worse. That’s when I became a fan of being the mother of an only child! At least I had some answers, and I was beginning to understand how scoliosis could impact my life.

Physical Therapy

I began physical therapy, and over the next 13 years, had many more rounds of physical therapy. It helped tremendously, and I saw how staying strong and fit could really make a difference in my functionality, not just with the pain. So I became a gym rat, and discovered strength training (we’re talking about the Jane Fonda aerobics days when women just didn’t do strength training).

But as strong and fit as I was, I found myself drowning in a number of seemingly unrelated medical problems. I had trouble chewing and digesting certain foods. I had migraines and menstrual issues. My gallbladder failed (no gallstones; it just failed). I developed Morton’s neuromas in both feet and found myself prone to ankle sprains. I was plagued with other orthopedic problems – knees, hips, elbows, wrists. I later learned that all these medical complications, and more, have been related to scoliosis. But my body was falling apart, no matter how hard I worked at the gym.

And then my body really crashed. I was so busy working at staying fit that I didn’t notice it happening until it became obvious. I got older. Yes, it happens to all of us. With the aging came pre-menopause and more hormonal changes. One day, my husband and I were going to a Christmas party, and I had bought a new little black dress which had a square neckline. As I stood before my husband, modeling the dress, he cocked his head to one side and said, “Did you know you’re crooked?” Looking in the mirror, I saw he was right. The square neckline had made it obvious how much more my back had curved. I had avoided another pregnancy that would worsen my curvature, but I couldn’t avoid menopause and the effect the hormonal changes had on scoliosis.

I was scared. I thought I had this under control! Now what?!!! I found myself in another whirlwind of doctors, all of whom wanted to do surgery. I didn’t know where else to go, and there seemed to be no alternatives. Not only had my curvature worsened – much more than 5%, increasing from 35 degrees to 68 – but I had also ruptured several discs and the nerves were impinged. Information about non-invasive treatments besides hard bracing was non-existent, and I was well past hard bracing as an option.

Scoliosis Surgery

Hyjek xraySurgery was imminent and, I thought, unavoidable. My fear allowed me to fall in line with the doctors’ prognosis without questioning it. I prepared myself, made sure I understood the procedure, and tried to control my fright. Since my prominent curve was lumbar, this surgery fused L3-5, with short Harrington rods and screws.

I had no idea this surgery would be the first of many. I may be dating myself referencing this commercial, but it’s true. Scoliosis surgery is like Lay’s potato chips. As the commercial says, you can’t have just one.

The first surgery went well and after three months of intense rehab, I was doing great. Being a gym rat and a PT frequent-flyer, I welcomed being able to work my body again. But a year later at my check up, my doctor saw that my back had continued to curve above the fusion point and was now back above 60 degrees. I had been warned that a long-term complication of the surgery could be degeneration above and below the fusion point, but I didn’t expect the curvature to continue, and I didn’t expect more damage within a year. Now, I had five more ruptured discs, again with nerve impingement.

A Second Surgery

Surgery loomed yet again. Once you start down the surgical path, there’s very little you can do to change it. Other options become unavailable, and you’re faced with no choice but to go through life-threatening procedures. In my second surgery, the doctor wanted to use an experimental apparatus, similar to traditional Harrington rods, but made so the ends would drill into my hips. This would anchor the spine with the hopes of halting the curve, fusing my spine from the middle of my back all the way to my tail bone, T10 to S1, nine vertebrae. A separate device, called a BAK cage, was used to fuse the last lumbar and first sacral vertebrae.

After six months of extremely intense rehab, I actually did pretty well, although it seemed to get harder and more intense with each surgery. It seemed I was becoming the poster child for scoliosis surgery. But a year later, the challenges apparently weren’t over.

Surgical Complications

At my annual check-up, my doctor saw that one of the rods had cracked. Yes, a titanium rod the size of a pencil cracked inside me. Because the rod didn’t actually separate, it became a wait-and-see for as long as possible to allow the bone to fuse. If we waited, there was a chance we could remove the rods and not have to put in new hardware. Otherwise, I was looking at a repeat of the previous surgery.

