Uncontrollable sleep apnea
Question:
About 2 years before my surgery I tried Somnuplasty on an outpatient basis. The fee included unlimited follow up treatments so the one fee covered the 3 attempts I endured and the doc certainley wasn’t making anything on the follow-ups. The benefits of the uvula somnuplasty were slightly reduced snoring but not a help for the apnea. During my recent surgery for the genioglossus tongue advancement, done under general anesthesia, somnuplasty was done on the tongue base while I was under. So, apparently it can be done both ways. "D. Smyth" <dannospa…@eircom.net> wrote in message
news:cg4jtl$4fq$1@kermit.esat.net… – Hide quoted text — Show quoted text -> "Brian Bebeau" <BrianBeb…@worldnet.NOSPAMatt.net> wrote in message > news:evdVc.28455$cT6.22031@fe2.columbus.rr.com… > > D. Smyth wrote: > > > Hi Brian, > > > Tonsillectomy, if they are large and causing problems will certainly do > you > > > know harm (except that all surgery can be dangerous). For me the UPPP is > a > > > big no no, as is somnoplasty which is purely a means to have you back to > his > > > surgery a couple of times with a nice fat fee for each visit. > > Actually, because I’d be having all three at once, I’d be under general > > anesthesia, so he’d be able to do all 5 treatments at once. I wouldn’t > > have to go back. > (SNIP) > Brian, > I think that you may have been misled. Somnoplasty is seldom a one off > treatment and is usually carried out at the Doctor’s surgery rather than > under general anaesthetic. I am 99% certain that you will have to go back. > It’s a real money spinner for the doctor. If you check out the following > link you will find that it is an outpatient procedure. > http://www.somnoplasty.com/MDframePC.html > You can also find who their accredited practitioners are. The procedure is > to reduce and tighten the tissue. Always remember that weak tissue grows > back. This procedure will not help you long-term. > Having all these procedures carried out in one go is going to be very severe > on you, also your pocket. > I suggest also that you check out the archives under ‘UPPP’ and you will > find that there have been some terrific reports immediately post UPPP, > however the situation worsens as time goes on. There are no peer reviewed > statistics for the success of UPPP for the post op period of 12/18 months. > Ask your surgeon if he can produce such figures, not his figures but those > that have been properly reviewed. > Brian, you are an adult and can make up your own mind, but at least research > it first. After surgery there’s no going back. > Best of luck, > Dan.
Response:
- Hide quoted text — Show quoted text -"D. Smyth" <dannospa…@eircom.net> wrote in message <news:cg4jtl$4fq$1@kermit.esat.net>… > "Brian Bebeau" <BrianBeb…@worldnet.NOSPAMatt.net> wrote in message > news:evdVc.28455$cT6.22031@fe2.columbus.rr.com… > > D. Smyth wrote: > > > Hi Brian, > > > Tonsillectomy, if they are large and causing problems will certainly do > you > > > know harm (except that all surgery can be dangerous). For me the UPPP is > a > > > big no no, as is somnoplasty which is purely a means to have you back to > his > > > surgery a couple of times with a nice fat fee for each visit. > > Actually, because I’d be having all three at once, I’d be under general > > anesthesia, so he’d be able to do all 5 treatments at once. I wouldn’t > > have to go back. > (SNIP) > Brian, > I think that you may have been misled. Somnoplasty is seldom a one off > treatment and is usually carried out at the Doctor’s surgery rather than > under general anaesthetic. I am 99% certain that you will have to go back. > It’s a real money spinner for the doctor. If you check out the following > link you will find that it is an outpatient procedure. > http://www.somnoplasty.com/MDframePC.html > You can also find who their accredited practitioners are. The procedure is > to reduce and tighten the tissue. Always remember that weak tissue grows > back. This procedure will not help you long-term. > Having all these procedures carried out in one go is going to be very severe > on you, also your pocket. > I suggest also that you check out the archives under ‘UPPP’ and you will > find that there have been some terrific reports immediately post UPPP, > however the situation worsens as time goes on. There are no peer reviewed > statistics for the success of UPPP for the post op period of 12/18 months. > Ask your surgeon if he can produce such figures, not his figures but those > that have been properly reviewed. > Brian, you are an adult and can make up your own mind, but at least research > it first. After surgery there’s no going back. > Best of luck, > Dan.
