I have made several references to ‘dental work’ across recent social media and in my latest Health Coach Chronicles email. Many of my clients know that I have been wearing various fancy dental appliances over the last couple of years (yes, really) and I wanted to share how stressful the whole process has been, some of the considerations and complications with the dental work I have been doing – and perhaps help those who are facing similar choices with dentistry wherein sharing my decision making process and reasons for pursuing it might help.
Some of this I’ve never told anyone and some of it might be TMI – so don’t read on if you don’t want a full rundown of all things teeth/jaw/TMJ etc!
Why Dental Work Was Recommended For Me
Perhaps the first thing to point out is that the procedures I have been having done are classed as “cosmetic”. That means privately funded, not considered clinically necessary by the National Health Service, or even most dentists within the UK.
Step into the world of Ehlers-Danlos Syndrome, however, and things like Chiari Malformation, orthodontic expansion and vagus nerve impingement are common, frequent topics of conversation. You don’t really need to know what any of those things are – but suffice to say that, as with most things, there are sectors of the population for whom stepping outside the ‘clinically considered necessary’ is simply part of the treatment progression.
I have, on four separate occasions walked towards dentistry. I have spent literally thousands of pounds in this area – not all of it strictly necessary, I must add. However, the reason I was always looking in this direction was threefold. Firstly, the sense that my teeth were always on edge and that I was pushing my lower jaw very forcibly with my tongue, almost 24/7. Secondly, the sense of huge pressure in the back of my neck which I used to beg my mother to relieve by pressing incredibly hard in the dip at the base of the skull. (Probably not medically recommended but it was the only thing that would relieve the pressure). And lastly – because quite simply I kept chipping my front teeth biting on things as innocuous as fairly soft apples.
The first dentist I consulted did some fancy assessments and said I had dental occlusion. Over £2000 on a biometric analysis and I was shocked to see all of the results and learn that occlusion really meant basically constricting my lower jaw in its movement forward and outwards by virtue of a narrowed upper arch of teeth. I, like most of my generation, had had three teeth removed in my early childhood due to “overcrowding”. And I had one tooth, my upper right canine, which had firmly stayed in the roof of my mouth and never come into the arch of my upper teeth. The fact that I was now supposedly ‘narrowed’ and ‘occluded’ was perhaps not surprising – and it is in fact more common than you would think. (For more on this, just Google Weston. A. Price and dentistry to see some interesting conclusions as to why this might be).
Through freaking out at the proposed cost of treatment, and the fact that the dentist I was seeing was being investigated by the regulatory board of dentistry in the UK, I didn’t pursue this treatment at the time.
My second attempt at resolving this was actually motivated through my own research into the potential impact of the pressure I could feel in the back of my neck and its relationship to the vagus nerve. Suffering enormously with countless digestive issues, neurological issues and almost constant bodily pains all over I was hunting around for potential ‘reasons’ for my seemingly neuro-gastroenterological conditions (think ‘the nerve supply to the gut’) and there was dentistry again. Consulting a very well established dentist who worked alongside an osteopath (always my favourite people!) to ensure holistic support I was told pretty much the same information as I’d previously heard – and a treatment appliance was made to try to begin rectifying my jaw.
This was after taking a few scans of my Temporomandibular Joint (TMJ) which showed mild issues but remarkably not the adhesions and difficulties that were expected. It did allude to a very narrow space between my spinal column and my skin – hence a very, very narrowed space for my nerves (in particular my vagus nerve) to go through. A complete description of the role of the vagus nerve is a bit too lengthy for here, but it basically controls everything – including the nerve supply to the gut.
The appliance that was first used was terrible for me. My Postural Orthostatic Tachycardia Syndrome symptoms surged with a vengeance – I couldn’t walk more than 50 metres without going dizzy and frequently falling over. Whilst this was disappointing, it at least showed me one thing – there was definitely an issue here.
I had neither the physical strength nor the mental energy to pursue this at this stage, so I walked away from it and tried to get to a place where I could cope better with any interventions. I did get myself as well as good, relying heavily on osteopathic treatment to regulate as much of everything as I could without changing the shape of my jaw.
