Thankful

I am going to take this blog a little off subject for this post! Tomorrow is Thanksgiving and I have so much to be thankful for this year that I wanted to make a special post just for all the people that have blessed me so much over the past year.....

I am of course most thankful for my loving and supportive family! They are my everything and I wouldn't be who I am without them pushing me to be my best. My two kids have taught me so much over the years. Mckayla is wise beyond her years and is so incredibly smart. I can't wait to see what great things she does in the future. Connor has taught me patience and I just love watching his little mind work. He is going to be a ladies man and give me gray hair and wrinkles at an early age. Love to see how much they love each other and how close they are.

I am thankful to be married to the most amazing man that I've ever met for just under 10 years now. He is such a playful loving dad to our kids. He has seen me at my worst, has loved me through so many trials and has always been there when I needed him the most. After surgery, he was never more than an arms length away and making sure everything was taken care of while I recovered. Words don't describe how much I love him.

I am thankful for my job and all the emotionally strong, smart, and beautiful nurses that I get to work along side with every day. You are some of the most compassionate and caring women I know. I take my job for granted and getting to assist with bringing new life into the world on a daily basis. I have to take a step back and realize how life changing it is for others even though it's so routine for us. As hard as some days may be physically, emotionally, and mentally I can't imagine doing anything else.

I am thankful for my surgeon along with his nurses and my orthodontist. My life has been forever changed and there aren't words to even begin to say how thankful I am to them. I have my life back because of this small group of people. To think of all the time and hard work they have put in to improve my quality of life, just makes me so happy. I feel like I'm doing well post op but nothing feels better than getting a hug from my surgeon and hearing it from him. No matter what post operative issue I'm dealing with, he can always put me at ease within a matter of minutes. I knew that I was in the best of hands from the first day I met him and his nurses but they have gone above and beyond any expectation I had. I'm so blessed to have these special people in my life.

I am thankful for all of my friends. I have made so many new friends this year that have made me feel like I wasn't alone in this long painful journey. This blog, along with Facebook groups have been a blessing in disguise and I have learned so much from each one of you and I am happy to be in some way a part of your journey as well.

Life As I Know It

It's been awhile since my last post and have had lots of my sweet friends near and far message and ask how I'm doing since I haven't posted in so long. It really does get harder and harder to keep my blog updated since I had surgery. I'll catch everyone up since my last post, 8 weeks ago.......

I had my 12 week follow up appointment with the surgeon a few weeks ago. I feel like I always have so many questions for him about little things that are bothering me. He and his nurses are always so nice to let me ramble on about all the small concerns. He said that I am doing great and I can't even tell you how good it feels to hear it straight from him. 

He did say that I could start using my Therabite now and I was sadly super excited about starting this. I know several of you that follow my blog started it right after surgery and everyone else by 6 weeks post op so I was feeling a little behind. My opening prior to using the Therabite was 25mm and he thought the best I would get to is a 35mm opening BUT I am already at 35mm just two weeks out from starting it. I've been using it about 3-4 times a day with 10 reps and holding for 20 seconds. I am so happy with my progress since starting it and I would be completely fine if this is as much motion as I get but so many of you have got to 45 or even up to 50mm that i'm going to make my goal 40mm now and then we'll see from  there.

My New Friend-Therabite

As wide as I could open my mouth at these stages. I started Therabite at 12 Weeks

I'm not much of a complainer but here is a few things post-op that I've been struggling with and none of which have anything to do with the actual surgery but more so with post op side affects. I have no jaw or joint pain at all and have almost complete feeling back in my face again. My lips finally touch together again,Woohoo! They still don't naturally stay together but are getting there. So, when I look at the little list of things below that are driving me crazy it makes me realize how lucky I am after this surgery and know that these issues will resolve and will soon be a distant memory.

 

Side profile before and after with lips closed. Can't even tell you how much I hated that before picture

 ---My biggest concern, being the pain I am still having when I take the first bite or two of food that I discussed briefly in my last post. He again reassured me that this will pass and get better as the nerves heal. As little of a problem this may sound to be, it is debilitating for me and I completely dread when it's time to eat. I do hope it gets better soon. I, of course, have googled this and everything come up as "first bite syndrome" whether or not this is a real diagnosis or someone made it up, it fits every one of my symptoms. It has also made me nervous that I may actually have this and that it won't get better because of permanent damage. This isn't a type of surgery that there is lots of information out there and I can easily find lots of information on so I will just continue to wait patiently for the pain of eating to go away.

