Hi,
I am a 27 year old male that is a little underweight. I have severe OSA (53 events/hour), after the UPPP with deviated septum. I am currently using a CPAP, which seems to work for the most part...but I am 27, I really don't want this thing for the rest of my life. So, I am thinking about having a jaw advancement done, since it has a 75-85% success rate (versus the 50% rate with the UPPP). Anyway, I am looking for feedback...general, successes on surgery, or whatever. This condition has severly impacted my life, I have been treated for depression (with all kinds of medications to no avail), until I was finally diagnosed with this condition 2 years ago. Because I now know how serious this is, I really don't want it, and I will do almost anything to get rid of it...(I have even thought about doing the tracheotomy). Please help! I have a family now, and OSA has really impacted them too. Thank you!
Josh
I have been looking for a forum like this...
15 posts
• Page 1 of 1
Your really not alone
Hi Josh,
I have just been diaognosed with severe OSA and on average have between 40-50 episodes a night as well. It hit me out of the blue about 6 months ago. Prior to this I have never had a problem sleeping 10 hours a night - pr even standing up!
I'm 35 with a lovely wife and 7 week old baby - this is really a horrible situation to be in and I just wish it would end. I'm getting about an hour to 2 hours quality sleep a night and that is it. I travel a lot so am having quite a few episodes of dropping off behind the wheel which is not good news but my job relies on me driving. I have come to recognise the signs and stop as soon as I feel it comming on.
In my local area in the UK, there is a waiting list of 53 people for cpap / bipap treatment with a timescale of 6 months. Unlike other areas in the world, I am having trouble trying to purchase my own machine to aid me.
What can we do next?
I have just been diaognosed with severe OSA and on average have between 40-50 episodes a night as well. It hit me out of the blue about 6 months ago. Prior to this I have never had a problem sleeping 10 hours a night - pr even standing up!
I'm 35 with a lovely wife and 7 week old baby - this is really a horrible situation to be in and I just wish it would end. I'm getting about an hour to 2 hours quality sleep a night and that is it. I travel a lot so am having quite a few episodes of dropping off behind the wheel which is not good news but my job relies on me driving. I have come to recognise the signs and stop as soon as I feel it comming on.
In my local area in the UK, there is a waiting list of 53 people for cpap / bipap treatment with a timescale of 6 months. Unlike other areas in the world, I am having trouble trying to purchase my own machine to aid me.
What can we do next?
Hi guys:
I'm surprised and saddened to hear you're both having such a rough time. The tracheotomy would certainly get you off the hook, although it has complications of it's own. Everyone I have talked with about OSA has said that there is a very high scuccess rate with the mask. Once CPAP therapy has been initiated this disorder becomes pretty much transparent outside of wearing the mask every night. Maybe it's just a matter of getting more used to the mask? I dunno. For me personally I love my mask because it works and I sleep great with it every night. I've heard lots of tales on this and other message boards about people who think that CPAP therapy is a bunch of crap but it usually turns out that they just haven't connected with the right mask and/or mask fit yet. Once that is accomplished there aren't anymore problems with daytime sleepiness or other OSA symptoms that they may have had pre-CPAP.
Success can be yours if you're willing to accept the mask every night and it works with a good seal. That's pretty much the cure for OSA. That's why we're all here to help each other and make it work. As far as fully "getting rid" of OSA there's the neck-hole like you mentioned, but I would think that would be much more debilitating in the long run.
Keep looking, keep talking with your Dr., talk with others on this board- just don't give up and turn off your machine!
I'm surprised and saddened to hear you're both having such a rough time. The tracheotomy would certainly get you off the hook, although it has complications of it's own. Everyone I have talked with about OSA has said that there is a very high scuccess rate with the mask. Once CPAP therapy has been initiated this disorder becomes pretty much transparent outside of wearing the mask every night. Maybe it's just a matter of getting more used to the mask? I dunno. For me personally I love my mask because it works and I sleep great with it every night. I've heard lots of tales on this and other message boards about people who think that CPAP therapy is a bunch of crap but it usually turns out that they just haven't connected with the right mask and/or mask fit yet. Once that is accomplished there aren't anymore problems with daytime sleepiness or other OSA symptoms that they may have had pre-CPAP.