So we waited. I lasted another couple years, with constant monitoring and more physical therapy. I was in PT so much that there should be a plaque at the office and a wing named after me! Eventually, though, the rod separated and the entire apparatus became unstable and could be manually moved in my back. Even my physical therapist was shocked and concerned. No amount of PT could change the outcome. Now, it was urgent to remove the rods.

I got lucky! When the doctor removed the rods, he felt the bone had fused enough that new hardware wasn’t necessary. After that, I worked even harder physically to keep my body strong and stable.

Physically, I was strong, but emotionally, I was scared. The pain was still there, too, and I had to find a way to manage it. I didn’t want to go down the pain medication path. The pills made me feel sick, groggy and lethargic. There had to be another way.

I began to notice a mind/body connection – a direct two-way communication between the brain and the body, the understanding that I was more than just my physical body. I saw that my physical body impacted my emotions, and my emotions impacted how my body felt. I had to find a whole-body approach to healing. Dealing with the emotional aspect of the pain – the fear, anger and stress – would help me to manage it.

My search for answers started with a book by George Epstein about medical imagery, which led to learning more about meditation, energy therapies, and the benefits of therapeutic massage. I explored and experimented, and tried Rolfing, sacral-cranial therapies, Feldenkrais, biofeedback, acupuncture, Alexander technique, trigger point therapy and more. (Thankfully, I stopped short of ear candling. Yes, it’s as bad as it sounds.) I also found Pilates, yoga and aqua therapy.

One day, my personal trainer asked me if I might consider making a change and becoming certified as a personal trainer. A few days later, my physical therapist told me he thought I could use my experience to help others like me. Sometime after that, my husband said, “You spend enough time at the gym, maybe you should work there!” It sounded like destiny to me!

The Beginning of My Personal Training Career

So, I dumped my 25-year career in corporate marketing and became certified as a personal trainer, with specializations in spinal stabilization, chronic diseases, orthopedic disabilities and nutrition. I looked for in-depth training in a whole-body approach, became a Reiki master, meditation teacher, hypnotherapist, and graduated from the Advanced Program with the Center for MindBody Medicine. I was armed and ready, and I was my best client!

Through those years as a personal trainer and mind/body coach, I was honored to be able to help many people dealing with a variety of medical challenges. There were a lot of clients with back problems, but I also trained clients who had strokes, neurological disorders, and knee, ankle and shoulder injuries. My client list also included people who, unlike me, really did have lupus, rheumatoid arthritis and fibromyalgia. They called me Ellis Island (Give me your weak, your tired…) and said the handicap access door led directly to me. My claim to fame is that I trained a client with no arms or legs. (Long story for another time!) What these people all had in common, and how I could really help them, was that they were scared, too. Dealing with their pain and the fear of whatever disease or injury they had was just as challenging for them as the physical issue.

I was passionate about my new career and felt like I was really making a difference. I worked with so many incredibly courageous, hard-working people. With the urging of my clients, I produced a meditation CD, Moving into Grace. The meditations on the CD use the imagery of gentle movement to help the listener feel release and relaxation. By imagining movement in the mind, people can experience the freedom of movement in their bodies, and it’s a wonderful feeling! My clients were an inspiration to me and continually helped me on my own path to healing.

But my journey wasn’t over. There was much more to come.

What has your scoliosis journey entailed? Please share your story in the comments below.

Check back for the rest of June’s story. In the next segment, she talks about her last round of surgeries and how the experience motivated her to write her books and gave her a new purpose to help others understand what it’s like to live with scoliosis.

