Trying to reset cpap back to autopap...may need instructions

I found this forum and am in hopes that someone somewhere can help me find answers or at least hoping to find others who are experiencing the same kind of problems as my husband.
I will make this as short but informative as possible. My husband who is in his early 40's has had many issues over the past 10 years with tendon and muscle injuries that wouldn't heal for months and even years. He also found out he had very low T a few years ago and got HRT at a well known place that inserts pellets every 6 weeks until it is up to par. They got his up to over 1000 and he was still exhausted all the time. As time went along, I became aware of his obstructive sleep apnea because it became severe enough that it woke me up. 3 sleep studies later, he was given a cpap machine. He found that he couldn't use it due to his deviated septum and stuffy nose. He would feel like he was smothering after a couple of hours if he could even start out with it on. So he had surgery on his nose last year, rhinoplasty with turbinate reduction. After the initial swelling went down and his nose healed, he was given a bipap machine. He used that pretty successfully for 2 months. Then his nose became so stuffy again that he could not use it at all and it is now collecting dust. As the weeks went by, he became more and more exausted and having to pull off the road to take a nap before he could drive home from 5 miles away from the house (scary) and he became more agitated/irritable. 2 months ago, his libido became non existant. We have been married for many years and have always enjoyed a very good sex life. Now it's gone and all he can say to me is he just has no desire to do anything, isn't looking forward to anything and just more or less gets through the work day as best as he can and comes home every chance he gets and takes a 15 min nap. He says he still loves me but just has no feelings when he holds me or looks at me. He had been having problem in that department for about a year, problems maintaining an erection but we would work through that to a good end, but now it's just nonexistant. This has been very hurtful for me but I'm trying to understand. Has anyone else had this experience? We have been to so many doctors in the past 5 years with this that we are losing faith in the healthcare field. The latest and greatest news is, I found a sleep apnea specialist who speaks all over the country who has examined him and told him he needs his tonsils, adnoids, uvula and part of his tongue removed which is going to be very very painful with a week stay in the hospital...but no guarantee of success..possibly 60%. HELP!

Hi Seekinganswers,

Welcome to the forum. I am so sorry to hear what happened to your husband.

I definitely understand being desperate from personal experience but I would be very cautious about undergoing the surgeries that the sleep specialist is proposing as they have a very low success rate. The 60% success rate yo uare being quoted is more like 30%. Please get another opinion.

Regarding your husband having problems with his sinuses two months after surgery, what does the doctor say who operated on him about the situation? What else has he tried to do to remedy the situation?

Anyway, I wish you the best of luck.

49er

Seekinganswers wrote:I found this forum and am in hopes that someone somewhere can help me find answers or at least hoping to find others who are experiencing the same kind of problems as my husband.
I will make this as short but informative as possible. My husband who is in his early 40's has had many issues over the past 10 years with tendon and muscle injuries that wouldn't heal for months and even years. He also found out he had very low T a few years ago and got HRT at a well known place that inserts pellets every 6 weeks until it is up to par. They got his up to over 1000 and he was still exhausted all the time. As time went along, I became aware of his obstructive sleep apnea because it became severe enough that it woke me up. 3 sleep studies later, he was given a cpap machine. He found that he couldn't use it due to his deviated septum and stuffy nose. He would feel like he was smothering after a couple of hours if he could even start out with it on. So he had surgery on his nose last year, rhinoplasty with turbinate reduction. After the initial swelling went down and his nose healed, he was given a bipap machine. He used that pretty successfully for 2 months. Then his nose became so stuffy again that he could not use it at all and it is now collecting dust. As the weeks went by, he became more and more exausted and having to pull off the road to take a nap before he could drive home from 5 miles away from the house (scary) and he became more agitated/irritable. 2 months ago, his libido became non existant. We have been married for many years and have always enjoyed a very good sex life. Now it's gone and all he can say to me is he just has no desire to do anything, isn't looking forward to anything and just more or less gets through the work day as best as he can and comes home every chance he gets and takes a 15 min nap. He says he still loves me but just has no feelings when he holds me or looks at me. He had been having problem in that department for about a year, problems maintaining an erection but we would work through that to a good end, but now it's just nonexistant. This has been very hurtful for me but I'm trying to understand. Has anyone else had this experience? We have been to so many doctors in the past 5 years with this that we are losing faith in the healthcare field. The latest and greatest news is, I found a sleep apnea specialist who speaks all over the country who has examined him and told him he needs his tonsils, adnoids, uvula and part of his tongue removed which is going to be very very painful with a week stay in the hospital...but no guarantee of success..possibly 60%. HELP!

