Pictured: My stage 2 degenerative disk disease in my neck. Also visible in this photo, my four titanium dental implants.
I’ve spent more time than I’d like to admit within the past couple of years watching self-proclaimed yogis, fit chicks, and the like flipping their bodies upside down and throwing their legs up in all kinds of cool positions on social media. Although I really wanted to be able to do that kind of thing, a big part of me knew I’d never really be able to, but I couldn’t put my finger on why. Call it intuition.
Back in Sept of 2017, just about 6 months ago, I had a supine MRI that showed Chiari Malformation. I forget how the report was worded, but it basically said my cerebellar tonsils extended into my foramen magnum. It also noted that a diagnosis of Chiari could not be made by the technician reading my MRI. I’m not sure if it was the wording of the report or just the fact that I knew I had a mold-related autoimmune disorder that already explained all of my neurological symptoms, but for whatever reason I decided the Chiari discovery was incidental and insignificant to my recovery.
Fast forward 6 months-ish
I have come a really long way in my recovery from the mold-related autoimmune disorder, but I still had many of the neurological symptoms. At my mother’s behest, I finally broke down and asked my ARNP to order an upright MRI. According to a study published recently, a large percentage of people who’ve experienced neck trauma in automobile accidents showed Chiari Malformation on an upright MRI when a supine MRI did not provide evidence of Chiari, although the Chiari was there. I have been in at least 5 car accidents with neck/head injuries (I used to fall asleep all of the time while driving). Therefore, it seemed like a good idea to get an image of it in the upright position. The upright MRI showed an 8mm Chiari 1 Malformation. After reading as much scientific literature as possible and talking with as many other Chiarians as I can find, I had a pretty big suspicion that some of my neurological symptoms could be attributed to Chiari. It’s not as simple as the severity of symptoms being positively correlated with the length of the Chiari, though. It’s more about the size of your foramen magnum compared to your Chiari Malformation and how much room there is to accommodate it. That’s something you have to see a Chiari specialist to be able to determine.
Here’s where things get a little fuzzy, though.
Chiari 1 is typically considered something that you were susceptible your whole life, if you have it. It’s probably been there, smaller, and asymptomatic for years, in most Chiari patients. Typically, symptoms show up when it grows too large for your foramen magnum and begins to create pressure on your brain stem or is otherwise aggravated. There are many documented causes for that. The most common is head/neck trauma such in the form of whiplash from a car accident. Another lesser known cause is toxin exposure. Neurotoxins (such as mycotoxins from mold) are found in the cerebral spinal fluid of your brain’s lymphatic system. Toxins can also exacerbate Ehlers Danlos Syndrome (EDS), a connective tissue disorder that often precedes or is comorbid with Chiari Malformation. The more severe the connective tissue disorder gets, the worse my cerebellar tonsils herniate meaning that my Chiari Malformation becomes more severe, theoretically.
Instead of sending me to a Chiari specialist (usually a neurosurgeon) my ARNP referred me to an upper cervical specialist to see if there was a way to address my unresolved symptoms without neurosurgery (the usual treatment for Chiari). Therefore, I have not seen a Chiari specialist, yet.
The main point of this post is to explain what an upper cervical specialist is and my experience so far with one.
At my very first appointment, I knew I would be having x-rays taken and speaking with the upper cervical specialist. Originally, my belief was that this specialist could not possibly help me. Patients with EDS and Chiari are typically advised not to receive treatment from any chiropractor, and an upper cervical specialist is technically a chiropractor. By the time the day of the appointment was upon me, I had decided to go into the appointment without any real expectations. I just wanted to be present, go with the flow, and take it all in. I’d been doing even more investigation into the usual treatment for Chiari and I was really unsure whether or not I was willing to risk having decompression surgery or try my best to find an alternative to highly invasive neurosurgery. According to the internet, there is no alternative. Either way, there is no cure. Only a possibility that I might be able to halt further permanent nerve damage. In my mind, the alternative/cure has either not yet been discovered or is some well-kept secret that I am determined to find.
Let’s talk about the first visit, though. I was mentally unprepared to fill-out questionnaire after questionnaire regarding my pain level, location of my pain, restricted range of movement, and how it all affects my daily life. That’s all pretty difficult to face head on, especially when you’ve been experiencing these issues for decades. Prior to seeing the upper cervical specialist, if someone had asked me if I had chronic pain or fibromyalgia I would have said “no, I’m fortunate in that sense”. In fact, I’m almost certain I have said that exact phrase in relation to chronic pain. We can probably all agree that no one wants to be confined to a life of constant pain.
