ID: An image of a skeleton from the nose to just under the ribs below the title Complex Subluxations. New Blog Post sticker in the lower right corner.
The subluxations (partial dislocations) caused by Ehlers Danlos Syndrome can leave impacted joints vulnerable to a repeated subluxation as well as affect other joints and body structures. When many joints in one area have suffered previous subluxations, that area may become unstable. A subluxation in one joint may cause a compromised, nearby joint to also sublux. This can lead to a domino effect, leaving many joints out of place. Sometimes a subluxation can cause secondary issues like inflammation that can be just as challenging to manage as the original injury. My previous individual subluxations in my upper torso have led to complex subluxations.
Personally, subluxations of my neck and spine have been more complicated than other subluxations. For example, my frequent, recurrent shoulder subluxations can affect my pain level and Dysautonomia, as well as my spine and jaw. But my neck subluxations can affect my cognition, hearing, swallowing, in addition to my jaw, spine, shoulders, and ribs. Some groups of joints are more interconnected than others.
I dislocated my right shoulder as a kid snowboarding. It’s one of only a few complete dislocations. Since then, it has often subluxed to different degrees. I have learned to be able to tell when it’s out and can usually reduce it (put it back in place). Many years ago, it was regularly slipping out while I slept. I’ve built up some strength since then but it still subluxes multiple times a week. In high school, I began serious, classical voice instruction. At this point we realized my jaw was subluxing significantly enough to cause “hearing loss” in my right ear while I was singing. The subluxations were causing inflammation around the eardrum and canal causing hearing changes that were especially notable while singing. My ears were fine, but the inflammation and subluxations were affecting my body’s ability to send and process my hearing. During my senior year of college I was diagnosed with atlas orthogonal misalignment. The atlas vertebrae is the first vertebrae. It is shaped like a ring, and your head rests on it. I had been experiencing headaches, confusion, vomiting every morning, and sleeping 18 hours a day. Due to these prior shoulder, neck, and jaw subluxations, my upper torso can be vulnerable to complex subluxations.
A few months ago my caregiver said that one side of my face looked swollen. Upon seeing my physical therapist later in the week, he remarked the swelling could be due to the way my shoulder often hangs low in the joint and the misplaced weight had possibly pulled the jaw out of place. These joints are all interdependent. When many of them have had prior subluxations, the likelihood of one affecting another increases. Over the last five years I’ve begun experiencing more esophageal issues. I have fractured peristalsis (uncoordinated swallowing), paradoxical vocal folds (the vocal folds can briefly connect, sealing the throat), and dystonia (spasms). These types of symptoms can be caused by both Ehlers Danlos Syndrome and Dysautonomia. They can also be caused due to a current spinal subluxation or inflammation from a previous subluxation. Now it’s become a complex chain of faulty joints that can affect other organs and systems.
I recently had a colonoscopy and endoscopy. This is my second colonoscopy and third endoscopy. Before the procedure the team was careful to make sure I was safely positioned, based on prior subluxations. They used propofol and fentanyl for anesthesia and a bite block to ensure that they could get the endoscope in my mouth while I was unconscious. When I woke up I immediately realized I had bit my inner lip significantly, enough to break the skin and leave an injury about one inch in diameter. When the meds wore off five hours later I began sobbing in pain. I realized that my neck and jaw were subluxed. And because they had to lay me on my left side, the vertebrae had rotated in the opposite direction than I was used to and the “good” side of my jaw was subluxed. I was still able to reduce them, but it took me an hour to get them both in place and find a position that I could lay in where they wouldn’t slide back out. These are essentially new subluxations because they are creating a new subluxation pattern. These all seemed like separate issues, until they weren’t.
Subluxed ribs are a common experience in Ehlers Danlos Syndrome. I have been experiencing them somewhat regularly over the last two years. But usually only 2-3 times a year. A few weeks after the colonoscopy I noticed pain in my ribs. This felt like nothing I had experienced before. Looking in a mirror, it was apparent that one side of my ribs was depressed and looked caved in, the other side was protruding and there was a pad of significant swelling above it. Luckily I had an upcoming appointment with my doctor of osteopathy who specializes in spines. This doctor performs very gentle manipulations that guide me toward better alignment. She is a trusted physician who has been working on my body for at least 5 years. She is a very careful doctor with a measured approach, often opting for the most conservative treatment plan. Osteopathy is based on the idea of the body’s innate ability to heal itself. When she saw me, she seemed shocked. It was days since I had first noticed the swelling and my ribs were still visibly misaligned. As she performed my treatment, she discussed how spinal fusions can be incredibly helpful for some people with severe hypermobility. She acknowledged that surgery is not ideal for patients with EDS but still thought I should keep it in mind.
It’s clear to me now, that these are all related. The colonoscopy injuries led to the new rib issues, but only because I had underlying rib issues. The recent shoulder subluxations pulled my jaw out of place, because my jaw is used to being out of place. I’m also aware that the more these subluxations happen the more likely they are to happen again. This is just my personal experience, which can be very similar or wildly different from many other Ehlers Danlos patients. Each individual patient’s experience with EDS varies significantly. It can be hard to imagine how this illness affects each of us. I hope this begins to highlight the complexity of Ehlers Danlos Syndrome.
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