Right to Grow

Today I was listening to a Rachmaninoff concerto, something which I had begun to play at 18 when I got to college and was asked by my piano teacher why I wasn’t a piano major.  Forward 20 years, and I’m struggling to play songs that I played with ease and admirable technique at 10 years old, after just a year of lessons.  Why?  Because I wore 5 years of ‘traditional’ orthodontics while growing an entire foot.  I grew in restraints, such that my palate and skull did not keep pace with the rest of my body, and what is worse, I was given a headgear, which yanked my upper palate into the top and back of my skull, compressing cranial sutures, compressing (look at a diagram of the skull) brain matter, tissues, muscles, nerves, and veins. 

From the time I wore headgear, onward, my neck posture was never the same.  My neck moved as far forward as my maxilla was yanked back, in my body’s attempt to preserve breathing space.  I lost part of my lower lordosis, and wondered why, in dance class, I suddenly lost inches upon inches of flexibility.  My shoulders were constantly locked, and my concentration went from bad to worse.  I began to suffer with chronic sinusitis.  Over time, year by year, I lost facility in my right arm.  Talent meant that I could ignore it, but by 22, I gave up piano, so confused and overwhelmed that my right fingers wouldn’t move as fast.  At 39, I’m spending everything I have to maintain a posture that is in no way comfortable, safe for my neck, or stable.  I gave up my opera career (and it really was a career) 3 years back.

Think about it:  an orthodontic headgear is primarily used on those who have significant facial mal-development.  This means that those who require a headgear already have an overbite and crowding in their upper jaw, which has to do with a lack of proper growth in the upper jaw and the uppermost parts of the jaw.   For the lower jaw to come forward properly, the cheekbones, palate, and upper jaw in general must be developing at pace with the rest of the body.  Because of serious asthma and allergies and ensuing open-mouth breathing, mine did not, so I had crowding in my upper jaw.  What the headgear did was take an already vitally serious issue, and make it many times worse, so as to create the appearance of normalcy in my mouth. 

Instead of helping me develop the upper part of my face and encouraging the lower jaw to come forward, they pulled with great force the upper part of my face/jaw backwards, to pull teeth backwards, against the direction of growth, in order to make room for crowded teeth.  What they should have done is expanded the upper jaw to help it grow, and make room for crowded teeth in the logical direction.  Because my upper jaw is now set further back that it was supposed to be, my lower jaw is forced backwards because it too cannot be where it is supposed to be, because it cannot go more forward than the upper jaw.  This creates compression in my TMJ and makes the problem even worse.  Now, when my lower jaw wants to move further forward to a place where the TMJ can operate comfortably, my lower jaw has to come out in front of it, but if I do this, I cannot chew or speak.  Try to place your lower jaw in front of your upper jaw and see what happens when you try to chew and speak, it becomes impossible.  In any case, because I do not chew, swallow, or speak in that position, I have to force my upper jaw backwards and after having done this for years, the TMJ joints are fully dysfunctional.  Even the standard medical community has agreed this was caused by headgear, and is a problem so bad that any surgeon worth his salt has said no to touching it, since so much is in disarray and the problem is anything but clearcut, unilateral, or even bilateral. 

So of course, for 25 years of my life, I have been further retracting my lower jaw so as to chew, speak, and appear normal.  It’s a terrible way to live.  X-rays show that I have 35% of the breathing space of a normal adult in nasal and pharyngeal cavities.  This most certainly explains the chronic fatigue and sinus infections I had as a teenager.  It also explains the sleep apnea I was diagnosed with years ago.

Even if an orthodontist that still “believes” in tooth extractions and headgears would tell me “yes, but you might have had a sleep apnea even without orthodontics because you had an overbite,” I could answer, “but does that make it right to pull my upper maxilla backwards, cramping an already cramped breathing space?”.

Dr. Hermann Sailer looked at me.  He is one of the foremost orthognathic surgeons in the world.  Without me saying anything, without reading the forms I had just filled out, he said “victim of headgear.”  He showed me exactly where headgear retracts the upper jaw into the skull on my x-ray, and made it quite clear and obvious how this forever alters the growth pattern such that the face grows even longer, and loses its horizontal development. 

It’s now been more than 20 years since I was a teenager that I wake up choking at night, and the orthodontic community needs to answer to this.  Five years of allowing someone to restrain my growth and pull hard on my skull while compressing everything within could not have been a good thing by any means.  For the past century, we’ve had alternatives to headgear and growth restriction, such as maxillary expansion and even oral exercises to help develop the lower jaw forward.  The BioBlock and Orthotropics have been around for decades, the Crozat has been around since the 1920’s, the ALF has been around for decades and there are many others.  So if an orthodontist tells you that limiting the forward growth of your upper jaw, or extracting teeth to make room is the only answer, I urge you to think twice.  