Success can be yours if you're willing to accept the mask every night and it works with a good seal. That's pretty much the cure for OSA. That's why we're all here to help each other and make it work. As far as fully "getting rid" of OSA there's the neck-hole like you mentioned, but I would think that would be much more debilitating in the long run.
Keep looking, keep talking with your Dr., talk with others on this board- just don't give up and turn off your machine!
_________________
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Flow generator: Mask: Fisher/Paykel HC-431 Full Face Mask Humid:
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Pressure: 21/17cm H2O
40,000 hours on CPAP
100% Compliant for 15 yrs.+
Mask breathers unite!
Ojafs...
I am sorry for your situation. I too have a newborn, a month old 3 days ago.
Unfortunately I don't have any advice to give you as to your situation, except that I highly recommend getting treated as soon as possible, as it severely affects your quality of life. I too have fallen asleep at the wheel, and in fact I think I have even had one episode where I went right into REM while I was awake!!
At any rate, the CPAP does work wonders, as I feel a ton better from it (I am on no medications what-so-ever). In fact, I have close to 100% usage thus far. But it does interfere with my life. I should start traveling soon, which means it is something I have to take with me...think of it as life support. However, having a cold with OSA is not fun, because for me, I can't use the mask for that...which is a double edged sword. I mean, you need sleep when you're sick to feel better, right?
Also, I am worried about how effective it is. Because lets face it, the sleep studies we get are not an actual representative sample of how we sleep...all kinds of factors can affect your sleep.
Lately I have been feeling tired, meaning not well rested, which I am not sure is from the baby or what...but it is making me irritable, and depressed. For me, I would love to say...yes, I definitely do not have OSA, so whatever problems I have cannot be attributed to something I don't have (must be something else). I think I have had this for as long as I can remember...meaning sleeping 14 hours a day and never feeling rested.
Which brings me to my next worry...my memory. I think my memory has suffered from this...my short term. I cannot remember trivial things, peoples names, dates, and conversations. It really bothers me to the point where I saw a neurologist that tested my memory (which came out perfect). I really feel something is not right, that I am not just "absent minded".
At any rate, the trach is a last resort thing, but I was thinking about it because it is 100% effective. I am seriously considering the advancement of both the upper and lower jaw...due to the success rate with it. But I am afraid, because after the UPPP with deviated septum, and the pain and suffering I went through after the surgery, that my results will not be better. Trust me, once you gain up on your "sleep debt", and then you get it back, you see things a little differently.
One more thing...I would like to see about doing better tests...I mean, why can't they just find out where the blockage is, and go from there? I mean, have an anethstesiologist put me too sleep, do an MRI, and find the blockage? Is that a crazy idea? Sure it might cost money, but this is a growing condition that we need to know more about...and embrace in every aspect. I mean, my life insurance costs double what my wife's cost...just from the sleep apnea!!
Anyway, thanks for the responses thus far. It is good to hear that I am not the only one...
Josh
I am sorry for your situation. I too have a newborn, a month old 3 days ago.
Unfortunately I don't have any advice to give you as to your situation, except that I highly recommend getting treated as soon as possible, as it severely affects your quality of life. I too have fallen asleep at the wheel, and in fact I think I have even had one episode where I went right into REM while I was awake!!
At any rate, the CPAP does work wonders, as I feel a ton better from it (I am on no medications what-so-ever). In fact, I have close to 100% usage thus far. But it does interfere with my life. I should start traveling soon, which means it is something I have to take with me...think of it as life support. However, having a cold with OSA is not fun, because for me, I can't use the mask for that...which is a double edged sword. I mean, you need sleep when you're sick to feel better, right?
Also, I am worried about how effective it is. Because lets face it, the sleep studies we get are not an actual representative sample of how we sleep...all kinds of factors can affect your sleep.
Lately I have been feeling tired, meaning not well rested, which I am not sure is from the baby or what...but it is making me irritable, and depressed. For me, I would love to say...yes, I definitely do not have OSA, so whatever problems I have cannot be attributed to something I don't have (must be something else). I think I have had this for as long as I can remember...meaning sleeping 14 hours a day and never feeling rested.
