June is National Scoliosis Awareness Month and in the past few months, I’ve had a few experiences related to my scoliosis and my 20+ year journey with chronic pain that made me want to share my story with you. If you have scoliosis or chronic pain or know someone who does, I hope that my experience and this information will be interesting or helpful, or make you think differently about these conditions. For those who don’t know, scoliosis is a sideways curvature of the spine that occurs most often during the growth spurt just before puberty. Conditions such as cerebral palsy and muscular dystrophy are cited as scoliosis causes, but for most people, the trigger is unknown.
Dealing with Scoliosis Symptoms — And a Whole Lot More
My scoliosis symptoms appeared around age 11, which was coincidentally (or not) when I was diagnosed with Lyme disease AND right around when I had four adult teeth extracted from my mouth to “make more room.” This practice would never be done today, as orthodontists agree that teeth provide a structural foundation for a body, and removing some of the beams of the building would provide instability (great, thanks, glad you guys figured this out after you took mine out!).
When you look at pictures of me as a little kid, I have crazy hyperextension in my legs. It’s clear from these pictures that I have hypermobile joints, which also means I have loose ligaments (aka ligamentous laxity). The conventional healthcare system has no real answers as to why this happens to kids — other than “you’re born with it” — but one of the main issues of hypermobility is instability. So extracting those adult teeth was like taking a sledgehammer to an already weakened structure. Along with my hypermobility and teeth removal, I was also dealing with a new Lyme diagnosis (which is also very connected to joint pain). And that’s when the scoliosis symptoms set in.
Once a curve begins to form in your spine, it can’t really be corrected. Some doctors say that a back brace helps stop the curve from getting worse, but even this isn’t always effective. Severe scoliosis is when the spine just doesn’t stop curving, and the conventional treatment for that is the Harrington Rod surgery (literally putting a metal rod in your spine to stabilize it and stop it from curving). One of my best friends from high school had this surgery when she was 15, and it has been a big part of her life ever since. She was given opioids for the pain, was out of school for over three weeks, and today there are many physical things she cannot do because of the rod. That being said, she stands up straight and who knows how bad her scoliosis would have gotten. The surgery may have been the best way to go.
I find scoliosis fascinating because the conventional healthcare community is so unaware and seemingly unconcerned with the root cause of why it happens. Once you have it, there is no talk of actually trying to reverse it.
Looking for Scoliosis Treatment that Works
As you can imagine with my teeth out, scoliosis forming, loose ligaments and joints, and my Lyme disease diagnosis — oh and did I mention I am also flat-footed? The fun keeps coming! — I began to have a lot of chronic pain, specifically in my jaw, neck, shoulders and back all the way down to my hips. The low point would be my jaw getting so off-hinge that I would chew on the side of my cheek until it bled. The only way out of pain would be an emergency visit to my chiropractor who would get into my mouth and adjust my jaw so that it straightened out. I used to go to the chiropractor constantly because after every adjustment, I felt better and my cheeks would stop bleeding. But within a week or so, I was back to feeling like my jaw was crooked and having a lot of pain in my neck, shoulders, and back.
I have tried many methods of chronic pain and scoliosis treatment over the years, both conventional and integrative: Thai massage, Alexander Technique, chiropractic care, a private yoga teacher who focused on scoliosis specifically. I’ve done stim with a PT when I was in college at Johns Hopkins down in Baltimore. I even saw a spinal surgeon at one point in college, who did not see anything besides a slight curve in my spine. After college, I took more extreme measures and decided to get my entire bite realigned, hoping that it would put my jaw in a better position and prevent it from getting out of alignment so frequently. This required REAL, METAL braces, when I was 24, for over a year.
At the time I was working at IBM and interacting with some of IBM’s biggest clients as I was working on sponsorship marketing. I remember I spent a whole summer giving tours and explaining our technology at the US Open tennis tournament in NY to the top brass at JP Morgan, Louis Vuitton, Moet Hennessy, and Estée Lauder, among others. Needless to say, it was pretty embarrassing doing this with braces! As if I didn’t look young enough. After the braces came off, this neuromuscular dentist I worked with did a test with STIM and was able to see where my natural or optimal bite would be, and then cemented onlays to my bottom teeth to create a lift and put my jaw into this optimal position. I will likely have these onlays in my mouth for the rest of my life. I thought all my pain would go away after that — it didn’t. It did get better, but by no means went away.
At that point I was moving to Chicago for business school, and put all of this on hold as far as trying to figure out the root cause or get out of pain. I’d lived with it for so long that I was pretty used to just managing it, plus I was discouraged by the jaw realignment not relieving all the pain. When I got back to New York from Chicago six years ago, I went to a conventional orthopedist and asked for an X-ray of my spine. It had been ten years since my first spinal X-ray down at Johns Hopkins, so I wanted to see if the curve had gotten any worse or remained the same. The experience was at best comical, at worst, horrifying.
First, I filled out over 25 pages of questions in the waiting room. At some point, I just gave up and told the receptionist I’d explain it to the doctor when I saw him. Once I saw him, he told me that my scoliosis was not that bad, only a 15-degree curve. Many of his patients with a 15-degree curve had very little pain if any, so something else had to be going on. I was both elated to hear this and also a bit bummed since I had always blamed my pain on my scoliosis. If it wasn’t just that, or if that wasn’t the primary driver of the pain, what was it?
