copyright © 1997 Wide Smiles, Inc. This Document is from WideSmiles Website - http://www.widesmiles.org/ Reprint in whole or in part, without written permission from Wide Smiles, is prohibited. Email: WideSmiles@aol.com
Shane's Introduction
Hello all,
My name is Shane and figured I should introduce myself to you all. I read many of your stories here and it was nice to know others have had similar experiences, and I was impressed at how brave many of you were sharing your stories. So I figured I should share mine.
I am 26, male, and have a Bilateral cleft palate/lip. I live in Maryland, near Washington DC. My mom was a 18 and a single mom when she had me. She was very lucky to get help from a university hospital, they had a cleft palate clinic that helped her with everything from expenses to finding a surgeon. I had 3 surgeries before I was five; to close the palate, repair the nose, and they did a pharyngeal flap. At the time, they believed it was best to wait until most of the child's growth was done before attempting any final structural or cosmetic surgery. So my family and I waited until I was about 13 to begin planning any follow up surgeries.
When I went back to my plastic surgeon he explained that in the last 10 years or so that they had learned it was best to do all the surgery as early as possible and let the child's growth help repair/solidify the modifications. So basically I was the last generation of older techniques. I went ahead and had a bone graft from my hip to my cleft palate and reconstruction of my nose. My jaw was wired shut for about three months and I was on a liquid diet. I went to school during that time with bandages over my mouth. After all the stitches and bandages were removed I started rejecting the bone graft. My body rejected the bone slivers that had been meshed into the cleft and they were pushed out through my gums. That was a very long slow process, waiting for all the bone splinters to come out. It was like have a jagged splinter in my gums from the inside. So a year later I went back for a second bone graft and an abby flap (they cut skin from my lower lip and inserted it between the cleft in the upper lip to make more room. Since the artery to the skin graft has to be maintained until the graft is healed my lips were sewn shut this time as well as my jaw being wired shut. I had a small corner of my mouth where I breathed and took liquids it. I had my mouth like that for about 4 months this time. Again the bone transplant was rejected. My doctor explained to me that each time my body rejected the bone implants the likely success of a following surgery was lessened because of scar tissue generated. I had small 'bone island' in the middle of my cleft that had two very deformed teeth (my front teeth) that was still very unstable and I still had problems with leakage from my mouth to nose from fistulas in the palate. I had had braces on for the last 5 years or so to try and help stabilize those front teeth/bone island. So we decided to try another surgery. So I had another 3 months of liquid diets and that bone graft was rejected as well. My doctor told me there was nothing more he could do for me.
After three failed bone surgeries I was very frustrated and tired but knew I couldn't give up and that my jaw had to be taken care of. So we found a specialist in Dallas, Texas and flew out to see him. He was very highly recommended and was felt very positive that he could help me. By this time I was in college and arranged to have surgery over the month long winter break my school had. I had a bone graft from my hip (other side) and more reconstruction done to the nasal passages and the roof of my mouth. I stayed in the hospital there in Dallas for about a month so the doctor could see me daily. Then I flew back to Maryland to start school. My mouth was still wired shut and I had bandages over my mouth. Over the next two months I flew back twice during the weekends for check ups and then to have the stitches removed, etc. This surgery was much more successful but there was a small amount of bone rejection. I went for a follow up surgery that summer and everything was pretty much finished to my satisfaction. During the surgeries the doctor had removed the 'bone island' and my two front teeth so he could start from scratch. So I went to an orthodontist and had a full bridge built to replace my front teeth.
After a very long time it seemed everything was done, my speech was much better, the functionality of my nasal/oral passages (separation of) was complete, and I was moderately pleased with my appearance. Then in my sophomore year of college during my winter break I went skiing up in Canada and had a major wipeout. I hit somebody's shoulder with my face pretty much and passed out on the slopes and was taken to a local hospital. I had a concussion but when I woke up I knew right away that my bone work around my cleft had broken, I could feel it wiggling. They took X-rays and discovered a small crack at my temple ( the impact was high on my cheekbone). They guessed that if I had had a normal jaw that the accident would have split my skull at my temple, but since the cleft was weaker acted as a natural break point. The doctors saw all the metal screws and plates in my jaw and were pretty freaked. They said I was alright to walk out of the hospital and even if I weren't, they would not have been capable of dealing with me. So I took a plane home and called my doctor in Dallas and scheduled another surgery.
This time the doctor used my skull as the donor site for the bone graft. All things considered, by this time things were pretty routine and it seemed to fly by. The doctor had to modify my bridge and cut away part of my upper lip and sewed it to the gumline to act a natural band-aid to prevent infection. He told me to go ahead back to school and he would see me in three months to cut the stitches and reattach the lip to where it belonged. Like after every other surgery it was weird right afterwards, my mouth feeling different, relearning how to talk, etc, but like always it eventually became 'normal' after a month or so and you kinda learned to live with the annoyances in the back of your mind. We had originally scheduled the surgery for my thanksgiving break. I didn't worry about it too much and like usual left the details to my parents. That had kinda always been my philosophy. I never really stressed out much about the surgeries, it was just something that had to be done. I let my parents worry about the details and I showed up when they told me too. (now I kinda realize that was a way to avoid dealing with it). So I was back at college and called my mom about a month before hand to ask when the flight to Dallas was. She told me that there was a problem, that the doctor's office wouldn't schedule the surgery because insurance had not paid the last bill. I was absolutely stunned. I remember locking myself in my room for about a week just completely numb (I was an RA at the time in college and was supposed to be out there helping others). I could not believe that they were going to leave me like I was. Insurance was arguing that they had already paid for 'that procedure' once and were not going to do it a second time. Like if you break your arm and get a cast put on it, you can never claim that arm again if it is later broken. I was angry at the insurance and angry at my doctor....I was just very, very angry. So after going in circles, threatening legal action, etc, my break came without and surgery being scheduled. I was at home the day before thanksgiving when my doctor called to talk with me. He said he knew there had been a misunderstanding but his office managers had never explained it to him. He said he wanted to do the surgery as soon as possible and wanted to know if I could still fly out that week. Again I was kinda stunned. It made me angry that he expected my family and I to be able to alter our plans and fly to Dallas (not to mention how expensive it is to get tickets without getting them in advance). I was too angry to except and hung up on my Doctor. My parents tried to explain to me that it wasn't my doctors fault , that his office hadn't consulted with him. I still don't know if I agree with that. A doctor, or any employer, is responsible for is employees. Eventually my parents talked me into going back to finish the procedure. I went back during my christmas break. I was still very angry but managed to be polite, the doctor finished the surgery and I went home.
Its been 4 years since my last surgery but I still have some work to do on my bridge. One of the things that made me initially hesitate about writing widesmiles is that right now I don't have the most positive attitude. For a long time I did, I had a deep faith in god and trusted that everything would eventually work out. I had been around hospitals my whole life so I never got nervous when I was there. But I've really spent the last 4 years being pretty angry. I feel like the more surgeries I had to improve my outsides, the uglier my insides became. It hasn't helped that I have had very little of a social life. My last relationship was over 6 years ago. I was teased a lot as a child. I'm very self-conscious now and feel trapped in a viscous circle. I know its as much attitude and personality that make a person sociable as it is looks, but the shyer I get the more people seem to hesitate about approaching me. I've been seeing a counselor but that hasn't helped a lot.
I really wished I'd had access to a group like this when I was younger, it would have been very good for me. I'm glad that information like this, and surgical techniques available will make life so much easier for kids today.