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Medical Bills

Ameloblastoma is an expensive condition. So far I have racked up about 31K in medical bills, and I have yet to do the reconstruction. Luckily, is do have insurance although my deductible is 10K. The biggest cost was the hospital stay and the surgery. That was about 40% of the bill. The insurance was able to cover most of the dental work that was done. From other websites I heard of some insurances fighting covering the obturator. I had a small fight but after a phone call the insurance agreed it was not cosmetic and covered the device. I will try and post a breakdown of the hospital bill. To this point I have paid about $10,050.  The hospital was able to put me on a payment plan to better manage the payments.

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Obturator 2 pictures in mouth

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obturator 2 with bulb and hooks

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obturator 2

Orbtuartor 2 is a lot nicer than the surgical. It fights like a retainer and doesn't slide around. The surgical always feels like it will fall out because its really not strapped to anything. When you get your obturator two, it has hooks that attach to your top teeth. It has this thing called a bulb which helps fill the void left by the roof of your mouth. It also helps give your mouth shape. Without the obturator my mouth caves in.

Obturator 2 also helps you eat a lot better. Again, since it is attached you can chew a little better. Anything that required you to tear is pretty much impossible still though. No eating apples or biting into tough steak. It still hurts too much, because the bulb pushes on your gums- which  are still very tender.

Cleaning obturator two is a little more difficult. It develops plaque if you do not brush it daily. Warm water and a tooth brush help clean it. I also like to brush some mouth wash over it as well, because it smells.

I have to sleep with mine, and I pretty much never take it out only to clean it twice a day. Food gets stuck in it often, so you have to clean it at least 2 times a day. If I eat a meal that is chewy, I clean it afterwards in a bathroom as well. You really get used to it being in. It feels like your real teeth. The only times it gives me trouble is if I have to raise my voice. The metal kind of vibrates against my tooth, so I avoid yelling at all costs. Also, sneezing hurts, it will hurt and there is no way around it. You just learn to deal with it.

One thing you will have to get used to is your speak changing. I now have a slight lips. People around me say they don't notice it at all. I can tell though. I have a hard time pronouncing words, so I have to speak a little slower. Words that start with S or C, kind of blur together. Just something you have to get used to.

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Surgical Obturator in 1 month post surgery

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face still swollen 1 month after surgery.

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First Removal of Obturator. Everything is gone! you can see all the way through my nose. The tissue is still very soft, and irritated.

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The Obturator Take out

This was a great day. If you are going though this, make sure you pray heavy this day. This will be the first time you see your new normal. When the obturator came out, it was the first time I really realized what I had been through.  My dentist prepped me before she took it out. She left the room to give me time to process what had happened.Everything was gone. Literally everything in the top of my mouth was gone. I panicked slightly when it came out because I couldn't speak clearly and I felt like I was gasping for air. The roof of my mouth was gone, you could see up through my nose. There was no teeth, no gums, no bone, nothing. The first thing I said was, " WOW." Drool was everywhere. I felt the need to cover the whole with gauze, or something to fill the void. There was also a lot of blood. A lot of mucus. It smelled terrible too.

My dentist was gone for a while, so I just sat their drooling into the gauze. The first thing that popped in my head was to text one of my best friends Joe. He said I looked like a crackhead, and like that I didn't feel bad anymore. I texted my other buddies and everyone had a joke for me. I just kept laughing. I knew everything would be ok. My people loved me, no one cared if I looked strange.  When my dentist came back she told me, she had a girl going through something similar in the next room. She was not laughing. She took it very hard. Dr. Munz was with her for a whole consoling her. I felt grateful for such an A-hole group of friends. Be prepared for this moment. It really is a surprise and a reminder of the madness.

I still wore  the obturator, just not with the screws bolted down. This was a relief. My doctor told me that I would have a second one, and then a final. I could opt to have reconstructive surgery at a later date. It was important to have the obturators because Ameloblastoma has a high reoccurrence rate.  You can pop them in and out like retainers.

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Getting Back to Work

After a week I went back to work. I still had the surgical obturator in, but I had some issues happen where I need t return. I am a small business owner, and missing more time wasn't an option. Realistically, I would say I probably should have took another week. The doctors were telling me to take 3, because as a State Farm Agent, I do a lot of talking. Going back was difficult. I really couldn't open my mouth wide, but I was off the pain medicine so that was good. I still didn't have my normal energy, but it felt good to be out the house. If you are going though this, do not rush back to work if you don't have to. Take as much time as your employer allows.

