Before reading this article, I would like to share what the professionals who treated me have said about what happened with my jaw surgery. My surgeon has only ever seen this happen twice – once when she was training and once over ten years ago. The senior consultant orthodontist who treated me, however, said that, in her thirty years of treating cleft lip and palate patients, she had never seen what happened to me happen to any other patient.
Since this site is about my journey, I want to share my cleft process fully, but please do not be unnecessarily concerned that this will happen to you if you are going to or are thinking about having jaw surgery – it is extremely rare. However, there are still some important lessons that can be applied to any part of cleft treatment.
After my first round of jaw surgery, my jaw healed with a fibrous union (tissue) rather than the expected bony union (bone). This meant that in the months post-surgery my jaw moved back to the wrong place (top moved to behind the bottom) and I had to have a second round of jaw surgery with a bone graft to resolve the issue.
After I woke up on a morning in February with my jaws the wrong way around (once I properly woke up I could still put my top jaw in front of my bottom), I organised an emergency appointment to see my orthodontist. I told her about what had happened and the fact that my top jaw would move upwards when I clenched my teeth together. She reassured me and told me it was part of a process called settling. After a couple of weeks, I went to the orthodontist again (as a routine check-up). Although I knew I’d already told her about my worries concerning my jaw, I told her again and again she reassured me. On this visit, we spoke about options for a permanent false tooth to fill the gap where my central incisor hadn’t grown. She said I’d need to see a specialist in restorative dentistry who might want to do a bone graft, since the bone in my top jaw would be very thin and might cause problems if it had an implant put in it.
When I went to the restorative dentist, I also saw my jaw surgeon who popped in to see how I was doing. She immediately saw how my jaw was moving up and down when I clenched my teeth together. All plans were put on hold for my restorative dentistry and a new course of treatment was organised to resolve the identified issues with my moving jaw.
This process was something I found extremely difficult to come to terms with. After waiting years for my jaw surgery, not having it work properly, with the added prospect of facing it all over again was something I didn’t even want to think about. To add insult to injury, I had noticed the jaw wasn’t right in February and had told my orthodontist as soon as I was able. Although she wasn’t a jaw specialist, the fact that I could see in the mirror that it wasn’t right should have started alarm bells ringing for someone who is an expert in how teeth look when they come together.
However, it wasn’t until May, when I finally saw my jaw surgeon (who saw me by chance), that my worries were identified. Sadly, this badly affected my trust in my professional care team. I’d been falsely reassured and I felt ignored. I was so upset that my surgery hadn’t worked and that (although I am used to dealing with pain), the constant pain of eating had a very good reason behind it: I was biting on scar tissue. I had a very hard summer, since I knew I was going to have a second lot of jaw surgery right before I started my second year at university and was very worried about the affect this would have on my studies.
Although I found ways of coping with my trust issues and renewed worries of operations – previously my concerns had always been about recovery time and remembering that an emergency situation may stop the surgery going ahead on the planned day (since this is elective surgery). Now I had a new worry that hadn’t even entered my mind: will it work this time?
Luckily, the second surgery was successful, but there are three things I will always remember from going through this stressful and painful process:
1) Trust your gut
You know your body as much as any professional, if you feel something is not right, push to know why and make your voice heard.
2) Understand and take control of your treatment
I found that the fact I understood what had gone wrong and could see how a bone graft second time round would aim to fix the problem meant I was able to have more faith in my care team. This also helped me feel more confident when talking about my operations to professionals as well as family and friends.
3)Acceptance
As a cleft patient, it’s easy to feel like life has dealt you a raw deal, with most of us having around ten operations to fix the problems we were born with. When my surgery went wrong, I found it very hard to accept and worried constantly that the next time wouldn’t be any better. Whilst considering possibilities can help us deal with anxiety (in the sense that naivety can make things seem more shocking when and if they do happen), an important part of this process is ‘IF’. We don’t know what exactly will happen – and this is okay.
If something bad has happened, then it’s happened. It doesn’t mean we don’t need to spend time processing it, but essentially no good can come of over-thinking a past event. It’s happened, it’s in the past, and what matters is how you learn and move on. For me, after I’d processed my anger and trust concerns, I ultimately accepted my situation and used it to learn more about treatment options and the importance of trusting my gut and letting my instincts lead me.