UARS???

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UARS???

Postby John32 » Wed Dec 16, 2009 5:35 pm

HEY:

I´VE HAD A HARD TIME WITH SLEEP APNEA SINCE THEY DIAGNOSED IT TO ME. I CAN´T ADJUST TO THE CPAP MACHINE AND STILL SLEEP POORLY. EACH ONE OF MY SLEEP STUDIES AND TITRATIONS HAS SHOWN A DIFFERENT RESULT. SOME OF THEM NOW HAVE EVEN SHOWN NO SLEEP APNEA AT ALL.

MY SUSPICION (NOT MY DOCTORS), IS I WAKE UP EASILY FROM MY BREATHING EFFORTS. I DO FEEL SLEEP APNEA/SOME SNORING IN MY SLEEP SOMETIMES AND SOMETIMES I WAKE UP GASPING FOR AIR. SO I GUESS EVEN IF I HAVE SLEEP APNEA OR FRAGMENTED SLEEP FROM BREATHING EFFORTS/SNORING, THE MACHINES AT THE SLEEP STUDIES DON´T PICK IT UP BECAUSE I WAKE UP FIRST.

SO I DON´T HAVE A DIAGNOSIS YET. I DON´T EVEN KNOW IF I´M USING THE RIGHT MACHINE. I USE A RESMED VPAP ADAPT SV, FOR IN ONE OF MY SLEEP STUDIES THEY FOUND COMPLEX SLEEP APNEA (OBSTRUCTIVE AND CENTRALS).

CAN YOU HAVE UARS (UPPER AIRWAY RESISTANCE SYNDROME) THAT FRAGMENTS YOUR SLEEP JUST AS SLEEP APNEA DOES? IS THIS DIAGNOSABLE BY SLEEP STUDIES OR NOT? I HEARD NOT EVERY SLEEP LAB IS EQUIPED TO IDENTIFY THIS. IS THE TREATMENT FOR UARS THE SAME AS FOR SLEEP APNEA, OR IS THERE A SPECIAL CPAPA AND MASK FOR THIS? I HEARD YOU HAVE TO USE AN ORAL APPLIANCE AT THE SAME TIME WITH THE CPAP MACHINE. IS THIS TRUE?

THANKS FOR ANY HELP,

JOHN.
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Re: UARS???

Postby RAM_Sleep » Wed Dec 16, 2009 5:57 pm

John32 wrote:CAN YOU HAVE UARS (UPPER AIRWAY RESISTANCE SYNDROME) THAT FRAGMENTS YOUR SLEEP JUST AS SLEEP APNEA DOES? IS THIS DIAGNOSABLE BY SLEEP STUDIES OR NOT? I HEARD NOT EVERY SLEEP LAB IS EQUIPED TO IDENTIFY THIS. IS THE TREATMENT FOR UARS THE SAME AS FOR SLEEP APNEA, OR IS THERE A SPECIAL CPAPA AND MASK FOR THIS? I HEARD YOU HAVE TO USE AN ORAL APPLIANCE AT THE SAME TIME WITH THE CPAP MACHINE. IS THIS TRUE?


Yes, UARS can fragment your sleep similar to Sleep Apnea. The results are a bit different because UARS is not typically associated with significant desaturations, however fragmented sleep is fragmented sleep.

It may be true that not all labs are equipped to identify this, however there are clues (on the sleep study data) that would be present. One problem that you MAY have is that if that lab is not equipped to detect the events (RERAs) then associated with that lab may be physicians that do not even look for it. Instead you will have physicians interpret the abnormal amount of spontaneous arousals as sleep environment and/or first night effect.

There is not a special type of CPAP device to correct UARS and treatment options vary. Some physicians have no problem prescribing CPAP whereas others do not feel as though CPAP is an adequate treatment. Plus, I am not certain that insurance comapnies will cover the expenses if UARS is the only diagnosis. I am not positive on this aspect, but thats what I have heard.
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Postby Vicki » Thu Dec 17, 2009 12:30 am

Read sypark's long post on page 3 of this thread.

http://www.apneasupport.org/viewtopic.p ... sc&start=0

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Being defeated is often a temporary condition. Giving up is what makes it permanent.
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That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.
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Postby phoebe368 » Fri Dec 18, 2009 1:16 am

