Sleep Apnea Surgery Success: A Father-Son Story

After struggling with CPAP treatment, Dr. Michael Mathews opted for surgery to try to correct his severe sleep apnea. He and his teenage son, who had mild sleep apnea, both underwent the procedure—and Dr. Mathews says it has essentially cured his breathing problem, but with a “downside”: persistent numbness in his chin and lower lip.

I guess I always should have known that I had sleep apnea. My dad had sleep apnea, and he had gotten a CPAP machine which made a big difference in his life. But I think we often want to put our head in the sand and ignore some of these things, so I didn’t get tested for quite some time.

My son was going to have braces, and I had some issues with my teeth, so I agreed to go with him to the orthodontist. We happened to go to an orthodontist that did a pretty thorough job, not just looking at the teeth, but doing a full head scan. They started asking me, “Do you feel tired in the morning? Do you snore?” They had noticed a very narrow air passage. When they scanned my son, they noticed the same thing, and they recommended that we go get a sleep study.

We went in, and they had a couple of nice rooms in the office that looked like hotel rooms. They hooked us up to all the wires and told us to go ahead and get a good night’s sleep, which is clearly impossible! They said that for adults they count the number of “events” you have during the night. If it’s less than 15, it’s considered mild apnea; 15 to 30 is moderate; above 30 is severe. They mentioned that for adults they offered a split study, meaning that if it was clear that I had sleep apnea during the first half of the night then they would introduce a CPAP machine to begin to dial in the settings rather than having to come back for a second appointment to do that.  For children (like my son) they would just count the “events” over the entire study.

I was asleep for maybe an hour or two, and then they brought in the CPAP machine, hooked me up, and later brought in a different machine. In the morning the doctor told me, “Thirty and above is considered severe—and you had 96 episodes per hour.”

They tried me on the CPAP machine; that wasn’t quite doing it. Then they went to a BiPAP machine. A CPAP machine puts the pressure on, then releases the pressure. The BiPAP always has constant pressure—it just has two different amounts of pressure, more and less, but the pressure is always there.

I tried sleeping with the  BiPAP, which had a cell card in it constantly sending data to the doctor’s office, for about 6 months. I went in a couple of times to tweak things, including a second sleep study. As far as my sleep doctor was concerned, based on their numbers, it looked like it was working—but I wasn’t getting any better sleep. I had trouble dealing with the mask. I wanted to make sure I gave it plenty of time to get used to it. We tried different masks, different pieces on the mask, but I never felt like I was getting better sleep. I never felt comfortable.

My son did also have sleep apnea; his was considered moderate. One of the options was to have his tonsils out, so we did that. A second sleep study showed that it made minor differences but not significant. The orthodontist had recommended a maxillofacial surgeon. My son and I both went and talked to the surgeon.

The surgeon told us that the maxillomandibular advancement procedure (MMA surgery) involves extending the lower jaw 13 millimeters and the upper jaw six millimeters, which opens the airway. In about 80 percent of cases, they see a two-step drop, from severe down to mild, and in 90 percent they see at least a one-step drop. For me, he recommended also moving the attachment of the tongue from the inside of the chin to the outside, pulling the tongue forward and further opening the airway.

My son struggled with the decision, but he had watched me have issues with the BiPAP machine. He didn’t want to have a CPAP for the rest of his life. The surgeon had also talked about how sleep apnea affects life expectancy, that you’re just not getting enough oxygen and putting more pressure on your heart. We ultimately decided to both have the surgery.

My son went first. … I helped him through the first four or five weeks, and then I had mine. When you’re 16, recovery is six weeks; when you’re 52, it’s eight.

The surgery is kind of amazing for what they do. They open up your jaw, split it, move it out, and do your upper jaw. The cuts are all internal to your mouth, which feels weird, but from the outside you can’t see anything. There are literally two little incisions on each side of your face where they put some screws in. Otherwise, you’ve had this major surgery, but you can’t see it. We went for a follow-up the next day, and the surgeon rescanned us. It literally had doubled the size of the airway.

Immediately, I could tell a difference. Breathing was a whole different experience. When you’ve lived with a restricted airway, you don’t really know any different. Then, literally right after surgery, you take a breath in, and it feels like you’re breathing through a fire hose.

The day after surgery is not a bad day, but that third or fourth day things start to get rough. It’s bad for about three weeks, then you start getting better. We couldn’t chew anything for six to eight weeks.

We had gotten the surgeries at the end of summer. In December, we went for the follow-up sleep study. That was probably the most nervous we’d been: did it make a difference? We knew we could breathe better, but did we cure the sleep apnea? I figured if I went from 96 down to 30, that would be significant.

The next morning the doctor came in and said, “Your number was 3.5, and your son’s was 4. Anything less than 5 is considered normal. You no longer have sleep apnea.” That was a pretty incredible feeling.

I feel really good that my son is not going to have to deal with this for the rest of his life. I’ve probably had it since I was his age and just never knew it. Unfortunately, I don’t feel like I get better sleep after the surgery, but I know that I’m breathing better, getting more oxygen, and I’ve probably added a few years to my life—which I’m extremely grateful for. I also no longer snore, which is great for my wife.

I still have a lot of stress in my life. I guarantee that I’m healthier, but I don’t feel like I’m sleeping better. I had lived 50 years with sleep apnea and gotten used to that level of oxygen. I certainly hope things are different for my son. Having this fixed when he’s 16 rather than 50 will hopefully extend his life significantly.

There are some downsides. I still have some numbness. When they move the jaw out, they stretch some nerves. They tell you that you could have numb spots. Mine seem to be fairly permanent—my lower lip and front chin area are numb—but I’ve gotten used to it. It’s no longer an issue. My son doesn’t have any numbness because he was younger.

My recommendation is to get people tested earlier. You have it whether you test for it or not. I’m a PhD scientist, and still, my whole life I suspected I had some issues and never got it tested because I didn’t want to know—which is a pretty silly thing to do. I didn’t feel like I was struggling to breathe, but I knew I didn’t have the energy I wished I had.

There’s no reason I shouldn’t have gone in earlier. My father was diagnosed 20 years ago. I lived with this way longer than I needed to. Maybe I wouldn’t have gotten the surgery back then, I don’t know, but I certainly wish I had tried to deal with it earlier.

Getting knowledge out there about sleep apnea is important. It’s not the end of the world, but you’re dealing with it whether you know it or not. Knowing is better than not knowing. … There are lots of options—there’s not just the surgery or just the CPAP mask. There are other things that can be done.

Even though I wish I had a more positive “this changed my life” story, I definitely feel like it was worthwhile. I wish I had looked into it sooner. If you’re feeling tired or have any of the signs of sleep apnea, go get it checked out. A sleep study isn’t fun, but there’s no pain involved. They hook you up to wires and watch you sleep, and they can tell you if there’s an issue—and there are a lot of treatment options.