I moved house, began full time working in massively busy jobs in London and just, sort of, coped…
That was until I started chipping teeth. Apparently the occlusion had come with grinding teeth, and the grinding caused teeth weakening – which led me to basically crack chunks off my front teeth. Consulting a local dentist he politely said, “Look, I can keep repairing this but it’s only going to keep happening because your teeth alignment is terrible. I think you should see our orthodontist.” So I did…
Who did a load of scans and X-Rays and told me the same thing – occlusion, orthodontic restructuring required, at least £6000-worth.
My trust in him was challenged when I asked about the structural support work whilst reshaping someone’s entire mouth and he didn’t believe that things like osteopaths were necessary… so, I traipsed back to the dentist who had tried to help me with the appliance before (and who still worked with the same osteopath who had been treating me all this time) and asked to be reassessed. He did that (more telephone numbers of money), proposed a slightly different treatment plan and…
I decided to go for it. With no guarantees of anything, except the conviction that my neck and head still felt like hell and my body was ‘coping’ but I was nowhere near eating normally, I would still feel violently sick at times, I would still prefer sugar to real food because it was easier to eat – and I still preferred not eating at all because every time I ate I would feel literally horrendous and as if I was going crazy (difficult to explain but I may write a ‘vagus nerve and digestion from the inside’ post at some point!)
What My Dental Treatment Looked Like
To make a very, very long story as short as possible, this dentistry is all about using expansion appliances to make the jaw grow in size, and preferably shift forward, to release the pressures within the mouth and lower jaw and relieve the tension within the jaw joints. I’m sure orthodontists and dentists everywhere are cringing at the basic-ness of that explanation, but it’s enough to explain how this works.
The way they do this is through using various different appliances, sprung metal wires, bits of plastic with screws you can turn to push teeth in a certain direction – all either stuck to your teeth permanently with composite material and/or removable. Sometimes (frequently in my case) two different appliances at the same time doing slightly different things. Often there are some combinations of hooks, elastic bands and various different improvised ‘yanking’ mechanisms that you place around these appliances to ensure that all the forces are going in the right direction. All of these various teeth-and-jaw-manipulation-devices would be in my mouth for months, in fact – over a year.
Later, I would add proper full braces to the mix too – with the train tracks just on my upper teeth attempting to level and pull and … God I’m exhausted just writing it all down.
Pain was par for the course. Cleaning was a nightmare – particularly with two different appliances in at once.
After probably 3-4 months…
Intensively supported by osteopathic treatment at the times when I literally thought I was going to either a) go crazy or b) walk into the path of oncoming traffic because I was so dizzy again…
Now, I was doing other things too – but I started to physically change shape. I held weight where I hadn’t before. My appetite changed. But most sensationally for me, my hormones changed – and somewhere in the midst of upping my fat intake (which I’d done previously to no effect) and supplementing with higher levels of zinc and B6 (I have pyroluria which you can read about here but requires these nutrients) and doing this crazy dental work… I started having a menstrual cycle for the first time … IN 13 YEARS.
On top of this, I was feeling differently – about life, about myself, about my job, about my world. Much introspection, conversation, stress, issues and contemplation followed but I was sensing myself in a different way. And, with the help of a great headspace, a great osteopath and a great deal of perseverance, I began to feel more like I had always been supposed to feel.
I hadn’t had any guarantees that I would get a good result. Nobody could have predicted what the power of this dental work would do – and whilst I didn’t have “TMJ pain” like many people complain of it, the pain in my head was gone – no longer requiring me to jam my thumb into my skull on a regular basis. I genuinely believe that had I not had Ehlers-Danlos, the compression in my jaw would have been more profound, but my laxity helped me to compensate as best I could – though never fully allowing me to connect to my body in the way that I now felt possible post-round-one of dental treatment.
Why This Wasn’t Simple
Yes, I did say “round one” because there was much, much more to go, I’m afraid. My dentist was retiring and we thought we were nearly there so brackets were removed (my goodness, the relief) and I decided (mostly all by my impatient self) to remove the tooth in the roof of my mouth and put an implant in there once the wound healed. I still don’t regret that decision because I never trusted the tooth but my new dentist laments its extraction every time I see him.
