Please welcome guest blogger Jess Roe, who has agreed to share her experiences and knowledge of the treatment of craniocervical instability using Altas Orthogonal Chiropractic and physical therapy. Many people think surgical intervention is the only way to go, but it simply isn’t true. Physical therapies can have a huge impact on creating new stability and managing this condition. I myself manage what I suspect to be CCI or mild chiari with specific PT movements I developed over time working with multiple therapists who specialize in treating the head, neck and spine. Enough about my journey. You’ve heard it all before. Here’s a fresh perspective from Jess Roe!
I was diagnosed with craniocervical instability in 2011, long before hypermobile Ehlers-Danlos was ever a word in my vocabulary. My journey started with chronic joint pain, migraines, and a bizarre tailbone pain that has never been fully explained. Today I want to share my story and how Atlas Orthogonal Chiropractic and Physical Therapy have been instrumental in giving me back my life.
My hypermobility disorder went undiagnosed my entire life. In fact, it will be another month before I meet with a geneticist to confirm it really is Ehlers-Danlos Syndrome. Either way, I am certainly hypermobile. This compounded with my extremely inactive childhood and resulted in very weak muscles which have ultimately failed to hold my skeleton together, especially through two pregnancies. Never mind the fact that I tried playing rugby in college, which certainly made things worse.
In 2011, I started experiencing an excruciating ripping sensation on my tailbone when I would bend forward. The pain was so intense that I was terrified to even put my shoes on. When I went to an urgent care, the doctor told me my right hip was noticeably higher than my left. A friend recommended his chiropractor who had been successful at helping him minimize his multiple sclerosis symptoms for some time.
He sent me to an Atlas Orthogonal Chiropractor, which is very different from the chiropractors most of us know about. This branch of chiropractic focuses on the alignment of the atlantoaxial joints of the first two vertebrae which support the skull. The Chiropractor explained to me how misalignment of the atlas vertebra can cause the shortening of one leg due to how the connective tissue of the body behaves. Everything is connected.
This made perfect sense when I started thinking about the pain pattern I’d been experiencing. My migraines always presented on my left temple, extending down the left side of my neck and into my left shoulder. The pain and tightness continued down through my right hip and leg which happened to be the shortened leg.
My Atlas Orthogonal Chiropractic Treatments
The Chiropractor started by doing x-rays of my neck, which made me feel even better about pursuing this treatment option. She was adamant that she would not adjust anything without being able to see what was actually going on first. The x-rays showed a misalignment of my atlas vertebra, and compression of all of my cervical vertebrae which was a result of my extremely weak muscles.
She began treatment right away. Atlas Orthogonal Chiropractors use a special instrument that sends a vibration directed toward the atlas vertebra to correct its alignment without using manual cracking techniques. This means it’s a very small, very precise adjustment that is much safer for the delicate musculoskeletal and nerve structures within the neck.
I received adjustments 2-3 times per week for about a month until my neck started holding the alignment, then slowly scaled back to once per month.
Within one week, my tailbone pain was gone and it has never come back. For the first year, I would only get migraines when my neck lost alignment. But after a while, the migraines have disappeared too and now I only experience general aching along my particular pain pattern when I lose alignment.
I usually don’t hold alignment longer than a month or two if I’m lucky. My chiropractor and I always suspected there were other factors at play that affected my ability to hold alignment. My diet, hormones, and weak muscles were all possibilities. But given my background as a Corrective Exercise Specialist, I decided to first address the obviously weak muscles of my neck.
Adding Physical Therapy
Unfortunately, as happens far too often, my first round of physical therapy, which focused solely on my neck, was completely useless. I did my best to stay active and I tried to apply my own training to helping my body heal, but after my second child was born, the pain became unmanageable.
I think it’s times like these that people begin to lose hope with craniocervical instability, chiari malformation, and hypermobility disorders like Ehlers-Danlos. I know I did. But I knew that at the age of 29, I SHOULD expect my body to feel better, and if I looked hard enough, I WOULD find a way.