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Fresh out of Surgery with the surgical obturator in. The right side of my face is swollen and so is my neck

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Getting home after Surgery

Whew!  The first thing they tell you is to stay elevated. You have to make sure you don't lay down flat. I set up shop on the coach. I was prescribed a ton of pain killers. I made sure that I did not take anything with opioids. This was tough. As soon as I got home and the IV wore off, I was at a 7/10 on the pain scale. I could feel everything in my mouth. I took the extra strength Tylenol and the allergy medicine. I can't explain enough how important it is to not sneeze. If you have to try and hold it in as much as possible. When you sneeze, everything hurts. It is like you rattle a cage. Even to this day, 4 months after surgery it still hurts to sneeze. During this time you will have a lot of boogers and a ton of mucus. All of it will be gross. All of it will be bloody. You can't really blow your nose so you have to pick at it with tissue. The allergy medicine and the nose spray helped with the boogers. It also helped me sleep, that's all I did on the first day home.

I could not walk for the first couple days. Every time I got up, I would feel really dizzy and start to gag. When I had to use the bathroom I would walk at a snails pace. Eating during this time was tough too. I pretty much was on the Kanye through the Wire diet. Liquid's were easy to get down, so that's what I ate. I also had a mouthwash that I had to take twice a day, and medicine to make sure I didn't get an infection. From what I researched, getting an infection would be the worst thing to happen after surgery. I made sure to swipe my mouth with peroxide a few times a day, and use hand sanitizer often.

At about the third day I started t feel better. I was able to walk without the nausea. However, I was DOG tired. I tend to have a lot of energy, I always have my whole life. But after surgery, my body just could only run in spirts, then I would just wipe out on the coach. This part was really hard for me, I could not do anything. Washing dishes was like running 15 miles. 

At the fourth day, I became really irate with the obturator. The screws that were holding it together were bothersome. I wanted to just pull it out of my mouth. I needed a break from it. It felt like a piece of metal was clamped with vice grips to my gums 24/7. On this day, I  felt the worst of any day throughout the process. I was just tired of not feeling like myself. I wanted to be normal again, I wanted everything to be the way it was. I was just trying to count the days down until I was getting the obturator out.

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The Surgery

To treat Ameloblastoma, you don't go through chemo. No pills or medicine. The only way to treat it is surgery. For me, I needed to get half of my upper palate, 8teeth, my gums, and the bone that connects my nose to my lip removed. My type of Amelo does not spread to other parts of the body, however it grows fast. It also has a high tendency to come back. The only way to make sure it didn’t come back , was to get rid of everything. I would be spending time with something called an obturator. It is a prosthetic that would help me eat and give structure to my face. In time, I could opt for another surgery to rebuild my face. Including taking bone from my leg to recreate my jaw. I chose to put this surgery on hold. I wanted to accomplish the removal first. The doctors at the University of Michigan did a FANTASTIC job of prepping me for surgery. Everything was mapped out for me.  I was really at peace with the whole process. My doctors made me feel confident, my wife had my back, my parents were there for me, and above all else my God was in control. I knew I would look different, and have to get used to eating and breathing differently, but I was fine. I always kept the perspective that someone else had it much worst. Other people were given days to live, I was told I would lose some teeth- Life wasn't that bad. On Jan 8th, 2018, the day before my birthday -I had my surgery. Surgery was pretty standard. I got in, met with the surgeons, nurse, and anesthesiologist. I was taken to a prep room and I waited to go in. This experience really helped me with perspective. In my prep room I could hear the stories of other patients. I had a man who lost a limb due to diabetes, a woman going through dementia, and another individual that had heart surgery all in their past. Again, here I am getting some teeth removed. I felt blessed. I was ready. It was time to mark this chapter complete in my book. The surgery was long. It lasted over three hours. I remember waking up in a post- operation room. There was a nurse at the foot of my bed. I was having trouble getting off the anesthesia. I kept fading in and out, trying to wake up. After about another hour, I was able to open my eyes and speak. The lights were bright, but the pain was minimal. My mouth felt swollen, my face was swollen, and I had a burning feeling in my throat. The nurse explained to me what had just happened. There was a prosthetic in my mouth. It was bolted down, and it was made to look like real teeth. My sore throat was from the tube placed down my throat in surgery. The nurse explained to me that I would have the burning for a couple days. At this point, other than the swelling and small amounts of pain, I felt really good. I saw my family and after 30 minutes I was able to make it upstairs to the hospital room. In my room I was able to have my family visit. I felt really good seeing my family. After a couple hours my doctors came in to give me a goal. If my swelling was down, if I could eat soup, and if I didn’t have a lot of pain I could go home in 48 hours. Overthe next 48 hours, I would do everything I could to get home. The very first time I got up was one of the worst experiences I had with the whole process. When I got up, I lowered my face to bend over. It was like being hit in the face with a medicine ball. I fell back to the bed because the pain was bad. On a scale to 10 it was a full 10. I laid back and closed my eyes, eventually after 20 minutes the pain in my face went away. I didn’t bend over that way again for 2 weeks. My time in the hospital bed wasn't horrible. I couldn't eat solid food. Most of all I ate was front smoothies and mashed potatoes. The pain was mostly dull. It stayed at about a 2 for most of the stay. The meds in my IV helped keep the pain down. My throat caused me more pain than my face. Sipping on the water and ice cubes helped ease the pain. Every couple hours my doctors came in. My vitals were taken, and I had to move around to prevent blood clots. This was the most difficult part of the process. I really did not sleep much, I kept having to do tests. After 24 hours, I was able to go home! I was given medicine to help with pain, medicine to prevent infection, an antihistamine, and a nasal spray. I wanted to make sure I wasn't given any narcotics, and my doctors approved my request.

