By Caitlin Bartley.
I’m 21 years old and I have Merosin-Deficient Congenital Muscular Dystrophy. Like a lot of people with this disease, I have some facial deformities. I have an elongated face and what is called an “open bite” – I only have a couple of teeth on each side that touch when I bite down. I can’t make my lips touch together at all. My tongue is enlarged, and the roof of my mouth goes up really high. All of this can be corrected surgically, but it’s a very long process. So, let me start from the beginning.
A couple of years ago, I was at the dentist getting some work done. Jokingly, I told the dentist that I needed a tongue reduction. When I said this, I didn’t know that a tongue reduction is something that can actually be done. Later that day, I looked up oral surgeons on the Internet. I found one at Ellis Fischel Cancer Center. Even though I don’t have cancer, I was hoping that he could do something. I had seen an oral surgeon in the past, but he was hesitant to do anything because of his lack of experience with people with CMD. So I was hoping that this surgeon at Ellis Fischel was more experienced and would have more ideas about how to fix my jaw. My mom and I went to see the oral surgeon several weeks later. He examined me and invited me to a special clinic for people with facial deformities. It is held once a month at the University of Missouri Hospital.
I remember the first time I attended this clinic my mom, step-dad, and grandmother went with me, and we were all very impressed. It was so cool to go to a clinic where we got to see the oral surgeon, plastic surgeon, and orthodontist all in one place. At the first appointment, they did a CT scan of my jaw and examined my face. They explained that reconstructive jaw surgery is not something that can just happen overnight. A surgery that big must be carefully planned out and several steps must be taken in preparation. Before I could undergo this surgery, the team of doctors decided that the size of my tongue needed to be reduced, and my wisdom teeth needed to be removed. Also, my teeth needed to be straightened, and the roof of my mouth needed to be expanded.
The first step was a partial glossectomy; a tongue reduction. The idea of tongue surgery was a little scary, but exciting. The thing that scared me was the pain. I did some Internet research, and I read that tongue reductions could be very painful. However, I’ve always been self-conscious of the size of my tongue. So I was willing to go through some pain to have a smaller tongue. On December 17th, 2009, I had my first tongue reduction. The surgery took about two-and-a-half hours. First, they took out all four wisdom teeth and then did the tongue reduction. In all, they took 14 ml off of my tongue. The surgery happened on a Thursday, and I was home by Sunday. Surprisingly, the pain wasn’t that bad. The pain I did have came from the swelling. We expected swelling, just not as much as there was. I tend to breathe through my mouth at night, so my tongue would get dried out and swell even more, which caused it to hurt. There was one thing that was worse than the swelling though: the taste. The doctors warned me that I would have a bad taste in my mouth for a couple of weeks. I just didn’t know that bad meant really bad! I can’t even explain the taste. You have to experience it to know what I mean.
The first couple of weeks after the tongue reduction were a little frustrating for me. It took me a little time to figure out how to make certain sounds when talking. Before the surgery, I used to touch my tongue to my top lip to make “m” and “b” sounds. After surgery, my tongue was shorter, which made it more difficult to touch my top lip. Also, drinking out of a straw with a smaller tongue was a bit of a challenge. Once I got past these things, the tongue reduction was so worth it! My tongue looked much smaller, and people said it was easier to understand me when I talked.
Three weeks later, I went back to the clinic for a check-up. At this time, I only had one stitch left in my tongue. The doctors said my tongue looked good and that I could start eating by mouth again. In the following months, three kinds of study models of my mouth were made. First, impressions were taken, which showed the doctors how my teeth were positioned in my mouth. Next was a face bow, which showed the angle of my jaw in conjunction with the jaw joint. Lastly, a bite registration was done, which showed the doctors where I was able to bite down. After the study models were made, it was decided that I needed one more tongue reduction. During a single tongue reduction, only so much fat can be taken off at one time without damaging the tongue. After the tongue completely heals though, more can be taken off. On January 4th, 2011, I went in for my second tongue reduction.
The plan this time around was just to take a little bit more off. When the doctors started doing the surgery though, they decided a lot needed to be taken off. In all, they took 32 ml off of my tongue, which is a little over an ounce. This surgery took a little longer than the first since they took more off. There was a little bit more pain this time, especially on the bottom of my tongue, but it still wasn’t too bad. Since the swelling was so bad after the first surgery, the doctors put me on steroids a little earlier, which definitely helped! There was still swelling, but not like the first time.
After two or three weeks I was able to eat whatever I wanted. Once my tongue was totally healed, it was time to expand the roof of my mouth and straighten my teeth. On June 13th, 2011, I got braces. For me, the first couple weeks of braces were more painful than the tongue reductions. It takes a while for the inside of the mouth to callus up and get used to the braces. Once all this happens though, the soreness kind of goes away.
Around a month later, the orthodontist put an expander in the roof of my mouth. An expander breaks the cartilage in the roof of the mouth into two, thus expanding it horizontally. I was pretty nervous about getting an expander. Breaking the cartilage in the roof of my mouth sounded pretty painful. It was kind of uncomfortable while the orthodontist was putting it in. After that though, there wasn’t much soreness. For the first month or two, the expander had to be adjusted daily. The expander comes with a key, which is used to turn it, which expands it more. After expanding it, there is a lot of pressure, but it goes away pretty quickly. Once the expander has expanded the roof of the mouth as much as possible, the expander has to stay in for while. After the expander has split the cartilage, the expander must hold the cartilage in place while bone forms in-between the cartilage.
I’ve now had braces for 8 months now, and the expander for 7 months. Right now, we are focusing on getting my teeth as straight as possible. Once that happens, the doctors will regroup and decide what to do next. The roof of my mouth has been expanded as much as possible with the expander, but it’s probably not enough. More than likely, it will have to be expanded more surgically. Hopefully I will be ready for reconstructive jaw surgery after that. Since the jaw surgery is supposed to be a really long surgery, the doctors might split it into two surgeries. I’m really excited about getting this surgery done. I’m not a very patient person; I want to have this surgery now! The doctors have explained to me several times though that we can’t rush this. If we want everything to turn out right we have to do this slowly. They say that I’m going to look totally different after the surgery. This is what scares me and excites me the most. I’m okay with looking different as long as it is in a good way. On TV, they always show all these celebrities that have had plastic surgery, and they look worse than they did before. I don’t want it to turn out like that. I do trust my doctors though, especially my oral surgeon and plastic surgeon. They are both very personable and have a great sense of humor, which makes it easy for me to trust them.
Some people don’t understand why I want to have reconstructive jaw surgery. Some ask, “Why would you go through all of this when you don’t have to? Why do it when you look just fine the way you are? Will it really be worth the pain? What if all goes wrong?” I know I don’t have to do this and I appreciate it when people say I look fine like this. Even though looking different has potential benefits, it’s not all about that. If I get my jaw fixed, it’ll be easier to chew and swallow food, and I won’t have to worry so much about getting choked. Also, I won’t have to worry so much about people not being able to understand me when I talk. As far as the pain that may go along with it, I believe in the saying, “No pain, no gain.” My father likes to say that I’m a glutton for pain. This is not true at all. I dislike pain just as much as the next person. I do know though that sometimes pain is worth it. In 2004, I had to have a feeding tube. I had a lot of pain the first month I had it. The pain was worth it though because the feeding tube increased my quality of life by a lot. The jaw surgery will probably be painful, but I’m pretty sure that once everything is said and done, it’ll be worth it. There are people who think that jaw surgery is not a good idea, and they worry everything will go wrong. But what if everything goes right?