Around this time, I started talking with other professionals and one person mentioned Ehlers-Danlos as a possibility. With that one name, everything clicked. I was right that I couldn’t hold my alignment because my muscles were so weak. My chiropractor was also right that my hormones and diet were negatively impacting me. But understanding that it was a hypermobility disorder that can affect multiple systems of the body dramatically changed my approach. And I knew I was going to need help.
A friend, who happened to be a Physical Therapist, suggested that I come to her clinic where the PT’s were far more knowledgeable about treating problems that affect the body as a whole. I started physical therapy in January of 2018 where my PT confirmed that I am extremely hypermobile.
Interestingly, my physical therapy initially started by addressing my extremely weak hip and core muscles. As I improved, we started working up my spine to strengthen my upper body and neck. Addressing my hips and core before my neck was absolutely critical because all of our movement comes from the core. The hips and core are the foundation for the rest of the spine, so misalignment and instability there will doom any adjustments further up.
Adding in pelvic physical therapy was also a critical step because my pelvic floor was overactive and damaged. When the external hip musculature is weak, it is common for the deeper muscles of the pelvic floor to become overactive in an attempt to bring stability to the joints. Pregnancy and childbirth also place major stress on the pelvic floor and create issues that can often be resolved from proper treatment and physical therapy. In my case, my overactive pelvic floor was exacerbating all my symptoms by preventing my hips and core from being the strong foundation my neck needed.
Combining Atlas Orthogonal Chiropractic with Physical Therapy (as well as an elimination diet and supplements to address my gut and hormone issues) has been the best treatment option for me personally.
How AOC & PT Helps
Atlas Orthogonal Chiropractic maintains my craniocervical alignment which does more than managing pain. It ensures proper flow of blood and cerebrospinal fluid to and from the brain which dramatically decreases POTS symptoms and improves brain function while protecting from other neurodegenerative diseases like Parkinson’s, Multiple Sclerosis and Alzheimer’s. Proper vertebral alignment also corrects any nerve impingement which can cause pain, weakness, and a host of other issues throughout the body like poor gut function and motility! For me, this therapy eases my body and mind’s overall perception of stress so I feel so much better mentally, emotionally, and physically.
Physical therapy combined with my own expertise, has not only strengthened my body and managed my pain, but it has given me an incredibly positive and trusting relationship with my body. I now know how to listen to my body and can live the active lifestyle I always wanted.
In the last year, I have experienced improvements that doctors had previously told me were impossible. Doctors told me I would never be able to run a mile, yet here I am, exercising and running daily. In fact, in 2019, I ran a 5k and a 10k. And I’ll be running some more in 2020. Not because I want to prove I can. But because the exercise and running feel GOOD in a way that I know is beneficial to my body.
Yes, I still have a ways to go and some days are worse than others. But most days I have plenty of ENERGY to do (almost) everything I want. And when I don’t have energy, I have the tools and support I need to quickly bounce back. Most importantly: I am the mother, wife, and friend I always wanted to be.
While this has been a long, slow, often frustrating journey, I am immensely grateful that I have met the right people and found the right therapies and tools that empower me to live the life I want. I’m so glad that I have learned to listen and care for my body and in return my body has shown me that it is capable of so much more than anyone ever gave it credit for.
Rosa, S. & Baird, J.W. (2015). The Craniocervical Junction: Observations regarding the relationship between misalignment, obstruction of cerebrospinal fluid flow, cerebellar tonsillar ectopia, and image-guided correction. In Smith, F.W. & Dworkin, J.S. (Eds.), The Craniocervical Syndrome and MRI (48-66). https://doi.org/10.1159/000365470
Jess Roe is a Mom of two and a Health & Fitness Coach who specializes in helping families create a healthy lifestyle that works for them, especially when navigating chronic illness, pain, injury, and other life events like pregnancy. You can find her at StudyInFitness.com.