Wow, sounds like you've been through the wringer. I really do hope that this gets better. My first question is what sort of mask does he have? I have a deviated septum and a smaller than average airway and am on a full face mask. If he's just using a nasal mask then that might be part of the problem with him feeling that he's suffocating. My DME put a nasal on me when we met and asked me to try to breathe through my mouth, it felt like a vapor lock so I went with a face mask that covers the nose and mouth. If he breathes through his mouth at all that's a change I would make right away. I'm not a doctor so I really can't say anything about any of the rest of it. My prayers go with you and your husband. Don't give up.

Well, the surgeon who did his nose surgery says the surgery was a "success" and that he could drive a truck up there. But his nose is always stopped up now just like it was prior to the nose surgery. He hasn't been real good at using steroidal nose sprays because I think he has just given up and doesn't have the energy nor care to remember to do it. That may or may not help that situation but I'm going to just have to hand it to him and say "spray" every morning and night. He is very worried about this surgery as he was told he would be in ICU the first night and possibly tubed because of swelling. He isn't so worried about the tonsils but the tongue? it's very scary. But he also feels like he has to try something because he is getting worse as we speak. I am hoping to find someone somewhere that has had this same surgery and can tell us the pros and cons. It will take about 6 weeks to get it approved through his insurance anyway, so we have some time to research. Just finding people is the problem. That's why I posted on this forum in hopes of finding someone somewhere who can give us some sound advise. Short of a tracheotomy, I just don't know the answer

Before I can help you I need to know your age and location. This is the registration requirements.

I will have to agree with the others who have suggested getting a second opinion and leave the surgery as a last resort. I would encourage you to try to make CPAP work. There are some very expert people here who can help. Did your CPAP machine have a heated hose and humidifier? That can help with nasal issues; I have some first hand experience with that.

Concerning the issues with libido, it is difficult for me to admit this in a public forum, but we went through all that as well. Education and a strong relationship has helped us get through that. But know this, it is normal with OSA to have these side effects and it will get better with treatment.

I wish you and your husband well. The more experienced members will be along shortly, to give you some very good ideas on how to proceed.

Seekinganswers,

Ignore Avi as you don't have to provide any information you're not comfortable disclosing.

I am sorry to hear the surgeon isn't helpful. Have you tried consulting another ENT for a 2nd opinion?

I hope your husband hasn't developed empty nose syndrome which can be a complication of turbinate reduction. You might want to visit this forum on ENS to see if anything might be helpful:

http://guest.fr.yuku.com/

I would also try raising the bed to see if that could help your husband's condition and enable him to wear a mask. Additionally, while it hasn't helped me, many people swear by nasal irrigation.

You also might want to look at this product which has gotten positive reviews regarding nasal congestion. I have been very tempted to buy it but the price has dissuaded me so far.

http://tinyurl.com/d6vntx9

Believe me as one who is in a similar situation to your husband with the exception of not having had the nasal surgery, I totally understand the desperation. But you don't want to take actions that will make your life even worse than it already is.

49er

Seekinganswers wrote:Well, the surgeon who did his nose surgery says the surgery was a "success" and that he could drive a truck up there. But his nose is always stopped up now just like it was prior to the nose surgery. He hasn't been real good at using steroidal nose sprays because I think he has just given up and doesn't have the energy nor care to remember to do it. That may or may not help that situation but I'm going to just have to hand it to him and say "spray" every morning and night. He is very worried about this surgery as he was told he would be in ICU the first night and possibly tubed because of swelling. He isn't so worried about the tonsils but the tongue? it's very scary. But he also feels like he has to try something because he is getting worse as we speak. I am hoping to find someone somewhere that has had this same surgery and can tell us the pros and cons. It will take about 6 weeks to get it approved through his insurance anyway, so we have some time to research. Just finding people is the problem. That's why I posted on this forum in hopes of finding someone somewhere who can give us some sound advise. Short of a tracheotomy, I just don't know the answer

Interesting thread. I too had surgery for a deviated septum which involved reducing the size of the turbinates . I always had trouble breathing throuh my nose and I was pretty much a mouth breather. The ENT Dr said that the surgery would be like "opening a window" but he was wrong as the surgery failed and today I am exactly the same as before.

I was diagnosed with Sleep Apenia last Feb and since I am a mouyh breather, I got a full face mask and breath through my
mouth. I feeel that I am having great success with my cpap machine and have AHIs of only 1 to 1.5 now and I usually feel rested.

I suggest that you get a full face mask and see if you don't have good luck that way and start getting the rest that you need.

Good luck!