11 comments on “Living With Scoliosis: A Scoliosis Patient’s Journey to Find Healing”

  1. 1
    Denise Janik on April 13, 2017

    I am a 57 yr.old female and was diagnosed w/ scoliosis when I was 14. I wore the back brace for a little over a yr. And I’m sure you know the look I got 1st. Yr. Of high school and now I have degeneration, torn discs, and. Now arthritis in my back. I can’t GET a good night sleep no matter what. My tolerance 2 pain MEDS is high but after 30 yrs. Of meds, because of other people’s republic abuse the cannot raise the small amount I’m on. The Drs don’t realize the pain we are in. Shorter on 1 side, depression, living on disability n a half broken down car n no money, I st all day on my heat in Az. I’m so frustrated and feel what’s left in life. Um NOT suicidal, BUT I wish everyday GOD would take me. Pt is Only temporary, so why bother, I’m too sore now to do anything. How DO YOU DO IT? I refuse surgery at this stage n age of life, so where’s the hope? WHY don’t THESE pain Drs understand their own field. If they were in the pain we are maybe that would help. Anyway thanks for sharing your story n GOD BLESS YOU.
    Sincerely
    Denise Janik

    1. 2
      June Hyjek on May 18, 2017

      Sorry for the delay in responding, Denise! I’m so sorry you are going through such pain. For me, it’s partly meditation and regular massages, but mostly it’s a perspective on pain. Pain is just a sensation, no different than tickling. For some people, tickling makes them giggle, while others squirm and hate it. It’s the same sensation, so why? It’s because of the emotion we attach to the sensation. So when I’m in pain, I ask myself if it’s an alarm that says something is wrong and I need to do something to fix it. If not, I acknowledge that it’s there, but I don’t attach any emotion to it. I don’t get upset, angry, fearful, or anything. And it always subsides. This takes practice, but it works. Our brain is hard-wired to think that pain is always an alarm — which kicks off fear that something is wrong and anger that it is happening to us. But if we understand that chronic pain is not an alarm, we can choose to not react to it with negative emotions and let it go. Does this help?

  2. 3
    Adeniran Jude on May 17, 2017

    My name is abiola,A Nigerian Am writing on behalf of my younger brother.Adeniran Jude. He is 17 year. He has been on dis ailment for 3 yrs now,several called it different names until recently last year 2016 we got to know it’s scoliosis at (UCH) University college hospital Ibadan in Nigeria. It has been a shame for him,emotional depression and low self esteem among his colleague pls what else can we do. Our parent have spent a lot on dis case all in the name of moving from one hospital to another pls tell us what to do again cos we have several medications on him. It’s not bringing positive result. Thanks for the experience shared

    1. 4
      Dr. Josh Woggon on May 17, 2017

      Hello,
      Thank you for sharing! My heart goes out to your brother. Would he be able to travel to the United States or to Madrid, Spain? We have CLEAR doctors in both areas. If you get in touch with a CLEAR doctor and send them your brother’s records and x-rays, they may be able to help. https://www.clear-institute.org/find-a-doctor/
      Best wishes for his health and recovery!

    2. 5
      June Hyjek on May 18, 2017

      Hopefully, you saw my reply to Denise. I’m sorry your brother and your family are going through this. Please also try to see a doctor from The CLEAR Institute for treatment. I’ve found medications don’t help, and in fact generally make things worse. Meditation can be very powerful. And believe or not, movement is really helpful. He may be in pain, but he’ll feel better if he exercises (raises the feel-good hormones and gets the blood flowing through his body). Dealing with this condition, like many other challenges in life, is about accepting what is happening and not railing against it. It’s about choosing to let go of any negative thoughts about it. Then you have the energy and presence of mind to take real positive action. Tell your brother I wish him well!

