Five Years

Over the past 5 years, I have searched for my Miracle Doctor, MD. The person who would be able to provide a solution. The person who understands the pain I endure. The person who would see me as an unfinished work of art.

At the beginning of my search, I didn't have health insurance. I had a dentist who I went to for a root canal. He suggested I see a local Maxillofacial Surgeon, Dr. Gagnon. My mother paid for my office visit with Dr. Gagnon. He was very nice from the first moment we met. Very sympathetic to my situation and understood the urgency to have my mouth repaired. Knowing that I did not have health insurance, Dr. Gagnon offered his services of pulling my teeth free of charge. What Doctors do that these days?

I felt a big sensation of relief after that first visit with him. Finally, I was going to have my mouth fixed and look like a normal woman. Dr. Gagnon said, find someone who will make a partial, or denture, and I will take care of removing any or all of your teeth. Wow!

It was a very slow start on my journey to find my Miracle Doctor. While waiting for Doctors to return my calls, two teeth became badly infected. I called Dr. Gagnon. He pulled them both, keeping his word, at no charge. Of course while I was there, he pushed me to find my Miracle Doctor.

I started making appointments with regular dentists, orthodontists, specialists. During the first two years, I couldn't even get a dentist to do a filling, let alone a denture or implants. They were all afraid of the complexity of my mouth, they wouldn't touch me. Some said it was pointless, the teeth just need to all come out.

By the end of the 2nd year, I was desperate. I had also become engaged. I wanted so badly to have a Smile to show off in my wedding photos. To this day, I have no pictures of myself with my mouth open. It's embarrassing, it's shameful, and quite frankly it's disgusting to see.

I truly believe I have missed out on great job opportunities because of my mouth. With my speech, people tend to focus on my mouth when I talk. Employers don't want someone with a speech problems and a bad looking mouth, to represent or speak for their company.

I was having the worst time in my entire life finding employment. I was planning a wedding in which I, like most brides, would be the focus of in pictures. I was urgently trying to find someone that could save me, and my big day. As I sat at home, I was watching Oprah one day. It would become of one her most famous shows, as she gave everyone in the audience a brand new car.

I thought to myself, if she can do that, can she help save my mouth? So I jumped on the computer and emailed my story to her. I wasn't asking her to pay the bill to get my mouth completely fixed. I was simply hoping she would love to know more, possibly help me find a sponsor and doctor, and then show my transformation from start to finish. She's a humanitarian, she's a daytime talk show host, and I felt my situation was the perfect the way for her to help and benefit her show with a touching story and a happy ending.

My email went unanswered. My wedding day came and went. All the pictures from that special day are beautiful photos, with my mouth closed. Every time I look at them, all I see is a reminder of bad, painful teeth that prohibit me from Smiling. It took my husband two years to convince me to have our wedding photos printed and framed. He's proud of them, but I don't enjoy them like I should.

Soon after we were married, I was able to get on his health insurance. I also finally landed a job. Not the job I really wanted, but a job I really needed. I'm not seen by clients or customers, I don't have to speak to anyone, there's no telephone to answer, I just sit alone and do my work with my mouth shut. Two and a half years later, I'm still in the same job, which I love because I don't have to face anyone publicly or try to make people understand me on the phone.

Before I was finally insured, yet another dentist had referred me to a Prothodontist. He's the only one we have in my city. (For several reasons, I will only refer to him as DJ.)Mom and I went to see him and I was very excited and hopeful. That is until I stepped into his office. Hi-tech toys everywhere. He had the full leather dental chairs, a computer next to each dental chair, a very large Flat LCD TV in the waiting room, and of course one hooked to the dental chair in each room. As we were waiting, his employees were talking about the trip that the entire office was going to be taking to Las Vegas.

When DJ walked into the room for my visit, I felt tension immediately. I can't explain what it was, but I did not feel comfortable. We explained my current state, explained that I was in pain, explained what I was hoping to accomplish. He took one look in my mouth and commented on how poorly my palate had been built. (What? No other doctor had ever said such a thing?!) He said there was a risk that pulling my top teeth could cause my palate to collapse. He stated that the top fixture would be the easy part, but the bottoms would be the real challenge. (What? My top has a hole, my top has jaw bone missing, my top has a surgically placed palate! My bottom was normal!)

DJ said, get all your teeth removed except the bottom two eye teeth. I can make a top denture with an opturator to seal your hole. DJ could also make a bottom denture, but he said my gums are too shallow and it probably won't stay in place. Not a problem though, because he said we could always insert tiny implant snaps if we needed.

DJ wanted to know what kind of insurance I had. Well I had none at that time. He chuckled at me and informed me that this would not be a cheap process. I was not laughing. He estimated that the total cost would be between $20,000 and $24,000. I certainly don't have that kind of money. I asked about payment plans, but that was not an option for his services. In fact, he was requesting $8,000 cash up front to even begin any work. He referred us to CareCredit for the balance. I would not qualify. My mom applied for it and was accepted, however the interest rate was incredibly high. Not only that, but she was retiring by the end of the year.

