In a nutshell – these last 2 weeks I have spent my time on increasing my mouth opening, enjoying my new soft chew diet 😄, working on proper swallowing and tongue placement with a orofacial myologist, getting better at speaking (starting to sound like my old self), lymphatic drainage massages from my craniofacial PT, considering what to do on my deviated septum and working on posture. There have been ups and downs and I constantly have to remind myself that I am still just 5 weeks post-op!

I am constantly reminded that I had jaw surgery, either from my mouth that has a limited opening or the pressure or lack of sensations I feel within my mouth or around my face. I woke up this morning actually forgetting that I had had jaw surgery, until I got up and started moving around. But it was nice for awhile 😉. I constantly am needing to give myself grace for what feels like very slow progress at this stage post-op. But I also am very thankful for most of my past pain not being here – I would take the post-op discomforts to my worst days of pre-op pain any day for sure.

I have also been able to have some limited hang outs with family and some friends, so I have been happy that I am able to do this 4-5 weeks after surgery! Everyone understands I won’t be talking a whole bunch and it is nice to just be surrounded by loved ones. Thankfully it has been warm here too.

Soft chew diet!!

This is probably the biggest news I have!! March 18th I was cleared to a soft chew diet – but it wasn’t as quick and easy as the moment I was dreaming of. My mouth opening was still just 10mm on March 18th (due to the surgeon having to cut through the masseter muscles you have to work through that scar tissue and re-stretch that area on the muscle. I had to do the same thing on my bilateral fat graft diskectomy in 2016 – different muscles.) and the moment I placed food in my mouth it felt like I had a robot jaw. I couldn’t move side to side just up and down, one of the drawbacks of the prosthesis and losing part of my pterygoid muscles –these have to be cut out – they attach to the condyles so when the condyles are removed, the muscle can not be reattached to the prosthesis. In my case – I had had ~20 years of ICR, so my pterygoid muscles had actually moved DOWN my jaw over the years. I got to keep part of them! (The rest of the muscle is detached and atrophies over time). Which means I have a few mm of side to side movement. I don’t enjoy trying to move side to side though because of the resistant forces I feel from the prosthesis if I move more than that 2-3 mm, it doesn’t hurt, per say, but you feel the plastic fossa pulling against your skull on one side and the titanium on the mandible on the opposite side pulling. Same thing if I push my mandible forward I can do this about 1-2mm but it feels wrong. My facial muscles are also still in a state of spasm sometimes just post-op issues from everything being moved to a new location on my face and stretching out so many of the muscles that had been shortened over the last 10 years especially – so this makes makes them upset sometimes too. This is another reason you have to wear the rubber bands, in order to train your lower jaw on where to sit. It sounds strange but since I had a le fort (maxilla was moved up 6-8 mm I think and 5 mm forward) I don’t have a lot of feeling in my upper teeth or palate still! So the muscles kind of freak out a bit. I am also at the lowest weight that I have been at since I was 14 years old with my scoliosis surgery but I think I will be more able to gain weight now with all the pasta I am eating ☺️

Ok, without further ado, here was my awkward first “soft chew” bite (it was weird… but I had Anita Baker and my dad cheering me on). This was really difficult to do, the mechanics of chewing and swallowing with the new joints and throat/mouth space. So I was very proud of myself and thankfully it was just basically me and my dad at the restaurant.

Swallowing

Once I started my soft chew diet I started to have more swallowing and muscle issues. All feel mostly resolved now as I am writing this thankfully, but I had an orofacial myologist evaluate me on my 4th week post op. Wish I would have met with her before surgery…we are curious now if I had a backwards swallow which would have been slamming my condyles against the back of my fossa all these years. Paula knows her stuff and has worked with many TJR patients before – I am very thankful for her expertise! (I do facetime consults with her since we live in different states http://orofacialmyologist.org/paula-fabbie/ )

She taught me how to properly swallow, now that I had the correct mouth and throat space to not have to be “compensating” anymore. Old muscle memory dies hard, esp for me apparently. I have not talked to many others who had as much difficulty swallowing lasting weeks post-op. So we worked on swallowing and tongue placement the 4th week post-op. This is when I started to experience a lot of muscle spasms. The worst of it only happened 3-4 times, but it got so bad that I couldn’t swallow at all for hours at a time. And even if I was doing nothing it felt like my muscles were all fighting and pulling my mandible around in every direction possible, which it can not do anymore! I had to put my bands back on during the day time when this happened. Part of the problem was I had stopped taking the klonopin as I was feeling less pain – but coming off of it too quickly has it’s own problems, and I have been taking it for years now to manage the muscular pain. So I am tapering off of it, and my muscles have calmed down a lot. I have continued to practice my correct swallows and take the medicine and it has not bothered me much since!

