Replies to This Discussion

Permalink Reply by Steven Y. Park, MD on May 3, 2011 at 5:47am

Julie, I'm not sure how that myth came to be, but there's no reason why you can't use CPAP, whether or not you had any type of surgery. Unfortunately, the UPPP is still being done without addressing the tongue, so the success rates are only in the 40% range. Once you add a conservative tongue base procedure, it can go higher to about 60%, and if you perform a more aggressive tongue base procedure, it can go as high as 80. Despite the low success rate for the UPPP, overall mortality was found to be the same as CPAP use after 3 years in one study. 40% success for UPPP is probably the same as 40% overall effective CPAP use. Other studies have shown that UPPP can lower CPAP pressure needs. I'm sure there may be rare exceptions to these situations, but you should talk to your sleep doctor about an up to date CPAP titration. 

 

There are many different criteria for oral appliances. If you have mild to moderate OSA, it's more likely to work than severe OSA. It's considered equivalent first line therapy along with CPAP, according to the American Academy of Sleep Medicine. A good sleep dentist can tell you if you'd be a candidate. Good luck!

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Permalink Reply by Dr. Richard Charmoy DMD on May 3, 2011 at 12:39pm

Trying a oral sleep appliance isn't a bad idea. You can use it with your CPAP and decrease the pressure whcih may resolve your issues.

Steven Y. Park, MD said:

Julie, I'm not sure how that myth came to be, but there's no reason why you can't use CPAP, whether or not you had any type of surgery. Unfortunately, the UPPP is still being done without addressing the tongue, so the success rates are only in the 40% range. Once you add a conservative tongue base procedure, it can go higher to about 60%, and if you perform a more aggressive tongue base procedure, it can go as high as 80. Despite the low success rate for the UPPP, overall mortality was found to be the same as CPAP use after 3 years in one study. 40% success for UPPP is probably the same as 40% overall effective CPAP use. Other studies have shown that UPPP can lower CPAP pressure needs. I'm sure there may be rare exceptions to these situations, but you should talk to your sleep doctor about an up to date CPAP titration. 

 

There are many different criteria for oral appliances. If you have mild to moderate OSA, it's more likely to work than severe OSA. It's considered equivalent first line therapy along with CPAP, according to the American Academy of Sleep Medicine. A good sleep dentist can tell you if you'd be a candidate. Good luck!

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Permalink Reply by Chris H on May 3, 2011 at 5:00pm

Hi Julie, Have you read any of Mac d Jones MD SAAN postings on this forum? He has a solution that works for him .........Good Sleep,Chris 

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Permalink Reply by Mack D Jones, MD, SAAN on May 3, 2011 at 7:25pm

Hey, thanks Chris. I appreciate the attaboy. I was thinking about Julie about putting in my two cents. I agree with Dr Park that there should be no reason that you cannot use CPAP. I would like to know what your doctor's explanation is for your inability to use CPAP. It remains the "gold standard" for treatment of OSA. If you read any of my blogs you will find that I prefer APAP with bilevel and when necessary the servo-ventilator for CSAS or mixed OSA and CSA. (trach when all else fails...not as bad an option as they would have you believe...I have one and like it).

You will also note, based on my own personal experience as well as my neurological background,  that I am not a fan of most ENT surgeries mainly because they don't work and have no use for oral appliances since they don't work either. I've discussed this in some detail in previous blogs and in my book, "Deadly Sleep." When I say "they don't work," I mean that they do not obtain an AHI of Zero, which I and others claim is the ultimate goal in successfully treating OSA. Warning: Watch for the word "successful," it means different things to different people.

Read the fine print for the details and you may be surprised. Some claim "90% success rate." but when you look at their definition of "success" it may mean a reduction of your AHI by a few percentage points, but not the elimination of your disease. I have not seen a single study reduce the AHI to 0, and that includes ENT (trach being the exception) and oral appliances.

It seems that there are a lot of docs who think that it's perfectly ok for you to have a few apneas and hypopneas. I don't subscribe to that for reasons that I have detailed previously.

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Permalink Reply by Jo E on May 3, 2011 at 11:10pm

Julie, I had all of those surgeries done a few years ago. The UPPP shouldn't have to be done again if it was done correctly in the first place. I have had two surgeries done on the lower inferior turbinates. The first one was just an in-office surgery. My ENT told me that I had to have more done than that but I was scheduled for another major surgery before I could have any of the other respiratory surgery done. He told me that I had to at least have the in-office turbinate surgery done before I went under general anaesthesia. After the major surgery was done, I had a deviated septum fixed as well work on my sinuses. After that surgery, my CPAP finally worked for me. (Prior to the septoplasty and sinus surgery, my CPAP only helped a VERY SMALL amount.) THen I had the UPPP. Later, I had the other turbinate surgery (out-patient). I was finally freed of my CPAP! My ENT had told me that there were other possible surgeries that could be done on my throat if I needed them, but he didn't recommend them for any but the worst off patients.

