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As I write this, it is unbelievable to me that this is my 1 year post operation update. I made the decision last year to document as much of my surgical journey as I could due to the impending release of the Oscar nominated film, ‘Wonder.’
My mission was to bring a raw voice and face to Treacher Collins Syndrome, as I knew the world would see this film and only have Auggie’s story to go by in their early understandings of a complex facial difference.
I am usually a pretty humble person, but I must state how proud I am of myself for getting through the past 365 days. These days were anything from easy and I am guilty of sugarcoating my medical experiences as mundane. Prior to my surgery last year, I had not been in the O.R. for over six years. I was not a woman, but a girl. I was in school, and not yet of working age; I didn’t have a business or a drive to make accomplishments.
As an adult, I never truly realized how much more difficult this journey would be. I thought it would be less challenging since I would be able to understand things better. I was wrong.
Surprisingly, by far the hardest part of my recovery this time around was not the excruciating pain or any of the daunting parts I have always despised. The most difficult part of any of this was once I had turned the corner to truly healing, and because of that, having to introduce myself back into society. To go out for long periods of time, to drive again and to look much better to everyone around me, but still feel miserable inside.
I understand that most people probably do not understand the surgery I had or why I had it, so I wanted to go into a little bit of detail before giving my official post-op update. Referenced in my previous post, I shaved my head the day before my surgery. I had many reasons for doing this, but I knew that this procedure and recovery would go much smoother if I didn’t have my hair to worry about. I was right.
Throughout my life, I have had three major jaw distractions which require: breaking the lower jaw, moving it forward, and attaching a device which allowed for two screws to come out through my skin, underneath my jaw. My mom would have to turn the screws three times daily for a period of a month. It was not easy and it certainly was not fun. Those three surgeries were spread out over the period of almost a decade. In high school, I had a LeFort procedure which involves the breaking of both the upper and lower jaw and realigning them. Also, not an easy nor fun time.
When enduring so much, the jaw slowly starts to fuse due to the nature of the past operations. After every jaw surgery, I have struggled more and more with the opening of my jaw. My surgery this past year was to work on opening the jaw back up which was the reason for the two curved incisions on the sides of my head, which I must admit, my doctor did a great job with those. They look pretty cool to me.
I suffered from a major ear infection following my surgery. The stress put on my jaw caused my ear to start profusely bleeding directly after. A couple days later, the pain became so intense that my mom and I went to otolaryngologist who confirmed that the swelling was very bad and it was definitely infected. Pain started to get much better after finding this out and treating it.
My surgeon also took bone from the top of my skull (another incision was required) and placed it under my eyes due to the lack of cheekbones. I have always prioritized this because the deficit under my eyes has caused me trouble all my life with the continuous running of my eyes and seriously dark circles underneath.
Due to all my jaw surgeries, I developed a very rare disorder, Frey syndrome, that only comes from surgical procedures. It is medically defined as, “sweating and flushing of a patch of skin near the ear that occurs when someone is eating.” I have dealt with my Frey syndrome for about five years, and it came about every single time I ate. I asked my surgeon to try anything he could think of to rid me of this inconvenience. Botox was the most logical solution, but was only going to partially or fully recover that area for at most six months. I had done a lot of research and most people saw their Frey come back around the six month mark with really no other viable solution.
I was also supposed to have a genioplasty which involves the chin. I would have had more bone taken from my skull to add to my chin, but at that point, my surgery had already been at the seven hour mark and it was time to wake me up.
A huge complication with TCS is our small airways which can cause issues with intubation. TCS patients always need an anesthesiologist that is very confident and educated with administering anesthesia to us. It’s always safer to be under for a shorter amount of time rather than longer with such airway complications.
It has been one year since my surgery and I have struggled still with keeping my jaw open an acceptable amount. This is mostly my own fault because I did not keep up with the exercises I was given. I will most likely have to go back under to work on this again. I have hooks in my gums that were placed for rubber bands to help with my jaw opening. I still have them and they will need to be surgically removed.
Unfortunately, this time around, my surgeon saw a facial nerve jump which has caused paralysis on the right side of my face. In one year, we have made a lot of progress with FSM (Frequency Specific Microcurrent) treatments. These treatments have slowly brought back movement. My eyebrow and forehead was affected the most, and after having absolutely no movement, I am able to move both significantly more than I was. It is not back 100%, but it is much, much better than it had been.
The bone placed under my eyes has ‘dissolved’ in sorts and I will most likely have that redone to ensure I can have a better quality of life regarding my eyes tearing up almost everyday.
I am very happy to report that my Frey syndrome has not yet reappeared! I thought it would last less than the estimated six months, but it has been a year without even a drop of sweat.
I will have to have another surgery or two, but I am more than prepared to get all of this done, and move on with a surgical-free lifestyle afterwards.