After completing these forms, though, it dawned on me that I have chronic pain. On a scale of 1 to 5, all of my responses were a 5, which was most severe/most limiting. Perhaps this was all part of some sales tactic to persuade me into believing that I was in desperate need of the chiropractor’s help. Either way, I had gained an awareness of my daily pain that I had never even considered. When the chiropractor called me back to sit down and speak with her, I was not feeling well at all. This was all transpiring on a rougher than usual day after having to go 2 days without taking the one medication I take for inflammation, Low Dose Naltrexone (future blog post on this to come). I must have sounded like such a sad case, because the specialist was unsure and a little skeptical sounding that she would even be able to help me. When it was all said and done she assured me that she would stay late and comb through my images in hopes of finding something she could help me with.
The technique used by upper cervical specialists is NOT considered high-velocity, low-amplitude (like a normal chiropractor that makes large, swift adjustments), and is performed with the aid of something called the Laney Instrument. The Laney Instrument is essentially a gun-shaped tool that has a small blunt attachment on the end of it. You lay on your side, the chiropractor tweaks your position so that you are aligned in a certain manner, and then the instrument is used to gently nudge what felt like the transverse process of the C2 cervical vertebrae. Perhaps the description “gently nudge” minimizes the force of the physical impact a bit too much. It really rather knocks your vertebrae, rather than nudging it. The specialist does that a couple of times then sits you back up and tests your cervical range of motion, again, usually proclaiming that your body has taken the treatment well. At least, that was my experience.
Pictured: The Laney Instrument used by my chiropractor/upper cervical specialist along with some other tool she uses to systematically align my body for adjustment.
I’m not going to lie… after just 3 or 4 treatments, my range of motion had changed dramatically. When I first began driving my previous car (a Honda Fit) I believed that the Fit had a huge blind spot, despite the frame being nothing but windows. After being adjusted I realized that I was the one with the blind spot. With my new range of movement, I no longer feared switching lanes as I always had before. The treatment was definitely providing me with a benefit, but it seemed to also be giving me some new and worsening symptoms. After every treatment, I would get a metallic taste in my mouth within just a couple of minutes of returning to the upright position. Within another 10 – 20 minutes I had really intense nausea. Later that same day, I would also experience an hour or so of blurred vision with this feeling of being unable to focus my eyes no matter how hard I tried.
I think now is a good time to mention that this treatment has never been recommended for a patient whose symptoms were attributed to Chiari Malformation. In the scientific literature, this type of treatment can be performed on someone with Chiari, but is only done when the patient’s symptoms are believed to originate from a non-Chiari source. In my case, the upper cervical specialist found that I have stage 2 degenerative disc disease in my neck. She did not say as much, but it is now my understanding that she probably believed my symptoms were a result of the degenerative disc disease, and not Chiari. I like to think that, at least, because she would otherwise have no clinical or scientific basis to have initiated treatment with me. I should also mention that there has never been a reported case of a Chiari patient experiencing any lasting negative effects of treatment. There have, however, been cases reported where a Chiari patient completed extensive treatment and did not experience any significant decrease in symptoms. The full treatment plan comes to $3,700 (with a 10% discount if paid upfront), so you can imagine how upsetting it would be to waist valuable resources on an intervention and it not work.
I have not experienced any reduction in frequency or severity of Chiari symptoms since starting treatment with the upper cervical specialist. It’s safe to say I have experienced worsening symptoms, though. Although I do have better range of motion in my neck, that was not a Chiari symptom. According to the specialist, the nerves running from my neck to the rest of my body are being pinched and squeezed leading to all of my symptoms. In peer-reviewed case studies, Chiari patients whose symptoms were not attributed to Chiari experienced relief of all symptoms within the first couple of treatments. It stands to reason that if I’ve experienced range of motion improvement already, then my nerves should be under less distress. Why was I not having improvements in other symptom areas? Why was I having that strange cascade of symptoms directly after being adjusted with the Laney Instrument?