However, the new dentist is a perfectionist. I both love and hate him for it. Because when he analysed my bite, jaw and occlusion… ah, yes, I’m still massively not where I should or could be in terms of the alignment of everything. Not only were the electrical readings from my jaw really strong, indicating massive stress throughout my nervous system emanating from my teeth and the bite (so that ‘teeth on edge’ feeling was actually real!) but the analysis of my X-rays was a little shocking to both me and my dentist.
The numbers indicated that I’d be a good candidate for surgery… which means slicing the bone of my jaw, moving it forward, pinning it and letting bone regrow to try to expand my upper palate… is anyone else feeling sick yet? Yeah, me too… so nope I’m not doing that.
Instead, appliance number 5 went in – the first one made in the UK, we think. A button of plastic in the roof of my mouth, some spring-loaded side bars to push teeth back, some hooks for elastics and a hell of a lot of pain. Cemented in my mouth, this appliance would (for 7 months) make me demented with my attempts to clean in all the gaps and be patient with the spring expansion which put me through hell every time.
Then we added the cricket helmet to the mix. Yup, cricket helmet – to secure elastic bands around with paperclips so that I could pull the whole contraption (and theoretically my entire upper jaw) as far forward as possible. For an hour each night I sat there with this contraption. The pain, the neck tension, the complications in my neck, spine, alignment… argh it was awful.
And it didn’t really do what it was designed to do…
Don’t get me wrong, it made some difference to some parts of the mouth, but not that forward motion that we were looking for which would mimic (or at least approach mimicking) the surgery.
We took the decision to remove the appliance after we knew it had done all it could and I had a space retainer piece of plastic made to hold the gaps we have created in the roof of my mouth (one day there will be implants there). We let my mouth settle…
And then we took impressions for more braces – top and bottom – full train track-style.
Where I Am At Now
This is where I am now… This is why I am in so, so much pain. Two months on from the impressions being taken and I was fitted with the full braces last Thursday. Not only that, my poor tiny lower front teeth normally come close behind my front, upper teeth – which now would mean that my upper teeth would directly bite onto metal brackets. Instead, I have some dental material stuck behind the bottom of my upper front teeth which my lower teeth slam into instead. Yes, it hurts. Additionally, my teeth don’t meet anywhere else, so I have no bite surface.
By far the worst bit, which I hadn’t anticipated, is the fact that my teeth go far back and very close to my cheek. Every time I talk, bite, move my jaw, smile, yawn, laugh and (most upsettingly) sing, I slice into my cheek with a metal bracket. I can’t eat properly because I can’t chew properly. And yes, I’m in agony most of the time.
Why? And At What Cost?
My reasons for going this way might be obvious from the paragraphs above. I literally don’t think I’d be where I am now without having relieved this pressure in my body and the opening up of the pathways of communication that doing this dental work allowed. I’m not recommending this course of action to anyone, because I know – deeply and profoundly – that it has come with some serious consequences.
At their core, my ‘conditions’ and ‘diagnoses’ are really very simple. I have Ehlers-Danlos Syndrome which is an impairment of collagen. This makes some of my joints lax and a lot of my skin tissue quite stretchy. When I get a cut, the scarring shows the collagen issues of my skin because things don’t quite heal correctly.
My gastrointestinal issue has given me most of the symptoms from this collagen weirdness in that it is both impaired in terms of its squeezing motion and it is also incredibly sensitive. This means that my sensitivity to all of the proteins that are most inflammatory and/or reactive to everyone’s immune systems have always been (yes, always – even when I didn’t know better and before I supposedly got ‘ill’) really damaging for me.
To accompany this skin permeability issue, I was gifted (yes, really) with the genetics that make my immune system really attuned to gluten and organic toxins (think moulds) from the environment. This immune sensitivity means that my gastrointestinal tendency to permeability is protected against by a (very) alert immune function. I see the pairing as a blessing, most days…!
