05-10-2018, 10:39 AM
A Last-Ditch Attempt - Ideas/Suggestions
Hi all,
So this is going to be a long post, sorry about that. I am a 16 year old male who has been struggling with severe obstructive sleep apnea my entire life. Over the course of the last 4 years, I have had 9 sleep studies, 3 surgeries, 2 CPAP Machines, 4 Masks, seen 5 sleep specialists, and I am still having an untreated AHI of 70.8. At this point, everyone is stumped as to what's going on/where to go next, so I figured I might as well crowdsource some info and see if anyone had any ideas.
History:
Both of my parents have OSA, my dad has severe and my mom has mild, both are treated with a CPAP machine. In 2014, I underwent a diagnostic sleep study with the following results: Al 2, AHI 20, Supine 53%, Supine AHI 21, Non-Supine AHI 21, REM AHI 14, ODI3 11, LSAT 86%, C02 >50mmHg for 11%, Arl 31, RArl 14, N3 29%, REM 23%. Mild-moderate fragmentation. A few months later, I then had a sleep endoscopy, partial midline glossectomy, partial lingual tonsillectomy, and epiglottopexy. The sleep endoscopy showed inferior turbinate hypertrophy, no obstructed adenoids, mild VP cone collapse, no PT collapse, BOT partial collapse, retroflexed epiglottis, no arytenoid collapse. A follow-up diagnostic sleep study had these results: Al 2, AHI 15, Supine 23%, Supine AHI 14, Non-Supine AHI 15, REM AHI 12, ODI3 9, LSAT 91%, C02 >50mmHg for 28%, Arl 20, RArl 9, N3 28%, REM 19%. Moderate-severe fragmentation. Shortly after, I started using a ResMed AirSense 10 Auto APAP 5-15cm with improved daytime alertness. Over the next year, though I kept pulling the mask off shortly after I fell asleep, to the point of reaching >4h/nt on 27% of nights. By this point, it was clear that what we were trying wasn't working, so we started seeing a new sleep specialist. Over the next 6 months, I had 3 BiPAP titration studies, and switched to the Philips Respironics Dreamstation machine. The optimal pressures from the studies ranged from 16/10 to 20/13 cmH2O. However, I kept tearing the mask off about 1-3 hours into the night, each and every day. Upon looking at the SD Card data in Sleepyhead and consulting with the sleep doc, we noticed that each time I tore the mask off, an apnea/hypopnea event would occur seconds before. Despite another year of troubleshooting, trying different masks, pressures, titration studies, etc, nothing was working. After more consultation, surgical options were brought up and we met with another sleep specialist and surgeon. After a CT scan, it was noticed that my airway was only 6mm in diameter, due to the way my face was structured. Because of this, a maxillomandibular advancement was suggested, and a few months later I underwent a maxillomandibular advancement surgery (Lefort I Osteotomy and a Bilateral Sagittal Split Osteotomy), which brought my face forward 10mm. Initially, I seemed more awake and less tired, however once school started back up and I was only getting 5 hrs of sleep per night (Damn American school system), I was once again tired 24/7, falling asleep randomly throughout the day, having cognitive/memory lapses, headaches, dizziness (the usual sleep deprivation stuff). After a few more months of this, another diagnostic sleep study was performed, with the following results: Al 8, AHI 50, Supine 32%, Supine AHI 56, Non-Supine AHI 47, REM AHI 50, ODI3 5, LSAT 89%, Arl 21, RArl 21, N3 15%, REM 19%. Severe fragmentation. High arousal-based hypopneas and few desaturation based hypopneas. After a few more BiPAP titration studies, still nothing was working. We were then referred to our second sleep doc's mentor, who might shed some light on the issue. He noticed that my soft palate was a little loose, and that my nasal passage was smaller than usual. With this information and more appointments, it was decided that another surgery might be necessary. A few more months later, I underwent a nasal turbinate reduction, an expansion pharyngoplasty, and another sleep endoscopy. Unfortunately, I was still constantly feeling tired and the diagnostic sleep study a few months after that surgery showed an AHI of 70.8. This brings me to about 6 months ago, and more meetings with doctors. We looked at the Inspire hypoglossal nerve stimulator, but due to it not being FDA approved in pediatrics, we would have to pay 100% of the cost out of pocket, which neither I nor my family can afford. And even then, the sleep endoscopy didn't show alot of tongue-based obstruction, so it might not even do anything. Pretty much everyone is stumped, the midline glossectomy, maxillomandibular advancement, nasal turbinate reduction, and expansion pharyngoplasty should have helped, but they didn't. BMI isn't an issue (22.9), and the general consensus is: ¯\_(ツ)_/¯ .
Over the course of all of this, I've learned alot about sleep medicine and have become fascinated with trying to figure out what is going on. I'm enough of a geek that I have copies of all of my raw sleep study data (Converted to EDF for ease of use), DICOM data, CPAP SD Card data, Visit Summaries, etc. Hell, I ended up writing my Honors Health Final on sleep apnea. So, if anyone has an idea and wants to request some more data that I didn't provide here, feel free to PM me and I'll see what I can do.