Brain, I’ve had 2 somnoplasty treatments (on both tongue and soft palate) and can tell quite a bit of difference. It is an outpatient procedure, which doesn’t leave the external scarring that a uppp does (and is supposedly the reason for apnea relapse.) I would recommend trying somnoplasty first, as it is the least invasive procedure with the fewest risks as well. If you want to know more about it, feel free to email me. Good Luck, Don
Response:
"Brian Bebeau" <BrianBeb…@worldnet.NOSPAMatt.net> wrote in message
news:evdVc.28455$cT6.22031@fe2.columbus.rr.com… – Hide quoted text — Show quoted text -> D. Smyth wrote: > > Hi Brian, > > Tonsillectomy, if they are large and causing problems will certainly do you > > know harm (except that all surgery can be dangerous). For me the UPPP is a > > big no no, as is somnoplasty which is purely a means to have you back to his > > surgery a couple of times with a nice fat fee for each visit. > Actually, because I’d be having all three at once, I’d be under general > anesthesia, so he’d be able to do all 5 treatments at once. I wouldn’t > have to go back.
(SNIP) Brian, I think that you may have been misled. Somnoplasty is seldom a one off treatment and is usually carried out at the Doctor’s surgery rather than under general anaesthetic. I am 99% certain that you will have to go back. It’s a real money spinner for the doctor. If you check out the following link you will find that it is an outpatient procedure. http://www.somnoplasty.com/MDframePC.html You can also find who their accredited practitioners are. The procedure is to reduce and tighten the tissue. Always remember that weak tissue grows back. This procedure will not help you long-term. Having all these procedures carried out in one go is going to be very severe on you, also your pocket. I suggest also that you check out the archives under ‘UPPP’ and you will find that there have been some terrific reports immediately post UPPP, however the situation worsens as time goes on. There are no peer reviewed statistics for the success of UPPP for the post op period of 12/18 months. Ask your surgeon if he can produce such figures, not his figures but those that have been properly reviewed. Brian, you are an adult and can make up your own mind, but at least research it first. After surgery there’s no going back. Best of luck, Dan.
Response:
> Actually, because I’d be having all three at once, I’d be under general > anesthesia, so he’d be able to do all 5 treatments at once. I wouldn’t > have to go back.
chances are you would have to go back for "revisions" when it doesn’t work as well as they say it will > I’ll definitely be calling my sleep doctor for his opinion. I remember > some > people on this group saying autopap doesn’t actually work too well. > Does anyone have direct experience with one?
I don’t recall people saying that as a general statement, it’s true that different autopaps work differently for different people and there are pros and cons to using all three types of xPAP machine. For some people autopap is an excellent solution, for others (eg, those who have apnea but don’t snore) certain types of autopap are pretty much useless – so you can’t place it in one "basket" it needs to be addressed on an individual level. > Thanks for the link, very interesting. The thing I’ve noticed though, > is that most sites that mention UPPP or other surgeries approach it from > the position the patient wants to get rid of or have an alternative to > CPAP. That’s not my case, I don’t care if I still have to use CPAP after > it, I just want it to make the CPAP work *better*.