Which brings me to my next worry...my memory. I think my memory has suffered from this...my short term. I cannot remember trivial things, peoples names, dates, and conversations. It really bothers me to the point where I saw a neurologist that tested my memory (which came out perfect). I really feel something is not right, that I am not just "absent minded".
At any rate, the trach is a last resort thing, but I was thinking about it because it is 100% effective. I am seriously considering the advancement of both the upper and lower jaw...due to the success rate with it. But I am afraid, because after the UPPP with deviated septum, and the pain and suffering I went through after the surgery, that my results will not be better. Trust me, once you gain up on your "sleep debt", and then you get it back, you see things a little differently.
One more thing...I would like to see about doing better tests...I mean, why can't they just find out where the blockage is, and go from there? I mean, have an anethstesiologist put me too sleep, do an MRI, and find the blockage? Is that a crazy idea? Sure it might cost money, but this is a growing condition that we need to know more about...and embrace in every aspect. I mean, my life insurance costs double what my wife's cost...just from the sleep apnea!!
Anyway, thanks for the responses thus far. It is good to hear that I am not the only one...
Josh
The ox is slow...but the earth is patient.
Josh,
I have been on CPAP therapy for a year now. since starting my memory has improved, I use my reading glasses a lot less and suprisingly I have had less colds and when I did they were of shorter duration. There has been many nights where my wife was hacking away and I was sleeping blissfully. It actually opens up my sinuses and there is only one cold where I had to resort to a full face mask.
Traveling with a CPAP is really no big deal. On airplanes you can even carry it on in addition to your normal carry on. Just make sure you pack an extension cord for those single outlet hotel rooms.
None of us want to have to hook to a machine for life but until they come out with some new approach it is a lot easier than falling asleep at the wheel. Don't give up and remember it wasn't long ago that they didn't even have this therapy. There are plenty of things in the works like magnetic implants that are just around the corner time wise.
I have been on CPAP therapy for a year now. since starting my memory has improved, I use my reading glasses a lot less and suprisingly I have had less colds and when I did they were of shorter duration. There has been many nights where my wife was hacking away and I was sleeping blissfully. It actually opens up my sinuses and there is only one cold where I had to resort to a full face mask.
Traveling with a CPAP is really no big deal. On airplanes you can even carry it on in addition to your normal carry on. Just make sure you pack an extension cord for those single outlet hotel rooms.
None of us want to have to hook to a machine for life but until they come out with some new approach it is a lot easier than falling asleep at the wheel. Don't give up and remember it wasn't long ago that they didn't even have this therapy. There are plenty of things in the works like magnetic implants that are just around the corner time wise.
josh and ojafs,
I won't go into the details but my life was terrible the last six years because I had undiagnosed/misdiagnosed severe osa. I started cpap therapy six months ago and it took about four months and some adjustments before it started to become effective. Now I am getting much better and trying to rebuild my life.
Right now cpap is the gold standard for osa treatment and I heartily encourage you to get the therapy started right away and commit yourself to it. Do whatever you can to accelerate the schedule you are being given.
Finally, the potential market for osa treatments/cures is huge as more and more of the population is being diagnosed. There are a lot of people praying for a new easy cure and more importantly a lot of money is starting to be poured into research. So there are high hopes that we will not have "this thing for the rest of (our).. lives". In the meantime get going with cpap.
Good luck and please keep us informed.
rooster
I won't go into the details but my life was terrible the last six years because I had undiagnosed/misdiagnosed severe osa. I started cpap therapy six months ago and it took about four months and some adjustments before it started to become effective. Now I am getting much better and trying to rebuild my life.
Right now cpap is the gold standard for osa treatment and I heartily encourage you to get the therapy started right away and commit yourself to it. Do whatever you can to accelerate the schedule you are being given.
Finally, the potential market for osa treatments/cures is huge as more and more of the population is being diagnosed. There are a lot of people praying for a new easy cure and more importantly a lot of money is starting to be poured into research. So there are high hopes that we will not have "this thing for the rest of (our).. lives". In the meantime get going with cpap.