---My hair has been falling out in clumps and handfuls. I wake up and my pillow is covered in it. I run my hands thru it and it falls out. Lets not even discuss what happens when I try to brush it. Since then I also noticed that I had my hair cut and highlighted in August and it hasn't grown out at all since then. My hair still looks like I just had it done, I have been taking prenatal vitamins, biotin and making sure that I am eating plenty of protein. I got worried enough that I asked my surgeon about it and I think I really stumped him on this and referred me to the dermatologist. The dermatologist said that this can be a normal side effect of surgery and that basically my hair is in a sort of sleeping stage and my hair will eventually stop falling out but she warned me that it could take up to two more months before regrowth starts again. What makes this even worse is that I don't have much hair to begin with and now I can barely get a ponytail to stay in. I'm a little scared to see what 6-8 more weeks of hair loss will look like at this rate. 

---Lastly, clenching. I just know I'm going to break a tooth as hard as I clench at night. I wake up and my teeth will still be clenched together and have to slowly pull them apart. My teeth are sore and sensitive because of it. The surgeon gave me some medicine to take at night to see if it would help relax my muscles but I've gotten no relief from it. I don't know that anything else can be done about it right now. 

I just wanted to say I feel so blessed to have my life back again and to have met so many new friends along my journey. Friends that have had surgery, getting ready to have surgery, and others that have been told that surgery is inevitable and found my blog while researching. This blog takes a lot of work to keep up but hearing from all of you that my experiences are helping with your own personal journey makes it all so worth it.

Just a few pictures to get up to date on here.

Bite 2 weeks before surgery and now

10 Weeks Post Op

14 Weeks Post Op

Back To Reality

I'm 8 weeks post op today, Yay! Time sure does fly by when you're having fun......I saw my surgeon this week and got cleared to go back to work and most importantly EAT a normal diet! It was the best thing I've ever heard. It was like words coming straight from an angel's mouth. I had been looking forward to this day for the past 7 weeks. So, life returns to normal again and I am so excited to get back to the every day routine, like nothing happened.

So happy my husband puts up with my picture taking lately!

Yep, I can open my mouth and he wanted to show off too!

The surgeon took some more x-rays to make sure everything still looked good and was healing well. He said everything looks perfect and was pretty happy to see that I was feeling so good. I don't go back for another 6 weeks to see him, so I hope that I can improve significantly more by then. My biggest challenge is working on my opening. A couple weeks after surgery it was 18mm and now I can open my mouth to 25 mm. I know that doesn't sound like a lot of difference over the past 6 weeks, but I have really worked hard on it and I can tell a huge difference when I go to take a bite of food. Before surgery I could open to 42mm, so that is my goal! He said that the more I can have my elastic bands off the better for me with getting normal function back. I will have to see what the orthodontist says because he is using them to align my bite right now and wants them on. My scars from surgery have healed perfectly and have pretty much disappeared. I even have trouble when I try to find them now! I am able to move both of my eyebrows again and have sensation back everywhere on my face except where my new jaw joints are and it is still very numb.

Above: Xrays taken in November 2011 Below: Xrays taken September 2013

I went and had my teeth cleaned this week even though I had it done a few days before surgery. I just haven't been able to get my teeth very clean with a baby toothbrush. The dentist recommended that I have it done every several months  after I had surgery to make sure I don't get any cavities. I was really worried about being able to keep my mouth open for so long and it hurting, but I had no problem at all with staying open the entire time without a bite block or anything to help me. I was also surprised at how numb my gums and teeth are on the top. I couldn't even tell when she was cleaning anything on the top. I was pretty happy because I always have a very back tooth that has a large filling in it that bothers me when it's messed with and I couldn't feel a thing. I don't know when feeling will come back on top, but I'm ok if it doesn't for awhile.