Anyways, thanks for reading through all of this and hoping someone might have a fresh idea.
Thanks!
So this is going to be a long post, sorry about that. I am a 16 year old male who has been struggling with severe obstructive sleep apnea my entire life. Over the course of the last 4 years, I have had 9 sleep studies, 3 surgeries, 2 CPAP Machines, 4 Masks, seen 5 sleep specialists, and I am still having an untreated AHI of 70.8. At this point, everyone is stumped as to what's going on/where to go next, so I figured I might as well crowdsource some info and see if anyone had any ideas.
History:
Both of my parents have OSA, my dad has severe and my mom has mild, both are treated with a CPAP machine. In 2014, I underwent a diagnostic sleep study with the following results: Al 2, AHI 20, Supine 53%, Supine AHI 21, Non-Supine AHI 21, REM AHI 14, ODI3 11, LSAT 86%, C02 >50mmHg for 11%, Arl 31, RArl 14, N3 29%, REM 23%. Mild-moderate fragmentation. A few months later, I then had a sleep endoscopy, partial midline glossectomy, partial lingual tonsillectomy, and epiglottopexy. The sleep endoscopy showed inferior turbinate hypertrophy, no obstructed adenoids, mild VP cone collapse, no PT collapse, BOT partial collapse, retroflexed epiglottis, no arytenoid collapse. A follow-up diagnostic sleep study had these results: Al 2, AHI 15, Supine 23%, Supine AHI 14, Non-Supine AHI 15, REM AHI 12, ODI3 9, LSAT 91%, C02 >50mmHg for 28%, Arl 20, RArl 9, N3 28%, REM 19%. Moderate-severe fragmentation. Shortly after, I started using a ResMed AirSense 10 Auto APAP 5-15cm with improved daytime alertness. Over the next year, though I kept pulling the mask off shortly after I fell asleep, to the point of reaching >4h/nt on 27% of nights. By this point, it was clear that what we were trying wasn't working, so we started seeing a new sleep specialist. Over the next 6 months, I had 3 BiPAP titration studies, and switched to the Philips Respironics Dreamstation machine. The optimal pressures from the studies ranged from 16/10 to 20/13 cmH2O. However, I kept tearing the mask off about 1-3 hours into the night, each and every day. Upon looking at the SD Card data in Sleepyhead and consulting with the sleep doc, we noticed that each time I tore the mask off, an apnea/hypopnea event would occur seconds before. Despite another year of troubleshooting, trying different masks, pressures, titration studies, etc, nothing was working. After more consultation, surgical options were brought up and we met with another sleep specialist and surgeon. After a CT scan, it was noticed that my airway was only 6mm in diameter, due to the way my face was structured. Because of this, a maxillomandibular advancement was suggested, and a few months later I underwent a maxillomandibular advancement surgery (Lefort I Osteotomy and a Bilateral Sagittal Split Osteotomy), which brought my face forward 10mm. Initially, I seemed more awake and less tired, however once school started back up and I was only getting 5 hrs of sleep per night (Damn American school system), I was once again tired 24/7, falling asleep randomly throughout the day, having cognitive/memory lapses, headaches, dizziness (the usual sleep deprivation stuff). After a few more months of this, another diagnostic sleep study was performed, with the following results: Al 8, AHI 50, Supine 32%, Supine AHI 56, Non-Supine AHI 47, REM AHI 50, ODI3 5, LSAT 89%, Arl 21, RArl 21, N3 15%, REM 19%. Severe fragmentation. High arousal-based hypopneas and few desaturation based hypopneas. After a few more BiPAP titration studies, still nothing was working. We were then referred to our second sleep doc's mentor, who might shed some light on the issue. He noticed that my soft palate was a little loose, and that my nasal passage was smaller than usual. With this information and more appointments, it was decided that another surgery might be necessary. A few more months later, I underwent a nasal turbinate reduction, an expansion pharyngoplasty, and another sleep endoscopy. Unfortunately, I was still constantly feeling tired and the diagnostic sleep study a few months after that surgery showed an AHI of 70.8. This brings me to about 6 months ago, and more meetings with doctors. We looked at the Inspire hypoglossal nerve stimulator, but due to it not being FDA approved in pediatrics, we would have to pay 100% of the cost out of pocket, which neither I nor my family can afford. And even then, the sleep endoscopy didn't show alot of tongue-based obstruction, so it might not even do anything. Pretty much everyone is stumped, the midline glossectomy, maxillomandibular advancement, nasal turbinate reduction, and expansion pharyngoplasty should have helped, but they didn't. BMI isn't an issue (22.9), and the general consensus is: ¯\_(ツ)_/¯ .
Over the course of all of this, I've learned alot about sleep medicine and have become fascinated with trying to figure out what is going on. I'm enough of a geek that I have copies of all of my raw sleep study data (Converted to EDF for ease of use), DICOM data, CPAP SD Card data, Visit Summaries, etc. Hell, I ended up writing my Honors Health Final on sleep apnea. So, if anyone has an idea and wants to request some more data that I didn't provide here, feel free to PM me and I'll see what I can do.
Anyways, thanks for reading through all of this and hoping someone might have a fresh idea.
Thanks!
