Today I had my 10 day post-op appointment with Dr. Sullivan and was greeted with a cool surprise – the surgeon who invented the surgical counter clockwise rotation of the mandible was there, Dr. Johan Reyneke. Dr. Sullivan had reached out to him awhile back in his career while Dr. Reyneke was working in South Africa and the two of them seemed to be having a good time reconnecting and it was also fun for me to be part of the medical conversation (I feel like my checkups with Dr. Sullivan are part checkup, part talk about life, part talk about TMJ discussions or other aspects of his work that we both find interesting. I really love how personable he is and he is never in a rush to get his patients out the door). I also had the benefit of having two star surgeons at my checkup appointment answering my questions and checking my progress 😏

The checkup overall was good, but my septum is still very deviated 😓. Trying to pop it back into place did not work last Thursday. Dr. Sullivan and new BFF Dr. Reyneke were at a loss for how this could have happened, as the surgical technique Dr. Sullivan performed was appropriate and checked over, and the type of deviation I have is high and far back, which is apparently odd. It sounds like it was not the anesthesiologist’s fault from further investigation. I raised my L hand in it’s splint and told them “Well, I’m generally kind of unlucky” and we all kind of sadly laughed together haha.

I can only breathe out of that side about 20%, it is numb and I still have Le Fort placement congestion from the blood that pools in the sinuses. To make matters worse, I am not allowed to blow my nose (part of recovery protocol). I also asked him about my ears becoming clogged at night from the congestion and he said this was in part because of the movement of the Le Fort, canals and sinuses are just in different places, stretched, and adapting to their new sudden positions, so this seems like something that is just part of the ongoing healing process.

The part I am upset about is really that I have to have another surgery to fix this, which will be my 4th surgery in under a year to continually manage the complications with my Idiopathic Condylar Resorption (one was a thumb surgery this year…I still blame my jaw 😉😉). It just feels like it never ends. Thankfully, it is also easy to remind myself that if something were to go wrong with this surgery…I am so thankful the only complication so far has been my nose.

I have to wait at least 6 weeks or more to have the septum surgery ( I think a rhinoseptoplasty?) so that the Le Fort can have time to fuse. Last thing I would want to do is mess up my maxilla from a nose surgery. Dr. Sullivan also wants my turbinate swelling to go down before I have this surgery. This might be part of the new surgery anyways though with an ENT to reduce them.

With my new found airway, lips that meet, and ability to breathe better, it is a little sad to me that I now struggle to nasally breathe. Mouth breathing is not healthy. But I am still able to breathe through my nose when I am consciously thinking about it, so it is only at night that I might be mouth breathing.

In other news, I also am allowed to take my banding off to eat!! The TADS hurt a bit under the rubber band tension

and the more forced contact that my teeth make also hurt. To have them not touch for years then suddenly touch overnight has caused mild nerve pain throughout my mouth and a little in my face (but nothing severe). Dr. Sullivan said this is normal. I am also allowed to open up all the way, and one finger is as wide as I can open (for now).

Opening any wider than this causes extreme muscle tightness and pain, and I hear some crackling from somewhere, and the rest of my face is just overall tight still from so much swelling. Dr. Sullivan also had to do a “sling suture” over one of my zygomatic muscles, looking at a diagram of the zygomatic muscles of the face… I have no idea the location. I keep learning new things about this surgery every time we talk and continually am overwhelmed by just how much goes into these surgeries with all the different muscle, artery and nerve groupings.

Eating and swallowing today: I got a little too ahead of myself and tried to eat some scrambled eggs that I ended up *blending* with a liiittle bit of coconut milk, but it was such a mess. Worse than a toddler. I then tried spoonfuls of chocolate chocolate pudding to no avail, I had to use a mirror to see exactly where my mouth was and opening since apparently that muscle memory of spoon to exact mouth opening position has changed too. Imagine if your arms and legs changed disproportionately in length overnight and all of a sudden you are expected to go and play 18 holes of golf 😉.

I think I just really need a wider mouth opening to make these new food delicacies part of my life and to learn how to use my tongue to move around food again. I am not cleared to chew yet due to the Le Fort healing. I asked about exercises but he doesn’t want me doing anything for now. If I haven’t stated before, the banding is to retrain your muscles to open and close in the new way that your jaw is set (see Xray image above)

All of my muscles are very stretched from the forward movement I had (about an inch forward!). Yesterday I started feeling the pain/ pull of my highway muscle, I am cleared to start trying to stretch this muscle out some. (I am really looking forward to going home and seeing my awesome jaw PT for some lymphatic drainage. She has been such a good friend to me too through all of this as my health has degraded more over this past year.)

