Healing is not linear (thanks to Lindsey T. for sending me this photo during recovery, it has been my phone background to keep me thinking realistically!).

I always think I can make these posts shorter when I first set out writing, but that doesn’t always work out for me. The reader’s digest version of this post:

1. Last few weeks gaining muscle strength back and eating more difficult foods, better swallowing, getting used to how the joints feel.
2. Septum could not be fixed. Will have to have another surgery to repair this
3. TADS (screws in my mouth/gums) removed!
4. Got new invisalign trays and rubber band treatment instructions to close the posterior open bite
5. Have had some more pain in the 11th week/ a flare up now that nerves are more awake. Feeling good again now and thankful the flareup passed/ wasn’t too bad.
6. Mouth opening is now 35 mm, I will try to see if I can get to 38mm-40mm. (My family’s mouth openings are anywhere from 50-65mm for reference)
7. First bite syndrome since first week, not a huge deal to me and probably will go away?
8. I really love burgers and sandwiches 🥪🍔

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The past few weeks have had their ups and downs, but I still have not had any major complications that have scared me, only minor ones. As I write this now, I actually had a huge stomach ache from how much I was able to eat at lunch 🍔, which is crazy to think about given where I was 11 weeks ago and the years and months leading up to needing this surgery. I’m so thankful for where I am at now, and that the hardest weeks of recovery are behind me. I will probably need to replace the joints a few more times in my life, and those recoveries will not be as difficult as this one (I only have to do the upper jaw surgery and genioplasty once for function). I am also thankful that I am getting back to normal life more quickly than I anticipated for myself!

As I’ve been feeling better I have gotten back to a more normal life balance. Cleaning, paying bills, yard work, creativity, working some, multiple renovation projects, grocery shopping and making foods that I don’t always need to blend! I have not eaten a soup now in 3 weeks and honestly can’t stand the sight of smoothies, nutrition drinks or soups. My diet has been a lot of burgers lately haha.

Here is a quick run down of the past few weeks post op😄:

• 6th week
  • Cleared for hard chew diet! This doesn’t mean that everything is back to normal and I can eat all the things, but rather a slow progression to building back up mastication muscle strength, figuring out how to eat with the synthetic joints and learning your current limits (given the le fort healing sensitivity/pressure and teeth feeling achy among other things). After not using my chewing muscles post-op (and the strain on some/ lack of use on others pre-op) the muscles atrophy. I lack some permanent bite force due to some of the muscles being detached during surgery (part of the pterygoids, permanent atrophy) and the masseter muscles having to be cut through and reattached, which is the main reason for the limited mouth opening after surgery – have to work though the scar tissue and stretch.
  • The le fort area (upper jaw) of my surgery was (and is) still very numb and sensitive in my central face. I also was experiencing slight headaches more often when I chewed.
    • If you think jaw surgeries are interesting too: A well detailed video on the le fort 1 – 1 piece (there are 3 types of le forts and different “pieces” on each of them that can be done, most TJR patients have the le fort 1-3 piece or le fort 1-1 piece). The second part of the video, sagittal split osteotomy, I did not have done. I have these fixation plates as well but mine are much smaller (Dr. Sullivan told me he helped develop the plates that he uses in surgeries). Crazy to think the boney part of the maxilla is just free floating like this after the surgical cut! The cut line perforates the sinuses, a huge reason we are all so congested after this surgery for weeks and weeks.
    • https://www.youtube.com/watch?v=R6rw24p_nAA&list=PLAWfjJVQJtihBZMeLgooY-40TL9rC5rJn&index=2&t=9s
    • (Xray of my Le Fort 1 plates and screws and how small they are)
• 7th week
  • I was able to visit my orthodontist and open my mouth just wide enough for the iTero scanner for invisalign to start on my refinement trays and rubber bands. This is all in effort to close my posterior open bite (most people need orthodontic work after TJR surgeries). I had a 22-25mm mouth opening so I was shocked we could fit the camera in my mouth (they had to take off the head for scanning the back molars is all). And thank goodness for the days of impression taking being over…I sometimes feel like I am living history of the evolution of orthodontic work.
    • (If we had to take impressions, it would have been months until I had the mouth opening and felt comfortable enough to have that sort of suction against my palate, lower jaw and teeth.)
  • The posterior open bite has been the next most challenging obstacle for chewing besides lacking the muscular strength. It has been somewhat jarring to go from ~15 years of an anterior open bite to a posterior open bite almost overnight.
  • ✨GOT MY 6 TADS (temporary anchorage devices) OUT! ✨ My gums/ soft tissue had grown around the bottom one and the other ones were uncomfortable on top of everything else I was dealing with. So thankful those were able to be taken out 😭❤️. Thankfully I was under anesthesia for this. I’ve heard from someone else it wasn’t so bad getting them out without anesthesia, but I am always thankful to have the option to not remember my medical traumas lol.
  • We were not able to fix my deviated septum under anesthesia. Huge bummer as my nose is slightly crooked and my breathing is about 50/50 out of my left nostril. Healing during allergy season has not been kind to me either….
    • I am meeting with 3 different nose doctors to get second opinions on this, since it is a complex high deviation (said the first ENT I went to) it doesn’t seem as straight forward as I was hoping it was. These appointments are in June and July. And I just always want 3 second opinions (at least) on any medical decisions I make, given the history of my jaw and always going with the first treatment a doctor recommended without fact checking them/ confirming their opinion. Lots of disagreement in the medical community on treating TMJ issues/ many treatments aren’t even evidence based!!
      • More on TMJ evidence based treatment: “Evidence based clinical practice guidelines for the treatment of TMJs do not currently exist, despite the fact that treatment is common. Evidence about the safety and efficacy of these treatments is sparse; many of the research studies that have been conducted are insufficiently powered to produce solid conclusions, lack appropriate comparison or control groups, are missing standardized outcome measures, or focus on individual interventions without the context of holistic patient care.”^5,6
• 8th week
  • Had enough bite force to bite into a McDonald’s burger. Didn’t need to tear it into small pieces either like I did pre op. Honestly, highlight of my year👌 and the start of my undying love for burgers.
  • 
  • I think this was the week that my swallowing was starting to become more regular and predictable, thus why I felt comfortable enough eating a burger! I realize now that some of the swallowing difficulty (besides having to relearn) was with swelling and tongue movement. Weeks 8-11 mouth swelling went down quite a bit! I think after TJR and not having lateral side to side movements of my mandible anymore, I had to start using my tongue more to move food around. This is just my experience, every case is different.
  • Still doing popsicle sticks at least once a day in the mornings to widen my opening (gotta fit bigger burgers in!) – I am at around 30mm at this point! I also yawn a lot, I consider that stretching too haha.
• 9th week
  • I’m still continuing to do 2 sessions with my craniofacial PT a week and once a week with my myofunctional therapist. I still haven’t gone back to my chiropractor yet, who helped me the last 5 years with my cervical spine issues that have resulted from my jaw health/ he helped me to manage some of the pain.
  • Now that I am eating more normal foods often, I have felt more energetic.
  • I did a lot of yard work and realized just how weak I had become!
  • 8th-9th week speech feels completely back to normal
• 10th week
  • Got my refinement invisalign trays from my orthodontist. The rubber band treatment is surprisingly more painful than the other 2 times I have had it in my past. My roots are so short and I think everything is just inflamed.
  • 
  • Eating is getting easier. I can bite into/chew tortilla chips now and have had cheese and ritz crackers!!
  • I am having more low grade headaches than I did post op, which I think correlate to how much more I am eating/chewing and definitely the rubber bands are contributing.
  • Got another burger – look at that bite mark! My diet is consisting of mostly bad food but it has been nothing short of aaaamazing and I have loved every second of eating food without much of the pain! I bite into everything just for fun and relish every bite. I’ve been so hungry. I’ve actually had a couple of upset stomachs from eating too much!
  • I feel well enough now that I am starting to cut back on appointments and therapy that manage pain levels and exercises.
  • My bite opening is now at 35mm! Let’s see if we can get it to 40! 35-40mm is the average/general goal that Dr. Sullivan sees his patients get to after these surgeries.
• 11th week
  • Ate 3 sandwiches this week 🥪🥪🥪 (blended bacon and cut up into manageable bite sized pieces! Still a little too difficult to bite into).
  • Had more pain this week – unfortunately, old pain patterns returned in my neck and shoulders, though not to the extreme levels that they once were. As I am introducing more stress back into my life/ not resting as much, I am not entirely surprised. My facial nerves are also starting to wake up as time goes on, so I am more aware of pain now. Luckily it was just a 2-3 day flare up and I think wearing my rubber bands more often, sleeping wrong, chewing more and stress all contributed. This was also the week I decided that I was doing so well and didn’t personally need craniofacial PT anymore – figures!
  • Smile still feels tight, I am hoping it softens more in the coming weeks

Focusing on

At this point, I am just focused on,

• CHEWING: Continuing to chew more difficult food items, slowly. I’m still blending baked chicken and more difficult foods.
• INVISALIGN: Closing the posterior open bite, and rough estimate will have ~4 more months in invisalign and rubber bands – that’s not much!
• NOSE: Getting my nose looked at to correct the septum. I think it is smart to wait maybe a few more months for this (it would be best to wait a year for alllll my swelling to go down, but I don’t personally feel I can wait that long breathing like this).