I would think if you had the out-patient turbinoplasty done, it shouldn't be likely that you would need to have that done again. If you had the in-office procedure done, you could still need the out-patient surgery. You shouldn't need the UPPP redone if it was done well in the first place. 

 

As for removing more tissue from your throat, that MIGHT be a possibilty. However, you need to have a complete evaluation from a highly skilled ENT to determine if you would benefit from the surgery. He would need to advise you of risks in these surgeries. My surgeon told me that if the UPPP and other surgeries that I had were not enough to deal with my OSA, because of the structure of my nose and throat, I would qualify for the other surgeries, but he did not recommend those surgeries for any but the most severely affected persons. At that time, one of his most seriously affected patients was in the hospital (and would be there for awhile) having gone thru' the most major of all of the surgeries SO THAT HE COULD FINALLY USE CPAP!!! If I have to go back to CPAP in the future, I will be going back knowing that it will actually work for me since I have had so many blockages removed.  

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Permalink Reply by Julie Isom on May 3, 2011 at 11:24pm

I can no longer use the cpap due to aspiration pneumonia.  I actually had a gastric bypass and a repair that removed the fundus of the stomach. I was told at that time that i could not get gerd anymore.  That has not been the case.  Every time the Doc has tried starting the cpap again a lung infection appears.  the middle lobe of the lung does not function anymore and with the fibrosis, asthma and lung hemorrhage, he says it is not worth the risk anymore.  So, i was hoping there was something else that could still be done.

 

Thanks,

 

Julie

Steven Y. Park, MD said:

Julie, I'm not sure how that myth came to be, but there's no reason why you can't use CPAP, whether or not you had any type of surgery. Unfortunately, the UPPP is still being done without addressing the tongue, so the success rates are only in the 40% range. Once you add a conservative tongue base procedure, it can go higher to about 60%, and if you perform a more aggressive tongue base procedure, it can go as high as 80. Despite the low success rate for the UPPP, overall mortality was found to be the same as CPAP use after 3 years in one study. 40% success for UPPP is probably the same as 40% overall effective CPAP use. Other studies have shown that UPPP can lower CPAP pressure needs. I'm sure there may be rare exceptions to these situations, but you should talk to your sleep doctor about an up to date CPAP titration. 

 

There are many different criteria for oral appliances. If you have mild to moderate OSA, it's more likely to work than severe OSA. It's considered equivalent first line therapy along with CPAP, according to the American Academy of Sleep Medicine. A good sleep dentist can tell you if you'd be a candidate. Good luck!

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Permalink Reply by Julie Isom on May 3, 2011 at 11:46pm

Hi.

I replied on the comment from Dr. Park.  Maybe I should give a little more information.  I have used the cpap since 1993.  That is also the year i had all the surgery done at one time because i had to have the tonsils taken out anyway.  It did get significantly better after the surgery.  They were able to lower the pressure on the machine.  Since the pneumonia's began he switched me to an apap without success.  He has just told me that the only thing left for me to try is the mouth appliance and after that i would have to have a trach.  I am absolutely terrified of that prospect.  He also said that the medication for pulmonary arterial hypertension is only used when you can no longer get around.  I would like to avoid a wheelchair.  He also said that these last 2options are my only options right now.  Is there really nothing else left to do? It's like waiting to die a slow death without doing anything about it.  I have been trying to research alternatives to these or even any studies being done, but I didn't find anything.

 

Thank you,

Julie

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Permalink Reply by Mack D Jones, MD, SAAN on May 3, 2011 at 11:54pm

Talk to your doctor about having a tracheostomy. It may or may not be an option for you. I have one and I have had no problems with it. It has been a life saver. I could have it closed or reversed at any time I choose and go to APAP machine, but the trach is so easy to deal with that I prefer staying with it. It's great to breath freely every night. See my blog on trachs, and see what your doctor has to say about it.

Julie Isom said:

I can no longer use the cpap due to aspiration pneumonia.  I actually had a gastric bypass and a repair that removed the fundus of the stomach. I was told at that time that i could not get gerd anymore.  That has not been the case.  Every time the Doc has tried starting the cpap again a lung infection appears.  the middle lobe of the lung does not function anymore and with the fibrosis, asthma and lung hemorrhage, he says it is not worth the risk anymore.  So, i was hoping there was something else that could still be done.