I have been very happy to have some of my worst muscular pain disappear overnight from this surgery. This was my biggest concern over pain if the surgery would help me or not that no surgeon could answer for me.

Currently I have just some boney pain from where the prothesis is screwed into my skull and mandible on both sides (one of my ICR friends said she had this kind of pain for 1-2 months afterwards) and some pain from swelling and new muscles being stretched, but besides that I really am truly amazed with my progress. I am taking ibuprofen still and parting up my norco to start coming off of that, and using klonopin and trazodone for the muscular pain which truly helps a ton. It actually is helping me manage the pain possibly better than the norco at this point.

Healing very quickly: I am still overjoyed with my healing process! I still think I am healing faster than normal, I know a lot of people have been lifting me up in prayer (family, friends, friends around the world and in India through a mission group my uncle Mac works with) and I think I have felt the Lord’s mercy and grace more in this season of my life, and felt personal growth, peace and gratitude. And acceptance. A couple times even people have reached out to pray for me sometimes within hours of me experiencing my lowest lows, without having known that I was feeling so low. I wish there weren’t suffering and wouldn’t it have just been better to not have this affliction to begin with than to praise the Lord for a quick recovery? And my friends’ sufferings in my ICR group, why must they experience so much pain, many worse than I? The unfairness of life in general – these are questions I don’t have the answer to and I know I will never have all the answers or know these things. And I like answers.

“For the Lord is close to the broken hearted and saves those who are crushed in spirit”

Psalm 34:18

I hope I am able to help others with their jaw issues now and this gives me some more peace, and I really love some of the friends I have made through the ICR group that I am a part of. They are a big big part of my support system. Anyways, I have a buuunch of books to read about this subject too that I am looking forward to, and a beautiful devotional from an ICR friend and another from my aunts and mother-in-love ❤️! Long winded way of saying thank you all for the prayers and I feel God at work/moving in my life, story and in my healing❤️

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Before and After: Here is a shot of my before and after so far! I love both of these girls in these photos and get a little emotional looking at both. I am in a weird spot where I am starting to disassociate with the look of my old self / am not recognizing her anymore but also don’t recognize my new self either. I suppose I am in a sort of “Who am I?” limbo. Body dysmorphia during ICR is super common, as it is also when major surgical movements have been performed. I was told by my dentist it might take awhile to get used to my new look and she is right! If you see me in the future, the best thing you can say to me is, “You were beautiful then and you are beautiful now” ❤️

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To those considering TJR

I am still very very happy I did this surgery so far, I know it is too soon to tell … but I was at an absolute breaking point in my life and something had to change. It was time for me.

Since I am more mentally “here” now haha and the worst days of healing are over, I am trying to get more vitamins, minerals and healthy foods into my body to give me the best chance at healing.

I have resumed taking ground up,

• Calcium
• Vitamins labs showed I was deficient in ( I recommend everyone take a lab test a few months before surgery to see what you are deficient in and add those vitamins into your diet before surgery)
  • Magnesium
  • Vit D
• Vitamin C

I am also taking shots of this organic super food complex I bought online of organic veggies and fruits, probiotics and collagen for healing. The collagen helped me heal quickly from my SFOT surgery a year ago I feel like! There are a lot of good supplements you can take in liquid form thankfully. Give your body the power to heal ❤️

Food prep before surgery: I also feel like I messed up on my food planning. I felt SO PREPARED with my 30-40 Daily Harvest readymade smoothies I packed, ready for my fam to just throw in the bender, but they were too cold on my teeth even with the syringe and hurt to eat.

The first week I survived only off of syringed,

• Bone broth (a high quality frozen one from whole foods)
• Apple sauce
• 3 different pureed soups my family had made for me
• Kate Shakes (like ensures or boost, but doesn’t make my throat gooey and congested. Taste better too.)

A tiny syringe has also been invaluable to me for mixing antibiotics/ vitamins in my pill crusher with Hershey’s chocolate syrup. I also had this tiny syringe from my first jaw surgery and am unsure where to buy it online.

Now that I can open my mouth a finger width, I think I can get more smoothie in 😄

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Also, apparently today is Rare Disease day. Thinking of all those out there today with misunderstood and misdiagnosed illnesses and pain ❤️