25yo w/ Severe OSA Considering Surgery

I'm not really sure if I have a specific question but I feel sort of lost, I suppose. I've only told a few of my closest friends about my condition, and I am feeling quite lost and alone at the moment. In my googling, I came across this forum and thought it might be worth posting.

I guess a little bit of my background might be necessary. About 6 or 7 years ago, my then-girlfriend noticed that I was choking while I slept. At the time I was about 160 pounds and in good health and shape for a 19 year old (I am about 5'7"); during high school, I participated actively in several sports and was in good shape but I gained some weight during undergrad but was still active and even fenced at the collegiate level. Being the daughter of a doctor, my then-girlfriend suggested that I get a sleep study done. After having a polysomnogram, they determined that I had mild sleep apnea and I started undergoing CPAP treatment with a chin strap. At the time, I was unable to keep my mask on for very long (no more than a few hours a night) and the constant explanation to people who would visit became difficult (I was in a dorm room after all). Furthermore, I didn't seem to be having any symptoms from my Sleep Apnea as I wasn't tired or fatigued, and I didn't even really notice anything adverse. So I stopped CPAP treatment and returned my machine after about 6 months. In hindsight, I should have taken this much more seriously when it was just mild. Fast forward to about a year ago.

I have a new girlfriend (who I met after I went off of the CPAP machine). She noticed my remarkably loud snoring, but seemed to have adjusted to it okay. I had mentioned that I was diagnosed with mild sleep apnea, but it never seemed to be much of an issue. Since graduating from undergrad, we have been long distance so I guess there's less opportunity for her to notice any apneic events, even if she were to notice them. I am now about 185 pounds (about 25 more than I used to be) so I am certainly heavier, but didn't give much thought to my sleep apnea, which was mild after all.

For the first year of law school, I noticed diminished energy and general fatigue, but I chalked it up to the rigors of law school. During my the winter of my second year (last November), however, I felt extremely tired all the time, and it didn't seem to be getting any better. Poor sleep has been something I've been dealing with for what seems like forever (the last time I remember having a good well-rested night was when I was a little kid, probably around 7), but the associated sleepiness and tiredness was becoming unbearable. I was falling asleep during class, and it was affecting my studies. So I thought of getting my apnea checked out again, and scheduled a consultation. After meeting with an ENT and a sleep specialist, we talked about my previous diagnosis and my difficulties sleeping and functioning. Under the assumption that my sleep apnea was still at or near the mild levels, my facial structures made me a good candidate for septoplasty and/or turbinate reduction, but she recommended that I get another polysomnogram done because it had been so long since my last one.

So I had my sleep study in February or March of this year; my RDI is 72 with oxygen desaturation around 82%, which makes me a 25 year old law student with severe sleep apnea. During the study, the nurses administering the test had to call-in a emergency room doctor because they were worried about me and he authorized a CPAP on the spot. After talking to my sleep doctor, she was very worried, and put me immediately on CPAP therapy while explaining my surgical options. This was about 7 or 8 months ago. After going to a cardiologist and running a full battery of tests (ekg, echo, respiratory tests), my doctor mentioned that septoplasty and turbinate reduction weren't even on the table any more, and that my main surgical option with my facial structure would be maxillomandibular advancement. She explained the surgery to me, and to be perfectly honest, it freaks me out. Since then, I have been on CPAP at various levels. I have a REMstar Auto M Series with C-Flex; she started me off at 12 cm H2O pressure, and it has been adjusted to 17, and most recently to 20 cm H20 pressure. My compliance is at or near 100%, with the only caveat that my doctor has suggested sleeping earlier (because I am a law student, I can't usually afford to sleep earlier than 12AM on most nights if I want to finish my work). Thankfully, my blood pressure has gone down since being on CPAP (it was is in the 150s/90s when I first went on CPAP and has been around the 120s-130s/80s since then), but my tiredness and fatigue have remained. None of these settings seemed to help as I was still incredibly tired. After several check-up meetings, I went on Provigil, which had almost no affect on me whatsoever. I feel like a waking zombie, and can't seem to get any restful sleep. I'm perpetually exhausted and it has been this way for the entire duration of my CPAP treatment. I don't know what to do.

