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A Last-Ditch Attempt - Ideas/Suggestions - adinbied - 05-10-2018
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!
RE: A Last-Ditch Attempt - Ideas/Suggestions - Walla Walla - 05-10-2018
If you post a current sleepyhead chart that will probably help more than anything else.
RE: A Last-Ditch Attempt - Ideas/Suggestions - OpalRose - 05-10-2018
adinbied,
Welcome to Apnea Board!
We may be able to help if you post some data from #SleepyHead. Follow the links in my signature line. This will explain how to organize graphs. Use the Attachment feature to post a couple days from the daily page.
RE: A Last-Ditch Attempt - Ideas/Suggestions - Sleeprider - 05-10-2018
Well you have done your part to support the ENT and other doctors. You have some kind of Philips BiPAP so it can produce useful data, let's look at it. Free software at #Sleepyhead, and instructions for posting charts are in my signature. Believe it or not, I suspect your problems are a combination of getting comfortable therapy settings, and something no one else has suggested, a soft cervical collar to keep your airway aligned. It's a lot easier than surgery and you'd be amazed what forum members have accomplished with this combination. I don't think your problems are insurmountable and we might come up with some ideas that are out of the box from the specialists. Sounds like you've been through hell and back. Welcome to the forum.
RE: A Last-Ditch Attempt - Ideas/Suggestions - adinbied - 05-10-2018
Hi everyone,
Thanks for your replies. As you can see from the Sleepyhead data, the apnea seems to be treatable with a BiPAP, but no matter what combination of pressures/masks/settings I've tried over the last few years, I somehow always manage to tear it off in the night.
RE: A Last-Ditch Attempt - Ideas/Suggestions - Sleeprider - 05-10-2018
Have you ever tried more pressure support? Your current therapy is using an auto BiPAP in fixed mode at 12/8 pressure. This seems to work well except for your rather poor tidal volume, which might be more appropriate for a very small person, female or Asian individual. Have you ever tried increasing IPAP or pressure support in order to increase ventilation? Also, that 45 minute ramp is really long. Maybe cut it back to 20 minutes?
Your AHI is fine, no problem with leaks and all aspects of the therapy look good What do you think causes you to take of the mask? This sounds more like a behavior modification problem than a therapy problem.
RE: A Last-Ditch Attempt - Ideas/Suggestions - Sleeprider - 05-10-2018
A second thought...if you zoom into the flow rate graph at a 2-minute or less period, we can see what your breathing wave-form look like. It's possible there is something there that might explain your discomfort.
RE: A Last-Ditch Attempt - Ideas/Suggestions - srlevine1 - 05-10-2018
Has anyone suggested an ASV to fine tune the variables?
RE: A Last-Ditch Attempt - Ideas/Suggestions - jaswilliams - 05-10-2018
(05-10-2018, 08:44 PM)srlevine1 Wrote: Has anyone suggested an ASV to fine tune the variables?
Looking at my Resmed ASV I have very few variables to tune and looking at the graphs provided I would think an ASV is wholly not required
RE: A Last-Ditch Attempt - Ideas/Suggestions - Sleep2Snore - 05-11-2018
Last ditch attempt!!! NO, keep on trying and if you download sleepyhead and post some data we might be able to help.
NEVER give up, there is always a way to get better results, better numbers and best of all, feeling better at the end of a good fight.
Try, try and try again until you win the fight. I had a bit of a fight, mostly with masks and telling the doctors I needed more pressure, but that was many moons ago and there was no forums then, so you will know how long ago it was.
I made it in the end, took a year, I wish there had been forums like this back then.
Keep trying and when you crack it you will look back like I did and wonder what all the fuss was about and when you remember how you used to feel you might wonder how you got through feeling like crap every day.
Gee, thinking back at how I was! EEK!
I see you have posted one chart already, well done and a smack on the wrists to me for jumping ahead!