The better question is, why isn’t my upper cervical specialist concerned when I inform her of the new symptoms? Within the days following initiation of this treatment plan, I felt like my Chiari had worsened, in general. I experienced more positional/postural headaches, more dizziness, and more intermittent bouts of nausea even on non-treatment days, dehydration, insomnia, and memory deficits. I’m no stranger to a detox reaction, but this didn’t exactly feel like a detox reaction. After calling the specialist’s office to explain this, I was almost coerced into coming back in for more treatment. Either the specialist and her office staff know something I don’t, or they’re walking the fine line of malpractice in the name of financial profit.
Antidotal evidence of my fellow Chiarian friends suggests that this particular treatment, like any chiropractic treatment, is unsafe and can lead to mini strokes, paralysis, and even death. The literature doesn’t exactly support that in regards to this specific technique; however, it is pretty well documented that traditional chiropractic care does carry those risks for Chiari patients. I’m a big believer in listening to your intuition and to your body’s response to outside stimuli, including medical treatment. I’ve been receiving all kinds of treatment for my health issues for decades. Really, since I was 4 or 5 years old I’ve been subjected to naturopathic practitioners and their methods for healing the chronically ill. I have experienced great success as well as great disappointment with treatment, over the years. I also have a deeply rooted skepticism of Western medicine practitioners. Most MD’s I’ve seen have done more harm to me than good.
I really wanted this treatment to be the alternative to surgery that I’ve been searching for.
Chiari neurosurgery can consist of several components, depending on the neurosurgeon’s expertise. Decompression is the term used to describe a procedure called a craniotomy, which sometimes includes a laminectomy, as well. In other words, part of the patient’s skull is removed and their cerebellar tonsils are resected. After which a stretchy patch is placed over the area that was affected. This patch can be derived from cadaver tissue, your own tissue harvested from elsewhere on your body, or it can be sourced from another animal. There is also a technique used for Chiarians called shunting in which a shunt is placed to drain cerebral spinal fluid from the brain. Other surgical interventions include having a “blood patch” placed to stop a cerebral spinal fluid leak.
As you can see, the standard treatment for Chiari Malformation is anything but standard. It’s highly nuanced and complicated and involves removing part of, not only your skull, but also part of your brain. There are many options and many opportunities for problems to arise. Only a Chiari specialist neurosurgeon can be trusted to the surgery, and there are very few in the US. Here’s the real kicker- like I touched on earlier, none of these surgeries are intended to reduce the patient’s symptoms. Say what? That’s right. The incidence of symptom improvement following surgery is 75%, but the intended purpose of the surgery is to minimize or prevent further nerve damage, not improve existing symptoms. While preventing further nerve damage sounds great, a 25% chance I’m going to feel just as bad (or worse according to many who have undergone shunting and/or decompression) is a scary prospect. Some recover from surgery within a matter of days, and other years. Some describe their post-surgery improvement as having their life back, while others have had to have multiple successive neurosurgeries and are in far more pain than before.
The bottom line is this: I believe that upper cervical specialists and their technique can really help some patients. I would even refer my own clients to see an upper cervical specialist if I felt it might be helpful. The issue I have is that I truly believe it is not what I should be doing, right now. I have just received a referral to see a Chiari specialist neurosurgeon in Orlando, Fl (Dr. Trumble), and I feel that I need to hear his professional opinion before continuing treatment. He may tell me to go ahead and continue treatment with the chiropractor, but more than likely he will inform me of the risks to Chiari patients and advise against it. Before I can see the specialist, though, I have to have a full spine MRI. My ARNP has written a prescription for the next (and hopefully last MRI for a while), and as soon as I work up the nerve to subject myself to that kind of torture, once more, I’ll be ready to see the specialist.
If you have any chronic health problems, and you know for a fact that you do not have a Chiari Malformation, I highly recommend finding an upper cervical specialist in your area. I would even recommend mine to anyone in the Tampa Bay Area, to be honest. She and her office staff have seemed a bit pushy, in my case, but I believe they just truly think they can help me and they don’t want to see me lose the benefit of treatment by stopping or being inconsistent.
A big part of why I share my experiences is to help others who are faced with the same issues as me. Another big part, though, is that I love feedback from anyone interested in helping me expand my knowledge or even just your opinion on my approach. This journey is a process, and the more people I connect with along the way the better. Please drop me a line in the comments section or by email (ElizabethClarkHealthCoach@gmail.com) or find me on Instagram (@Experimental_Betty) or Facebook (Experimental Betty).