My Double Jaw Surgery

At the time I'm writing this, it's been 18 months since the head and neck surgery that changed my life. Many of the changes have been good, and some not so good. So here is the story of what happened and how our lives have changed; the good, the bad, and the ugly. 

 

 

Before

It's tough to pinpoint the beginning of the story because there really isn't one. In my 30's I started having jaw pain that slowly went from not so bad to excruciating pain. For years I didn't know what was wrong or why this was happening. I chalked it up to stress or a number of other things and just kept living my life, doing the best I could. I was busy mom to twins and couldn’t slow down long enough to get to the bottom of it. It was when eating became so painful that I couldn’t keep food in my mouth and started losing too much weight that we knew something had to be done.

My dentist referred me to a surgeon and I didn’t go because I did NOT want surgery. For almost a year I went to a natural, non-surgical TMJ doctor but nothing took away the pain. I reluctantly agreed to a surgical consult and after getting a CT scan it became obvious very quickly I was in very bad shape. The Dr. said the main source of my pain was severe osteoarthritis in my jaw joints. My joints were worn away to the point that they were no longer able to function normally with about 3/4" of bone loss on both sides. I also wasn't breathing well because my airway was being cut off by my receding jaw. In short: My jaw joints were toast and needed to be replaced. In order to do that, the bones and muscles in my face would need to be rearranged. My upper jaw would be sawed through, rotated forward and shifted up (called a LeFort 1 Osteotemy), and both jaw joints would be replaced with titanium implants (Bilateral Total Temporomandibular Joint (TMJ) Replacement). I also needed 2 different procedures to straighten and widen my nasal passages to improve my breathing and my chin bone would be cut and moved.

Hearing the many things that needed to be fixed (as well as the extreme risks) was mind-numbing. The possible side effects were so scary. Muscle death, infection, nerve damage and paralysis to name a few. Even though I was terrified, I did feel relieved because finally we had a clear cause for the pain and knew there was a solution. A painful, scary, risky solution, but a solution none the less!

 

The Surgery

To say I was terrified would be an understatement. It took a little over a year for the team of surgeons, orthodontists, and implant makers to move my teeth (adult braces are the absolute worst) and prepare for the surgery. I was in weekly counseling sessions with my therapist to get my mind and heart in the right place. This was the first surgery I've had where I was truly afraid I would die. Lots of prayer, lots of fear.

I don’t remember much about surgery day but I can vividly remember the time immediately before they put me under. I climbed onto the surgical table and prayed the 2nd biggest prayer of my life (the first one was when my twins were born). The nurse asked if we could hold hands. The anesthesiologist put her hands on my shoulders and bowed her head. Through tears I prayed for the people in the room. For their hands. For God to answer the prayers they had in their hearts. I thanked Him for their education and dedication. I prayed for my husband and my babies. I asked for protection and peace and to wake up again. It was a beautiful moment and when I said “Amen” I was ready. I thought about a river of God’s love surrounding me and all the people praying for me and then I was asleep.

 

Before and After X-ray

 

We were told it would take 8-10 hours. After 11, my family and friends got the news I was out of surgery.

Things were really bad for a while. My daughters (who were 5 at the time) had to be sent away from our home for about 10 days because the swelling was insane. Truly - it was terrifying to behold. There were a few instances, one that landed me in the ER, the pain and swelling was so severe I couldn't breathe. I thought often about the verse in Isaiah 'Do not be afraid, I am with you. I have called you by your name, you are Mine. When you go through the water, you will not drown. When you go through the flames, you will not burn. You are precious in my eyes.' Lord, help me I was drowning in my own body. 

 

Dark Days

Recovery was measured in months. Darkness took over my heart and mind. I could barely open my mouth, couldn't speak clearly, eat solid foods, sleep, or go a minute without pain. One of my precious daughters was so upset she didn't touch, hug or kiss me for 9 1/2 weeks because “you don’t look like my mommy”.  I completely understood how she felt and I agreed with her. The sorrow of seeing my child in pain was unbearable. Friends and family that saw me in these early days would cry when they looked me. It was just a horrible time. We were all at the beginning of a season of acceptance trying to adapt to the "new" me. On top of that, I was dealing with the reality of surgical complications. The possibilities of long-term changes weren't just conversations anymore. They were real and hard to accept.