unfortunately UPPP isn’t a way to make sure cpap works better and carries with it the risk that cpap will no longer work at all. — Beth in Australia (I am not a qualified medical professional and unless I quote sources anything posted by me is my opinion only and you should always check with your doctor) ============================================= Sleep Disorders Newsgroup FAQ Website http://talhost.net/sleep Newsgroup archives http://www.talhost.net/sleep/archives.htm =============================================
Response:
Operations like the UPPP make CPAP work WORSE, and make them harder to tolerate, so says my sleep doctor. AutoPAP or retitration make a whole lot more sense than surgery, especially since you tolerate CPAP well. Further, if you’re having problems ("it just doesn’t do enough for me"), then I’d check into other problems. How does this issue manifest for you? How do you describe the problems you’re still having? Gary (like I said elsewhere tonight, we’ll help as much as we can) Rimar "Brian Bebeau" <BrianBeb…@worldnet.NOSPAMatt.net> wrote in message
news:evdVc.28455$cT6.22031@fe2.columbus.rr.com… – Hide quoted text — Show quoted text -> D. Smyth wrote: > > Hi Brian, > > Tonsillectomy, if they are large and causing problems will certainly do you > > know harm (except that all surgery can be dangerous). For me the UPPP is a > > big no no, as is somnoplasty which is purely a means to have you back to his > > surgery a couple of times with a nice fat fee for each visit. > Actually, because I’d be having all three at once, I’d be under general > anesthesia, so he’d be able to do all 5 treatments at once. I wouldn’t > have to go back. > >>Now keep in mind that I use a CPAP and don’t mind it. I have very > >>good compliance, it just doesn’t do enough for me. > > If it does some of the job, would a fresh look at this therapy, say autoPAP, > > BiPAP do any good? > I’ll definitely be calling my sleep doctor for his opinion. I remember some > people on this group saying autopap doesn’t actually work too well. > Does anyone have direct experience with one? > > In Ireland Provigil is in use with patients who are CPAP compliant > and still > > suffer from Excessive Daytime Sleepiness, until such time as they can sort > > out that problem. In the short term it might help. > That sounds about right. It does help, but I really don’t want to take > it for a long time. > > Try http://www.isat.ie/isat_faqs.htm > > There is a good section on most forms of surgery, with approx success > > rates. > Thanks for the link, very interesting. The thing I’ve noticed though, > is that most sites that mention UPPP or other surgeries approach it from > the position the patient wants to get rid of or have an alternative to > CPAP. That’s not my case, I don’t care if I still have to use CPAP after > it, I just want it to make the CPAP work *better*. > > Best of luck, > > Dan. > Thanks for the suggestions. All the responses have been informative. > Brian Bebeau
Response:
D. Smyth wrote: > Hi Brian, > Tonsillectomy, if they are large and causing problems will certainly do you > know harm (except that all surgery can be dangerous). For me the UPPP is a > big no no, as is somnoplasty which is purely a means to have you back to his > surgery a couple of times with a nice fat fee for each visit.
Actually, because I’d be having all three at once, I’d be under general anesthesia, so he’d be able to do all 5 treatments at once. I wouldn’t have to go back. >>Now keep in mind that I use a CPAP and don’t mind it. I have very >>good compliance, it just doesn’t do enough for me. > If it does some of the job, would a fresh look at this therapy, say autoPAP, > BiPAP do any good?
I’ll definitely be calling my sleep doctor for his opinion. I remember some people on this group saying autopap doesn’t actually work too well. Does anyone have direct experience with one? > In Ireland Provigil is in use with patients who are CPAP compliant and still > suffer from Excessive Daytime Sleepiness, until such time as they can sort > out that problem. In the short term it might help.
That sounds about right. It does help, but I really don’t want to take it for a long time. > Try http://www.isat.ie/isat_faqs.htm > There is a good section on most forms of surgery, with approx success > rates.
Thanks for the link, very interesting. The thing I’ve noticed though, is that most sites that mention UPPP or other surgeries approach it from the position the patient wants to get rid of or have an alternative to CPAP. That’s not my case, I don’t care if I still have to use CPAP after it, I just want it to make the CPAP work *better*. > Best of luck, > Dan.
Thanks for the suggestions. All the responses have been informative. Brian Bebeau
Response:
Hi Brian, "Brian Bebeau" <BrianBeb…@worldnet.NOSPAMatt.net> wrote in message
news:MpSUc.23900$cT6.20084@fe2.columbus.rr.com… – Hide quoted text — Show quoted text -> Hi all, > I haven’t had time to keep up with this group much lately, but you > gave me good advice before, and I’m hoping you can do so again. > I’ve had my CPAP since 1996. I have a severe case of sleep apnea and RLS > to boot. The CPAP has helped, enough to make it worth using, but it’s > never been the panacea for me as it seems to be for some people. I’m > still having major problems with daytime sleepiness. I tried a bunch > of medications to calm the RLS, because that’s what my sleep doctor > thought was the problem. Nothing worked. I changed doctors last year, > and this one has been trying other things. I had a sleep study a couple > months ago, and my sleep doctor has declared that I have "uncontrollable > sleep apnea". I still seem to have about 15-20 apnea events an hour > no matter what the pressure (it’s currently 13). He sent me to an ENTa > because I couldn’t get my nasal passages unclogged with Flonase or > Rhinocort. > I saw the ENT today. After looking at my throat for 30 seconds, he > wants to do a UPPP/tonsillectomy/somnoplasty.
