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.

One comment 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

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