Braces Insurance Surgery Oh My!

catching up to where I am now-

Braces- I saw the orthodontist in November and got my braces put on in mid December. They were very painful for the first few days or so, but I also had my wisdom teeth out the same week so it was hard to tell where the pain was coming from which was probably a good thing. I had my wires changed for the first time about a month ago and again it hurt so bad that my ears were ringing and wasn't even able to chew anything for several days, but it is much better now and am scheduled to have my wires changed again in two weeks (oh yay)! on the other hand, I can really see a difference in how straight my teeth are over the past 8 week although my bite is so much worse than it was before I got my braces on. I can only touch my very back molars together and has made my jaws hurt a lot more when I'm eating. The orthodontist said that my bite won't be any better till after surgery when they fit my upper and lower jaw together and that he is just trying to get my teeth in position for the surgeon. needless to say, I am looking very forward to my teeth fitting together for the first time since I can remember =)

Braces Day 1

Braces Week 6

Insurance companies- I've learned they are not my friend and are only around to make the process even more difficult. We were able to get the authorization approved to have the joint replacement and jaw surgery which means that they agree that the surgery is medically necessary for me to live a normal life BUT the surgeon and hospital are out of network and they will only pay 50% of what they (the insurance company) says is a reasonable fee for the surgery hospital stay and joint prosthesis,not what the surgeon and Baylor Medical Center actually charge. Our out of pocket cost is quite substantial and I'm just praying that everything comes together.

Surgery Date- Since the insurance company approved the surgery I was able to set up a date to have my joint replacement and it looks like September 5th it is =). It seems so far away and I am so ready to have this over with but they have to have money for the surgeon's fee up front. I am assuming this is because they don't want you to back out after they start making the custom joints and then they lose money. so, we will have to wait several more months before we are able to pay this. Also, once my teeth are ready from an orthodontic standpoint (probaby June) I have to have a CT scan of my head so they can make molds that they will use to make specific joint prosthesis to fit my face and it takes 8 weeks for them to do this before I can have surgery. Even though it sounds so long from now there is no way that I could have the surgery any sooner than September. and as much as I am ready to have surgery and move on I have to admit i'm pretty afraid of the "what if's" during and after surgery. Guess that is the worrier in me and have to learn to just let that go and trust the nurses and surgeons that will be taking care of me.

Surgery

We drove to Dallas in November I had an MRI and a consult with Dr. Wolford, It was an incredibly overwhelming day. I had seen a few videos from other patients that have the same condition so I at least knew a little going into the appointment and what the surgeon might say. To be honest I can't remember everything that he told us that day because it was so much information. He basically confirmed that the oral surgeon I saw here had correctly diagnosed me with condylar resorption and that my MRI showed non salvageable jaw joints on both sides, if the disease is found early enough they can rebuild the joint but he said that it is too late for that to even be a possibility for me. Also, my airway is severely restricted since my lower jaw had receded so far back. He explained that a normal airway is 12mm and my MRI showed that my airway is 3-4mm which explains why I have such a hard time breathing. The only option I have to correct this condition is surgery.

The surgeon went thru every detail of the 9 hour surgery, yes 9 hours!!!! and as simply as I can put it Dr. Wolford and his surgery team will practice on mold of my face/jaw from a CT scan that I will have done and will do it several times prior to my actual surgery dates So they are very familiar with my specific face and bone structure. He will make an incision around both my ears and inside of my ears so I will not have any scars. The other incisions will be inside my mouth. He will cut out the diseased jaw joints on both sides and replace them with titanium joints and to cushion the artificial joint he is going to take fat from my abdomen since my body will easily accept my own rather than someone else's tissue. He will then cut my lower jaw in two segments and move it forward till its in the right position and attach it in place to my new titanium joints with metal plates. My upper jaw will also be cut into several segments and he will shave the bone down till it aligns with my lower jaw. While I am in surgery he is also going to reduce amount of tissue in my nose so I will be able to breathe again easily and not feel like I can't catch my breath. Lastly, he will insert a chin implant to give me a more symmetric profile. I will have surgical hooks placed weeks before surgery to allow enough space for him to cut into my jaw and will be banded shut after surgery for 4 weeks I believe. After surgery is over I will stay in ICU overnight and in the hospital for 4 days. After I get out of the hospital we will have to stay in Dallas for a week so that he can see me everyday and make sure I am healing ok. Then we will get to come home and I will see my orthodontist here every week and travel to Dallas once a month for a year. I will be on a liquid syringe diet for 3-4 weeks and then I should be able to have soft food for 4 months. The biggest risk of surgery is losing facial movement and numbness since he is cutting thru so many nerves and muscles I will have to learn how to open my mouth again and smiling will take many months to relearn but I fell like if I don't do this surgery now and wait till I'm 40 or 50 recovery will be much harder and honestly don't know if I could handle all my symptoms that long. I only expect them to get worse as the deterioration of my joints continue. Yeah that's a lot to take in but I am looking forward to feeling better and that makes the entire process worth it.