A very quick decision on his part, particularly when its your body he’s making the decision on. I would be very afraid of anyone making that type of decision after a quick glance down your throat. Tonsillectomy, if they are large and causing problems will certainly do you know harm (except that all surgery can be dangerous). For me the UPPP is a big no no, as is somnoplasty which is purely a means to have you back to his surgery a couple of times with a nice fat fee for each visit. The only published figures that I can come up with on the UPPP is a 50% improvement in 50% of the cases. A friend of mine puts that at about 18/20% success, and these successes appear to be most prevalent in sufferers of mild apnoea. If your apnoea (as you stated in the 2nd paragraph) is severe then if you are one of the lucky ones with a 50% improvement, then you will still need CPAP pot operatively and there is a real danger that you will not be able to use CPAP. The other problem with the UPPP is that you may feel terrific relief for a number of months post operatively. This relief can last for up to and over 12 months in some cases, but unfortunately the apnoea comes back, in some cases it never goes away, just the snoring stops. I had this procedure carried out in 1994, by a very eminent ENT surgeon. It didn’t work and thankfully he referred me to a sleep specialist and I was able to use CPAP. The procedure hasn’t changed that much in 10 years, maybe the method, but it still involves the same tissue being removed. If UPPP doesn’t work you could be looking at a tracheotomy, if you can’t use CPAP. The UPPP is because he > can’t even see my uvula, because I have "hooding" on my upper palate. > The tonsillectomy is because I have unually large tonsils (doctors > have commented on this before). The somnoplasty is because I have an > unusually large tongue (my dentists always complain about this). > They’ve already scheduled the surgery for next Wedsnesday unless I > cancel.
While having the UPPP my surgeon also took ‘a few slices’ off the base of my tongue, as I too have a large tongue. Didn’t work either. Somnoplasty is unsuccessful (I believe) also. Consider that Somnus tecnologies ‘licence’ certain practitioners, who purchase’ their machines to carry out this procedure. On this side of the pond it is only in use in private medicine. Can they give you any guarantees, or will they refund your fees if it doesn’t work….I think not. > Now keep in mind that I use a CPAP and don’t mind it. I have very > good compliance, it just doesn’t do enough for me.
If it does some of the job, would a fresh look at this therapy, say autoPAP, BiPAP do any good? Surgery is not > the first resort. Will the surgery actually do anything for me, > considering my circumstances? Even if I still have to keep using > the CPAP, that’s okay, as long as I *stop falling asleep during the > day*.
In Ireland Provigil is in use with patients who are CPAP compliant and still suffer from Excessive Daytime Sleepiness, until such time as they can sort out that problem. In the short term it might help. I had remembered reading here some time ago, people saying > the tissue would grow back, but he says it won’t. Is there a > particular type of person this surgery would actually be good for?
UPPP has proved successful in stopping snoring in patients who do not have sleep disordered breathing, and maybe in those with very mild apnoea. > I’m thinking of getting a second opinion because he seemed to be > in quite a hurry to do this.
Once again I doubt if they will refund your fees in the event of failure. I don’t know your age, but a tonsilectomy on its own gets tougher the older you get. Any advice, tips, URLS, opinions, > whatever, are welcome.
Try http://www.isat.ie/isat_faqs.htm There is a good section on most forms of surgery, with approx success rates. FWIW, and I am anti surgery (and don’t apologise for it) I would suggest having the tonsillectomy and if your septum is any way deviated or blocked to have it straightened. Allow yourself time to heal and try the CPAP route again. Possibly another sleep study when the swelling etc has gone down and have your sleep doc give you something to help the EDS while you are sorting out that problem. If going down this road you must give firm written instructions to the cutter to leave your uvula and soft palate alone. Just the tonsils. Personally, from what you have said, I don’t like his attitude. Rushing something like this is not a good idea. Keep us informed, one way or the other. We won’t bite………….well at least I won’t 
Best of luck, Dan.