Good luck and please keep us informed.
rooster
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Guest
I understand your reticence. I got my first machine eleven years ago when my youngest was just a year old. Being on a machine can take a little getting used to but it improves your quality of life, as well as that of your family. Your family gets better sleep and they get a more energetic and responsive spouse/parent.
Best of luck!
Best of luck!
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Guest
Re: I have been looking for a forum like this...
On the TAS forum Billinseattle had the MMA/GA surgery with great success. Here's a link to one of his posts:josh wrote:Hi,
I am a 27 year old male that is a little underweight. I have severe OSA (53 events/hour), after the UPPP with deviated septum. I am currently using a CPAP, which seems to work for the most part...but I am 27, I really don't want this thing for the rest of my life. So, I am thinking about having a jaw advancement done, since it has a 75-85% success rate (versus the 50% rate with the UPPP). Anyway, I am looking for feedback...general, successes on surgery, or whatever.
http://www.talkaboutsleep.com/message-b ... 025#108025
MMA is a pretty drastic bit of surgery. It takes a LOT of time to recover and is VERY expensive.
Definitely give CPAP a shot, but I personally would try a dental device like TAP before the MMA. Basically it does the same action as MMA but doesn't take a year out of your life and its a lot more easily reversible....i.e. you can just stop using it.
just a thought.
Definitely give CPAP a shot, but I personally would try a dental device like TAP before the MMA. Basically it does the same action as MMA but doesn't take a year out of your life and its a lot more easily reversible....i.e. you can just stop using it.
just a thought.
Remember:
What you read above is only one data point based on one person's opinion.
I am not a doctor, nor do I even play one on TV.
Your mileage may vary.
Follow ANY advice or opinions at your own risk.
Not everything you read is true.
What you read above is only one data point based on one person's opinion.
I am not a doctor, nor do I even play one on TV.
Your mileage may vary.
Follow ANY advice or opinions at your own risk.
Not everything you read is true.
-
sickwithapnea17
- Posts: 472
- Joined: Thu Sep 01, 2011 7:41 pm
Re: I have been looking for a forum like this...
has anyone else had trach? I've been struggling on this small shiley 6 with asthma, it hasn't cured me after 1 month. I don't believe that it takes 8 months to take effect, I should be sleep well with an open trach right after the operation, but I'm not sleeping well or rested.
after the trach they shipped me to a nursing home where they threw out my shiley 8 and then put me on Percocet which causes sleep apnea
after the trach they shipped me to a nursing home where they threw out my shiley 8 and then put me on Percocet which causes sleep apnea
18/14 bipap st
Re: I have been looking for a forum like this...
This is a 7 year old thread.
_________________
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US Navy Retired 1973,AirCurve 10 ASV, Mode: ASV Auto, Min EPAP: 7.2, Max EPAP: 15.0, Min PS:4.0, Max PS: 15.0, Mask ResMed Airtouch F20, Backup: (2) AirCurve 10 ASV
Re: I have been looking for a forum like this...
Squid,
I think 'Sickwithapnea' is second thinking getting his trach procedure being performed but wants to talk about it with someone who has experience in this arena.
I'm sure he just found this old thread but was hoping it would jar some responses from anyone in his shoes.
Sickwithapnea: I would absolutely help you if I could but I have zero experience with this subject. I'm sorry. Hang in there.
TheWino
I think 'Sickwithapnea' is second thinking getting his trach procedure being performed but wants to talk about it with someone who has experience in this arena.
I'm sure he just found this old thread but was hoping it would jar some responses from anyone in his shoes.
Sickwithapnea: I would absolutely help you if I could but I have zero experience with this subject. I'm sorry. Hang in there.
TheWino
The wino and I know the joy of the ocean... J. Buffett ***Please do not take any information from my post/s as medical advice. I am simply providing personal experiences. Thank you***
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chunkyfrog
- Posts: 34545
- Joined: Mon Jul 12, 2010 5:10 pm
- Location: Nowhere special--this year in particular.
Re: I have been looking for a forum like this...
Agreed. swa17 has had way more than his share of frustration.
Hang in there; it's GOT to get better. More healing time. Good thoughts going your way.
Hang in there; it's GOT to get better. More healing time. Good thoughts going your way.
_________________
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| Additional Comments: Airsense 10 Autoset for Her |
15 posts
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