Dec 9th - 20th, 2023
Saturday December 9th - Wednesday December 20th
Medical updates:
Mouth: JAW SURGERY HEALING AND NEXT STEPS
Symptoms:
Swelling continues to decrease, and I feel like this last little bit will stay with me for awhile - I’ve been taking daily photos and posting them here.
Soon after my last post, I started smelling a really bad smell. I checked with Patrick, he confirmed that he also smelled it too. We thought I just had horrible breath from the splint or general post-surgery healing (its been bad for the last 2 ish weeks), but I kept being confused about if it was coming from my nose or mouth… I would smell it when I was brushing my teeth or swishing mouth wash. So, we did some testing and it was in fact coming from my nose breath (so weird and disorienting!). More info and surgeon conversation below under the 12/15 and 12/19 appointment updates.
12/10 my splint started to break as we were leaving the house to go out and cut down a Christmas tree - the first we’ve had in our home (moved in May 2021). The splint popped off the back right side of my teeth and I quickly popped it back on with my tongue - it was pretty scary, of course. Then it started happening more while we were out and about. When we got home, I reached out to my surgeon and sent a video of what it looked like back in place and he said he wasn’t too concerned and ok to wait till we see him 12/13. So that was positive but I also wondered if he was just being sensitive to the fact that we live far away. (videos and photos here)
I’m having lots of headaches with varying patterns (base of neck, sides of head, forehead, etc.). Also feeling a lot of pressure in my head, sometimes painful and sometimes just like my ears need to pop.
Tension, burning sensation, and tightness around scar tissue, both the scar tissue that’s newly developing from this surgery and the deep scarring across my face from the initial injury.
I’m sure some of the sensations around my scarring is also nerve pain. I feel general burning, tingling, and tightness on most of my face on and off.
I’m back to having pretty consistent ghost tears, snot, drool - I realize I came up with this term and not sure it really explains what I mean. Like a phantom limb that one feels but isn’t actually there. It is like I can’t trust my own sensations.
I am also completely numb, so I can’t feel actual tears, food on my mouth, drool, or most regularly dripping snot/mucous/blood from my nose.
Pain control: Stopped taking Oxycodone as of 12/16, and I continue needing Tylenol and Ibuprofen on board. Pain is manageable and generally getting better, though it is evolving as the next steps with my mouth evolves. It’s not like I’m just finished with the surgery and good to go with resting/healing, every week something changes in my mouth and I have to adapt.
Appointments:
12/13 Orthodontist: She was happy to see me and it was hard for her to tell with the splint on if she would be able to fix my occlusion (bite). She confirmed the splint was breaking and we scheduled for me to see her after the Oral Surgeon appt later that day in case he removed the splint. We also set up appointments with her every week after seeing him for the next many weeks. She is a really wonderful, caring, and silly person and I am grateful to have her on my team!
12/13 Oral Surgeon: He said it was ok the way the splint had broken and if I can stand it, he’d like to keep it on another week. The half of the splint on the back of my teeth isn’t doing anything really so if that part falls off it’s ok. Next week I’ll see him for splint removal and then Orthodontist for a continuous braces wire across the top teeth and top to bottom rubber bands. He also said that the tissue looks even better than last week and I’m cleared for hot tub, all great news!
12/14 I was working all day on lawsuit stuff (which is emotional and challenging) and got a text from the Oral Surgeon that after he and the Orthodontist talked and brainstormed about my case, they’d like me to come back tomorrow to get the splint off and start working on occlusion (bite). So, once again, we rearranged our schedule to accommodate. We were also in the middle of a big snowstorm so a little worried about roads but luckily it cleared up by the afternoon.
12/15 Oral Surgeon + Orthodontist:
It was fun to see these two in action together. I really like them both and can see now why they work so well together.
Nose breath: they said it is probably from the mucous/blood/etc in my sinuses post surgery, but could be an infection, so we will likely start antibiotics. Then the surgeon took my splint off (photos here), which immediately felt like a huge relief, started looking at my teeth and decided maybe my tooth is actually infected and causing the smell. This is a tooth they have said many times likely won’t make it but we want to keep in as long as possible. So, I sign a waiver and they start prepping to take my tooth out. At this point my nervous system is on high alert but I’m working to breath through it and the surgeon is a comfy person to be around, so that helped. Then, he decides not to even remove it because the segment of maxilla that the tooth is in is all very mobile and it could be detrimental to healing, the tooth doesn’t present immediate risk or look infected, and hopefully is truly a sinus infection and not the tooth.
I left with a Z-pack for antibiotic (originally was going to go for a stronger one but decided to hold until we really need it), and instructions to take mucous relief, and start doing a gentle netti pot and blowing my nose with my mouth open.
Splint removal: This is sooner than they like to take splints off so the segments of my maxilla (upper jaw) are more “spongy” and moveable than they typically like - so definitely no chewing at all and have to be really careful — but they are taking advantage of the softness to try and fix occlusion (underbite and right side crossbite).
Orthodontics: Started with top to bottom rubberbands on the right side and a continuous wire across the top which will hopefully bring the front tooth on the left side forward (it’s been behind my right side front tooth since the accident).
Overall review: The surgeon is still very happy with how things look, that it is level across the top is a huge win and the other parts we will just keep working on and see. Another surgery is possible on the mandible (lower jaw) if we can’t fix occlusion with orthodontics.
My bite won’t be perfect, at least for awhile. It is hard to imagine how the braces will help straighten everything out and fix the bite. I am still on the no chew diet, and will be for at least 3 more weeks, so am not sure what eating will feel like with a lot of improvement but the bite still off.
I had a bad lisp and difficulty talking with the splint on an now I have my voice back! Here’s a video I took right after the appointment.