For a while, I've been pushing it out of my mind, mainly because (in May) I needed to study for finals and then do work during the summer. This past Monday, however, I had what felt like a panic attack. I woke up not breathing (with my CPAP on) and my heart racing. The CPAP machine was abnormally loud -- probably because it was working extra hard to try to get me to breathe, and my heart felt like it was jumping out of my chest. This episode really shook me up, so I've started to consider surgical options again, and I'm not entirely sure what to do or even what to look into. I feel incredibly lost. I have an appointment with my sleep doctor on Thursday, and I've scheduled a consultation with Dr. Kasey Li in Palo Alto for Thanksgiving (I am going to the Bay area for thanksgiving to see my girlfriend).

I guess my question is this: have any of you out there had similar experiences, and if so, what steps have you undertaken? I am only 25 years old, and I am worried for my long-term health and well-being. After doing some searching, I've begun to realize that sleep apnea (and severe sleep apnea even) are very rare for someone of my age. This research also showed that severe sleep apnea increases my risks for cardiovascular disease and congenital heart failure, some times even resulting in death. Basically, I'm just scared out of my mind and I'm not sure what to think, feel, or do.

Welcome to the best place online to get the information and support you need.
I can understand why you would be so freaked out waking up that way. I would be a bit shaken up too.

The surgery is a very radical way to approach the treatment of sleep apnea in my opinion. Surgery today that is suggested for obstructive sleep apnea does not have a good record for long term results.
There are some people who have had tracheostomies and that is the way people were treated for severe sleep apnea years ago.
Surgeries do not always result in a cure for sleep apnea. At this time there is not a cure that I know. All the things that we do manage the disorder and prevent further damage caused by poor sleep.

There are advances in the science of sleep disordered breathing and new and better machines are being designed. At 25 you will certainly see a great change in the way you are treated. With time there will be better and more effective treatment. I would suggest that you talk with your sleep doctor about your experience, and see what the sleep study revealed about your sleep architecture. Depending on how your body is having the apneas, the sleep doctor may be able to get you a machine that will be more effective for your symptoms. Each person is different, and some treatments work better for some and less well for others. A different CPAP, or APAP, or Bi PAP or the Adapt SV may be needed for you to get the best sleep.

I wish you the very best sleep. I hope you can get this all worked out soon so you can think more clearly and do your schoolwork.

Karen

Like Padacheek, I immediately thought,as I read your story, that you may do way better with a Bipap or Vpap machine that can be set at higher pressures than cpap or autopap. Your "panic attack" may well have been an apnea to which the machine could not respond because the pressure was not high enough and could not get high enough on that machine.

If it were me, I would talk to my doctor about bipap, vpap before I would consider surgery.

mattyt wrote:I am only 25 years old, and I am worried for my long-term health and well-being. After doing some searching, I've begun to realize that sleep apnea (and severe sleep apnea even) are very rare for someone of my age. This research also showed that severe sleep apnea increases my risks for cardiovascular disease and congenital heart failure, some times even resulting in death. Basically, I'm just scared out of my mind and I'm not sure what to think, feel, or do.

Hi,

I don't think that OSA is a rare in younger people as you might think. Looking back, I had my first noticable issues with OSA when I was still in college. Younger people can often do better with less sleep, and they tend to go to the doctor far less often than older folks, especially young men. I would venture that OSA is simply not detected like it is with older folks. The data on truck drivers is very interesting...a high rate of truck drivers are diagnosed with OSA, mostly because they are screened for it at a much higher rate than the general population.

From what I hear, and I am certainly no expert, is that surgery has marginal results at best, and it becomes increasingly less likely to solve OSA problems in folks with worse OSA. I also hear that a large fraction of people who do have a successful surgery often end up with OSA problems again within a few years. Finally, surgery is not without risk, and the types of surgery that are used tend to be very uncomfortable to recover from.

The only surgery that I would personally consider is a trache, and I would do that if CPAP was a bigger pain in the butt for me. I suspect that if my pressure needs rise over time, I am going to need more pressure than what typical machines can provide, and that level of pressure would simply be too high. That would be the case for having the trache. Bottom line, keep asking questions, and make sure that you get a second and a third opinion before making a decision.

-john-

Hawthorne has an excellent suggestion. At 25, I'd exhaust the xPAP options before considering surgery. You're still young enough to try a few other things before going under the knife. Also, at 25, its very likely that by the time you're 40, there will be other better and more effective treatments for OSA than exist now. So if you can get xPAP to work a bit better, might be worth to hang in there. Good luck, and keep us informed.