Mouth Opening

I have been working with popsicle sticks to get my mouth opening larger. I am adding about a new popsicle stick every 2-3 days. In the beginning it is probably faster to get a larger mouth opening, but we are aiming for 35-40mm. Right now I can open 20mm. I imagine my fast progress might slow down as I approach 30mm. I have heard this takes months, and I practice opening as wide as I can at least 2-3 times daily. I also have other PT exercises I work on, myofunctional therapy (shared in my jaw vlog), and thumb exercises. I still have to go in 3 times a week for my thumb, and unfortunately might need another surgery for it . So that is disappointing. How many surgeries can you safely have in a one year time span? I feel like it is a job in and of itself remembering to do all of these exercises, research things still and go to all my appointments.

Energy Levels

For 4-5 weeks post-op I feel like I am doing pretty good! The 4th week I was still pretty tired but this week I have run lots of errands and been ok, but at night things start to get a little sore in my prosthetic joints (fossa and mandible area) and I feel more pressure behind my skull from the le fort. Allergy season doesn’t help. I still think I am sleeping better with a larger airway, so I still feel so much less fatigued than I used it. Even a friend commented that I was much more “here” recently. It is great to wake up feeling more refreshed and that it lasts through the whole day! I think some of my anxiety levels have even gotten better with proper sleep, however I am still very anxious about my jaw and my septum. Meal time is still anxiety provoking too – but overall I think I have improved, outside of normal post-op anxiety! Sometimes I have noticed that I become overwhelmed easily, but I think that is also understandable.

Deviated Septum

I went to an ENT doctor to get a second opinion on my septum and he said it is a complex deviation (he also looked in my ears and asked “Can you hear me??” I was like “…umm, yes?” and he proceeded to pull out of both ears a massive blood clot! I couldn’t believe it. I could hear so much better after he extracted both. Gross!). The septum is impacted from my maxilla and is high and far back. I also had a previously deviated septum, which I didn’t believe until I saw the cut in my past CBCT scan. But now it is REALLY deviated. This doctor wants to reduce my enlarged turbinates, fix the septum and also have a board certified plastic surgeon in on the surgery to help make sure that the septum/ nose goes back to being completely straight afterwards. I talked with my surgeon about this, and after some consideration I am still going to have him try to reposition it next week. He says that it will not mess up any future ENT work on my nose – but if I could do anything to help me breathe better now it is worth it to me. The ENT doesn’t want to operate for another 3 months! Plus I need my TADs (screws in my mouth) removed – and I would reeeeeally like to be under anesthesia for that anyways. One has now been completely enveloped by my gums and tissues and is painful, while another one is fighting off being covered. I can not WAIT to get these things taken out.

It will also help my lips to meet, which I am also working on with the myofunctional therapist. Apparently this doesn’t always go back to normal and has to be worked on too since these muscles become shortened and trained in an open mouth position if you have a large open bite like I had before the surgery.

Posture

I thought that my body would right itself once I had this surgery – it did some, but I still have some residual forward head posture and very rounded shoulders from how my body was trying to compensate before in order to open the airway. The myofunctional therapist and physical therapist are helping me work on this right now, hoping to help ensure the stability of my new joints! I think I will go back to my group pilates class next month if I am cleared by my surgeon to help my posture and my scoliosis.

Prayer Requests🙏

Some people have asked how they can be praying for me,

1. Pray for the new muscular pain/tightness underneath my mandible to get better
2. Pray for continued healing and lack of complications from this surgery
3. Pray that my septum would go back into place during my operation next week so I can breathe better, and that there would be no le fort complications from this! Just my anxiety making me nervous on this last part.

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TJR Further Specifics

4-5 week post op | Swelling and Feeling :

1. Swelling
   • I can’t tell if swelling is down. Still puffy in all the areas that were operated on!
   • I stopped sleeping with my wedge pillow the 5th week because of my scoliosis it was becoming uncomfortable/ I was sliding down at night. Instead I stacked 2 pillows for my head and have a thin pillow under my back.
   • I have been sleeping on my side more and waking up to more jaw pain in the mornings… hard for me to sleep on my back.
2. Feeling–
   1. Bottom lip 95%, middle of lip is numb and lacks some sensation
   2. Palate 60% in front, 80% in back. Nothing has changed here.
   3. Below eyes 70%
   4. Cheeks 90%
   5. Skin over joints 50%
   6. Chin 50%, yay progress!

