Aubrey's Jaw Journey...and a Happy Birthday!!

Happy Birthday to our girl Aubrey!

What a blessing she is to me and we are so grateful for the blessing she is to every member of the Beck family.

I asked Aubrey if she would share her "Jaw Story" and she graciously agreed.

Here you go...

I was five years old when we noticed that my left wrist was completely stiff. I had hardly any range of motion. 

(fun fact: it was in Disneyland where they first noticed her stiff wrist :)

We went to many doctors, but my bloodwork was regular. The doctors said I was fine and to just stretch my wrist out to regain range of motion. However, my wrist never went back to normal. It is small, stiff, painful, weak, bones out of place, and has little range of motion. We call it my “nemo fin”. 

When I was 16 we checked my wrist with a specialist. He reviewed the x ray and deduced that my wrist was damaged by juvenile rheumatoid arthritis. He said that JRA typically goes away, it didn’t look active in me, and to continue my life without worrying about it. 

I had a complicated case with orthodontics (cross-bite, small palate, tongue thrust, etc.). I underwent orthodontics from age 8-15. I had every possible orthodontic device in my mouth, including braces twice. 

My smile was eventually beautiful and bite perfect. However, six months after orthodontics my bite started opening slightly. The orthodontist fed me a story about it and told me not to worry. 

I noticed jaw pain and misalignment in my bite just before my mission. I had a terrible experience with a dentist when working to complete my mission papers. I thought this was the cause of my jaw pain and bite issues. I went to the dentist in the missionary training center. I thought he might quickly fix some fillings to alleviate the pain and realign everything. This dentist was old and experienced, probably serving in his retirement. He didn’t go into great detail on my case, but basically said, “Wow. You’re a real mess. This is the worst I have seen. These are not issues that you can address until you get home. During your mission, when the jaw pain gets really bad, just alleviate it by going on a liquid diet for a few days. You’ll have to work with some specialists to fix this when you get home.” That was discouraging news, but I moved on. 

The jaw pain on my mission was very severe and, unfortunately, it was exacerbated by stress clenching every night. 

By the time I returned from Ukraine, in addition to jaw pain, my bite had gradually, but completely, opened in the front. My dentist confirmed that it would be a complicated fix. Although my bite was not very functional, it fell off my priority list. I was busy with marriage, college, work, and eventually a new baby and big move. 

Beau turned one and I finally felt like I had a moment to catch my breath, following a million major life changes. I decided to look into my jaw and bite. I thought it would be a relatively simple fix, possibly another round of braces. 

(I should mention now that following Beau’s birth, I had the worst symptoms of arthritis I had ever experienced. The pain and stiffness in my hands and wrists was debilitating. It seemed to spread into my shoulders and hips too.)

I was recommended an orthodontist. He told me that my open bite could only be repaired surgically. It would be an intense process that would require both orthodontics and surgery. I didn’t like that news. I visited several different orthodontists, looking for different options. Unfortunately, all the orthodontists had the same opinion.

I eventually settled on pursuing treatment at an orthodontic school, AT Still University. There was lots of expertise in the faculty, and they were very optimistic about my case. But probably the biggest motivating factor was financial. The cost of orthodontics would be significantly less, and braces would be free if I pursued surgery. (I will say that I have paid the price in time and mistakes. But it was still worth the savings.)

The orthodontist was taking my impressions, x rays, and records when she noticed that the range of motion in my jaw was very minimal. I had never been diagnosed with TMJ because I didn’t have any clicking or popping. But my reports of jaw pain concerned my orthodontist. She decided to refer me to the jaw specialist down the hall. 

This was the turning point, and tender mercy, in my treatment. The jaw specialist carefully reviewed my scan and discovered that my jaw had extensive damage from arthritis. 2/3 of my jaw bone had worn down. This collapse in the jaw bone both opened my bite and caused my pain. I had answers!

This made perfect sense with my history of JRA and the postpartum arthritis. But I had never connected arthritis with my jaw pain. I thought (and had been told repeatedly by medical professionals) the arthritis had come and (permanently) gone in my childhood. 