If you're feeling lost and uncertain, this Forum is one of the best places in the world to come.

xPAP therapy has undergone a revolution since you had your first machine. And to be honest, I would start with an xPAP (CPAP, BiPAP, or APAP) of the modern generation, and find a good mask before ever I considered surgery. If you think an xPAP gets in the way, major surgery can literally be a pain. (I had cancer surgery in April of 2008 and was diagnosed with apnea in September of 2008.)

You'll find people here who know how to help you navigate the channels of getting the best machine for your therapy, reading your charts, and everything else.

Understand, that I'm not saying the doctors you have seen aren't good. It's just that when you consult a surgeon, that surgeon is likely to think of a surgical solution for your issues. It's just the way their minds are wired.

I understand the fear you are experiencing. I went through it when I got the Big C diagnosis. Over and over and over, I kept crying, "How can my body betray me like this?"

Having just lost my Mom to the complications of what I believe was untreated apnea, I understand, too, your fear of the comorbidities of sleep apnea. You are right to fear them -- but unlike my Mom, you know you have apnea, and you are taking steps to handle it. That, and the fact that you are being diagnosed EARLY is a Good Thing.

You're an intelligent person, willing to work hard to analyze your situation, and I believe fully that you can manage your health.

Ask whatever questions occur to you. There's bound to be someone in the multi-talented bunch of people in this Forum who can answer you.

Welcome. We're sorry you needed to find us... but glad you did.

My heart goes out to you. Before you consider sugery you must research research then more research. The best MMA surgeons eem to be in CA or Atlanta
You can go to either Palo Alto California (near San Fran) to see Drs. NP, Dr R, Dr. KL or you can go to Dr. Jeffrey P. in Atlanta. Those are the most well known authorities on MMA.
- You need to look for an Oral and Maxilofacial Surgeon (this is a branch of dentistry because it involves the mouth). You need to find someone who does a lot of MMAs for sleep apnea patients each year.

Good luck.

I'm not advocating surgery but first try to exhaust all CPAP therapy....... but being your too young and the medical complications you have are severe I would direct to here:
http://www.sleepnet.com/noncpap24/noncpap24.html

This forum has a wealth of information study and research current and past forums.

Here's a link to all forums:
http://www.sleepnet.com/apnea/apneainf.html

Thanks everyone for the encouragement and the information. I didn't expect such a quick response. I am, as you might have guessed, an information fiend, and would like to gather as much information as possible.

@ Jweeks: You're probably right about the incidence rates. There certainly seems to be a vast amount of underreporting and/or misdiagnosis. Perhaps it's not that it's "rare" for people of my age group, as much as there isn't as many documented cases in my age group. As for the specific surgeries, traches, septoplasty, tongue advancements, radiofrequency, and other surgical options that are suitable for mild to moderate sleep apnea, would have little to any affect given the severity of my apnea. I was told that my main surgical option would be for an MMA, and from what I've gathered, I've seen studies for MMA with reported success rates in the 90%'s (http://www.joms.org/article/S0278-2391( ... 5/abstract) at least in terms of quality of life post-op. And at least in the short term success rates (6-9 months), there is promising results from MMA (http://www.ncbi.nlm.nih.gov/pubmed/1186 ... t=Abstract). Apparently, there isn't enough empirical research or data on the long-term effects from what little research I've done.

@ Padacheek, Hawthorne, and GaryG: I realize that new medical advancements may be forthcoming, but I'm currently very afraid of doing nothing. At the age of 19, I probably could have taken more steps to prevent the position that I'm currently in. In this regard, I am definitely going to be asking my sleep doctor on Thursday about the other xPAP options and whether they may be worth considering. My only reluctance with the xPAP treatments is that they seem to only address the symptoms of sleep apnea, helping me to breathe when an apneic event occurs. These treatments seem more like a band-aid type solution, without addressing the underlying problem; perhaps this is why I am considering a more drastic solution such as surgery. If I could "cure" the underlying sleep apnea, I guess I wouldn't need a CPAP altogether. I just don't want to table any of the options, which is why I'm seeking a consultation with Dr. KL at Stanford at the end of the month.