Where the complication comes in is that I have learned that my sensitivity to things invading my body (and, in fact, my personal space) is alarmingly acute. I was once fitted with a PEG feeding tube (long story, but it’s a tube they insert directly into your stomach through your abdomen wall) and my immune reaction to it was so alarming and powerful that I began to not tolerate anything at all – especially the feed they were putting through the plastic tube itself.
Everything that I bring into my body affects me deeply because I feel it deeply. Being specific with my diet is, therefore, not a vanity project or a fad – it’s essential for keeping me healthy, happy and sane.
Everything in my life is also about loads – in that I can cope with much more external stress, life hassles, emotional turbulence, social issues and, actually, foods when I am being careful about keeping the more challenging things to a minimum. i.e. if I keep my dietary triggers (nuts are a real big one for me) to a minimum, I have more capacity for giving of myself to my loved ones. And if I remove toxins from my life in terms of the water I drink and the shampoos etc. that I use, I can get away with the odd glass of alcohol and chargrilled piece of food.
So… how has this anything to do with dental work?
Well essentially I’ve had foreign objects in my mouth for going on 2 ½ years now. Constantly.
To add to this, the pressure on my nervous system (already fairly dysregulated given the other complications that come with laxity, collagen impairment and vagus nerve impingement for 28 years of my life) from constantly shifting teeth, pulleys and levers in my mouth etc. etc. – well the whole thing has been an enormous undertaking, and one that hasn’t been without consequences.
The whole issue with dental work is that it is a process of putting foreign, alien ‘ingredients’ into the tender environment of the human body. Cements, fillers, plastics, metals, cleaning agents, ‘etch’ (no idea what’s in it), weird salty-lemony solutions which taste vile and must contain many chemicals… this is far from the alarmist ‘remove the mercury’ mantras (though that’s still very true). This is modern dentistry and it still compromises everyone’s immune system because you are introducing foreign bodies into your body.
With me, the decision wasn’t taken lightly and hasn’t been without repercussions. My skin – always beautifully clear (well, there has to be some perks to a connective tissue disorder, right?) – has had a tendency to acne and rosacea for almost two years now. My intestines, bacteria and overall eating is vastly improved now I have vagus nerve connection back… but it is extremely (extremely) affected by the immune activation through which I am currently living, which is constant.
It is also drastically affected now by the fact that I can’t chew without agony. This means that vegetables, salads and my ‘safe foods’ are being shifted out and replaced by soft, dissolvable fish/seafood out of tins, bone broths and stews that fall apart (even in summer!), soups which are essentially drinkable nutrition… and blackstrap molasses because I literally can’t get enough food in to keep my calories up.
Everyone who has dental ‘stuff’ done faces the same challenges to their immune system. It really is necessary to take care over the materials used. When I finally (finally!) get to the stage where I’m looking at implants I am going to invest in checking my blood for immune reactions to dental materials and ensure that my dentist uses materials to which my body does not mount an immune response. There are US labs that do this, though as yet there are none in the UK.
I know in the core of my being that all of this was the right decision. And sometimes there are no criteria in decisions for me, other than this ‘gut feel’. I have been through enough with my body to know that actually, whilst this is hellish at the moment, this is the first step en route to finally have a jaw which doesn’t send my nervous system into literal panic constantly. It is the first step towards having a bite of food that doesn’t send electrical impulses through my body of panic – and it really is the first step to allowing the rest and digest function (long forgotten inside my body) to be allowed to take its role in my life.
The compromises in the short term are very real and this is not for everyone. For me, however, this is an expensive (gosh, it’s been and continues to be very expensive) but essential part of my healing process. It has allowed me connection to my body, feeling at home and safe in skin that might be too stretchy but is actually all I’ve ever known. I hope that the end result is a lovely looking mouth, but that’s never been my motivation. And yet, there have to be some upsides to all of this, right?
And no – before you ask – no pictures of my teeth… not now, not with the braces. I’ll show the world when I’m done. But for now I’m off to make some more soup and hold my cheeks in agony, dreaming of a year hence when this is all over!