I have had 3 sleep studies in almost 3 years. The first one in 3/2008 showed an AHI of 2 and mild UARS (over 100 arousals). It was done at a reputable hospital. The 2nd one done on 12/2008 at a different hospital showed an AHI of 2 again. I still felt very tired. I recently have a sleep study done at the best sleep disorders clinic in the world – Stanford Sleep Disorders clinic in Palo Alto, CA. It diagnosed me with an AHI of 14 (all hypopneas) and many flow limitations. I saw Dr. Kasey Li who said even though my AHI is low the reason why I am feeling so terrible is due to the flow limitations which are just at disruptive as apneas. Bottom line is, each sleep testing center has different criterion for diagnosing osa which is very annoying. Stanford is the only place I know of that uses the gold standard for testing UARS – a esophageal pressure monitor (PES). UARS is treated the same way as OSA – with cpap, oral appliances, surgery, sometimes both cpap and oral appliance used simultaneously.
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phoebe368

Postby John32 » Fri Dec 18, 2009 1:29 am

HEY:

THANKS SO MUCH FOR YOUR INPUT. I HAVE SEVERAL QUESIONTS NOW. YOU SAY STANFORD WAS SO GOOD AT DIAGNOSING YOUR UARS. DID THEY PRESCRIBE A TREATMENT THAT HAS BEEN SUCCESFUL FOR YOU THERE? WHAT THERAPY OR THERAPIES ARE YOU ON NOW?

IF I WERE TO GO TO THAT SLEEP CLINIC AND PAY AS A PARTICULAR (DON´T HAVE ENSURANCE FOR I LIVE IN SOUTH AMERICA), HOW MUCH WOULD THEY CHARGE ME FOR BOTH SLEEP STUDY AND TITRATION. IF YOU CAN´T TELL ME THIS HERE, PLEAS PM ME. I´M REALLY LOOKING FOR A NEW SLEEP LAB TO GET TESTED IN, FOR I´M NOT COMPLIANT AND I FEEL I´M NOT PROPERLY TREATED.

SO DOES THAT ESOPHAGEAL TOOL TO DETECT UARS HURT? I MEAN, ISN´T IT UNCOMFORTABLE? DO THEY STICK A HOSE DOWN YOUR THROAT OR SOMETHING? ISN´T IT HARD TO FALL ASLEEP LIKE THAT? DID THEY GIVE YOU ANY SLEEPING AIDS THERE?

THANKS.

JOHN.
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Re: phoebe368

Postby RAM_Sleep » Fri Dec 18, 2009 11:04 am

John32 wrote:SO DOES THAT ESOPHAGEAL TOOL TO DETECT UARS HURT? I MEAN, ISN´T IT UNCOMFORTABLE? DO THEY STICK A HOSE DOWN YOUR THROAT OR SOMETHING? ISN´T IT HARD TO FALL ASLEEP LIKE THAT?



I am not sure if id describe it as painful, however it is very uncomfortable. Plus, a lot of shifting around can make it so that it needs to be adjusted through the night. Sleep aides are quite normal for studies that include this measurement.
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Postby sypark » Fri Dec 18, 2009 12:18 pm

John32,

Esophageal manometry, although the current "gold standard" for UARS, is not very practical in most cases. It's been shown in many studies that flow limitation seen via nasal cannula tracings correlates well with esophageal pressures. From my perspective, UARS is a clinical diagnosis, based on the patient's history, upper airway exam, and sleep study results. The treatment is the same as sleep apnea. However, due to increased numbers of arousals, UARS patients tend not to tolerate CPAP as well. I spoke with Dr. Guilleminault (who coined the term UARS) at Stanford about his experiences, and he relayed that although CPAP did help initially, most stopped using it, and now they are addressing it more from a surgical standpoint (since it's a structural, anatomic condition). However, some patient do very well with either CPAP or mandibular advancement devices, and some people use both simultaneously successfully.
Steven Y. Park, M.D.
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Postby drowsydriver » Fri Dec 18, 2009 12:55 pm

Also, can you have UARS AND apnea or would the cpap treatment take care of both? See my "dead end and desperate post above!"
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Postby sypark » Fri Dec 18, 2009 1:03 pm