@Kiralynx: My current CPAP equipment is a Respironics REMstar Auto M Series with an Encore Smart Card and a heated humidifier. I was told by the medical supply company that this is one of those state-of-the-art ones as you suggested. And it certainly is a lot quieter and more comfortable than the one I had 6 years ago. My mask is also respironics with some kind of comfort gel. I'm not sure which model because the box is stored away with my travel case. In regards to my previous consultations, I first met with ENT (an otolaryngologist) who put a camera and a hose up my nose, but this was before the polysomnogram which discovered that i had a 72 RDI. And she wasn't the one suggesting an MMA -- she discussed with me the septoplasty and the turbinate reduction, but insisted that I first get the polysomnogram, which I then got. I then consulted with a regular sleep doctor, who doesn't do any surgeries. She told me about my options, which is how MMA got brought up. She had mentioned that MMA is a very surgeon-specific surgery, but that she wasn't comfortable recommending any surgeons from my general area (I go to school in Ohio), but that she did know of a very qualified surgeon in California (I am originally from the Los Angeles area, and she also knew that my gf is from the Bay Area). I don't think she was motivated to have me undergo surgery necessarily because she was of any particular mind set, "surgeon mindset" or otherwise, and I think that perhaps she was presenting the option because of the severity of my apnea and the difficulty I am having in response to it.

@Mac33: Thank you for the links to sleepnet.com forums. I have re-posted my OP from here on there as well because it seems to be fairly well trafficked, and by some sleep surgery professionals as well.

The topic of age comes up frequently here, and it's become apparent this is not an "old folks" disorder. Although I'm in my 50's I had symptoms even when I was young and fit.

Yes, that is a current machine with upgraded features that you have. Even so, at very high pressures, another style of delivery may end up serving you better.

About the MMA procedure, was there a scan or xray of your throat done showing a reduced airway due to an inset jawbone? That particular surgery is only for those where a workup indicates the difference that could be made is significant. If the jaw is already in a normal position, it likely can't be moved much. My brother's co-worker had nearly his whole face, nose & throat reconstructed as his anatomically insufficient airway couldn't accomodate an airflow necessary to meet needs, cpap or not. He said the surgeries saved his life. So, there are those who can benefit from this surgery. But I'm wondering if the doc threw that out more as one means of treating OSA in general.

Glad you found your way here. When I did I had quit cpap and was scared to sleep with it and scared to sleep without it. I personally think the number of people who really can't successfully use cpap is much smaller than the number who think they can't. You're in the right place to get support as you move toward successful cpap treatment while you are still young and can hopefully avoid the health consequences some of us garnered.

Kathy

mattyt wrote:
@ Padacheek, Hawthorne, and GaryG: I realize that new medical advancements may be forthcoming, but I'm currently very afraid of doing nothing. At the age of 19, I probably could have taken more steps to prevent the position that I'm currently in. In this regard, I am definitely going to be asking my sleep doctor on Thursday about the other xPAP options and whether they may be worth considering. My only reluctance with the xPAP treatments is that they seem to only address the symptoms of sleep apnea, helping me to breathe when an apneic event occurs. These treatments seem more like a band-aid type solution, without addressing the underlying problem; perhaps this is why I am considering a more drastic solution such as surgery. If I could "cure" the underlying sleep apnea, I guess I wouldn't need a CPAP altogether.

It's very rare for someone to have surgery and _not_ need a CPAP after (and I'm not familiar with this particular surgery, but that's true for all the surgeries I do know about) because sleep apnea is nearly always caused by a combination of factors and it's just about impossible to fix all of them--usually a good result in surgery is having a lower AHI and/or using a lower pressure ... if you're still doing as well five years later (even if "as well" only means a lower pressure) your surgery is considered to have been a success. I was diagnosed at 28 (after 17 years of complaining of symptoms) and I honestly can't fathom why someone would want to undergo a drastic, dangerous, painful surgery that likely wouldn't cure the problem anyway, rather than sleeping with an appliance that's a good deal less trouble than other things one could have to sleep with (I've had a lot of joint problems so I've slept with a lot of different braces on various parts of my body).

And *correct* xPAP treatment *will* address the underlying problem: it will force your airway to stay open nearly all the time (occasional airway collapse is normal ... for anyone, not just people with apnea) and make it impossible for an event to occur. Only a wide-open APAP (that is, one with a minimum pressure too low to do any good), which no responsible sleep doctor would prescribe on a permanent basis, waits for an event before responding.

