By Lucy Davies
January 27th, 2017 is a date I will never forget. To most people, it marked the one week anniversary of Donald Trump’s inauguration, but I had something far more personal scheduled for that day – my first dental implant surgery.
When growing up with ectodermal dysplasia, “implants” was a word constantly thrown into conversations. It was usually as a casually mentioned end-all-be-all solution without much thought behind the actual process. Since I was able to comprehend words I’ve been hearing different variations of,
“When you’re older, you can get dental implants, and you won’t have to worry about all this anymore.”
I’ve even uttered the phrase myself in various presentations, hearings, and casual conversations. Seeing the word “implant” circled in red on a calendar with the word “surgery” after it gives it a very different meaning.
I was born with hypodontia nail dysgenesis (also known as Witkop syndrome), and I was lucky enough to have all my baby teeth. Unfortunately, I would only have four permanent teeth erupt later in life my two front teeth, which are cone-shaped and twisted, and my two rear molars.
When I turned 18, my dentist determined that a lot of my remaining baby teeth (one was removed when I was 15 due to an abscess, and another was damaged by my braces at age 12 and had to be pulled) were extremely eroded and in danger of failings. He suggested that we seriously start thinking about beginning my dental implant process.
Dental Implant Journey Begins
We began making a plan for the implants in the fall of 2015, with hopes of having the major surgeries out of the way before I went to college the following year. My pediatrician assured me I was fully grown. My dentist at the time thought my bone had matured to the point where some of the earlier procedures could be done without concern.
However, due to some unforeseen delays on the side of our dentist, no concrete plans were put in place until March. By that time, it was too late to proceed before college, and we had to start considering other options.
I was devastated. I had hoped to at least have my upper jaw done by the time I left, but now it was obvious that wouldn’t be possible. Confused, and feeling a little betrayed, we started to research dentists near the University of Delaware, where I would be attending the next fall.
Finding a National Foundation for Ectodermal Dysplasias Dental Treatment Center
I was fortunate enough to stumble upon the University of Pennsylvania (UPenn) Dental School which is after some more research, I discovered they were one of the NFED’s Dental Treatment Centers. They had multiple ectodermal dysplasias experts on site and even had a special program specifically for ectodermal dysplasia patients needing implants.
But the best part was that the hospital is only 55 minutes from my school. We looked at a few other options in Boston, with the possibility of doing my major surgeries over breaks. But, after going through all the options and taking into account previous difficulty with long-distance dentistry, I decided I would be more comfortable having the work done closest to Delaware, and so it began.
My Treatment Plan
We first met with the experts at UPenn in April 2016, when I went to visit the University of Delaware for accepted students day. After our initial consultation, it became clear that the implant process would be extensive and take up to 18 months total.
It consists of three main components – the upper implant placement surgery, the lower implant placement surgery, and the crown placements that will take place over several weeks. At that point, it was also unknown whether or not I would need bone grafting, and if so, how extensive it might be.
I returned in June for my college orientation and had all sorts of weird and wonderful CT scans, x-rays, and photos taken of my teeth. My teeth were as well-documented as a newly discovered dinosaur skeleton. It was determined that I would need bone grafting on my lower jaw, but it would not be as major as anticipated and could be done at the same time as the implant surgery.
With all the plans in place, a date was chosen for the first surgery – January 27th, 2017. I would have the surgery a week before the end of my winter break, so I would have enough time to heal before going back to school. This was slightly inconvenient, as it meant my mother and I had to fly down to Delaware and stay in a hotel for the surgery itself, and for a three-day recovery period afterward. We figured it would be better to be inconvenienced for the two surgeries. I wouldn’t have to travel back and forth to Boston for the more tedious crown placement process.
Slight Change in Plans
When we first booked the surgery, it still didn’t seem real to me. It was just this fantastical concept that we’d been talking about since I was four years old. It wasn’t until December that I really started to understand the magnitude of what was occurring.
Just before my Christmas break, I went back to UPenn one last time to finalize what would be done during the first procedure. I received a new temporary bridge that would be taken off for the surgery, and replaced after it was done. They did a final set of CT scans that would be used to create a 3-D template for my mouth to help them place the implants.
I was informed I would be having my six remaining baby teeth extracted from my upper jaw. This would leave only my two front, permanent, pointed teeth, and my two rear molars. Five titanium implants would be put in their place. The choice to remove my baby teeth was made because it was clear they would not last more than another three to five years. My dentist explained that it would be better to design the implants around the teeth not being present. This is opposed to fitting prosthetics around the teeth. Then later having to redesign those prosthetics when my baby teeth inevitably failed.
