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Spinal problems never run on short supply for a person with Ehlers-Danlos Syndrome (EDS) or another Hypermobility Syndrome Disorder (HSD), conditions which cause a person to produce weak, faulty collagen. Collagen is often described as the glue that holds our bodies together. Over 80% of our bodily tissues are comprised of collagen,from our skin, hair, nails and joints, to even our bones, organs, and muscles. Everything has some collagen in it. Our spinal columns are comprised of many tiny bones which are stabilized and cushioned by collagenous formations known as discs and the whole Jenga party is kept together by various connective tissues (see the diagram to the left). All of these structures are comprised of… you guessed it: Collagen. In people with EDS/HSD, naturally these structures will be weak and prone to early degeneration, leading to a life of instability and easy injury, chronically dislocating vertebrae that pinch nerves, impinge the natural movement of fascia and other soft tissues, abnormal bone growth that cause tears in the surrounding tissue and even a collapse of the structures which hold the skull in place at the top 3 of the spine, creating craniocervical instability and chiari malformations.
Wins and Losses in the Jenga War
My spine began breaking down quite young and I suffered back pain regularly as a teen. I herniated my first disc as a nineteen year old working as a certified nurse’s aide in a full service residential program. I lifted a patient and nearly ended up on the floor, crippled by pain.
I was told by the urgent care doctor they sent me to that I was young. I couldn’t possibly have done any damage to my spine. I must have just torn the muscles on both sides of my spine. He gave me pain pills, an order to rest for a week and sent on my way. It took 4 weeks before I could even think about getting back on my feet. I tried returning to my job 3 times, only to realize my career in nursing was clearly over, as any little thing now re-injured my back and doing my nursely duties was no longer feasible.
It started an avalanche of back problems that would be occasionally medicated and rehabbed, but never imaged or properly examined to see why I was in so much pain until I was in my thirties. By then, I had herniated discs and signs of deterioration throughout my entire spine that had been repeatedly ignore because I was “too young.”
The fact that pain in young people, most especially young women and women of color, who face constant racial bias and neglect from our healthcare system, is a major sticking point for me. I may never stop rehashing how neglected I was by the medical community or those closest to me who couldn’t bother to support me enough to believe in or fight for what I needed in those early years. I could be living a different life had a single person taken me by the hand and said “I believe you. Let’s see if we can get to the bottom of this.” We have to keep voicing these things until the day the problem no longer exists.
These problems are ten fold when you have a chronic illness. So here I am, sharing products like this one and talking to other women about ways of healing, because the system that’s supposed to help us is failing. While I personally have better doctors than ever before, they still aren’t trained well enough to evaluate me properly for craniocervical instability or Chiari malformation, even though they know I’m an excellent candidate for these conditions. I don’t even lived in an isolated rural area. Kentucky may sound rural, but in reality, I live 15 minutes from Cincinnati, Ohio where there’s a very good medical teaching university.
I don’t have the answers to these complex problems other than to do my best to learn for myself and care for this wacky Ehlers Danlos body to the best of my own abilities, relying on the doctors I do have to fill in the gaps when I need them.
Adding a New Weapon to My Arsenal
When I run into problems like my cervical spine popping out of place for several weeks, I don’t go to the doctor anymore unless I feel certain the pain is new or very different. I get started on my own rehab. I won’t lie, the pain was a zebra level 10 and there were days I’d have been thoroughly satisfied if I could just behead myself and be done with it, but I made it through. I made it through because I have tools like the fasciablaster, an ultra cavitation machine with far infrared (more info coming soon), AloeMD, epsom salt baths, physical therapy exercises, rest, ice, muscle relaxers and more Advil than I care to admit to (max doses only, no worries), but sometimes we have to compromise to make life more bearable. Why bother the doctor or go through the pain of leaving the house when I’ve already learned what I need to rehab my neck myself? If your answer was pain pills, let me assure that he would neither offer them nor could I take them because of severe MCAS reactions to codeine and opioids.
Knowing that this is a chronic lifetime condition with no real solution, I’m always looking for the best new solutions to address my pain and keep what mobility I have. I decided that while I’m not crazy about braces, it’s time to begin using one to support my head and neck during strenuous upright activity or when I’m going to be bending over a task for some time.
I chose this inflatable traction style collar because I felt the way it worked would offer the most support for my head and neck while up and around. Turns out it was a good choice. It definitely fully supports the head and helps to position the neck properly, all without causing any pain. It’s also incredibly affordable. Before you celebrate by popping one in your Amazon cart, let me cover a couple of caveats for this particular item.
First, I can’t guarantee this is the exact collar I bought, but it looks and is described in exactly the same way and even has the same air control and deflation valves. The collar I actually bought came with an overseas shipping nightmare and price tag no one experiencing severe pain should have to pay, so I found this one on Amazon that appears to be the same and ships quickly. Often we need these things fast, not in 6 weeks! It’s also $10 less (no more impulse buys on Instagram for me) and for whatever it’s worth, it’s FDA approved.
This style of collar does what it’s supposed to great, but you may experience some of the frustrations I see in it. For one, when it arrived, as very strong chemical smell came wafting from the package and I quickly developed a migraine. I put it out on my porch a couple of days and it really seemed to help. After it was unboxed about a week, I no longer needed to wear my mask and the odor was no longer apparent.
The other thing about it is that whatever poly/vinyl material the collar is made of has to be airtight so it can be inflated, so of course it’s a bit like wearing pleather; there’s no breathability to the material wrapping your neck so you end up pretty hot and sweaty under the collar. If you have heat intolerance, you’ll probably see this as a drawback, like me. If you’re always looking for your sweater, it could be an advantage.
On the claustrophobia front, it presses a tiny bit on the jugular and can make you feel a bit uncomfortable at first, but it’s only Velcro straps that hold it in place, so you can be out of it in less than a second. Not only is this great for anxiety or PTSD issues, it’s necessary in case anything were to go wrong and you need to take it off fast.
The thing about braces of any kind of course, is that they shouldn’t be worn excessively, so I actually think this will work just fine. Now that my neck is almost back to it’s normal state, I will only use this brace if I’m going to be doing something for an extended period of time that forces my neck outside of the neutral position. Most importantly, I’m working out my neck and shoulders so they can grow stronger and do the work themselves. That way, I only have to go into my brace during injury flares. Never go into a brace without a definitive plan of how to cut your dependence on it, no matter the path to healing you choose.
At this point there isn’t much I can or am prepared to do about my neck regarding surgical measures. Even though I had a wonderfully successful surgery on my low back, I want to delay surgery on my neck for as long as possible. Surgery can be helpful, but it can also snowball into more problems and yet more surgery, or even worse symptoms than previous. My symptoms are neither life threatening nor debilitating with the exception of occasional flares like this one, so I would refuse surgery anyway.
In light if this, it doesn’t really make sense to push to see other specialists. My fascia work and strengthening usually get me by. My migraines are now very well controlled. The problem with my neck this time was probably the combination of a mutli-condition flare while also being off my usual exercise routine during my heart issues; this is exactly why I preach reducing workouts over skipping them on bad days. Unfortunately, my buddies anxiety and depression had other thoughts about what we should be doing. We all have our bad moments, even preachy health bloggers.
I may eventually look for a cooler option in braces for the summer months and keep this for the rest of the year, but for now, I think this collar will work just fine to support my head during moments of vulnerability while I try to stretch any possible surgeries as far into the future as I may.
If you decide to purchase a collar like this or already have one, I would love to hear how yours is working out for you. Alternatively, if you have another to recommend, we’re all ears! 😊