You might wonder what a girl wants to eat for the first time in 7 weeks since being banded shut and on a no chew diet! I had been craving sushi from Kobe in Fayetteville since we got home from the hospital. I promise I thought about it everyday, not kidding......So my husband took me immediately there after our appointment with the surgeon on Monday. My husband explains it like I was a kid on their first birthday getting to eat cake for the first time. I do have to agree that I was pretty excited and smiled the entire time. We ordered a feast and I attempted to eat everything. Chewing was a little weird at first to get used too, but I got the hang of it. My jaw joints didn't bother me one bit.The most bothersome thing was the pressure it put above my teeth, where all the plates and screws are. It feels almost as if they are going to pop because of the pressure. I am getting used to it though and I don't pay much attention to it anymore. I have been eating great since Monday and have eaten anything I feel like. I don't even feel guilty about it! I ended up losing 25 lbs throughout this process and haven't gained a single pound back even after my eating whatever I want all week. I am pretty positive this will catch up to me.

Best Day Ever-My first meal that I got to chew!

I only have a couple of concerns still, which the surgeon says are normal and will just take time. My main concern is that my lips still don't touch together but, I will say that they are getting closer. I can put them together but they don't stay together when I'm relaxed. My muscles just feel so tight that my lips just won't stay shut. The other bothersome concern is that since I was about 3 weeks post op and was able to start my no chew diet. When I put food in my mouth and swallow it I get a horrible pain which feels like its in my salivary glands, at the very back sides of my throat, that send a cramping electric shock throughout my mouth and jaws. The best way to describe it, is when you eat a lemon and it's so sour it hurts. The pain only last for the first bite or maybe 5 seconds and then I can eat perfectly normal with no pain. That first bite though is so bad it makes me not want to eat. It doesn't matter if it's cold, hot, bland, sweet, or sour. It all feels the same with the first bite. The surgeon says it is because of the nerve and muscle damage and that it will get better. so for now, I will just make a horrible face and shake my head when I take my first bite of food, haha!


If my main complaints have nothing to do with the actual surgery and just side effect of what had to be done, then I give myself a pat on the back. My jaws feel great and my jaw joints are doing amazing even with chewing. I do plan on taking it slow and trying to eat more soft type food than crunchy just to save my jaw joints from so much impact. I want them to last me many many years and not have to have them replaced. I'm hoping for at least 20 years with them. The surgeon thinks they will be able to last me that long or longer, so I'm happy with that.

6 weeks post op

7 weeks post op

4 Weeks Into My Recovery

It's hard to believe that it has already been over a month since I had surgery! Every week has been better than the week before and I can honestly say that I am feeling great. The pain that I had been having in the early hours of the morning has subsided and I have been sleeping really well for the first time in so many years! I am also able to breathe through my nose now. I can't even remember the last time that I was able to do that. It's just the little things in life that we take for granted till we aren't able to do them anymore.

I can't remember if I mentioned that I'm not able to move my eyebrows at all or not in the last couple of posts,but they still don't move at all. That sensation will come back eventually so I'm not concerned about it at all. The numbness is slowly going away in certain portions of my face which is nice, but swelling and the numbness is still very prominent around where my new jaw joints are on each side. I cant even feel the sensation of my fingers touching my face around those areas. My lips still don't touch together and that is a little frustrating for me and I worry that they won't ever touch together again without me forcing them too, but they are getting closer so I just need to be patient. I am still struggling to talk but I have gotten really good at talking without my lips moving at all and speak a lot clearer except for when it comes to trying to say my name that starts with an "M" and it comes out sounding like "Alyssa" instead of Melissa. If that is my biggest complaint then I'm kicking this recoveries butt. I am still on a no chew diet and have been eating fairly good. I have gotten used to just swallowing the tiny pieces of food without chewing, but I am still losing weight and am down 22 lbs since I had surgery. I guess I will just keep losing till I am allowed to start chewing again. In case you were wondering I should be able to start chewing again after I see the surgeon in 19 days. I'm totally counting down, haha!

Overall, I am beyond happy with how my recovery is going and am so so so thankful for no complications and to be feeling like myself again. I hope to be back in my normal routine shortly!

Here's a few pictures taken around 4 weeks post op. I am still shocked at the difference in my face since surgery and how much it changes as the swelling goes down.

Happy To be Among The Living Again

Can I just say how glad I am that I made it past the first two weeks post-op! There were just some days that I didn't know how I could possibly make it to the next. I felt almost as if I was living hour to hour. My first week was made more difficult by a stiff neck that I couldn't move at all and was stuck crooked. I had to go to physical therapy several times to work it out. He was so helpful and my neck is almost 100% now. I have to move it slowly but I can move it.

