End of ‘22 AND START OF 2023 UPDATES
Phew, last time I posted, I said it had been a while. Now, it’s been even longer. Not only have we been busy, found some new doctors, etc. But also, I work a lot and trying to post on social media is honestly a pain. It’s so time consuming- but worth it! I’ve met and connected with so many people in the sleep community who have shared kind words, interest and advice. It’s incredible and we are so grateful!
So, last time we left off, we had discussed the news that Trent will have to redo his MMA (maxillomandibular advancement aka double jaw) surgery. We discussed the private surgeon that we are consulting and his opinion that the initial MMA was “extremely deficient,” meaning that the jaws were not advanced far enough. I want to review the end of 2022 before fully moving into 2023 updates as it is important and it’s information needed for everyone to understand the full picture and treatment plan.
When we met with our Inspire sleep doctor back in December, Trent’s AHI had come down based off of an overnight, in lab sleep test he did in November. Unfortunately, during that test, he basically stayed up all night. He had about 3 hours sleep (actually not bad considering), but we left feeling like it was such a waste of time and money. Based on those few hours of sleep, Trent’s overall AHI read 13 for that duration of time. Here’s the thing about sleep apnea: your AHI fluctuates night to night and even throughout the course of the night as well. This tells me, based on what I know and not as a doctor of course- that he’s about where we started all this and he was super sick at 16 back then anyways. This is also not factoring in that he’s still at a 37 on his back, which is into the severe range. His symptoms, of course, are still severe. Per our conversation with this particular practitioner, she is of the opinion that his Sleep Apnea is “well managed.” This is based on Trent saying, “perhaps getting even higher on the remote could yield some different results.” It’s unclear as to how she has arrived at this conclusion and although I usually like to give someone the benefit of the doubt, it’s not the first time she’s made similar commentary. For example, the first time we met her, she said “the fatigue you’re (Trent) experiencing doesn’t sound like sleep apnea,” and suggested we look into some exclusionary diagnoses such as Chronic Fatigue Syndrome. This is, in my opinion, a form of medical gaslighting. I have much further to say on this, but it’s not the current topic and we will talk about it later.
This is what led us to our newest sleep doctor, who is also private and very expensive with no insurance contracting. For now, we will have to keep the original sleep doctor as not all sleep doctors are Inspire device certified. However, at present we have canceled appointments with her and do not plan to return until his remote needs further adjustment. At this time, it appears Trent’s stamina to increase his voltage has reached its capacity. He’s gone back down to 2.6V and has remained there for the past 3-4 weeks. We have completed two WatchPat1 tests at home, one with the Inspire device on and one with it off at the request of the surgeon.
Without the Inspire, Trent had an overall AHI of 19 (remember this number fluctuates) with an RDI of 30 (still severe). This lower AHI on this test might confirm my suspicion that the Inspire is actually acting as a sort of passive workout for his tongue and thus potentially helping his AHI come down by strengthening his tongue muscles. We, of course, need more info and an actual doctor to confirm this. So take that for what it is- an absolute blind ass guess made by me!
With the Inspire on, we have some interesting and potentially positive news. Overall AHI came all the way down to a 7! Mild range for sure. However, RDI (I’ll explain in a sec) was 15- same range as before. I want to do like a million WatchPat1 Tests. They’re done at home and I really feel like it’s the most accurate way to measure patterns over time. Now, these home tests don’t measure all the things that an in lab does, of course. But, I feel that for tracking with some consistency over time and in a familiar environment, you should do like a whole week of watch tests and just see how your sleep functions over time! This would never happen of course because of the way our system works and the need for insurance approval and hours of phone time to just get ONE of these tests approved. Our healthcare system really is a b$tch. We were lucky enough to get to do two of these in a row for the nice, ripe price of $250 a test. Lucky lucky! (Hear my sarcasm)?
Although Trent’s overall AHI has lowered pretty significantly, his sleep fragmentation remains unchanged and very poor. This is likely what accounts for his daytime symptoms continuing to be so severe. On that note, his daytime symptoms at this level are slightly improved from our usual. We’re grateful for this because it means he’s not spending the entire day in bed or on the couch (well sometimes) and he has been able to take advantage of some moments to study and have some minor relief. This makes our days more manageable, but it doesn’t make them good. I think that’s important to mention. The high voltage of the stimulator is rough and although that overall AHI has lowered, there is a lot that goes into achieving restful, restorative sleep. Now we get into a bit of guesswork- we’re talking about RDI which is what some doctors use to measure sleep apnea instead of AHI. We’re talking about arousals, sleep cycling, brain waves and the way these complexities affect your sleep and symptoms of sleep.
RDI stands for respiratory disturbance index. It measures the total average of all respiratory events- so apneas (stop breathing), hypopnea (trying to breathe but partial block), arousals, and other respiratory event related arousals (RERAs) each hour. Okay, so to me I’m like “duh,” on this. Sleep is complicated and shouldn’t we use a measure that encompasses all disturbances because disturbances lead to disrupted sleep?? AHI leaves a clearer distinction between severity levels, which is why it’s most widely used. However, RDI I feel should absolutely be considered far, wide and deeply! At least in our case because what we’re seeing with Trent is that while his AHI has reduced, his RDI is still high and he is still symptomatic. Alongside all of this, what are the odds of his brain and nervous system having adapted at this point to this state of being. What I mean is, he’s had this his entire life so what are the chances that his nervous system and brain don’t know what to do or how else to be? We’re getting into some muddy stuff here but I also feel like we’ve got a lot of information.
What this does tell us, is a few things-
1. It tells us that we have the opportunity to use this redo surgery to do our best to optimize his airway and figure out why he got worse after the first MMA.
2. It tells us that if we can further optimize his airway and bring down not only his AHI but (maybe most importantly) his RDI that we can perhaps get him to a place where he can actually treat this?
3. If we can master these things, perhaps he can continue strengthening his tongue not only via the stimulator but also via myofunctional therapies and strategies.
4. With all of those things in place, maybe we can turn the stimulation DOWN which may also result in less sleep fragmentation because he won’t be getting his socks rocked by 2.6 volts of electricity to the tongue every time he inhales.
5. Lastly, and eventually most importantly, we will probably need to do some things for brain/nervous system recovery. What that will or could look like, I don’t know at this point. I don’t even know what exists. But let’s begin with step 1 for now.
PS: As an aside, in my last post I mentioned a really horrible alternative that was brought up in the case that we run out of things to try. That thing is a tracheotomy. I don’t even want to honor that right now as it’s completely horrible and I can’t even believe it’s been said. A trach would bypass the whole upper airway. It’s (insert word here) up. But since I posted about it previously and cryptically, I wanted to tell you what that mystery 3rd option was.
As always, thank you so much for joining us, reaching out, reading, and rooting for us.
Lots of love,
Sleepily Ever After