No one is suggesting you do nothing; just that you exhaust the non-invasive options before you do something that many, many people regret having done. (I have a co-worker who had a UPPP surgery who told me that it was the absolute worst decision he ever made and it actually made his apnea worse.)

tillymarigold_ wrote:
And *correct* xPAP treatment *will* address the underlying problem: it will force your airway to stay open nearly all the time (occasional airway collapse is normal ... for anyone, not just people with apnea) and make it impossible for an event to occur. Only a wide-open APAP (that is, one with a minimum pressure too low to do any good), which no responsible sleep doctor would prescribe on a permanent basis, waits for an event before responding.

No one is suggesting you do nothing; just that you exhaust the non-invasive options before you do something that many, many people regret having done. (I have a co-worker who had a UPPP surgery who told me that it was the absolute worst decision he ever made and it actually made his apnea worse.)

I agree. Making sure the pressure is set properly for you is key. Often the pressure the doctors prescribe needs to be tweaked up or down by YOU. Please make some experiments of your own before having surgery. If you do not know how to get into your machine to change pressure...someone here will have the same machine as yours and will be able to advise. Good luck!

I can't offer any suggestions regarding surgical options. Those you will have to investigate on your own and try to determine which might offer you what you are searching for.

In the meantime why not at least try to determine if your therapy is optimal? What settings do you use? If in auto mode what pressure ranges? Have you looked at what data is available on your machine's display to see what might be going on? It offers 7/30 day averages but this can be reset to zero each night so that you get a one night picture of the leak, AHI and pressure. Consider getting the software so that you can really see what might be going on? I have the same machine as you as well as the software and it has proved priceless.

Surgery may or may not be what you will want to do but for now I would think you would want to try to do what is available today, tonight. Yeah, it might be a bandaid but it is a very effective bandaid when used optimally and will help prevent further damage while you are considering your other options. Heck, you are so young. There is no telling what options will be offered in 5 years.

Anyway, below are instructions on how to get into the clinical menu for your machine and turn on the available data as well as how to reset to zero the averages each night. Seriously consider adding the software and card reader to really be able to see if the therapy is optimized. Optimal therapy may or may not give you significant symptom alleviation but it sure will help prevent further damage caused by the events.
So go look and see what your AHI and leak rate is on the machine.... Maybe there is something that needs improvement. Tell us what your settings are. BTW if you have a pretty good leak going on the auto unit will blow like crazy trying to compensate, so it might be doing this when you think it is trying to stop events. Just a thought..

Menu for M Series Auto

1. Hold down the <- -> buttons while plugging in the power on the back, wait for 2 beeps, release buttons.
2. Press the + key. <- -> buttons move to next field, -/+ keys decrement/increment
3. Check the following field(s):

-Therapy Mode = (CPAP/Auto)

-Auto:Max = (default=20.0cm)

-Auto:Min = (default=4.0cm)

-C-Flex Setting = (options are off, 1, 2 or 3)

-AutoRamp Time = (options are 05 to 45 min)

-AutoRamp Pressure = cm (4cm->AutoMin)

-Mask Alert Feature = On (On/Off)

-Auto Off Feature = Off (On/off)

-Split Night Time = Off (off, 120, 180, 240)

-Show AHI/Leak Feature = On (On/Off)

Press On/Off button to exit.




==========Resetting LCD Display Data====================

To reset LCD Therapy data (does NOT erase any data from SmartCard):

1. Hold down the (<-) (->) buttons while plugging in the power on the back,
wait for 2 beeps or 5 seconds, release buttons.
2. Press the (->) key and navigate to Therapy screen.
3. Press and HOLD down the (-) minus key for 5 seconds and/or until therapy data is reset to Zero.
4. Press the (->) key to scroll back to main menu, press (+) key to enter Setup or
On/Off button to exit.

Hi -
I would find some young people who have had the surgery, and learn about their experiences as well.

My nephew had a series of surgeries when he was 18 - sorry, I don't know exactly which they were, but it totally visibily changed the structure of his face. Before the surgeries, even with the CPAP he wasn't getting good enough sleep. He says now that it was the best thing he ever did. He still has mild sleep apnea but doesn't use the CPAP. He is 21 now and excelling in everything he is doing, school, work, debate team, etc.

Surgery is tough, but maybe easier when you are younger to recover.

MattyT,

Do you have the software and card reader for your machine? It's listed here:

https://www.cpap.com/productpage-bundle.php?BundleID=64

I can't speak to the issues of surgery. I would be, however, interested to see what's going with your treatment every night. The software will give you some important data to consider before making a decision.

Best wishes,

Mark