18 days post op! Love my new profile

I'm almost three weeks out now and I am feeling pretty good. I literally have no pain throughout the day and am not taking any medicine, but between the hours of 3-6am I wake up with my entire head pulsating. It's such a deep pain I can feel it behind my eyes and inside my ears and I have to take a pain pill even though I don't want too it's the only thing that makes the pain go away. I am hoping that it goes away soon because I've gotten to a point that I dread going to sleep knowing that I am going to wake up in such bad pain  It's gotta get better before I go back to work because I don't know how I could get up and ready in that kind of pain.

Before and After 18 days post-op

My face is still completely numb from right above my eyebrows to below my chin and it still feels like something is sitting on my face. It's just a very heavy feeling. I am working on moving my lips and smiling again even though the top one feels so numb and dead I have been able to smile just a little bit. it looks a little funny but, hey it's progress. My swelling and bruising is so much better. I am ready to see my new face!

The biggest smile yet! =)

I saw the surgeon this week and he was very happy with my progress. I am on a normal diet but no chewing at all still. I have gotten really good at just swallowing my food down without chewing. My sweet husband puts chicken/pork/beef in a food processor and chops it up really small so it's really easy just to swallow. I can not tell you how ready I am to take a big bite of a hamburger or a piece of pizza. I just want the satisfaction of being able to chew. I got a really big hug from him and he said that he would see me again in 4 weeks and I should get to start chewing again after my appointment! I'm so excited!!!

without my bands on I can open my mouth this far! Not too bad

I also had to have my first orthodontist appointment since surgery. I am suppose to see him every week but the surgeon allowed me to skip last week because I was in so much pain. I was just a little nervous of seeing the orthodontist because my mouth doesn't open very much and I didn't know how he would be able to change my wires. It turned out to be an easy appointment. my top wire is still segregated into three pieces and he said if we went straight back into one straight top wire it could pop all the screws and plates above my upper lip because of all the pressure. so we are taking baby steps to get back into one straight wire. come to find out my gums are numb and even my teeth don't have fully sensitivity. I couldn't even feel them working in my mouth. He did say that he will see me every week "for a long time" but I could possibly be brace free in 6-9 months! I can't wait to see my new smile.

First Orthodontist appointment since surgery! I was a little tense

Surgery Post Op and Photos

Well Friends I know that I said I would update right after surgery but I had such a tough recovery the first week that I wasn't able to focus on my blog and I apologize for that. I am 11 days post op now and am feeling as good as I can. Surgery went very well and lasted about 5 hours. My entire face has been numb ever since I went to recovery and will be numb for several months. I was pretty freaked about having to throw up after surgery but I was swallowing so much blood that all I did was throw up the first night, It was terrible........ I had to stay in the hospital for 4 days before I was ready to go home which was much longer than I wanted to have to stay. Since Ive been home I had been on a syringe liquid diet only and it was so hard to do and I ended up losing 16 lbs since surgery day.
I went to the surgeon today and since I had lost so much weight he decided that it was best to unband my teeth and just keep rubber bands on each side of my mouth that I am able to take out when I eat and have to put right back in. I am not allowed to chew any of the food and I have to just swallow it which has proven very difficult to do but I am trying my hardest.
The sweling and bruising is still pretty significant and my face feels like I have a really bad sinus infection with all the pressure that I have in my head but besides the pain from the pressure I'm not having any pain at all. The fact that my entire face is numb probably helps with that too though.

OK picture time.......

signing my surgical consents

ready to go

they had to wrap my hair up to keep it out of the sterile field during surgery

I was looking pretty funny

nurse finishing up wrapping up my head talking to anesthesia

yes I looked ridiculous

right after surgery feeling pretty bad

brusing and swelling day 1 post op

my sweet husband helping me drink

my new profile day 10 post op

my xray with my new titanium face

So Close I Can Already Feel The Pain

To be exact, I have 6 days and 8 hours left till the very big life changing day! I'm not counting or anything and just in case you are wondering my bag is packed like a woman that could possibly go into labor at a moments notice. I have so many emotions going on right now; I am excited, anxious, nervous, and quite frankly scared out of my mind of next Friday.