I told the doctor about my hypermobility and how when I got into bad jaw pain, I would go to the chiropractor who would adjust my sacroiliac joint or SI joint (those two little points at the bottom of your back above your butt) and my hips, pelvis, and jaw would realign. He said he’d never heard of the jaw and SI joint/hips/pelvis being connected, but that he would treat me as if I had instability in my hips/pelvis/SI joint.
He then gave me a few suggestions about what to do next: first, he ordered an MRI, then he suggested I do this treatment where they would burn the nerve endings off the bottom of my spine, and then wrote a third thing I couldn’t understand. Being who I am, I inquired as to the necessity of the MRI — what exactly was the reason for this and did I absolutely need it? — and he stammered and eventually admitted that I didn’t really need it. Then I inquired about the nerve-ending procedure.
Chinese medicine practitioners believe that energy flows throughout the body, so cutting off feeling in the middle of the body (the bottom of my spine) would stop the flow of the energy from the top half of my body to the bottom. Also, burning the nerve-burning would never help me figure out the root cause of the pain — and whatever that root cause was, it would continue to get worse, even if I couldn’t feel it because I’d stopped the messaging from my brain to the nerve and vice versa. Before I explained why I thought this was a terrible idea, I asked, “Okay, so say I do this nerve-burning treatment and I still have pain. Then what?” He said, “Oh, well that third thing I wrote down is what you’d do next.” He stopped abruptly and asked, “Have you had children?” I told him no. He proceeded, “Okay, well you’d have to have C-sections for any children you birth, but that’s fine.” Turns out that the third procedure involved bolting my pelvis together with screws to provide stability.
My eyes almost fell out of my head. I said, “I’m sorry what? Come again?” I then went on to explain to him my interest in finding the root cause of my issues and if I couldn’t, or until then, to treat my pain with natural methods, sans side effects. This kind of surgery and having to have C-section births could have so many unforeseen negative consequences it made my head spin. AND at the end of it, I might still have pain because he wasn’t 100% sure it was even my hips or pelvis causing the pain! I thanked him for his time and left the office bewildered. I threw out all the prescriptions he gave me — the MRI, the nerve- burning treatment, the hip bolting surgery — and never went back.
Finding a Natural Way to Treat Chronic Pain
Around that time, my chiropractor recommended a woman who did something called myofascial release massage. It’s about the most painful massage you can imagine, but I love it because it feels like she’s really making a difference. I began going a few years ago every two weeks for an hour and I also began seeing an acupuncturist who focused specifically on my back pain and uses the needles to “pop” muscle tension and fascia in my back, hips, head, neck, and shoulders.
Somehow, the combination of these two therapies has kept me out of extreme pain for the last year. I went to my chiropractor recently and he was shocked at how long I had gone without seeing him. I feel so lucky to have figured this out. I have not figured out the root cause of my pain and I still have it — sometimes it’s worse if I’ve been sitting for a long time or don’t do yoga enough — but generally, it’s manageable.
One interesting thing I haven’t addressed that just came to my attention over the past few months is an emotional and trauma component. Earlier this year, I did something called Emotional Freedom Technique, or EFT, after interviewing Kelly Gores, the filmmaker of the documentary Heal. I had no idea what to expect, but what happened was pretty remarkable. The practitioner asked me to tell her if I felt any pain in my body, and then tell her any memories connected to it. I mentioned my scoliosis and tried to think of some memories related to it.
Three sessions and two giant sobbing emotional releases later, it became clear to me for the first time in my life that my pain was also linked to some painful things related to my relationship with my mom around age 11. I had never considered this, and after I finished my package of sessions with the EFT therapist, I went on with my life and didn’t go too much further into these traumas, or their connection to my chronic pain. A month ago, my husband and I watched a documentary called All the Rage about Dr. John Sarno, a former rehabilitation physician at NYU and author of Mind Over Back Pain (who actually died days before the film’s release, at age 93). It’s a remarkable film, as this man changed SO many people’s lives.
Howard Stern and Larry David were interviewed for it, as they had been patients of Dr. Sarno’s and swore his care had eliminated their debilitating pain and changed their lives. Tens of thousands — or perhaps maybe millions — of people around the world believe his book did the same. It’s an amazing topic (let me know if you’d like me to do a whole article or podcast episode on it and what you’d like to know! Obviously I can’t have Dr. Sarno as a guest, but he has a few disciples so perhaps I can get them on if there’s enough demand!). The short version is that pain is as much caused by repressed and unconscious or subconscious emotional trauma as it is by physical deformity.
Between my EFT work and the documentary, I’ve begun to think very differently about my pain, and I’m determined over the next few months to do the difficult emotional work he talks about in his book. I’m hopeful that I can undo some of this pain without crazy nerve-burning treatments, surgeries, or even having to go to acupuncture and myofascial release therapy as often as I do.
I’ve said this a hundred times and I’ll say it a hundred more, health is a journey. There are no quick fixes, but I am as determined as ever, even after dealing with chronic pain for more than twenty years, to get to the bottom of it and heal the root cause. If you’re struggling with chronic back pain (or any other pain) schedule a 1:1 discovery call with me to learn about my holistic patient advocacy services. I can work with you to get to the root cause of your issue, explore your options, and start healing.
The recovery story above is anecdotal and specific to this particular individual. Please note that this is not medical advice, and that not all treatments and approaches mentioned will work for everyone.
Do you have chronic pain or scoliosis? What have you done for it? What has been effective? What was the root cause? I’d love to know, so please share in the comments section at the bottom of this page!