I don’t know if I said this in a previous post or not, but my le fort stopped cracking I think the 3rd or 4th week so thank goodness! I still feel a lot of congestion/ pressure, but that seems like that is here to stay for awhile. I’m not really using my humidifier anymore.

Invisalign or Braces?

Some others have been noticing that I don’t have braces! We had to do a specific type of orthodontic movement in order to align my teeth correctly for my total joint replacement. My teeth roots were so blunted from my other 3 times in braces that we were worried I would lose teeth during this process/ my final occlusion would be less stable. So I did SFOT May 2021 (surgically facilitated orthodontic treatment/therapy) in order to move my teeth and it was best in my case to use invisalign to expand the arches and move the teeth.

I personally think invisalign is gentler on teeth roots with an orthodontist who uses invisalign often. Dr. Richard Roblee makes very small changes on me from tray to tray, so I feel confident that we are doing everything we can to keep my teeth. I still need ortho work post op as my teeth are not all hitting on the left side. Dr. Roblee told me to wear extra rubber bands on the left side TADs in order to try and intrude the right side teeth more. Hopefully my last intrusions ever 😭. 3rd time’s the charm. Not much left to intrude.

I was able to still fit in my last invisalign tray on the 4th week post op (with a 15 mm mouth opening, I had to use tweezers to pry it off as my fingers couldn’t fit in my mouth still! Still have to use the tweezers 5 weeks post-op) teeth had moved but I cut up my top and bottom invisalign tray further so that they would flex more to fit. I also shaved down part of my invisalign attachment with a drilled nail file 🤦‍♀️, my upper canine was hitting hard on it and causing my occlusion to be off even more and that tooth to be more loose from the contact. You do what you gotta do!

A note on invisalign vs. braces: Most surgeons will prefer the braces. They can fixate the dental and skeletal whereas with me my surgeon could only fixate my skeletal post op. The TADs also tend to get covered by gums and tissues and are more painful to take out after surgery.

***Edit: It has also come to my attention from talking with other ICR friends that clear aligners can sometimes cause a posterior open bite³, of which I am just realized I am struggling with on both my R and L sides. I placed my aligners in 15 days ago and now have noticed the right side opening up since then. I meet with my orthodontist next week to discuss!

Muscular Issues

I’ve experienced more muscular pain (new muscles than pre-op) in the red areas circled below.

I keep massaging them but I am surprised that these muscles didn’t hurt until 4-5 weeks later. Just part of surgery and having my jaw moved 22-24mm I guess. Also, just note, whatever your muscles are doing now might carry over into your post TJR jaw. I used to yawn towards the left, I guess because my left joint was more broken down, and I had this same muscle memory after surgery and have been working on equally strengthening both muscles and getting them even. So don’t be surprised if this happens to you!

Muscles and posture don’t always automatically reset! The surgery helps but this all takes time, I am coming to find.

ENT Visit

After your surgery – do yourself a favor and get your ears checked by an ENT. I had those huuuuuge blood clots in both of my ears that I was not aware of! The ENT pulled them both out, both were about 1.5-2 cm long and as wide as my ear canals 😓. I could hear so much better after this. My ear drums were fine thankfully 👍 He couldn’t see all the way down into the left ear canal as that one is still pretty swollen from surgery. The TMJs are crazy close to your ears.

✌️

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Links

1. https://www.craniorehab.com/average-jaw-mouth-opening#:~:text=In%20studies%2C%20MMO%20for%20adults,and%20women%20to%2045%2D55mm.
2. https://www.perioimplantadvisory.com/clinical-tips/surgical-techniques/article/16411515/surgically-facilitated-orthodontic-therapy-sfot-maximizing-case-outcome
3. https://orthodonticteaching.com/news/prevention-and-treatment-of-posterior-open-bite-with-clear-aligners?fbclid=IwAR3mEmouSFl-RFApC3Qv8zRK0Zi33PGnGziNtLjglz4bPzdB1IQvp3ndnVI#:~:text=Posterior%20open%20bite%20is%20often,or%20a%20lack%20of%20overjet