Been a minute since I’ve given an update! A lot has happened in life since the last time I posted. We moved to the PNW and had to do sooo much to make this happen. Had to fix up the house, fix up and sell the RV, find a place and then move all our stuff up there! I can not believe I have had the energy to do all of this. And I have started back at work, and although I feel behind and a lot of work is hitting at once, it has been really good for me to feel like I am getting back to life and making progress.

I’ve had to take a break sometimes from thinking about my health (one of the reasons I haven’t been posting as often). It’s just been such a weird journey, I still have a lot of anger from all the years wasted on long treatments. I really wish I could have had this surgery sooner especially before my pain, breathing and ability to chew had gotten so bad. Was reading the other day about pain pathways and how difficult it can be to unseat them once they’ve set ( https://www.health.harvard.edu/blog/chronic-pain-the-invisible-disability-2017042811360 ). Now that I am working again and nerves have continued to wake up in my face, I have had some pain return especially to my sternocleidomastoid muscle, which was really painful before surgery too. I don’t really feel a lot in the joint area but that area is still fairly numb. I am trying new things with more natural pain management and just trying the best with the cards I’ve been dealt, and still really thankful that I am not in as much pain.

My posterior open bite is still open too, I was expecting to be done with my orthodontic treatment this month but need another refinement set. Not being able to bite down on my back teeth has gotten pretty annoying/ causes some of the pain.

Deviated Septum

My septum deviated within the first hour sometime after my jaw surgery (possibly from intubation removal, a 6.5 mm tube was used to try and avoid deviations like this), and my nose doctor believes it is also broken as well. Most likely “bend beyond repair”, so I will probably need an autologous rib graft but he doesn’t know for sure until he opens up my nose. I really hope he can use my existing septal cartilage, but “expect the worst and you aren’t disappointed” is what I joke with my family about. I am really thankful that there is a solution to this, my septum feels unstable/ the base is off the vomer bone and leaning into one nostril and just feels very awful on top of the issues with breathing that I have been experiencing.

I got 5 opinions from different ENT/Plastics doctors before deciding what to do. Let me tell you, I’ve learned from my jaw!! Never go with the first treatment option you are offered, always get second opinions! I have learned that noses are also intricate, and there is a 10-15% revision rate of work. Concerning but I’ve tried to yet again find one of the best doctors for this procedure, who also has a lot of experience working with maxillofacial surgery septum deviations.

It will be about a 4-5 hour surgery which was shocking to me (my full jaw surgery was 5 1/2 hours) and I’ll have a cast on my nose for about a week. First 3 days are the most pain then everything starts to subside. Apparently my nose will be really big for awhile and you don’t see your “final” nose for like 2 years or more!! Swelling is some serious bidness.

I also get to go straight home after and don’t have to be an inpatient (but wish I could be on some IV antibiotics for awhile to avoid infection, again like a 2-3% chance of this with open septoplasties).

Eating

I have continued to explore new and more challenging foods, it is difficult still with my open bite or maybe I just need to get used to the joints more? It is hard to explain, my back teeth also hurt from the Invisalign so I think this is a big part. Last week I was able to eat some harder bacon which was difficult (but worth it), and a few days ago I was able to eat a tender filet mignon. I still need to cut my food into pretty small bites and take my time with chewing. For some reason I think I was just expecting perfection with my bite and chewing after all these treatments and surgeries. I know my jaw will probably be a problem for the rest of my life, hopefully I can keep future surgeries at bay (or better yet, I hope I can keep these joints for the rest of my life! Again, not setting the expectation because expectation = disappointment sometimes)

Other Updates

First bite syndrome has mostly gone away for me, but not until recently. Grapes usually set it off I have no idea what’s up with that.

Most of the swelling is gone from my face now, but I do have some that is hanging out around my mid face I think near my nose (but not my nose itself).

Overall still very happy I found TJR as a treatment option, despite some of the set back I feel like I am making good strides and I am determined to live a good and happy life! Thank you to all who have given me such huge support during the last few years ❤ I will continue to post updates as I have them and hope this blog can stay up for decades to track my progress after treatment.

TJR Further Specifics

7 months post op | Swelling and Feeling :

1. Swelling
   • Midface has some residual swelling
2. Feeling–
   1. Bottom lip 100% back
   2. Palate 70% in front, Middle I can feel about 70%. Worries me a little that feeling hasn’t really made a ton of progress here. Front teeth are numb too.
   3. Below eyes 100%
   1. Skin over joints 80%
   2. Chin 100%, actually hyper-sensitized

Invisalign

I’m wishing I would have done braces now tbh. The invisalign created an instant open bite when I put the trays in at 4 weeks post op, and that feels terrible knowing that I had le fort relapse when my roots are so blunted anyways

The invisalign made sense, because I needed it anyways for SFOT and I already had the attachments and believed it was gentler on the teeth. I still think it can be gentler. It was also mentally better for me to cope over the last 2 years than to have visible braces for a 3rd time in my life. If my bite meets up and I lose no teeth I’ll probably go back to saying invisaline is amazing, it’s a very up and down journey!