The next six months I worked with the jaw specialist to relieve jaw pain and monitor my bite. I also worked with rheumatologists to check the status of arthritis. I could not continue treatment unless my bite was stable. Thankfully, the arthritis was not active and my bite was stable throughout the six months monitored. Furthermore, the splint therapy (retainer therapy) relieved my jaw pain completely. 

The jaw specialist eventually sent me back to the orthodontist. We decided to pursue surgery. There weren’t many other options to repair the damage. Jaw surgery requires braces before, during, and after the operation. 

My orthodontist told me that jaw therapy and pre-op-braces could take 18 months—2 years. If it was 2 years until surgery, we thought that would be plenty of time to have another baby. We were a few months pregnant with Logan when I got braces. I was also told that I was ready for surgery anytime 🙄 There was definitely a miscommunication about the timeline. I informed them that we would have to wait until the baby arrived. 

Simultaneously being pregnant and having braces was NOT a highlight of my life 😂

I was planning on surgery a couple months postpartum (ideally November 2019), but for various reasons (and a panel of indecisive orthodontists arguing about the best course of action) things were delayed, and then delayed again, and then delayed even more. 

I experienced emotional whiplash because I was told it would be single jaw surgery, no actually double, well maybe single, oh definitely double. There is a big difference in difficulty and recovery between single and double jaw surgery. I was really hoping it could be single.

Eventually surgery was scheduled for March 16th in Utah, covered by my father’s insurance through his employment with the state of Utah. This surgery date was exactly one month before my birthday, which would age me out of coverage.

We moved the family to Utah the weekend before March 16th. (I was planning to stay with the boys in Utah for the full six week post-op recovery. It would be wonderful to have family nearby to help.) I had a final consultation with the surgeon. He confidently confirmed that he would perform surgery on only my upper jaw. HALLELUJAH! 

Sunday evening, the day before surgery, I received a terrible phone call. My surgeon called to inform me that the hospital had cancelled my surgery due to Covid-19. I responded that this was devastating because I was nearly out of insurance coverage. If it was postponed, it would not happen. He promised to call my insurance on Monday and then call back. 

We were shocked. I was angry with the orthodontist for unnecessarily postponing, postponing, and postponing. I was absolutely devastated.

I decided to call the hospital. I had made it this far into the grueling process. I wouldn’t give up without a fight. 

It was after hours, but eventually I was transferred to the head nurse. I explained my situation with strong, but kind language. She was very empathetic and promised to call back when she found someone who could influence my situation. 

Half an hour later, my surgeon called and we were back on the schedule!! RELIEF!...and pride in advocating for myself. The operation was first thing the next morning.

The surgeon had planned and practiced the operation beforehand using my xrays and impressions. But when he got into the actual surgery he found that the damage was much more extensive than he anticipated 😓 Rheumatoid arthritis had basically collapsed my jaw joint and the damage resulted in my open bite. He followed his original plan, but my lower jaw was too soft to support the placement. He ended up having to redo it. The surgery took 6 hours, twice as long as it normally would. 

The operation basically involved cutting off my upper jaw, adjusting the angle, and reattaching it with screws and plates. 

Recovery has been ok. I had no pain for the first three weeks. The surgery interrupts the nerves in the face and I was numb in my cheeks and upper lip. I didn’t take any pain medication, which allowed me to immediately get back to breastfeeding. The first week was completely miserable because of swelling and congestion. It was very hard to breathe. 

The first two weeks my jaw was tightly banded shut. To eat I had to shoot thin fluids through the back of my teeth with a syringe. I lost 15 lbs and was HANGRY. 

I was given remove-able bands at week three. I keep my bite banded closed the majority of the day, but can remove the bands to eat with a spoon. I’m not allowed to chew until six weeks. 

I have two more weeks until my final post-op appointment. I’m super homesick and super grateful, especially to my family and friends. I have been well supported. 

I’m relieved to be on this side of surgery. Six weeks post op I’ll return to my orthodontist for final alignments. Moving forward I’ll dedicate my best efforts to keeping rheumatoid arthritis in remission. 

My bite before surgery

After surgery

Aubs we are so grateful this surgery is behind you.
We are so grateful for the sacrifices you've made to bring these babies into the world, despite all the challenges you've faces with your health.
We are SO GRATEFUL we get to spend next week with you and the boys.
We love you!!!