During this time we discovered the right side of my face was paralyzed and I had significant 7th cranial nerve damage on both sides of my head and neck. I lost the ability to move my jaw back and forth laterally, so chewing was a skill I would have to re-learn. A section of my masseter muscle was removed on both sides during surgery, the muscle responsible for chewing, smiling and general facial movements, so my smile was a different shape. Not as wide. More boxy. My cheeks are puckered because the muscles in my face were moved to a new place. I didn't expect to look so different. My appearance really bothered me.

 

 

I kept telling myself healing takes time. Nerves take time. Pain takes time. I CAN heal. I will heal. God is good.

I wanted to get better. I did months of electroshock therapy and physical rehab and learned to move, eat, talk, and breathe again. I wish I could say the physical challenges were the hardest part, but they weren't.

 

 

I didn't expect the mental and spiritual struggles.

I had become a stranger to myself. I didn’t recognize my reflection when I looked in the mirror. When I looked my brain would immediately say “who’s that?”…. and then it hit me. That’s ME. But it can’t be me because that’s not what I look like. I analyzed every detail and begged my brain to see something familiar, but nothing changed. To this day I don’t like looking in the mirror because it’s so disappointing and hard to take in. I wanted to look like I did before the surgery. I knew who that woman was. I don't know the person who's staring back at me now.

 

What life is like now

Life is different now in wonderful ways: My pain is gone (praise God!) and it is not lost on me how huge this is. I'm thankful for that every day. I'm alive and so happy. My posture is better. I can breathe!! By moving my jaw forward, it's estimated I'm breathing in about 7 times more air. My new joints should last me the rest of my life. There's even humor... I tell people there's so much metal in my face I have my own wifi signal. I've gained movement in my facial muscles and can smile again! It's a different smile than I had before, but still filled with joy. I've worked really hard and come a LONG way. 

 

 

A big part of my journey has been to make peace with the things I don't want to accept.

The nerve damage causes muscle spasms, numbness in my face, teeth, mouth, and facial paralysis. The muscles in my face and neck don't move in the same way and get fatigued easily. I need botox on the left side of my face in order to balance out my facial expressions due to the the paralysis I have on the right. I've had a 2nd surgery in December of 2022 to work on my nasal airway and reposition my lower lip and chin and will need a 3rd in early 2024. The cartilage in my nose is permanently damaged and collapsing. My sense of taste is slowly fading. Even though I've made a ton of progress with eating, I still can't chew with my mouth closed, hold water in my mouth, or drink from cups or cans without a using straw. My kids and husband are still dealing with the trauma of the first surgery. Lord knows I'm still dealing with it. I have gone into deep depressions about my appearance and can get obsessive and angry about side effects. Pictures are VERY hard to be in, especially with my kids, because when I look at the photo it looks like my beautiful babies are being hugged by a lady that kind of looks like me. I cry every time I see a photo from before the surgery. That person is gone forever. I’ve asked God to change my brain so I can recognize myself. I struggle with how to deal with the past and accept my life now.

 

 

Surrounding all of this is my relationship with God. I believe one day He’ll show me why all this happened. I know He weaves skeins of sorrow and confusion into beautiful blankets of purpose and beauty because it's happened to me before. (Our IVF story is a testimony for another day but oh such a GREAT one!) He is showing me every day that He recognizes me and knows who I am. I am rebuilding my perception of my own beauty, what it means to celebrate myself and accept what God has for me. I am so thankful to be truly seen and loved by my husband, family, and friends even if I can't see myself. I hope by sharing my struggles and triumphs other women will see they aren't alone.

Going through this has deeply impacted how I see women, especially when it comes to beauty. A lot of people ask why I have this business and it's directly related to my story. I understand just how life-altering not liking your appearance (or yourself) can be. I understand what it's like to want change because I've been there. I'm still there now!  I am compelled to provide products for women that improve their appearance in a meaningful and lasting way because I know it makes a difference.  If I can help a women feel better about her outsides, I believe that can spark a deeper, more lasting change on the inside. I am compelled to contribute to supporting a positive self image because everyone deserves to live a meaningful, purposeful life and sometimes we get in our own way. If you're facing similar issues, I hope this post has helped in whatever you might be going through.

Thanks for reading. Please leave a comment to let me know your thoughts or your story. It would mean the world to me!