 

Thanks,

 

Julie

Steven Y. Park, MD said:

Julie, I'm not sure how that myth came to be, but there's no reason why you can't use CPAP, whether or not you had any type of surgery. Unfortunately, the UPPP is still being done without addressing the tongue, so the success rates are only in the 40% range. Once you add a conservative tongue base procedure, it can go higher to about 60%, and if you perform a more aggressive tongue base procedure, it can go as high as 80. Despite the low success rate for the UPPP, overall mortality was found to be the same as CPAP use after 3 years in one study. 40% success for UPPP is probably the same as 40% overall effective CPAP use. Other studies have shown that UPPP can lower CPAP pressure needs. I'm sure there may be rare exceptions to these situations, but you should talk to your sleep doctor about an up to date CPAP titration. 

 

There are many different criteria for oral appliances. If you have mild to moderate OSA, it's more likely to work than severe OSA. It's considered equivalent first line therapy along with CPAP, according to the American Academy of Sleep Medicine. A good sleep dentist can tell you if you'd be a candidate. Good luck!

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Permalink Reply by Oswald Abraham on May 4, 2011 at 7:01am

Hi Julie,

I understand you had some procedures done to assist you with snoring and OSA.  

To cut a long story short, I had a major sinus operation many years ago. The condition flared up about three years ago. I have swollen turbinates, for which I refused surgery. I have the occasional sinus problems, so I use prescription nasal drops, and very occasionally I use an anti-inflammatory medication like “Demazin”. I suffer with snoring and sleep apnea OSA. The last major apnea attack I had been almost three years ago. I am now able to control my snoring. By controlling my snoring, I am able to prevent an apnea.

For some medical professionals, if the answer is not in the box, it does not exist outside the box.

I use my inclined, lateral positional pillow. I have been using this pillow for about three years now. The reason my pillow is inclined is this; by having the head, neck, and torso higher than the rest of the body, I am deflecting the angle of gravity to the lower part of my body. This makes my breathing easier. For the same reason, the beds in hospitals and aged care homes are raised for patients with respiratory conditions.

The reason I sleep in the left or right lateral position is, because the loss of muscle tone during deep sleep and the force of gravity allows the tongue and soft tissues in the mouth area to fall sideways or away from the air passage, allowing me to breathe.

The key is to address the comfort of the whole body during sleep, not just the head and neck.

My snoring and apnea problem is mostly a mechanical problem. If I do not use this pillow I will snore and very likely have apneas several times during the night.

I am not sure if my theory and system makes sense to you. I would ask you to give it a serious thought.

Regards

Oswald

http://www.u-sleepwell.com

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Permalink Reply by Mack D Jones, MD, SAAN on May 4, 2011 at 2:15pm

Go to "articles" and type "tracheostomy," then click on "continued" below Mikes comment on tracheostomy (there's probably an easier way, but that's the how I found it). Drawing from my own experience, I'll be glad to answer any questions.

 

Mike C (at the Beach!) said:

Can you post your blog address as I am VERY interested in the option you describe. I have no idea of how it works however & if you breath conventionally during non sleeping times, do you cover it daytime? How do I keep my cats hair from getting into my lungs etc (have 2 22 pound girl cats Lucy & Ethel!). I want a simply solution with NO equipment to wrestle with. I want to be "free" again..............Thanks for any info, public or private! Mike C.

Mack D Jones, MD, SAAN said:

Talk to your doctor about having a tracheostomy. It may or may not be an option for you. I have one and I have had no problems with it. It has been a life saver. I could have it closed or reversed at any time I choose and go to APAP machine, but the trach is so easy to deal with that I prefer staying with it. It's great to breath freely every night. See my blog on trachs, and see what your doctor has to say about it.

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Permalink Reply by Jo E on May 4, 2011 at 10:09pm

Julie, that was an interesting addition - the part about the stomach surgery. I am wondering if positional therapy would help you. I am wondering if sleeping in a somewhat inclined position would help you with the aspiration issue. If it did help, I wonder if you would be able to use some type of PAP machine if sleeping in an inclined position even if you couldn't use it in a supine position. 

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Permalink Reply by Chris H on May 5, 2011 at 3:39pm

Hi Mike, You can go to Dr Jones s posts by clicking on his picture or putting his name in the search box of discussions page. Good Sleep,Chris
.
Mike C (at the Beach!) said:

Can you post your blog address as I am VERY interested in the option you describe. I have no idea of how it works however & if you breath conventionally during non sleeping times, do you cover it daytime? How do I keep my cats hair from getting into my lungs etc (have 2 22 pound girl cats Lucy & Ethel!). I want a simply solution with NO equipment to wrestle with. I want to be "free" again..............Thanks for any info, public or private! Mike C.

Mack D Jones, MD, SAAN said:

Talk to your doctor about having a tracheostomy. It may or may not be an option for you. I have one and I have had no problems with it. It has been a life saver. I could have it closed or reversed at any time I choose and go to APAP machine, but the trach is so easy to deal with that I prefer staying with it. It's great to breath freely every night. See my blog on trachs, and see what your doctor has to say about it.

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