Rachel's Story

I am Rachel, aged 39 and I also had extractions and retractive orthodontics like so many others. I will tell you my sob story, don't worry, but first I'd like to say that the underlying cause of all this misery is a society that continually by-passes the root causes of problems and opts for the quick-fix, the economic option, sticking plasters every time. Of course, those who have been and are still going through this particular torture know it is a false economy, but it must be said, because it is everywhere you look if you have your eyes open.

So, the story probably started for me with bottle feeding only, thumb sucking, E.N.T problems and mouth breathing and a paediatrician mother who, as an NHS-trained health professional, knew absolutely nothing of the potential dangers of these things. I am sure she was not the only one. I was developing a somewhat retruded mandible, visible in pictures from age 4 or 5. I was taken to the orthodontist at Guy's Hospital in London, UK at age 7, however, which was absolutely the right thing to do. Pity was, the orthodontist did ABSOLUTELY NOTHING! He sent me away again until age 8 when he began pulling out my milk teeth to 'create space'. Unbelievably, you might think, my well-educated parents never questioned this logic. They were not even allowed into the consultation room, just given a form to sign.

At age 9, my four first premolars were removed (I had not fully erupted of course, but the orthodontist said it wouldn't make much difference at what stage he pulled them out...it wasn't as if I was still growing...was it?!!) Then I had retractive braces, fixed braces and rubber bands pulling back on my maxilla consistently until age 13, followed by a retainer. I have attached my 'before and after' X rays and I hope you can publish these as I think even a lay person can see what happened to my facial growth, the shape of my neck and the postural relationship of my head and neck.

The blinding headaches and vomiting started as soon as the braces went on. A migraine diagnosis from my mum....the orthodontist was not even told about them, though I doubt that would have done much good anyway. And then the headaches gradually left. In retrospect, I think my neck managed to reorganise itself around my TMJs and my much more retruded maxilla and mandible, as I think you can see from the 'after' x-ray. Then my shoulder, neck and general muscle pain started and, at age 12, I noticed my jaws had started clicking. That was 'normal', said my mother. Eventually the clicking stopped too. Bye bye discs. Halfway through the orthodontics I started playing the violin. My increasingly painful neck, shoulders and back was put entirely down to this and as I had waited 5 years for the chance to have lessons (music is now my profession) wild horses wouldn't have dragged that violin from me and I shut up pretty quick about the pain.

You see, there is a big danger with potentially painful procedures in childhood or anything that goes against natural growth and development. Most children will try to accept anything if convinced it is 'normal'; they have no experience with which to compare it and, in any case, nowhere to turn for help. I was told the orthodontics were supposed to be painful and uncomfortable. I knew in my very bones that something wrong was happening and I distinctly remember reasoning with myself that I would get through those few years and then go back to the way I was, completely missing the fact in my child-like thinking that this process was a one-way ticket. The powerlessness of all this is quite damaging in itself, I believe. Once something is 'normalised' (in my case constant muscle pain and discomfort) it is buried away and you just stop complaining about it and try to get on with the process of growing up. Which, I understand, can be pretty challenging even without constant pain and the feeling that the machinery of your body just wouldn't coordinate anymore ('gosh, I'm sure I used to be able to run before....it sucks being 11!')

And then there was my face. The skin on the bridge of my nose used to get so tight and shiny, I would have to powder it before school. I was so embarrassed. I would stand next to the double mirror in the bathroom daily, pulling my top lip and jaw forward to try to make my nose look smaller...really! My face was growing down and back at an alarming rate. My top lip practically disappeared. What bad luck to be ugly, I thought. Add that to the pain and I can tell you my confidence was really affected.

I wish I could tell you I have reached a happy ending 30odd years after the ‘treatment’, but so far I can’t. I managed to struggle on (managing symptoms by going from pillar to post: massages, osteopaths and so on) until about age 24, when my body came to a grinding halt. I had had to abandon any thought of a career as a performing violinist as you can imagine, but much more than this I was totally disabled. The list of symptoms read like this: daily blinding headaches until I vomited, very severe neck pain, rigidity in my entire musculature, burning and spasm in throat, face and jaw muscles, hip pain, knee pain, numbness in my arms, post-nasal drip, nausea, constantly feeling shivery and fluey, getting goose bumps all over and tremor. I had to stop work entirely and over the next 10 years went through 3 pain clinics, had practically every body part scanned, tried every drug out there, nerve blocks, injections, psychologists, psychiatrists etc. etc. and was, for a time, totally dependent on disability living allowance and benefit.

Truly nothing helped except training as an Alexander Technique teacher and this, wonderful though it is, is a management strategy.

My jaw joints were finally scanned in 2005 and showed non-reducing disc displacement on both sides, condyles jammed to the back of the joint, arthritis and bone loss. Although there is an acknowledged scarcity of literature on the connection of this damage to occlusion, not to mention symptomology, it did lead me to question ‘why?’ I remembered the orthodontics I went through and that lead me to the basement of Guy’s dental hospital to photograph my notes on microfilm and find those, in my opinion, horrendous scans.

I am exploring various treatment options, but after 10 years of searching I can only say positively that I think at least I have not let anyone make me any worse. We are in the wilderness. The NHS has absolutely no answer to my constant symptoms. Outside that structure there are a number of possibilities but it is a minefield of desperate, expensive and unproven techniques. Instinctively, one wants the whole process reversed, but it is not all that simple. How can you recapture 5 years of growth that was inhibited at such a crucial stage? And what about the myriad adaptations the body has made to this deformity over three decades? Meanwhile, I try to move forward with my life, but I operate day to day with a level of illness and dysfunction that I am sure would have someone without a chronic condition tucked up in bed with a doctor’s note. I have no choice. I love life, I love my work, but physically and emotionally I am butting up against the very limits of my endurance over and over again.

Pre-treatment x-ray:  1985


Post-treatment x-ray:  1989




Mid Treatment, after pre-molar extractions

Showing 64 reactions

Please check your e-mail for a link to activate your account.
  • Dawn Turmenne
    commented 2019-08-03 06:46:22 -0700
    Rachel; I wish I could help us both!
  • Dawn Turmenne
    commented 2019-08-03 06:33:51 -0700
    I had extractions and retractive orthodontics, and am trying to fix it now with limited funds and Invisalign, but surgery, which I don’t have insurance or money to cover would really be the only way to open my airway!
  • Jackie Sicilian
    commented 2019-07-20 14:45:24 -0700
    Jeez, my God so clear to see, but no one looked. I’m so sorry, but think I have similar damage. God bless you
  • Jackie Sicilian
    commented 2019-07-20 14:45:24 -0700
    Jeez, my God so clear to see, but no one looked. I’m so sorry, but think I have similar damage. God bless you

Sign Our Petition Volunteer Find an Event