Let’s talk treatments: part 2
Let’s Talk Treatments: Part Deux:
Okay, it’s been a little bit! We’ve had some appointments and traveled back and forth. I was out of town for work. I’ve also been in a stage of processing. These days, I’ve noticed that coming back from appointments, I feel really exhausted by the thought of having to recount and recount and recount the events to everyone we know. This is not to say that Trent and I don’t sincerely appreciate the concern. The investment and support legitimately means everything. And, it’s a lot to have to recount over and over and over to friends and family when we’re in the midst of processing this all ourselves.
I think last time we talked, we left off in June 2020, right when we had gotten our referral to our first out of town doctor. I feel like it’s worth mentioning that Trent found and sought out this solution himself. Every next step we’ve taken, we have investigated ourselves. No single doctor, even the ones we have liked, has ever said, “how about a referral?” or, “Let’s try this.” or “I don’t know, let’s find someone who might.” It’s a real bitch to think back on. I saw a post today that said something about medical gaslighting and not being validated, listened to or taken seriously and it really struck a nerve with me. I’d also like to say it’s not a current thing we’re dealing with. But it actually is. It’s sort of unreal, honestly. The practice within the medical field to just say, “that’s all there is,” or, “we’ve never seen that before,” and then to just move on is rampant. People deserve better.
Trent certainly has deserved so much better these past few years. He still does.
June 2020-September 2020
So, June of 2020 we go down and meet with a self-researched maxillofacial surgeon; This is after Trent discovered that Maxillo-Mandibular Advancement surgery has been used for treatment of Obstructive Sleep Apnea. The surgeon is still on our team and I have a lot of positive things to say about him! He’s super kind and always willing to help. Again, I feel like these things are just worth mentioning. Trent gets approved and has the MMA surgery procedure in September 2020 during COVID.
It was an 8 hour surgery and the worst day and then worst weeks of my life. So stressful, so intense and a super invasive procedure. I have done some posting about this and plan to share some videos from that time as a highlight on my Instagram page. I have the hardest time going back and watching those…I was so excited. I wish we would have known what we know now. When we researched MMA surgery as an option for treating Trent’s OSA, we looked up things like:
Does MMA surgery help OSA?
What is the percentage of success from MMA surgery for OSA?
What we didn’t look up were things like:
Whether the amount of jaw advancement and rotation had to be a specific number of millimeters to even begin to optimize the airway…
Whether your other upper airway parts and tongue could be a separate issue to treat as well
Or whether your OSA could become WORSE after MMA surgery
To be fair, we haven’t heard of many people getting worse after MMA. Again, Trent seems to be the unlucky exception to every rule. He went from that 16 AHI (not changed by sleeping position) to an overall 29 AHI with a 53 AHI in a fully supinated position (flat on his back).
Everyone was stumped and the surgeon sent us to ENT to do a drug induced sleep endoscopy to stick a camera into Trent’s airway to see what the issue was. This is how we landed on the stimulator. If you’re not familiar, I’ve included much more detail on this in other posts!
Thinking back, Trent will say he thinks he knew by October (Halloween night specifically) that he still had OSA. We just didn’t know that it had actually increased in severity. We built a fort in the living room (pictured in the heading of this post), passed out candy and slept downstairs like the big kids we are! He said he awoke in the middle of the night (his jaws still wired shut and healing by the way) and felt like he had had severe apnea. He said he remembers thinking to himself…willing himself… surely I’m not still this sick. UGH. But we knew. We knew and we tried to pretend, I think. And by Christmas and the New Year…everything was the same. At our 6 month follow up and sleep test, everything was confirmed. His OSA was worse than ever, his symptoms during the day continued to prevail.
Where do you even go from there? It was honestly gut wrenching and unfathomable. I swear I think we both thought he was going to be cured. It makes me sick, it makes me SO SAD to think about. Our mental health together and individually, suffered greatly. So much devastation. So much despair. Now, it makes me extra sick to think of all that’s happened since then and just how much more we have to go.
I want to honor the updates and appointments that we’ve received and attended recently. They deserve a full post here, with time and diligence spent on explanation.
So, I’ll say this for now:
We’re working with some new people who are of the opinion that we don’t have many options left. We have two. Well, technically, we have 3, but that third option is twisted and intense and sick. We’ve found a privatized surgeon who says that Trent’s initial MMA surgery was “extremely deficient.” This means that they did not advance his jaws far enough to optimize his airway and that he will need to do it again. The first time round, this surgery is intense. Doing it again, the risk levels are significantly more. Recovery is harder. It’s all just bad. Furthermore, this surgeon is also out of network for every insurance. The patient out-of-pocket pay rate is absolutely insane. I will delve much more deeply into this next post.
If you’re new and reading out of order, I’m actually a bit out of order here as well! Go back and review my other blog posts to learn more about the Inspire stimulator that Trent currently has implanted in his body as an attempt at treatment for his OSA. This way, you will have a fully painted picture.
As always, if you are even one person reading this, thank you! Thank you for your support and for your time and for your care. And if you’re here because this somehow makes you feel less isolated in a hard thing, an illness, mental health issue, grief, depression, whatever it may be- I’m so honored and happy you’re here.
All the best,
Sleepily Ever After