Jack in AR

Wow! I'm so encouraged already by the replies. Yes, he has tried every mask available. The full face mask is the one that he has used with success until the nose issues started up again. The ENT who did the nose surgery said that he has some "nasal valve collapse" and gave him some cones to insert into his nose. He put them in his nose the first night, put the mask on and within minutes he took it all off and said "it's just too much stuff on my face." I think I will try to get him to try that again tonight. He is just so frustrated with it all because the 2 months that he was able to use the bi-pap successfully he told me he actually was starting to feel better. So when his nose started giving him problems again, he just threw up is hands. And yes, his bi-pap machine has the water reservoir but not sure about heated hose. I will check on that.
49er- thank you for the replies. I will certainly check all of that out. And I didn't mention that my husbands airway is so small because of his tonsils never shrinking as an adult. ENT doc said most adults tonsils have shrunk by now and his never did. So his tongue drops back in his throat the minute he goes to sleep and thus the apnea's begin. I spend a lot of time getting him to turn onto his side or stomach. He has shoulder issues (because of all this) so he is a back sleeper at least in the beginning of the night. We are planning on a second opinion and third if need be. Yes Jack, his hopes were so high in that the nasal surgery would be his answer, was told he would be able to breathe like a charm through his nose afterwards...never happened. He could breath good on one side, but the other side collapses..now both sides are stopped up pretty much all day and especially when he lays down.

Sounds like he is physically and mentally exhausted from this journey, and it's good he has you to advocate for him at this time by gathering and sorting through information to glean some relevant tidbits. He's probably too depleted to take this on. Do you have copies of his sleep studies? If not, can you get them? Maybe some bare facts, like how low his oxygen drops, would motivate him to keep trying with the CPAP. Since his stuffiness was existing before and after CPAP, for the sake of a more immediate resolution, maybe leave sorting that out till after he feels better. Plenty of people sleep with full face masks because they mouth breathe and either don't want avoidable surgery or a surgical solution isn't likely. Getting a full face mask could happen in a matter of days, then you and he could start doing any adjustments that might be needed to optimize its comfort and effectiveness. Sounds like he has other health issues that will need continued follow-up, but if his body isn't getting the oxygen it needs for health and healing, he's fighting an uphill battle. If he can focus on conquering (or in this case, yielding to) getting therapeutic CPAP treatment, I would dare to say he'll then have more strength for the other battles. A stuffy nose does not mean someone can't use CPAP, and right now using that CPAP is his best option - it's quick, no surgical risk, no recovery pain, and isn't something that changes your anatomy forever whether for good or bad or how little benefit.

As far as other surgeries go, were they advising him to get his tonsils out for years and his tongue operated before he had the nasal surgeries? They darn well better have if there's any credibility at all to them saying there's a need. If this is an afterthought since he's still having congestion, I'd run far and fast from these procedures. I doubt tonsils often suddenly become a problem needing surgical intervention. It's usually a long standing problem with infections etc. To be perfectly honest, these surgeries are difficult for even a reasonably healthy person - which your husband does not seem to be. And I've read studies that indicate that post surgical healing in general is slower for those who have untreated sleep apnea. If the surgeries do not resolve his sleep apnea, that leaves him back at needing CPAP. We've had plenty of people on here using CPAP after these surgeries. Of course, if the surgery corrected someone's sleep apnea, they wouldn't likely be hanging around here on a CPAP forum, so don't be surprised if you don't get many replies singing the praises of surgical solutions.

Sounds like he's not obstinate, just utterly exhausted. Hang in there and take good care of yourself while you're trying to take good care of him.

P.S. After I posted I read that you say he did use a full face mask. Why does he HAVE to breathe through his nose when the mask covers his mouth and it is acceptable to mouth breathe in a full face mask? When he is sleeping without CPAP is he breathing through his nose or his mouth when he sleeps? Just trying to get a clearer picture.