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My Diagnosis

My diagnosis was one of the scariest moments of my life. I remember everything about that day.  The day is pretty much stuck as freeze frame images in my brain.  When you hear you have cancer you automatically think, “ will I die?” Lucky for me, it wouldn’t be that type of fight.

First and foremost I want to speak to the importance of regular check-ups and doctors visits. I , like most men did not frequently visit my doctor or dentist. For me it was about healthy eating and frequent exercise. I believed that as long as I did those things there was no need to go to the doctor. When I was younger I also didn’t have medical insurance, so check ups were not even something on my radar. Unfortunately as I got older i kept the same habits even though I was able to obtain affordable coverage. With that said, make sure you take check-ups seriously.

I honestly thought none of this could happen to me. I was a track athlete in college (albeit a frequently hurt one), I had completed two half marathons, and I am a vegetarian.

Back to my diagnosis. I originally started by experiencing two things, pain in my front teeth and shifting of my teeth. The pain was not overwhelming, instead it was more of a dull pain similar to a toothache. I started to notice the shift about 2 months after the pain started. The shift was strange. It made one of my teeth appear to be longer than the other. I am someone who was born with two big front “buck” teeth so the slightest shift was very noticeable. At first I could slightly tell and didn’t think anything of it. I never got my wisdom teeth removed so i figured they were pushing my teeth into each other. As i started to keep putting off appointments, I noticed the shift becoming worse and worse. My tooth had began to shift about a full centimeter. After finally getting some time away from my job, I decided to schedule a doctors visit.

I scheduled the appointment to get my wisdom teeth removed and inquire about braces.  When i walked in, the first thing i did was show the dentist the shift and explain the pain. She agreed that it may be my wisdom teeth shifting so she started an X-ray. After the X-ray the dentist sat me down and began a cold test. The cold test was a metal rod that had this chilling fluid on it. The dentist proceeded to test each one of my teeth, to try to see if something was rotten. After testing about 3 teeth, she came to the three teeth closes to the front of my mouth. I did not give any type of response when she placed the metal rod on those teeth. She must have tried for 5 minutes to get a response, and nothing happened. This was the first sign.

I could now tell she was worried. She said to me that those three teeth had died. They had no feeling. Next she started feeling the roof of my mouth. This is when she made the discovery. She asked me, “ do you feel this lump behind your front teeth.”  I honestly hadn’t felt any type of lump. She began to explain to me that the lump was pretty significant in size and it was causing the shift in my teeth

 She then showed me the X-ray and told me the lump had eaten away at the bone connecting those dead teeth. After about 20 minutes of more tests and X-rays she directed me to another dentist with more experience. When i asked her what she thought it could be, she said it could be just a cyst that needed to be drained.  This was the first time I was told it was NOT cancer.I left that office and went to the next dentist, in my gut something was telling me she was wrong.