Yes, you can have both OSA and UARS. Besides the frequent breathing stoppages that last 10 seconds or longer, you can also have frequent micro-obstructions that cause arousals (RERAs) that don't get counted as an apnea or hypopnea. CPAP will help with both, but CPAP titrations in general only address the apneas and hypopneas, and sometimes it'll help with the RERAs. Sometimes CPAP causes more RERAs.
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Dr. Park:

Postby John32 » Fri Dec 18, 2009 1:03 pm

Thanks so much for your input... however, I have more questions, I hope you can answer them:

Do you do surgery for OSA? What type of surgery? I thought surgery for sleep apnea didn´t work in most cases and even made CPAP treatment worse or not efective. Is there any type of structural examination you do to decide if the patient is a candidate for a rather successful surgery for sleep apnea?

Why do you say most UARS patients have a structural problem? I though sleep apnea was mostly a functional problem (tissue collapsing). What makes them different from sleep apnea patients and therefore operable?

I tried using a dental device (which I don´t use cause I felt it didn´t work) at the same time with my CPAP, and it made me leak air through my lips (without opening my mouth). This problem I already have sometimes without the dental device.

I also wanted to talk to you about something. Is the site of the obstruction important in the treatment for OSA? I have noticed several times that my obstruction is right up in my soft palate, for I´ve woken up from sleep with a snore in that area. Plus the mandibular advancement dental device didn´t work for me. Does this mean my site of obstruction is only in my soft palate? Does this make me a candidate for surgery for OSA?

I´ve read about MRI images of the site of the obstrucion. Are these taken while people sleep? Is this type of diagnosis images helpful in the treatment for OSA?

Thanks for any question you can answer...

John.
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Postby drowsydriver » Fri Dec 18, 2009 1:55 pm

You have some really good questions John, I hope you can get them answered. As for me, I'm ready to give up. I don't struggle with my cpap. I use it religiously and apparently it says it 's working but I still feel miserable every day. I guess I'm an enigma. Not getting any help from my physicians. My pulmonologist said, "I don't know why you're still tired....go see your primary doctor." She's great, but can't help beyond Provigil. This is so hard.
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Postby sypark » Fri Dec 18, 2009 3:48 pm

John32,

Although I'm a sleep surgeon, I consider myself an integrative sleep apnea physician first. Sleep apnea is more than just treating a blockage like plumbing. You have to look at the whole person: physical, emotional, psychological and even spiritual. If you start by looking at the family history, down to the patient's birth conditions, geographic location, and ethnic background, you'll see all the factors that contribute to what we describe the end result called obstructive sleep apnea. This is why you have to address the person's dietary, exercise, nutritional, and stress-related needs first. You have to make the patient understand clearly why treating sleep apnea is so important. Having the doctor tell you that you have to treat it won't work. The motivation has to start from within.

There so many myths and misconceptions about sleep apnea surgery, and in most cases, you're asking the wrong question. In one sense, sleep apnea surgery works 100%, but not everyone will choose to undergo a tracheotomy. But what people call sleep apnea surgery usually doesn't work because of the misconception that there's always one area, like the soft palate, that causes obstruction. For a more detailed explanation of the myths and truths about sleep apnea surgery, you can find out more information on my website - I have a detailed, long report. I also go into much more detail why all modern humans have sleep breathing problems in my book.

Over the years, both CPAP proponents and surgery proponents have perpetuated many myths and even falsehoods that continue even in this forum. The bottom line is that whether it's CPAP, surgery, or oral appliances, they all work well to various degrees, but only if applied properly and in the appropriate patients. CPAP is still the gold standard, but if you look at the number of people using CPAP after 3-5 years after starting, I'll bet much less than 20 to 30% are using it on a regular basis. It only works if you're using it. The main problem in most cases is that preparation, follow-up and support by sleep professionals are lacking in most cases. The same problem exists with oral appliances, with various levels of experience within the dental community. It's not so much which device is the best, but which is the best dentist, regardless of the device. The same goes for surgeons. Two different surgeons performing the same operation can have two different results.

The other major problem with sleep apnea surgery is that not too many surgeons understand that obstruction occurs in the entire upper airway, from the tip of the nose to the voice box. If you have nasal congestion, large tonsils and tongue collapse, taking out the tonsils or performing a UPPP won't help. If you address all the appropriate areas of obstruction and do the procedures properly, then your success rates can be up to 80% for soft tissue operations and 95% for major skeletal procedures. If you're in the unfortunate 5% that underwent a skeletal operation, it didn't work for you, but it did work in 95% of others, so it's not fair to say that you should never do it, just because you didn't respond.