 It may sound a little weird but I am enjoying being able to open my mouth, smile, yawn, talk, chew and all the things we take for granted being able to do everyday. I know that I won't be able to open mouth for awhile and chewing will be off limits for at least 4 weeks. The surgeon said it will take me some time to be able to smile and have facial movements again since they cut thru the nerves and muscles in my face on both sides. There is  even a slight possibility of having long term or permanent paralysis of facial movement. The surgeons I have seen seem to think since I have never had any type of surgeries that I have a much higher chance of the TMJ Replacement being a complete success!

In other news I saw the orthodontist last week to have all my surgical hooks put on. I have them on every  bracket except between my front top and bottom teeth. I guess that is so that I will be able to eat my yummy liquid in a syringe thru there. I already had some hooks on my brackets when I got my braces on so it was a pretty quick visit. He also took some pre-op pictures, and of course they are of every view of my face and mouth that I can't stand right now, but I know I will appreciate all of these pictures these Dr.'s take after this is all over and I'm happy with my face and teeth.

Surgical Hooks July 8,2013

I know I'm not very good about making blog posts but I really haven't had a lot happening. I will post again the night before surgery because I have my pre-op with my surgeon that day and will let everyone know the details. I am also going to try and keep up with post-op pictures fairly frequently. In the meantime, for the next 6 days eating is the name of the game!!!!!!

33 Days To Go

Hard to believe how quickly July has crept up on me. I thought that it would drag by since I had to change my surgery date, but the time is almost here! I wanted to post a quick picture and update since I have been in braces for six months. It's getting harder and harder to post because I have pretty much been in a holding pattern and just waiting for surgery. I told myself I would at least make a post once a month even if I didn't have much to say. It will be a lot easier to post and more interesting when I have LOTS to talk about during my recovery =).

I don't go back to the orthodontist till July 8th to have my surgical hooks put on that will help keep my mouth wired shut so that my jaw isn't able to move while the bones and titanium implants are healing. Since my last post my teeth have completely shifted since he separated my top wire into three pieces. My front 4 teeth that are sharing the same wire have lifted up and forward making my teeth out of line with the others. I know that it's not permanent and has to be done to make room for the surgeon to make his cuts in-between my top teeth but I am not liking it at all. My over/open bite was looking a little better in the front but now that he has been prepping my teeth for the surgery it is worse than it has ever been.  I will just have to wait patiently for the final result, that makes this all worth it!

6 months in braces

my open/over bite from a different view. This is with my teeth touching as much as they can

This and That

Since my last blog post I have been back to the orthodontist several times for broken brackets and I'm sure they are sick of seeing me.  I got the "power chain" off  that was pulling my teeth close together after he slenderized them. This time though he separated my top wire into three pieces to make a gap on each side of my mouth that will allow the surgeon to cut up and between my teeth, because my upper jaw will be in three pieces so they can put it into correct position to fix my bite and help my breathing. I really haven't had much pain with the new wire change so I hope that it is making enough space. I also thought I would post pictures of what it looks like on each side. It isn't noticeable unless you look really close. I can't wait for my teeth to be able to actually fit together. You are able to to see that my teeth don't touch at all when I bite down.

right side

left side

 

 

On a bad note, I got a call from the surgeon's office that the company making my joint replacements(TMJ Concepts) had contacted them and said that there is no possible way that my replacements would be done by my surgery date on June 24th. It is frustrating that the CT scan was sent off about 10 weeks before the scheduled day thinking that would be plenty of time. They said mid July would be the soonest that they will be done. I'm really frustrated that we have scheduled our entire summer around this surgery date and now we are getting pushed back another month. There is nothing that I can do about it though so I'm trying not to get down about it. I'd rather the joint replacements be done perfectly than to have them rushing to get them done in time.

My new surgery date is July 26th and is still at Northwest Medical Center in Springdale. On the bright side, I will get to have my cake and eat it too on my 30th birthday. I would have been wired shut if surgery was still happening in June.I'm trying to stay positive about everything and enjoy being able to eat real food a little longer.

 

57 Days To Go

Only 57 days left till I have surgery!!!!!! I am so anxious for June 24th to be here that the days are just dragging by now. June will be here before I know it and hope I am prepared as I feel like I am at this moment. I literally feel like I am more and more prepared every day.

