Let’s Talk Treatments: trial and mostly error (pt1)
Okay, let’s begin the talk about our treatment background. It’s really top of mind for Trent and I right now since the Inspire hypoglossal nerve stimulator is not panning out how we hoped at all.
If you’ve been following along, you noticed that recently I shared a summary Reel of Trent’s 2020 surgery- maxillomandibular advancement AKA double jaw surgery. Before all that though, back in 2018 and before we got a formal diagnosis of Complex Sleep Apnea, we went and saw an ENT with the intention of getting Trent’s deviated septum fixed. At the time, we had just gotten married and had our honeymoon. During our Disneymoon in October of 2018, we had already been having health problems for some time. Trent spent a lot of time on our trip closing his eyes on rides and holding his heads in his hands because he was so dizzy. He already gets bad motion sickness, but what we didn’t know was that the undiagnosed sleep apnea was amplifying it and making him feel so much worse. When we saw the ENT, we were told that Trent also had large tonsils and a big uvula and soft palate. We were also told, based on what Trent looks like- young, fit, not a large neck circumference- that there was “no way he has sleep apnea!” However, the ENT at the time did offer to try a surgery called a UPP (U-triple P)-uvulopalatopharyngoplasty. For the record, I still can’t say that word! Basically, they removed his tonsils, adenoids, reduced the size of his turbinates (in the nose), they took out his uvula (the dangly guy in the back of your throat), gave him a septoplasty and shaved down his soft palate with the intention of making room in the airway. We’ve had a lot of surgery in our days, but pain wise Trent says this one was the worst.
Side Bar: Trent throws up when he’s put under anesthesia. Like, rain or shine. Nausea meds or not. He pukes. It’s his thing! Nurses never believe me. I will try to tell everyone! Even if he wakes up and it’s been a while, he will still vomit- it’s just delayed. Waking up after UPPP, his mouth, nasal passages and throat were the affected areas. This led to a LOT of blood going down into his stomach and increasing the level of nausea. Me, being a concerned wife and knowing that he was only going to be able to eat liquids and blended foods for a few weeks, I suggested he drink a protein shake after surgery. Please keep in mind, at this point after waking up, he had not yet vomited from the anesthesia. He took one sip of the shake, under my direction and said it was gross. I told him I didn’t care (it was like a protein and greens thing). I kept coaxing him to drink the shake and him being a little hopped up on meds and anesthesia…well he listened. And it made him puke. Not just like your usual throw up though. He totally paid me back. He vomited blood for a solid hour or so. It was traumatizing on both sides for me and for him. To this day, I still feel so bad about that and sometimes when he feels the need to bring me back down to earth a couple notches, Trent likes to say, “remember when you me drink that protein shake after surgery?”
The UPPP did give a small boost and relief from his fatigue for about 3 weeks. We really thought that the worst was over and that this had done the trick! We hadn’t even had a sleep test or anything at this point. After those 3 weeks, he was back to severe daytime symptoms.
When we finally got him in to do a sleep test and a formal diagnosis of the Complex Sleep Apnea. We got the diagnosis and then he was put on a fancy CPAP basically- a machine called an ASV Machine. ASV stands for “adaptive servo-ventilation.” It’s different from your usual CPAP/BiPAP in that it delivers air pressure in a dynamic and responsive way, based on the patient's breathing patterns. This is why it’s used for patients with Complex Sleep Apnea, since when treatment is applied, the Central Sleep Apnea causes Trent to hold his breath against a CPAP. A CPAP/BiPAP delivers a set level of air pressure throughout the night. It basically just forces the obstruction out of the way by keeping the airway open. The ASV is responsive not only to the obstruction, forcing air into the airway, but also responds to the Central apneas, tracking when he holds his breath against the machine.
Machines are still considered to be the “gold standard” of Sleep Apnea treatments, as far as I know. It takes a lot of work, and it certainly is not easy to get used to using a PAP by any means. However, it is the most effective way to bring down your AHI and treat your Sleep Apnea, eliminate risks and finally achieve quality sleep.
Trent used the machine for 2.5 years. This is a feat in and of itself. Many patients actually get OFF machine treatment because it’s so uncomfortable and hard to sleep through the night with. It’s loud, uncomfortable, water gets trapped inside the hose sometimes and it makes this terrible noise that wakes me up as well. And it’s not exactly sexy…I tell the man often, it’s a real good thing he’s so cute!
Trent has always been so adaptable in trying treatment. He used his ASV machine right away and got used to it right away (give and take some challenge). Likely, because his body was so starved for sleep. We used it for about 2 months with what we thought were some small differences at first, but the daytime symptoms still prevailed. We checked in with our doctor, she said he needed to give it more time. We gave it more time, same symptoms. We checked in at 6 months, same symptoms.
Keep in mind that part of using a machine should include titration studies during which a patient undergoes sleep tests with the machine in order to optimize levels, investigate things like arousals, change pressure, etc. Our doctor at the time said we needed to give it more time and because we shared with her that we had purchased our first home, she said that “not everything was going badly.” She also told us we should move to Hawaii and not stress too much… So, we had no support in optimizing the machine and were basically sent on our way. At this time, we also had gone through several sleep physicians, as the turnover rate at the office covered under insurance was very high. The sleep doctor we were with at the time asked Trent if he was depressed and wanted to know, “what was keeping him from getting out of bed in the morning?” and also told him to, “hang in there!” Not really helpful in actually trying to optimize sleep treatment or investigate the root cause of his difficulty feeling well with the machine. The lack of support was incredibly jarring.
Moving forward and switching between a few more sleep doctors, we completed a couple of follow up polysomnography tests to see where his AHI was at with the ASV machine.With his pressure, he had gotten his AHI down into the mild range, around a 6-7 events of stopping breathing per hour. However, he had an arousal rate of 122 arousals. An arousal is: an uptick in brain activity during sleep, like an awakening without realizing it. It is essentially a repetition of awakening/activity in your brain and indicates disruption in your sleep. The machine was bringing down his Apnea/Hypopnea Index, but still not giving him that restful sleep required to recover and restore the body and flush the brain of toxins.
Being basically isolated and unsupported by our medical team at that time, we began to do a few things all at once. First off, I started looking for a new Primary Care Physician. We began researching other treatment options for Sleep Apnea and discovered that there were some other surgeries that exist. Lastly, we started looking around at medical institutions with high level reputations. We found a great new Primary doc (who we are no longer working with), we found surgical options and we got a referral to a reputable institution in June of 2020. More to come in PT2.
Talk soon!
Sleepily Ever After