When I went for my bi annual dental cleaning two years ago, I never knew that experience would change my life.
X-rays taken during the dental cleaning showed I had an abscess by my front capped tooth. I had no idea-no symptoms. My dentist recommended that I see a colleague right down the street that specializes in oral surgery. I made the appointment and went to see him for a consult. He took more X-rays and confirmed I had an abscess and recommended surgery. But, he was clearly nervous. He kept tapping his foot while telling me how many problems I had going on-infection, bone loss, need for root canal, antibiotics and potential loss of my two front teeth. I asked him if he ever treated a patient with a cleft palate and he said "no". I paid the $275 dollar consultation fee and left. This oral surgeon clearly was overwhelmed and there was no way I was going to have him do surgery. The foot tapping really did it for me.
I then called my dentist and he gave me the name of another dentist who performs root canal surgery. I saw the dentist and underwent root canal surgery, however, the dentist could not get to the deep root to entirely clean up the infection.. This dentist also had never treated a patient with a cleft palate. I was put on antibiotics and told to find an oral surgeon. Even though I had dental insurance, it really didn't cover any of the procedure. I believe that root canal was about $750 out of pocket.
I left that dentist not knowing what to do next. I was on antibiotics due to the infection and knowing I had to find an oral surgeon who could help me-and quickly. You don't want to fool around with an infection in your mouth. But, I had no where to go. My dentist recommended the oral surgeon-foot tapper-who had no clue how to treat me and I just went to the dentist he recommended for the root canal -which was unsuccessful.
I briefly tried searching the internet for anyone that treats adult cleft palate patients with dental needs. I kept searching but could not find anyone.
I called one of my best friends and asked if she knew of a good oral surgeon. She did some investigation and called me back with the name of a well known oral surgeon. I made the appointment and went to see him for a consult. His practice was fairly large with multiple oral surgeons and assistants sharing the practice.
This oral surgeon did more X-rays and a more thorough dental exam. He recommended further surgery which would involve using cadaver bone to build up my palate and possible removal of my 2 front teeth to get to the root of the infection. I asked him if he ever took care of a cleft palate patient and he said "no". But, he reassured me that he could do the procedure. I had a decision to make. Do I go with this dentist? He seemed to know what he was doing and he came with good references. I really didn't have a lot of time to keep searching for an oral surgeon since I still had the infection in my mouth and was on antibiotics.
After talking with Colleen, who was with me for every appointment and procedure, I decided to go with this surgeon. I made the appointment and they required that I pay for the surgery upfront. I believe it was $4, 750. He said if I wanted anesthesia during the procedure that it would be an additional $1,800. What? That's crazy. He said I would pay the anesthesia company directly. I told him I would think about it. My choice was to be given a pill of Valium while in the office prior to the procedure and then be given injections of novacaine throughout my mouth. The procedure was to last a few hours. After laying awake at night, I decided to spend the $1,800 dollars and go with IV sedation.
The day came and I went to Palatine to have my oral surgery. It was mostly a blur after I took the Valium pre-op. At the end of the surgery, I was told they had to remove my 2 front teeth. I was put on additional antibiotics and sent home.
The next day I called the office and talked to the surgeon and said I had a horrible stench coming from my mouth. He told me to wait a day or two and see if it was getting worse. The next day I called him again and asked to be seen. The stench was horrible. He ended putting me on an additional antibiotic and sent me on my way.
The additional antibiotic seemed to do the trick. I went back in @2 weeks and had the sutures removed. The surgeon removed the sutures and also fitted me with a "flipper" to wear. The "flipper" is like a retainer with 2 fake front teeth. You have to remove it to eat. So, he removed the sutures, gave me the "flipper" to wear and I was to continue with the antibiotics.
I got home from the appointment and was in the kitchen drinking a glass of water. I took a drink of water and the water shot out of my nose and a sucking blow hole noise came out of me. Oh my God. What the hell was that??? I immediately called the oral surgeon. He told me to come in the next morning to see me. I knew the water coming out of my nose and the sucking noise was not a good thing!
The next day I saw him and he explained the surgery probably created a small hole in my sinus. He said it was, "worrisome". He told me that he thought it would close on its own over time. He told me to keep taking the antibiotics and to wear the "flipper".
There comes a time in your life when you know something is not right. You listen to your body and your common sense. This was one of those times. And, I listened and heard the message.
I immediately called my primary care physician and explained the situation. She gave me the name of a ENT doctor. I saw the ENT doctor. He did his exam and I looked over at him. He was looking up at the ceiling with a dreadful look on his face. I said, "what's wrong?". He said that he could not treat me because it was out of his scope. He gave me the name of a plastic surgeon and quickly sent me on my way. I got into my car and cried. The look on this doctors face was one of horror. I was so mad at him. Why didn't he put on his doctor mask face? A patient should not look at the doctor and see horror in his face. Shame on him. How would he like it if he went to a doctor and looked over at his face only to see despair.
So, I then made an appointment with this plastic surgeon that he recommended. He examined me and said he could do surgery to help with the sinus and help with improving my breathing. I asked him if he ever treated a patient with a cleft lip/palate. And, he said, "no." He was all set to schedule me for surgery. I told him that I would call him if I decided to go with him.
Frustrated, disappointed and scared. No one seemed to know how to treat an adult cleft palate patient. What was I to do?
I went back to the Internet and searched and searched for answers and help.
In the mean time, I had to go back to the oral surgeon because I developed a yeast infection in my mouth. I was put on yet another antibiotic. The inside of my mouth was all raw and red.
I made an appointment to see my infectious disease doctor-Dr. Leonard Kaplan of Northshore Health Care. I had previously been treated by him due to getting 4 bouts of C. Diff from being on antibiotics. When I saw him I went over all the antibiotics I had been on and what doctors I had seen. He asked me if any doctor ever ordered a CT scan of my face. I said "no". He ordered the CT scan. He called my oral surgeon and adjusted the antibiotics I was on. This doctor definitely knew his stuff. Thank God I had Dr. Kaplan in my corner.
I then went back to the internet and continued to search for cleft palate doctors. I did find some but most of them treated children and not adults. I finally found the University of Illinois Craniofacial Clinic. I found the Golden Ticket. I won the lottery!!
I had an appointment at the University of a Illinois Craniofacial clinic. I brought a copy of my CT results as well as a list of doctors I had seen and medications I was on. The appointment lasted a few hours. I saw Dr. Cohen-the plastic surgeon, and had my hearing and speech tested. I had more X-rays and bone density of my mouth performed. Dr. Cohen answered all of my questions. He put my mind at ease. I finally found a doctor and team of doctors and nurses that knew what they were doing.
That was 2 years ago. And, I'm still going to UIC for care. I'm in the process of getting my two front teeth dental implants. It's been a long journey.
Dr Cohen performed his first surgery two years ago -took bone from my hip to build my palate. The second surgery was in October 2015 where they did a lip revision, and made it so that I could breathe out of my nose. I've always been a mouth breather because I could never breathe in and out of my nose due to a deviated septum. Dr Reisberg also inserted the rods for the dental implants.
The team at the UI Craniofacial center are angels. They treat all patients with respect and provide the best care possible.
Having an abscess and trying to find the appropriate doctor to treat me really changed my life.
In the next few blogs you will see how this experience changed me-for the better.
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