I've been battling sleep apnea for as long as I can remember. I've been using a CPAP machine with mild success for over 8 years now, and have had several corrective surgeries to try and offset the breathing abnormalities I've been suffering when prone or asleep.

In the 5th grade or so I had braces applied for which they extracted several healthy adult teeth (I believe 7). 

In the 7th grade I got my braces off, but I also underwent the first surgery for the snoring that had become so obstructive that I was enduring the ridicule of my peers and their families any time I slept away from home. It was audible through several walls and on more than one occasion prompted the adults to drag my mattress into the hallway or lobby and make me sleep there. I dreaded getting invited to stay anywhere over night and had to explain that they wouldn't like my snoring. Each and every time I knew that despite their insistence that they probably wouldn't even notice, I'd still hear all about it the next day. Because of the humiliation I convinced my parents to take me to an ENT who removed my tonsils and adenoids on the pretense that it would make the snoring go away. It barely had an impact.

To me there was no name for what I was suffering from, but I was acutely aware that something was wrong with my sleep. I was getting yelled at by my parents as I tended towards sleeping later and later in to the day to make up for the sleep I wasn't getting at night. By the time I was in high-school people who witnessed my sleeping were either full of laughs about how amazing my snoring and ability to fall asleep anywhere were, or adamant that they were worried I might stop breathing entirely. In high school I became vaguely aware of the term Sleep Apnea from one of those late night commercials and was immediately convinced that was what I had, but with the shortsightedness of youth and the lack of perspective as to how badly it was affecting me kept me from seeking further counseling on the subject.

In college a girlfriend provoked me to see a sleep specialist because she and my roommates were concerned I might go to bed one night and not wake up. It was here that I was diagnosed with severe sleep apnea. At the time I was having 72 apnea events per hour and had undergone not yet undergone CPAP treatment. For some sense of scale, anything over 5 events an hour is when they start to recommend CPAP therapy, and anything over 20 events an hour falls into the 'severe' category.

The experiences I've had with CPAP over the past decade, both positive and negative could fill a wordy post on it's own, so I won't get in to that too much here. Regardless, last year things came to a head when even while using my CPAP machine, I routinely slept in excess of 12 hours, and was considerably fatigued when awake. On the nights when I would fall asleep without the machine I seriously woke up with the impression that I almost didn't survive the evening. I underwent another sleep study, was informed that my apnea events had risen to 84 an hour and the implications of how dangerous that was didn't really need to be expressed in words.

As a response I pursued corrective surgery and last summer had a hyoid stint, in which the bone in the throat my tongue and other mouth anatomy is attached was pulled down slightly to tighten things up a bit and keep the airway open during sleep. They also did a UPPP which means they attached the uvula to the roof of my throat. Recovery was a difficult 4-6 weeks, but I felt an immediate benefit to my quality of life. After 9 hours of sleep even without the CPAP I felt comparably well rested. Unfortunately the sleep study results weren't as promising as I'd hoped. Since those surgeries I'm down to 52 events per hour, so we saw a calculable benefit of about 30% or so. I'm not off the CPAP but it is easier to tolerate than before and I'm not afraid of dying without it. 

Incidentally, my machine stopped functioning last month and because of insurance bureaucracy it took a month to get a replacement. The approach that CPAP should be enough (which was greatly advocated by the company that sells CPAP machines) was perhaps a real threat to my life and a genuine threat to my already scary health situation.

Story over? I wish. Now that I've changed states I have been seeing a different line of specialists through a different sleep clinic, and I'm getting some new and troubling information. Now they want to restructure my jaw (which incidentally, will require me to get wired up with braces again) because according to what the dental surgeon told me that when I was a kid instead of fixing my jaw they attacked the cosmetic symptoms that were associated with it instead and started ripping out teeth and wiring up my jaw.

Sleep apnea has ruined my life; I have suffered severe depression, anxiety, and my unmanageable fatigue levels have consistently stood in the way of my relationships and career prospects. My heart, lifespan, and dental health have all been compromised by this condition and the treatment. It is only now that I am starting to get better that I have developed some perspective on what happened to me. I've finally gained an understanding as to what it is like to live with (comparably) healthy sleep, but I'm still here at the point where I am am considering further painful and humiliating procedures to correct for a condition that I am now coming to believe was exacerbated or downright caused by the orthodontics industry. 

I have permanent physical scars from these experiences, and indescribable emotional ones. If I go through with the jaw procedure, it will require me to live the rest of my life with a drastically different facial appearance that I cannot see before committing to it. I'm still reeling from the shock and unsure of how or if I'm actually going to proceed, but I am beginning to believe that my parents were taken in by some charlatans who knowingly put my health at a severe detriment to sell them my "nice" smile. I am not a medical professional myself, so I cannot specifically pinpoint them as responsible at this time, but I certainly want it explored for the sake of anyone else who might suffer a similar fate.