It was also part of the original plan to place six implants, not five, but it became apparent from the new CT scans that I would need minor bone grafting in one area (which would be done during the surgery), and the sixth implant would be placed at a later date. With all this out of the way, I happily departed Pennsylvania and went home for Christmas. I blissfully forgot what would occur almost exactly a month from then.
Reality Sets In
On January 26th, it became real. My dad dropped my mom and me off at Logan airport. Going through security, I realized it was the last time I would be able to get through the scanner without telling them about my implants first.
That was it. That was the moment the mysterious “implants” became my implants. I started to get scared. Other than a few endoscopies, I’d never had surgery before. I wasn’t overly enthusiastic about the idea of a well-trained dentist, drilling strips of metal into my face.
I was also scared of what the recovery would be like. Would I be in a lot of pain? Will my eyes swell up? What about bruising? Can I go out in public? What pain killers would I be given? Will the painkillers make me sick? All of this was tumbling around in my head, but I knew this was something I had to do. It was absolutely worth the sacrifice.
I woke up on January 27th with butterflies in my stomach from a combination of hunger and nerves. I wasn’t allowed to eat anything because of the anesthesia. We drove from our hotel in Delaware to UPenn. We parked the car down the street and walked to the dental school. Everything felt so surreal; it was like I was already under anesthesia. As we reached the door, I paused and realized the next time I walk through the doors, my life will change forever.
Calling for the Tooth Fairy
The surgery itself was painless. I was put under moderate consciousness anesthesia, so I was awake and aware of my surroundings. But, I have almost no memory of the procedure itself. I vaguely remember feeling I had no teeth left, but the thought didn’t seem to bother me. To my drug-altered brain, it was just a simple observation.
As the anesthesia started to wear off, I asked my mom if I could see my teeth. She handed me a paper cup, and in my still slightly loopy state, I diligently picked up each one. I inspected it, said goodbye, and placed it back, dropping several on the floor in the process. Apparently, I also made some mention of the tooth fairy and expected to be well paid for my ordeal.
The recovery over the next few days was far more relaxed than I had anticipated. I spent most of it in my hotel bed, watching movies, with ice packs strapped to my head. With the painkillers, a constant dull ache was the only discomfort I experienced. My swelling was minimal, although I did somewhat resemble a chipmunk.
I was even well enough for some of my friends from school to visit me! We flew home on the Monday following my surgery. Over the next week, my swelling decreased dramatically. I did develop some minor, yellowish bruises on my chin, and under my eyes.
It has been a long road
Now, several weeks later, I am happy to say that my face has returned to its original state. I no longer need to take painkillers. I also went to the dentist for a follow-up appointment a few days ago – my gums have healed fabulously.
It’s been a long road to get to this point, with a lot of hype, confusion, hope, pain, disappointment, and finally, joy! I’m so excited that I’ve finally begun this long process. I can actually say I’m looking forward to my next surgery. It will put me one step closer to getting my new smile, but until then,
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I’m going to keep on smiling anyway.
5 comments on “Keep on Smiling: The Story of Lucy’s First Surgery”
So happy for you,this give courage as my daughter still need to go through the same process.
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Thank-you! It’s so nice to see that people enjoyed reading about my experiences!
Hi. Hope you’re doing great. I’m in this process too. I’m going to have bone grafting. My lack of bone in the upper jaw is so bad the surgeon is going to take bone from both hips. I thought he will do upper and lower in same surgery but he told me no. Will be one at the time. I’m so terrified. I never had a surgery in my life. Which part of the process are you right now?
What did you do up to the point of turning 18? We’re you able to keep all your baby teeth? How was the treatment up to that point of getting your implants? My daughter and son both have this condition and will likely go through a similar process. I would love to connect if possible! We don’t know anyone with this condition.
Hi, Lindsay. If you would like to connect with other families in addition to Lucy who have this condition, we can help! If you fill out this form at https://nfed.org/get-involved/connect-our-community/ and indicate your syndrome, our team will send you a list of people who have it. A part of the process is agreeing to have your name on the list, too, so others could connect with you. We also have a private Facebook group for tooth and nail syndrome which you can access here: https://www.facebook.com/login/?next=https%3A%2F%2Fwww.facebook.com%2Fgroups%2Ftoothandnailsyndrome%2F. Hope this helps you! ~ Jodi, NFED, Director, Marketing and Communications