  3. 6
    Susan Majerus on May 17, 2017

    I am a 69 yr old female who was diagnosed with mild scoliosis as a child. In my late 40’s I started to develop pain in both feet and was later diagnosed with diabetes which I have been able to control with diet. The pain in my feet got worse and I was diagnosed with diabetic neuropathy. I have had back pain for ages and have recently been diagnosed with severe scoliosis curving to the left side. I was told that was more concerning since it could potentially affect my heart and lungs. The past 2 yrs I have done several sessions of physical therapy trying to build up strength. Initially some were so painful I quit right away. Some were initially helpful but I always ended up with a new pain in another part of my body. The last time this happened was just a couple of months ago and I decided I wouldn’t do PT anymore. I feel like just sitting but I know this isn’t healthy. Thank goodness I have a little granddaughter who keeps me moving at least a couple of days a week! I cannot stand for more than a few minutes and I use a walker when I have to go anywhere, I get frustrated, sad and depressed but my faith always turns me around and gives me hope and the ability to see the joy in life. I am thankful for your article and look forward to hearing the rest of your story

    1. 7
      June Hyjek on May 18, 2017

      Children are sometimes our best medicine! Keep moving, Susan! Also, don’t give up on PT. It sounds like you just didn’t get a good one. Look for someone who has experience in manual manipulation, knowledgeable about Scoliosis and is focused primarily on spinal issues. Good luck!

  4. 8
    Selma on May 17, 2017

    Hello. I am a healthy 81 year old retired RN. I too was never screened for scoliosis. However, as a young student nurse, I experienced some back pain and was told at that time I had one leg shorter than the other. Over the years I gave birth to 4 children and worked for 30+ years as an ER nurse without any severe persistent back problems. I retired in 1998, stayed active, walked daily, gardened and also was able to play some golf but slowly year by year my back started bothering me more and more. Doing some research on my own, I requested screening for scoliosis and that is how it was diagnosed. I do yoga and stretching almost every morning and that does help. I take Ibuprofen twice a day with food and that helps too but often the pain persists. As I said, I feel healthy otherwise even though my activity level is/has been slowly changing. Moving, stretching, yoga and ice are what helps me the most but there are times I’d just like to sit but I know that is not good. I have found that if I neglect my morning stretch routine more than a day or so I will definitely note an increase the pain. I plan to order your meditation CD. And thank you so much for your story, hearing from others is quite helpful.

    1. 9
      June Hyjek on May 18, 2017

      Thank you, Selma! I was going to tell you to try meditation for those times when you feel like all you can do is sit, but then I saw you were going to get my CD! I hope you’ve gotten it by now, and I hope you like it! Bravo to you for doing yoga and a consistent stretching routine!

  5. 10
    Jo Blick on May 18, 2017

    Hello everyone. I want to echo June’s approach and to encourage anyone with scoliosis, whatever age, to try to imagine their own posture at all times and get as much information they can about their own curves and muscle imbalences (you can usually tell a lot by feeling the hard, bulging stiff muscles and the rib-humps that develop)
    I am 54 and despite being told I was going to have to have a 12 hour total back-fusion 6 years ago, I have managed to stabilise my curvature and reduce the major curve by 7°. I am partly disabled by scoliosis, but only because I did not understand it earlier on in my life. As a child in the 1970’s the attitude was ‘surgery when you’re older and you will be disabled’ This is NOT TRUE.

    Build a picture of yourself. Spend every waking hour correcting and re-correcting your posture. Use every single trick you can to force your wonky brain signals into sending the correct ones.
    Whilst working out at the gym is great and if you can afford to do that
    go for it -you are very lucky. Many without good health care systems don’t have the time or the luxury of gym or physio. I can if I chose to, because I live in France, but I am busy trying to work and prefer to use what the frecnh call “ergotherapy” which is excercising whilst doing everyday activities. I feel this has worked best for me and is a good approach for scoliosis because the muddled brain signals that cause scoliosis are “autonomous” (not within conscious control ) which means if we practice our posture whilst doing other things, the brain will be tricked into retraining itself. Do this while young enough and a full recovery is possible. Do this as an adult and your pain relief and chances of living a good life without surgery or despite failed surgery, will be a lot higher. My advice is to google and teach yourself all about it. Only by understanding your own curves and being determined to help yourself treat it, will you find out what’s best for you.

    1. 11
      June Hyjek on May 18, 2017

      Excellent advice, Jo! Bless you for sharing your story!

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