The Facts

Guess I'll start this post by boring you with the facts. Condylar resorption is a rare condition that affects the jaw joints and most commonly starts in adolescence. This is a poorly understood disease process that occurs with a 9:1 female-to-male frequency ratio and rarely develops after the age of 20 years old. They don't fully understand why this happens but I have read and was told that auto-immune diseases are the main contributor, such as rheumatoid arthritis. Also, participating in sports activities which, through minor or major trauma to the jaws, can initiate or make the condition worse. It has also been linked to very high estrogen levels but there is no definitive answer on how or why I have been diagnosed with this. The disease causes the head of the temporomandibular joint to degenerate till there is no joint left in one or both jaw joints in my case and causes headaches, ear pain, and the lower jaw to shift back blocking my airway and making it very difficult to bite down and chew.

This is my horrible profile now. I can't wait to see it after surgery

The oral surgeon that I saw referred me to see Dr. Larry Wolford in Dallas, Texas at Baylor Medical Center. He is one of the very few surgeons in the United States to do this type of surgery and is also within driving distance from us. He has been doing this particular surgery for more years than I am old and have seen so many people with wonderful results that I feel so comforted knowing that I am in good hands.

Diagnosis

Well I have really debated over making a series of you tube videos or writing a blog during these challenging months ahead for my family and I.  After realizing that I am not going to be good at videotaping myself talking, I figured the best way to follow my progress for friends, family and others living with this condition is thru a blog. The best and most comforting information I have received is from other people that have this disease that have graciously put themselves out there to give people like me a place to turn to for information and to know what to expect before and after surgery. So, if I can help give back and be able to explain my experiences dealing with multiple doctors, dentists, orthodontists and maxillofacial surgeons to someone that might feel as lost as I was when I got diagnosed then I feel that putting my personal journey out there is worth it in the end.

Lets see I started having problems several years ago, probably sometime in my early twenties. I noticed that my bite felt like it was off more than usual and was harder to eat. Around that time it seemed like I was having trouble breathing thru my nose, sleep and breath only with my mouth open. It is very difficult to breath thru my nose without feeling like I can't catch my breath but didn't think much about it at that time. Within the last two years my bite is so severely off that I can only bite with my very back teeth, my chin has receded so far back that it is pretty much not existent and what finally prompted me to go to the doctor was my headaches that I had been having for about the last year and a half that I wake up with almost every day. I finally put all the pieces together and knew that this is not normal. My doctor referred me to the oral surgeon here in Rogers, AR in August 2012 that also specializes in orthognathic (jaw surgery that moves your lower jaw forward if it is not not in the right position) I was thinking that this is what I probably need to have done to fix the issues I have been dealing with. When he came into the room to see me he pulled up the most recent x-ray that I had my dentist send over and he pulled up an x-ray of another patient to better explain the disease process that is happening in both of my jaw joints. I have never seen a surgeon so speechless describing a condition that is so rarely seen especially when he is one of the best surgeons in this area that actually does jaw surgery I literally was in shock and devastated. I went into his office and at worst I thought he would tell me that I needed to have surgery to correct my lower jaw but I left the office that day in tears with a piece of paper with the words "Idopathic Condylar Resorption" written on it and he told me to research it as much as I could before my appointment with one of the only surgeons in the United States that could actually do surgery to correct the disease process in my jaw joints.