I am not sure what can cause the posterior open bite… I think it is different for everyone and I have read before that the le fort can settle a little/ my teeth roots are so short that my teeth seem to move around pretty quickly too. I was not able to wear my invisalign trays for 4 weeks after surgery because I could not open my mouth wide enough to put in my trays. I know that this type of open bite has happened to other TJR people, so I don’t feel so alone. Just wish that I had more teeth root for stability! Which hopefully the SFOT surgery provided enough of last May 2021 with the bone grafting.

First bite syndrome

I also don’t think I have mentioned this yet, but since the first week after surgery I have experienced something called first bite syndrome¹ , another friend I talk to regularly has this as well. Sometimes when I bite into something (especially the first 2 meals of the day), I have this short lived pain near where my condyles used to be, very similar to the pain levels of a moderate brain freeze at its strongest lasting 3-5 seconds. It usually happens more strongly when I eat something really savory or sweet. “…result from damage to the sympathetic innervation of the parotid gland leading to parasympathetic overactivity”² I hope this goes away, reading more about it seems to suggest that it can calm down but takes time. Botox injections can also be administered, but mine is so mild I don’t think I would even do that. Something I will be asking my surgeon about next time I see him.

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TJR Further Specifics

11 week post op | Swelling and Feeling :

1. Swelling
   • Intraoral swelling is down
   • Swelling around the area of my TJR is down more, under my eyes is still pretty puffy from the le fort. This is probably my area of greatest swelling
   • Chin swelling is massively down now
   • I am sleeping on my side comfortably now
2. Feeling–
   1. Bottom lip 95%, middle of lip is numb and lacks some sensation
   2. Palate 70% in front, 100% in back, middle seems to have lost more feeling somehow? Or more likely, that I can feel the rest more it feels more numb. Middle I can feel about 40% I would say.
   3. Below eyes 95%
   4. Cheeks 100%
   5. Skin over joints 70%
   6. Chin 70%

Invisalign

Per my last post about invisalign possibly contributing to posterior open bites³ (thanks to Micaela in the ICR group for pointing this out!) – I talked to my orthodontist about this. Thankfully he understands invisalign well (is currently the top provider in Arkansas⁴) and he said that this is usually not a problem that he has to correct. He said that often times the back teeth “erupt” to fill the distance. Another orthodontist online said that the front teeth can be tipped slightly too to close the back teeth. Overall, I am still very thankful for the invisalign. I had to have it anyways for the SFOT surgery to fully control my dental arches/ expand them with exactness. I really like not having braces as a 30 year old, I think mentally I would not have handled traditional braces well for a 4th time. I also feel like there are slighter/gentler adjustments to the invisalign. Remembering braces, the wire would be really strong the first few days, just a concern for me personally with my blunted teeth roots – I feel like Dr. Roblee does very small adjustments to each tray so that I don’t feel a lot of pain from them.

Lateral side to side motion

I know I got to keep more of my pterygoid muscles than others (since my resorption went on for 20 years or so, the muscles moved anatomically down my jaw bone to find attachment😳 so he didn’t need to cut out as much condyle on me – there was just not much left to cut out!) but I just do not have much lateral side to side movement. Maybe 1mm to the left and 1mm to the right, but I hate moving my jaw in that way now against the prosthesis. It just feels wrong! So I don’t even try and stretch it to gain more movement. I don’t feel like I need it anymore now that chewing has gotten easier just from practice.

Most surprising things to me at 11 weeks post op

• I am amazed that I feel as good as I do. Still getting back to normal, but I am definitely very functional now! Healing is a long game, and the biggest hurdles of my healing were in the first 6 weeks.
• I’m surprised by the weird feelings in my le fort and not being able to feel the middle of my palate. My upper teeth are still numb too, I tap on them and don’t feel anything/ have been whitening my teeth like crazy without the consequences.
• Yawning is slightly painful, esp on the left side that used to be my worst side. Part of the pain is stretching the masseter muscles.

Update vlog on progress, talking, exercises etc:

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Links:

1. https://pubmed.ncbi.nlm.nih.gov/22573579/
2. https://medicine.uiowa.edu/iowaprotocols/first-bite-syndrome
3. https://orthodonticteaching.com/news/prevention-and-treatment-of-posterior-open-bite-with-clear-aligners#:~:text=Posterior%20open%20bite%20is%20often,or%20a%20lack%20of%20overjet.
4. https://robleeortho.com/invisalign/
5. http://tmj.org/wp-content/uploads/2020/12/NAM-Report-on-TMD.pdf
6. https://tmj.org/living-with-tmj/treatments/