My Story: Finding Adult Cleft Care

By Patricia Simon posted 10-09-2017 07:57 AM


pat1.jpgWhen 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".  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, he could not get to the deep root to entirely clean up the infection. This doctor 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 didn't cover the procedure.

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 to no avail.

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 oral surgeon?  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.

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? 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. Thank goodness for credit cards. I know I'm not alone. Who could pay out of pocket to fix something I was born with? My insurance company already declined coverage.

pat_2.jpgThe day came and it was mostly a blur. At the end of the surgery, I was told they had to remove my 2 front teeth. I was put on additional antibiotics, told to wear a 'flipper' to keep stitches intact and sent home. I went back in @2 weeks and had the sutures removed. 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 heck was that??? I immediately called the oral surgeon.

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. Yes, I was a registered nurse. I should have known better. But I was all alone in this maize of trying to find the right doctor and treatment. I felt totally helpless and hopeless.

I immediately called my primary care physician and explained the situation. She gave me the name of an ENT. He gave me the name of a plastic surgeon and quickly sent me on my way.  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?

Had I known at the onset to look at the American Cleft-Craniofacial Association website, under Resources, I would have found appropriate health care providers. But why didn't the dentists and surgeons that I had gone to refer me to a craniofacial team? Were they not aware of the American Cleft-Craniofacial Association list of recommended health care professionals? 

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!!  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. 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 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. After over two years of waiting for my bone to grow in my palate I now have two beautiful front teeth.  The team at the UI Craniofacial center are angels. They treat all patients with respect and provide the best care possible.