12/19 Oral Surgeon: He was so happy with how much progress has been made in my bite since just Friday. He wasn’t concerned about the potential sinus infection or smell still happening because, as he has said many times, during surgery my sinuses filled up with mucous and blood and they will continue to liquify and drain. The z-pack antibiotic he gave me will continue to work for another 5 days so he felt ok with how things are. I looked up maxillary sinus volume after the appointment and was shocked that they hold 10 ml! He did say he thinks it is possible to make my bite perfect and reiterated the likelihood of removing at least one tooth and possibility of another surgery. As he describes it: My maxilla was put in the right plane in space (in relation to my skull is how I picture this), and my mandible is not in the right plane in space so naturally my bite will still be off but we don’t know yet by how much or if it will cause issues.
12/19 Orthodontist: She wasn’t as happy as the Oral Surgeon but still said it was looking good and she did see progress. She added another top to bottom rubber band, this time on the left side of my mouth and coming from the suspect tooth which worried me. We will only use a medium band for this side and watch it closely.
Next steps: Continue weekly appts with both Drs: 12/27, 1/3
Eye
I had a second opinion 12/14 that I moved cause it was in Albuquerque and just felt like too much. The second opinion is now 1/4 and I’ll see my original eye surgeon 1/23.
My right lower eyelid is still very droopy looking to me, and you can see a lot of white underneath my iris as well as the inside of my lower eyelid. So, to me, it looks about the same as pre-eye surgery.
There hasn’t been an improvement in dryness and my vision is even worse than before jaw surgery. I think swelling is playing a role in that and maybe also trauma response. It is hard to say because facial swelling has improved significantly, but vision has not. I’m also starting to notice that my pupils do not dilate at the same rate. See here.
Arm
I had a follow up at UNM scheduled for 12/22 and I decided to cancel this and try to get in with a Taos Orthopedic Dr that I’ve heard great things about. It would be wonderful to have someone in town instead of making the ABQ trip. UNM has also been difficult to navigate and I’ve been unimpressed with my quality of care (I know this is not intentional or anyone’s fault exactly).
Weekly appointments in Taos
Back seeing providers this week after several weeks off, it’s hard to have to take a break and then have only a week before holidays and more time without seeing my people. My self consciousness and discomfort with the smell and drainage from my nose makes it hard to be comfortable and relax in these appointments 😔
Starting back with PT finally this week which feels funny because I'm not in a place to exercise much quite yet, though hope to start slowing soon. I am hoping to get a plan for ski season conditioning and see what else she thinks is needed for my rehab.
General updates and happenings:
My daily routine has sure expanded again with post-surgery needs and mouth care. I was back to having a lot of pokey wires in my mouth so lots of wax application which turned into rubber band application after splint removal on 12/15, med tracking and taking, tracking my nutrition and water intake, monitoring my weight, cleaning and caring for my hip incision, mouth rinse after eating, on top of all the eye stuff I was already doing.
I feel like Pig Pen from Peanuts, with a cloud of stink following me everywhere 😂🫣 and as I am able to be out in the world more, this is sure holding me back from wanting to be. This, combined with the regular but random drip from my nose, are sure affecting my self-confidence. I recognize that the smell is stronger for me than anyone else, and I do know it will pass.
It was hard to need pain meds and also want my driving independence back, but at the same time not feeling ready to go places. When I finally stopped taking opiates, I had the realization that I still am not comfortable driving at night due to my eyes and it is hard with it getting dark so early. There’s a lot of holiday activities going on in town and I yearn for more community involvement but when I really listen to what I need, it isn’t to push myself to go out, it is to stay in.
It is ok for me to hunker down at home with our sweet animals and Patrick when he can, and lean into as much rest as possible (while navigating all the things I am still navigating and taking care of every day!).
I’m in another period of realization that - holy shit this is still my life, and the end of this “phase” is nowhere in sight. Holidays are hard in general, especially when important people are no longer with us, as is the end of the year and period of reflection that comes with it. I also think that I was so looking forward to having this surgery behind me and not sure what was ahead, but instead of a period of calm after a storm it is just more storm… I am burnt out and exhausted.
We found out this week that a dear friend passed away 💔 It has been a difficult week!
Eating - I remain on the no chew diet for at least 3 more weeks. I have been monitoring my nutrition and caloric intake and haven’t lost weight so that’s very positive.
We’ve had a few more food deliveries from friends (thank you!) and are trying our best to make fun food to eat. We’ve made several yummy soups and curries and on 12/9 I ate a whole box of Mac and Cheese, so I’m back on my bullshit haha I’ve since eaten entire boxes to myself several times, even experimenting with adding veggies and green chile. YUM. Also made a key lime pie without the crust 😊
As I look for ideas of recipes online, I am finding a lot of “soft food diet” lists but what they list are mostly not appealing and out of touch with my personal experience. In addition to writing a book about my experience, I am now daydreaming about a soft food diet cookbook in my future!
Lawsuit - we’ve had and will continue to have lots of work to do and long meetings in prep for depositions mid January. It is intense and time consuming and hard on my heart! More will be written about this when I can...
I am so grateful to have providers who brainstorm with me about tools to help me stay grounded, in my center, and with a calm nervous system during times of stress and especially in the middle of deposition.
Social Security/Disability - haven’t heard back from the person I sent my stuff to! Need to follow up but so far have had too much else on my plate and not enough energy to do so.
Insurance - I spoke to the person at BCBS NM who was assigned to help me with my dental related claims, and she is working on getting them processed through medical as accident-related. I’m hopeful I will get some money back! I only have this help because my cousin knows the BCBS NM CMO, which I am very lucky to have and thankful for, and at the same time it hurts my heart to imagine what people without connections have to deal with.