I don't have any new news, but wanted to post an up close picture of my teeth. The orthodontist slenderized my upper and lower teeth a couple of weeks ago and put a "power chain" on to fill in the gaps. My teeth have been very sore ever since. No pain, no gain I suppose! It really is amazing to see such a significant change in the alignment of my teeth and bite in a short time. It makes it all worth it. I could not be anymore happy than I am right now with the group of Dr.'s that I have and that will be caring for me during and after surgery.

December 2012                             April 2013

The Waiting Game

I had a CT scan done earlier in the week for the company in California to start making my new jaw joints. It takes about 8 weeks to make them and will be customozed to fit the exact shape of my face. So..... that means I have a new surgery date and am scheduled for June 24th at 7:30 am.  I am so excited that I am able to have it done here in Northwest Arkansas and I get to have it done sooner than my original scheduled date in September. I have lots of appointments between now and then. I haveto go back to the surgeon next week to make molds of my mouth and teeth so he can decided the best way to get my teeth and jaws to fit together. 

I have had my braces on for 4 months now and my teeth are straighter than I thought they even could be this quickly. I will go to the orthodontist next week and have the lower teeth slenderized and retracted.  I'm not completely sure what this involves but it doesn't sound like it will be a good time. 

One last opinion

After several weeks of my family asking me to get another opinion from a surgeon that is closer to home, I decided to make an appointment with a surgeon that I saw 12 years ago when I was still in high school. He recommended that I have lower jaw surgery, but we did not go thru with it at that time. I came across A YouTube video last week with this particular surgeon and he was discussing that he had been doing total jaw joint replacements for 20 years and that he studied at Baylor Medical Center under the surgeon that I have been planning on having surgery with in Dallas. I finally felt like I might have another option rather than having surgery 300 miles away from my family.

I had my consultation with him on March 19th. They took me back and got a lot of X-rays. I gave the nurse all my medical records and MRI reports that I was able to get from Dallas. Before he even looked at any X-rays or medical records he did measurements of my face,mouth,teeth at all different angles. He asked me to tell him what kind of symptoms I have and how long I've been living with them. He then pulls up my 3d X-ray they took witch is basically a mold of my face and shows me what he believes is wrong with my facial structure and joints. He said that both of my jaw joints are non salvageable (same as Dr Wolford had told me). He said there is nothing to do with the joints but to replace them and the sooner the better before the resorption has more time to deteriorate the bone. He also said my airway was 4mm which is the same as I was told in Dallas. He said my lower jaw (chin) is pretty much non existent and needs to be rebuilt after my lower jaw is brought forward to make my face symmetrical. He put me at ease by saying the he does everything the exact way Dr.Wolford does his surgery expect he will not take fat from my belly to cushion the joint like Dr. Wolford was planning to do and he didn't think it seems necessary to slenderize the turbinates inside my nose that block off my airway because when he pulls my upper jaw down it will take all the pressure off of my nasal airway and should be able to breath perfect without going thru with that procedure. Another nice thing is that he only has privileges to do surgery at Northwest in Springdale and he said for me that he would work really hard on getting his privileges at Mercy so that I could have my surgery there, where I am comfortable. I though that was extremely nice of him to do.

He said my surgery will only take 4 hours and hospital stay would be 2-3 days. I will be banded shut for two weeks but l can eat some things like jello, mashed potatoes and should be able to return to work in three weeks! This is night and day difference from having surgery In Dallas where he said it would take 9 hours for the surgery to be completed stay in the hospital for 4 days and stay in a hotel room for a week after so he could see me everyday, eat thru calorie counted syringes for 4 weeks and couldn't return back to work for eight weeks. 

Needless to say I'm ecstatic that I listened to everyone that told me to get one last opinion before we put down a significant amount of money to the surgeon in Dallas . Although, this surgeon is right down the road his office and hospital is still out of network with my insurance company but his fees are significantly less so we are looking around end of  June or July. We are waiting on approval from the insurance company to approve Dr. Bolding doing the surgery instead of Dr. Wolford and as soon as that happens I will have my CT Scan done to start making the joints to fit my mouth. The company that makes the jaw joints say it takes about 7 weeks to complete and then it's surgery time! So glad that I did my research and found a surgeon that is in my area and does this all the time that was trained under the surgeon in Dallas. I feel so much more at ease and peaceful about the surgery now knowing that my family and friends will be close.

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.