Seekinganswers wrote:I found this forum and am in hopes that someone somewhere can help me find answers or at least hoping to find others who are experiencing the same kind of problems as my husband.
I will make this as short but informative as possible. My husband who is in his early 40's has had many issues over the past 10 years with tendon and muscle injuries that wouldn't heal for months and even years. He also found out he had very low T a few years ago and got HRT at a well known place that inserts pellets every 6 weeks until it is up to par. They got his up to over 1000 and he was still exhausted all the time. As time went along, I became aware of his obstructive sleep apnea because it became severe enough that it woke me up. 3 sleep studies later, he was given a cpap machine. He found that he couldn't use it due to his deviated septum and stuffy nose. He would feel like he was smothering after a couple of hours if he could even start out with it on. So he had surgery on his nose last year, rhinoplasty with turbinate reduction. After the initial swelling went down and his nose healed, he was given a bipap machine. He used that pretty successfully for 2 months. Then his nose became so stuffy again that he could not use it at all and it is now collecting dust. As the weeks went by, he became more and more exausted and having to pull off the road to take a nap before he could drive home from 5 miles away from the house (scary) and he became more agitated/irritable. 2 months ago, his libido became non existant. We have been married for many years and have always enjoyed a very good sex life. Now it's gone and all he can say to me is he just has no desire to do anything, isn't looking forward to anything and just more or less gets through the work day as best as he can and comes home every chance he gets and takes a 15 min nap. He says he still loves me but just has no feelings when he holds me or looks at me. He had been having problem in that department for about a year, problems maintaining an erection but we would work through that to a good end, but now it's just nonexistant. This has been very hurtful for me but I'm trying to understand. Has anyone else had this experience? We have been to so many doctors in the past 5 years with this that we are losing faith in the healthcare field. The latest and greatest news is, I found a sleep apnea specialist who speaks all over the country who has examined him and told him he needs his tonsils, adnoids, uvula and part of his tongue removed which is going to be very very painful with a week stay in the hospital...but no guarantee of success..possibly 60%. HELP!

Hi Seekinganswers!

First please read and share with your doctors[1,2]!!!

Second I think I would look into traditional Chinese medicine. Many claim to be cured of OSA by these and I am finding what I have instituted so far useful. As well they have more cures and methodologies for sexual things than anyone I think. I did not expect to find that but it is certainly there.

May you find the best health!

Todzo

[1]: Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Source: J Clin Sleep Med. 2010 Dec 15;6(6):529-38. Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

[2]: Dynamic CO2 therapy in periodic breathing: a modeling study to determine optimal timing and dosage regimes
Yoseph Mebrate, Keith Willson, Charlotte H. Manisty, Resham Baruah, Jamil Mayet, Alun D. Hughes, Kim H. Parker and Darrel P. Francis
J Appl Physiol 107:696-706, 2009. First published 23 July 2009; doi: 10.1152/japplphysiol.90308.2008
Link: http://www.ncbi.nlm.nih.gov/pubmed/19628721

Seekinganswers
As with xPAP, one thing Y’all need to know is You’re NOT ALONE. I second the above suggestions to get a different medical opinion; try a full face mask; get a support team in place.
I had the nose surgery to correct a deviated septum, and a year later I was told I need turbinates cut on.. NO thank you. Too many stories of it not being long lasting; only thing worse is probably jaw breaking, and there’s some scary stories on that going really wrong. Get that second ENT opinion.
Because of my several physical issues, ED included, I have been on antidepressant medication and am regularly seeing a counselor. An impending divorce isn’t helping things, but that’s not for here. My point is get professional help for hubby’s Angst.
There’s not much more I can add, but will PM you with a suggestion for your consideration. Best wishes for some success in all this tribulation, and welcome to the forum.

I know two people who have had the surgery and in both cases, failure. One of them is in charge of the Sleep Study Center. Therefore, I can't recommend it. I was seeking that information for myself and my Ear Nose and Throat doc informed me of the very low success rate. I totally agree with a previous comment that he should go with full face mask. Also, when using the nasal pillows, my nose got so dried out and congested, I just couldn't handle it. I then discovered a product called "AYR Saline Nasal Gel". Of course no one told me about it at the docs office. When I get my machine back, I will be using a full mask as I am a nose/mouth breather. Wish you good luck and don't give ups.

Wow you have a lot going on!
One idea -- have his T levels rechecked, the T shots probably work better that the pellets and a weekly or biweekly shot may be far better. You need a good endo here.

Try many options before the surgery, get pugsy involved.
A T

kteague-Thank you so much for your informative reply. He is and has always tried to use the full face mask and did for a couple hours per night at first...prior to the nose surgery. He says he smothers when he tries to use the cpap because his nose become so stopped up when he lays down..much more so than when he is up and around. He says he feels like he can't breathe at all with it on...his is a bi-pap machine so it is barely blowing until he has an apnea event then it is supposed to gently ramp up and push him through that without waking him coming out of the deep sleep. And yes, I have his sleep studies...have all his records! (I work in the medical field so I know to get and keep all of that for this very reason)
You are exactly right about him being so exhausted that he hasn't the energy to sort or think. He will not read anything...I have to read it to him ..and it better not be too lengthy or he just can't focus. That being said, he has continued to work (self employed) but takes naps anytime he can...which probably do more harm than good as they are full of events I'm quite sure!
I haven't figured out yet how to reply to each person individually yet! I'm SOOO encouraged. I'm at work and have done nothing all day but read posts on here. This sight is a blessing straight from God!