Response:
"Brian Bebeau" <BrianBeb…@worldnet.NOSPAMatt.net> wrote in message
news:MpSUc.23900$cT6.20084@fe2.columbus.rr.com… – Hide quoted text — Show quoted text -> Hi all, > I haven’t had time to keep up with this group much lately, but you > gave me good advice before, and I’m hoping you can do so again. > I’ve had my CPAP since 1996. I have a severe case of sleep apnea and RLS > to boot. The CPAP has helped, enough to make it worth using, but it’s > never been the panacea for me as it seems to be for some people. I’m > still having major problems with daytime sleepiness. I tried a bunch > of medications to calm the RLS, because that’s what my sleep doctor > thought was the problem. Nothing worked. I changed doctors last year, > and this one has been trying other things. I had a sleep study a couple > months ago, and my sleep doctor has declared that I have "uncontrollable > sleep apnea". I still seem to have about 15-20 apnea events an hour > no matter what the pressure (it’s currently 13). He sent me to an ENTa > because I couldn’t get my nasal passages unclogged with Flonase or > Rhinocort. > I saw the ENT today. After looking at my throat for 30 seconds, he > wants to do a UPPP/tonsillectomy/somnoplasty. The UPPP is because he > can’t even see my uvula, because I have "hooding" on my upper palate. > The tonsillectomy is because I have unually large tonsils (doctors > have commented on this before). The somnoplasty is because I have an > unusually large tongue (my dentists always complain about this). > They’ve already scheduled the surgery for next Wedsnesday unless I > cancel. > Now keep in mind that I use a CPAP and don’t mind it. I have very > good compliance, it just doesn’t do enough for me. Surgery is not > the first resort. Will the surgery actually do anything for me, > considering my circumstances? Even if I still have to keep using > the CPAP, that’s okay, as long as I *stop falling asleep during the > day*. I had remembered reading here some time ago, people saying > the tissue would grow back, but he says it won’t. Is there a > particular type of person this surgery would actually be good for? > I’m thinking of getting a second opinion because he seemed to be > in quite a hurry to do this. Any advice, tips, URLS, opinions, > whatever, are welcome. You all gave me good advice about switching > to the Breeze headgear a couple years ago, so I’m hoping for more. > Thanks. > Brian Bebeau > Remove NOSPAM from addr to reply.
The chances are good that if you go through with the UPPP you wont be able to use a CPAP later. I don’t care for those odds, do you? One thing you ought to be doing is asking for an autopap. Resmed make good ones for example. You may find that the autopap, which ramps pressure up per event and thus changes to meet the need of individual events is exactly the ticket. Try that before an operation. If it doesn’t work, your only other viable choice is a tracheostomy but learn about what can happen when you have one before getting it done.
Response:
Brian, I have had all three of those procedures and the results were excellent for ME. YMMV. About 18 months ago I did the UPPP, tonsils and had a deviated septum corrected with nasal polyps removed and tubinates shrunken. When I woke up in recovery I could already feel the difference and over time it got even better. The only painful post op part of the procedure was the tonsils which hurt for a couple of weeks but was manageable. The UPPP and nasal work were virtually painless. I sleet better and longer, do not feel tired or spaced out during the day and my snoring was significantly reduced. That being said, A sleep study at the 1 year mark showed substantial improvement except during REM sleep when apnea episodes still occured at a potentially dangerous level. To work on that, I underwent a genioglossus tongue advancement plus somnoplasty about 10 days ago. Very little post op discomfort. Within a couple of days my wife reported that I am not snoring at all and at most have a little heavy breathing at times. I am sleeping well and feel good all day. I know that some in this group are dead set against these procedures and their opinions have merit too. However, if a pipe (airway) is clogged as mine was and yours is, the best way to open it is to unclog it. That’s what surgery can do. Keep in mind that there is no cure for sleep apnea – just steps for improvement. In my case the improvement has been excellent and I sleep well without the use of an appliance. As I travel a lot the CPAP was not an attractive alternative for me. I felt that the risks associated with surgery were worth the chance that I would get substantial improvement to at least get out of the "danger zone." My wife is sleeping better too. It was definitely worth it and I would do it again! "Brian Bebeau" <BrianBeb…@worldnet.NOSPAMatt.net> wrote in message