At dentist number 2 things were different. This dentist was older, and so was his practice. He introduced himself as semi-retired and taking very few new patients. We instantly got to work dissecting the lump. The dentist laid me back and gave me some numbing medicine. He was going to need to try and burst the cyst. He tried hard to drain it out. The process of getting his tools under my gums was pretty painful. I could feel him trying to peel under them to drain the lump. The problem was there was nothing to drain. The lump was hard as a rock. I could tell he was too was worried. He then explained to me that he would like to do a biopsy. The biopsy was easy, he cut the lump open and took a tissue sample. The sample was about the size of a dime. They told me it would take about two weeks. For yet another time I was told, “ Do not worry you are too young and healthy for it to be cancer. You don’t drink or do drugs so you will be fine.”

The next two weeks were nerve racking. I was Googling everything I could to find a diagnosis. I looked at pictures of oral cancer and I didn’t have any of the symptoms.  My wife told me to stop looking stuff up, I was only going to make it worse on myself. About 5 days after the biopsy the dentist called me in to see him. I was relieved to finally move on from everything. That day my wife had a doctors appointment at the same time so I brought my 2 year old son with me. 

 I can remember how strange it felt going to get my results. It felt like everyone already knew and I was walking the plank on a pirate ship. As soon as I sat down there was about 4 dental assistants in the room. I remember feeling uncomfortable. Then i thought maybe they were there to play with my son. I sat him on my lap and the Dentist walked in. He looked me square in the eye and said, “ Well you have cancer.” Just that simple, no apology, no warm up, no good news/ bad news sandwich, absolutely nothing- it was a straight diagnosis.  Everything literally went slow motion. All i could say was, “ What, What, What, What, and more What?” All the dental assistants were emotional. The girl who did the biopsy had started to cry. All i could think of was the fact that I had my boy in my lap, and that doctors appointment my wife had- was to confirm her pregnancy. I would be the father of another boy in 5 months from that day. 

I wanted to go home. I wanted to wake up. I wanted to just be a boy again. I wasn’t ready for  it. I didn’t cry, i was too much in shock to cry.  The dentist was speaking but it all was Charlie Browns teacher. The one thing I did manage to hear, was the word Malignant. That was huge. He told me that it would not spread, it would not kill me. Suddenly I felt a sense of calm. He told me that Ameloblastoma had a very low possibility of spreading to other parts of the body. It had a VERY low probability to take my life. I remember saying, “ Well ok this will be life altering and not life threatening- that is a blessing.” The dentist agreed. He then gave me a referral to University of Michigan Dentistry. 

I still was a wreck. The first person I called was my wife. She took it like a champ, she is the strongest person I know. She just asked me if I was ready to fight with her. She gave me strength,  I would see her later that day. My mom took it the worst. I am her only child, and at most turns I have tried to make good choices and have came out ok. She cried hard. She did not take it well. My Dad wasn’t shook, he never is. In his calm corporate manor he made me recount the interaction with the Dentist. He wanted to make sure I wasn’t going to die. He then would begin to research everything he could on Ameloblastoma. 

No one knows how Ameloblastoma forms or why someone gets it. Some believe it is from under-developed teeth. However, there is not a clear reason as to why or how it forms. If left untreated depending on your location you can have problems with your sinus or problems with brain. I was lucky. My tumor was located in the front of my mouth. It would not affect my brain, only danger would be contamination of my sinus. 

My doctors at U of M are the best. The first day I walked in as a referral, I felt right at home. Everyone from the receptionist to the head surgeon was amazing. My first day there I met the head surgeon in the Maxiillery department. I met every single person who would ever touch my file. All the way to the top, that was huge it made me feel important. Over the next 3 weeks I would undergo CAT Scans and plenty of other tests.  During this time I met my primary dentist Dr. Munz. She may be the nicest person I have met in my entire 32 years of life. She would counsel me on my surgery and the different obturators that I will have. I will speak more about the obturators later. After my 3 weeks, I was told exactly what would happen. I would be losing 6-8 teeth, all of the cartilage, bone, and tissue behind my top lip, and a decent chunk of the roof of my mouth. The surgery would be life changing, But not life threatening. Thank God! 

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Ameloblastoma Sucks! Oral Cancer Sucks! But you will get through it