I just couldn't let my mother put that much on a high interest bearing account near her retirement. My hope was shattered, but it didn't end there. The past 3 years coming to a blog near you.

Quality Of Life

The older I have gotten, the worse my mouth has become. I come from a family with genetics for bad teeth. My mother was in full dentures well before she turned 30. My aunts have had numerous caps, root canals, fillings, etc. No matter how much we brush, they decay. Soft, weak, and thin enamel plagues us all.

So over the years, my teeth have broken at the gum line, have decayed from the gums up, have just needed pulled. I paid big bucks for 2 root canals, only to have the teeth break off within months. Brushing my teeth the past two years has almost become unbearable. The enamel is so worn, that my nerves are not protected anymore.

Along with the bad teeth, I have the issues with my palate. The gums around my fistula are tender. They are often swollen and red. I also get sick alot. It's been determined that I'm more prone to infections since my nasal cavity opens up into my mouth. Just a breeding ground for bacteria. Headaches are very common for me as well. Over the past 7 years I've been suffering from Migraines. Headaches so intense I can't stand light, noise, or even having my eyes open.

What is eating food like for me? Very limited and often times painful. I drink fluids more than I eat food. I can't eat chips, no thick or chewy meat, no carrots, no apples, no crunchy peanut butter and cereal has to be a little soggy. Some days I can't handle more than one snack or meal, because it causes so much pain to eat. Last night I tried eating some buttery shrimp at a Chinese Buffet, but couldn't. I was slowly chewing 1 piece of tender shrimp, and it was like holding a fork to a metal filling.......sharp, excruciating pain.

Eating soup is a circus act! Sometimes when I try to eat soup, as my tongue presses against my palate, it forces the soup up into my nasal cavity, which then trickles out of my nose. It's a very attractive sight. Smile. Even ice cream or pudding can become a similar feat to the woman shooting milk from her eye ducts.

I constantly get food stuck in my fistula. I've had to dig out whole corn kernels, chunks of egg, green beans, just a smorgasbord of food items easily get lodged in the hole.

This is a big beginning into how I live daily. There is more to come so please stay tuned......

Development of a Smile

Welcome to Stephanie’s Smile. Stephanie, me, is beginning a mission to find and seek help from others in an effort to have a normal, healthy life and smile. Something that I feel alot of people take for granted.

Over the past 5 years I’ve written to everyone from my local news agencies to Oprah Winfrey. Not one of them even acknowledged that I had written. So today, I write to you. If your reading, that means your even slightly interested in hearing me. I Thank You for taking the time to let me speak. If I do nothing but educate you, then my time has been worthwhile. If you share a commonality to my situation, I would love to hear your voice too.

Here’s my story.

I was born in Kansas in 1971. (I’m 35 for those trying to do the math. Smile) I was born with two birth defects that some people know very little about, although alot of you may have seen a person inflicted with at least one. Perhaps you just didn’t know or understand what you were seeing.

First is a Cleft Lip, more commonly referred to as a Hairlip. Medical definition: any of the clefts between the embryonic prominences that normally unite to form the face. Basically my upper lip was split and extended into my nasal cavity.

Second is a Cleft Palate. Definition as given by The Free Dictionary: Cleft palate is a condition in which the two plates of the skull that form the hard palate (roof of the mouth) are not completely joined. The soft palate is in these cases cleft as well. In most cases, cleft lip is also present.

For the first several months of my life, my family fed me with an eyedropper. Since I had no palate, I was unable to suck from a bottle. My mother sought care from a wonderful doctor, rest in peace, that surgically repaired my cleft lip and then months later, my cleft palate. Seeing others with a cleft lip, I feel fortunate that I look as well as I do. Especially since we didn’t have the medical advances that we do today. Upon meeting me initially, most people assume I was injured in a car accident or something. (I also have the luxury of using makeup to help cover my scar, which gives me a little more confidence in my appearance.)

I underwent 4 major surgeries from age 1 to 12 to repair my cleft lip and cleft palate. My mother did not always have insurance once my father walked out on us, so she turned to the Shriners for assistance. If it had not been for the Shriners and the work they do, I can’t imagine how I would look today.

After my first surgery was complete, the doctor told my mother not to expect for me to get teeth. There was a slim chance that teeth would come in since I had no roof in my mouth, which therefore gave me very little gums on the top. I did get teeth and terrorized my mother with the teething process just like any normal baby would. Smile.

However, my teeth did not come in normal. Many of them, actually most of them, came in crooked or at an angle. Some came in crowded behind others. This made dental care very difficult, as it was hard to get them clean. I began to get cavities very early in life. Mostly on the teeth that came in weird or in the back of others. It was easier to just pull them instead of filling them, since they weren’t where they should have been or if they were poking out at an angle rather than down.

Based on what you've learned so far, are you starting to get an image in your mind? This is the start of the picture I will paint for you. More to come.........Smile.