The other major myth is that UPPP surgery can prevent CPAP use. It's probably happened to someone somewhere in the world, but as far as I know, there are no studies documenting this. In fact, most studies show that even if an operation doesn't work, CPAP pressures can be lowered, making CPAP tolerance much easier, especially if you undergo nasal surgery to relieve nasal congestion. Somehow, this myth about palatal surgery started to be applied all kinds of surgery, including nasal and tongue base surgery.

If you talk to the pioneers of sleep medicine, they'll all agree that UARS and OSA begins with jaw narrowing. Everyone has muscle relaxation when in deep sleep, but the smaller your airway due to smaller jaws, the more likely you'll obstruct. Obesity and weigh gain come in much later, which only aggravates the problem.

There are various ways of using CPAP and oral appliances, and some people have to experiment with different options.

You'll see various studies on the usefulness of imaging studies or the value of sleep endoscopy to see where the obstruction is happening. What I found many years ago is that what you see in these studies doesn't add anything new compared to doing a good physical exam, especially with the patient lying flat. For some reason, Most ENTs, dentists, and sleep doctors never look at the upper airway in the supine position. There are some elegant studies using pressure sensors showing that the most common area of obstruction after UPPP failure is the tongue base.

Ultimately, my job as a surgeon is to do everything possible to avoid surgery. This is why the vast majority of patients that come to me for surgical opinions are able to go back to using CPAP or oral appliances more effectively, after extensive counseling and management of these various other factors. But if they've exhausted everything and have no other choice, I'll offer surgery, making sure that all the different levels are addressed. There are some patients that still don't respond to surgery, but most patients' lives are changed dramatically of the better, and this is what motivates me to continue to offer surgery, but only as a last resort.

Sorry for rambling.
Steven Y. Park, M.D.
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Postby ApexAZ » Fri Dec 18, 2009 4:54 pm

sypark wrote:John32,

Ultimately, my job as a surgeon is to do everything possible to avoid surgery. This is why the vast majority of patients that come to me for surgical opinions are able to go back to using CPAP or oral appliances more effectively, after extensive counseling and management of these various other factors. But if they've exhausted everything and have no other choice, I'll offer surgery, making sure that all the different levels are addressed. There are some patients that still don't respond to surgery, but most patients' lives are changed dramatically of the better, and this is what motivates me to continue to offer surgery, but only as a last resort.


This is interesting because it always seems like surgeons are commonly described as only ever wanting to solve everything with a knife. It's refreshing to hear a surgeon that tries to avoid it wherever possible.

It's also refreshing to hear about you taking the time to fully examine your patients. I wish my sleep doctor was more like you. He just looked in my throat and sent me on my way, with a normal cpap machine set to 19.
Brian
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Postby John32 » Fri Dec 18, 2009 5:38 pm

OH MY GOD!!!! I´M AN ENIGMA TOO!!!! I ALSO SLEEP LIKE !@#! WITH MY CPAP ON AND EACH ONE OF MY SLEEP STUDIES HAS SHOWN A DIFFERENT RESULT. RAMBLE ALL YOU WANT, DR. PARK ALREADY DID IT JAJAJA I DID TOO.

THANKS FOR YOUR ANWER DR. PARK. IF YOU DON´T MIND I HAVE MORE QUESTIONS, BUT I UNDERSTAND YOU´RE A BUSY MAN AND I´M NOT YOUR PATIENT.

JOHN.
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Postby phoebe368 » Fri Dec 18, 2009 6:55 pm

I did not mean to mislead anyone on the PES monitor used at Stanford. As Dr. Park said it is very uncomfortable for most patients. I had them take mine out after 30 minutes - my eyes kept tearing up, I kept gagging on it and I got severe nasal congestion. The Stanford doc said they rarely use it anymore. I was able to be diagnosed without the PES using the nasal cannula tracings as Dr. Park mentioned. I guess what I meant to say was that after 2 previous studies I was properly diagnosed with a third one done at Stanford after recommendation by Dr. Kasey Li who suggested I try them since they have better testing equipment.
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