news:MpSUc.23900$cT6.20084@fe2.columbus.rr.com… – Hide quoted text — Show quoted text -> Hi all, > I haven’t had time to keep up with this group much lately, but you > gave me good advice before, and I’m hoping you can do so again. > I’ve had my CPAP since 1996. I have a severe case of sleep apnea and RLS > to boot. The CPAP has helped, enough to make it worth using, but it’s > never been the panacea for me as it seems to be for some people. I’m > still having major problems with daytime sleepiness. I tried a bunch > of medications to calm the RLS, because that’s what my sleep doctor > thought was the problem. Nothing worked. I changed doctors last year, > and this one has been trying other things. I had a sleep study a couple > months ago, and my sleep doctor has declared that I have "uncontrollable > sleep apnea". I still seem to have about 15-20 apnea events an hour > no matter what the pressure (it’s currently 13). He sent me to an ENTa > because I couldn’t get my nasal passages unclogged with Flonase or > Rhinocort. > I saw the ENT today. After looking at my throat for 30 seconds, he > wants to do a UPPP/tonsillectomy/somnoplasty. The UPPP is because he > can’t even see my uvula, because I have "hooding" on my upper palate. > The tonsillectomy is because I have unually large tonsils (doctors > have commented on this before). The somnoplasty is because I have an > unusually large tongue (my dentists always complain about this). > They’ve already scheduled the surgery for next Wedsnesday unless I > cancel. > Now keep in mind that I use a CPAP and don’t mind it. I have very > good compliance, it just doesn’t do enough for me. Surgery is not > the first resort. Will the surgery actually do anything for me, > considering my circumstances? Even if I still have to keep using > the CPAP, that’s okay, as long as I *stop falling asleep during the > day*. I had remembered reading here some time ago, people saying > the tissue would grow back, but he says it won’t. Is there a > particular type of person this surgery would actually be good for? > I’m thinking of getting a second opinion because he seemed to be > in quite a hurry to do this. Any advice, tips, URLS, opinions, > whatever, are welcome. You all gave me good advice about switching > to the Breeze headgear a couple years ago, so I’m hoping for more. > Thanks. > Brian Bebeau > Remove NOSPAM from addr to reply.
Response:
Hi all, I haven’t had time to keep up with this group much lately, but you gave me good advice before, and I’m hoping you can do so again. I’ve had my CPAP since 1996. I have a severe case of sleep apnea and RLS to boot. The CPAP has helped, enough to make it worth using, but it’s never been the panacea for me as it seems to be for some people. I’m still having major problems with daytime sleepiness. I tried a bunch of medications to calm the RLS, because that’s what my sleep doctor thought was the problem. Nothing worked. I changed doctors last year, and this one has been trying other things. I had a sleep study a couple months ago, and my sleep doctor has declared that I have "uncontrollable sleep apnea". I still seem to have about 15-20 apnea events an hour no matter what the pressure (it’s currently 13). He sent me to an ENTa because I couldn’t get my nasal passages unclogged with Flonase or Rhinocort. I saw the ENT today. After looking at my throat for 30 seconds, he wants to do a UPPP/tonsillectomy/somnoplasty. The UPPP is because he can’t even see my uvula, because I have "hooding" on my upper palate. The tonsillectomy is because I have unually large tonsils (doctors have commented on this before). The somnoplasty is because I have an unusually large tongue (my dentists always complain about this). They’ve already scheduled the surgery for next Wedsnesday unless I cancel. Now keep in mind that I use a CPAP and don’t mind it. I have very good compliance, it just doesn’t do enough for me. Surgery is not the first resort. Will the surgery actually do anything for me, considering my circumstances? Even if I still have to keep using the CPAP, that’s okay, as long as I *stop falling asleep during the day*. I had remembered reading here some time ago, people saying the tissue would grow back, but he says it won’t. Is there a particular type of person this surgery would actually be good for? I’m thinking of getting a second opinion because he seemed to be in quite a hurry to do this. Any advice, tips, URLS, opinions, whatever, are welcome. You all gave me good advice about switching to the Breeze headgear a couple years ago, so I’m hoping for more. Thanks. Brian Bebeau Remove NOSPAM from addr to reply.
