Harware Removal & rEVISON MMA
It has been a nice long break since I’ve written a new post here. To be honest, I have needed it. During the month of April alone, I think we had something like eight doctor appointments, including hardware removal surgery.
We traveled to LA to visit with LACOMS (LA Center for Oral and Maxillofacial Surgery), we had pre and post operative appointments and check-ins with the sleep doc. Trent also had some new establishing appointments with a Primary Care Physician and is working on some gut issues. That is a whole other conversation that we will dive into. But, phew! It’s just been a lot. I’ve also recently had some shifts in my workplace, taking on additional roles and working well outside the limits of a 40hr/work week. All in all, the stress of all of that compounded with helping Trent through another surgery has just been brutal. We both needed a break and some time to ourselves.
I have a lot of updates to cover so let’s dive right in.
LA was great. We really enjoyed and felt a high level of care at LACOMS. The staff and their surgeons are kind, informative, thorough and realistic. We went there because we have read about two world renowned surgeons who are the only two people in the world (per our research) that will be the best choice to complete Trent’s revision MMA. One at LACOMS and one located in the Bay Area.
We have not walked into this choice lightly. It’s a huge financial undertaking as both surgeons are under the umbrella of “concierge healthcare,” meaning that they do not contract with insurance. It provides these practitioners more freedom as they do not have to answer to approvals and denials by insurance companies. However, it comes with a very frightening price tag that is the sole responsibility of the patient. It has been 7 years and we have done all of our research. We have spoken to people through groups online, across the world. The two surgeons we are considering are the two very best. This is why we are willing to do what it takes to have one of them complete this surgery. It has also come to our attention that Trent’s original MMA surgery for Obstructive Sleep Apnea was not done with the correct or expected execution. His jaws were rotated in the wrong direction and his jaws were not moved forward enough. We suspect that this is why he became three times worse in severity following that surgery. This is simultaneously enraging and encouraging.
It is unfathomable to us that we are in a position where we have to redo this surgery. When we sit in silence sometimes, one of us will suddenly look up and say, “I can’t believe we’re doing MMA again.” It’s such a mindf$ck, really. However, knowing that when executed correctly, MMA should yield positive results in some way, makes us feel a bit recharged and hopeful. We feel validated in knowing that if done right, Trent may finally see at least some benefit that gets his Sleep Apnea to a place of being treatable. This is why we are so steadfast in this decision. We truly feel that per all of our discussions, questions, and research- that this is our last chance to try and treat this disease.
We also recognize that there is a lot of unknown on the other side. It’s been 32 years and Trent’s brain has suffered from hypoxia (lack of oxygen) nightly for the entirety of his lifetime. What does that mean? We’re not entirely sure. It could mean that even with a 0 AHI, he still has residual symptoms. There is also the consideration of RDI (respiratory disturbance index). RDI is often harder to pinpoint than AHI and is much more complex as it encompasses general disturbances, including arousals. Arousals, in turn, affect your sleep quality. Sleep quality affects your daytime symptoms. This is purely opinion at this point, but I firmly believe you can have a within “normal” range AHI and still have severe symptoms based on RDI. It’s a thing and listening to countless patient testimonials around social media, journals and podcasts has shown me I’m onto something.
However, given all of this, we are simply happy to even have an option. We are happy that these two surgeons feel willing and ready to try revision MMA. We know for a fact, that had they not seen something they can do, they would have turned us away. This is huge. It was not so long ago that Trent was considering committing to a life term tracheotomy to try and surpass his airway and treat his OSA. We are not looking to “cure” his sleep apnea. We know far too much at this point. This disease is SO complicated, it is so individual and it is so multi-layered. Trent does still have the Inspire stimulator. We hope that, with the revision of MMA surgery, he can at the very least use the stimulator to bring down whatever his AHI is following the procedure. Then we can work with our new team to find some strategies for brain recovery and symptom management. We do not believe we will get out of this symptom free due to the likely long term effects of this disease at this time.
Both of these surgeons cost tens of thousands of dollars to do the revision MMA surgery. We’ve started a GoFundMe to try and offset some of the cost for ourselves. If anyone reading has donated, please know how grateful we are to you and how big of a difference this will make in our lives. Your contribution to this is a contribution to us getting our life back! We are eternally grateful. Hope is such a scary thing, but man does it feel good to have some semblance of hope right now.
All of that being said, Trent had the surgery to remove the original hardware from the original MMA surgery (2020) on April 28, 2023. They removed 30 screws and 4 plates from his face. It was very intense and he was in a lot of pain for a few weeks. He did recover reasonably well, all things considered. We are just happy it’s over. Given how many times I watch them take him away for surgery, you’d think this gets easier. It’s actually quite the opposite at this point. It gets truly harder and harder every time I stand and watch them wheel him through those damn doors. This time, I could hardly keep myself from crying just entering PREOP! I was a mess. This was one step we needed to complete to get closer to the revision surgery and I’m grateful that it’s over. I’m also truly glad we did decide to do the hardware removal separate from revision MMA. We did have the option to do them in one surgery and I think that would have been a mistake. When Trent awoke from hardware removal, he was as swollen as he was on day 2 of MMA surgery back in 2020. He looked bad. I could tell they got in there and yanked and pulled and manhandled my guy’s face to get all of those 30 screws out of the bone that had grown in over the past 3 years.
Trent is recovering and doing his best right now. He is still using the stimulator with diligence every night and eating a healthy diet. He walks when he can and gets daily sunlight. He does not feel well, by any means and has had quite a few crash days where he can’t do anything but rest. We are sort of in a mode of survival as we prepare for the revision surgery. Right now, we are scheduled for the first week of September. We are continuing to fundraise until that point! He has also had some relatively “okay” days lately too. When that happens, we take notes and it drives us towards this feeling that we have absolutely made the right choice. I think that revision MMA is going to give us a chance for treatment and some level of stability and we honestly cannot wait.
The road ahead is a steep climb and a very treacherous one. Trent and I are ready and preparing to face it like we do everything, together.
Talk soon,
Sleepily Ever After