Anyone who's been diagnosed with UARS, could you help me out please.

How did you arrive with that diagnosis, and how has it been dealing with your insurance company?

Tomorrow I'll work on getting into a sleep doc at National Jewish, but from my sleep studies, it looks like I have UARS (posted in sleep studies).

I found out friday that the insurance only authorized my CPAP because the DME company gave it to me before they actually had authorization, and so I'm only authorized for three months.

So many things are better on the CPAP:

My severe peripheral neuropathy of 5 years is almost gone.
All the aches and pains are pretty much gone.
My peripheral edema is gone.
The age spots on my face are going away.
I'm not huffing and puffing just doing simple things (like walking my son to his classroom.)
My night sweats are gone.
No more getting up to go to the bathroom at night.
My heat intolerance is resolving -no longer sweat when I blow dry and curl my hair.
I can exercise again and it's enjoyable.  I no longer come home and go straight to bed.
I don't get so sore after exercise.
My calf muscles are relaxing.  They used to just stay contracted all the time and I couldn't get them to relax.
My morning tremors are gone.
Haven't lost any weight, but dropped two pant sizes.



I can only explain it like this:  I still get tired but my body isn't anymore.

I was so upset on Friday because I don't want to part with my CPAP.  I'm just hoping I can get into a sleep doc who can help me out with the insurance company before they yank the machine.

Does any of this sound familiar to anyone?  We've been trying to figure out what is wrong for 8 years and now that I really feel that we've got it, the insurance company is baulking.

Also, is UARS part of the apnea spectrum, or it's own disease.  I'm confused on that.  Is UARS recognized by the medical community and insurance?

Thanks for any input,

Jamie

Here is a recent thread talking about UARS...  http://www.apneasupport.org/viewtopic.php?t=19067&postdays=0&postorder=asc&start=0

I did not reread it to see how much info in it would be helpful here...I'll let you be the judge

UARS is treated the same as SA.  Your Dr may have to do some convincing and hopefully your Dr will work with you to file appeals etc.

I am curious...the insurance will pull the machine after 3 months?  Or is it a 3 month rental?  Usually insurance companies make you rent machines for a few months then they pay for it in full and you own it outright.  They do this to make sure you are compliant with useage.  My first machine was a 3 month rental.  My second machine was through a different insurance and was a 10 month rental.  I would clarify this...I am thinking this is what they mean by giving you 3 months on it.


_________________
I am A ZOMBIE! 20 years+ undx'd. BiPAP Auto M 14/9. Nasal Swift&F&P Flex Fit 431 Full Face. RLS/PLMD, Primary CNS Hypersomnia, Sleep Paralysis, Parasomnia, Degenerative Disc Disease, Clinical MS, Fibromyalgia, COPD plus other past dx's..what's next?

The DME company says the insurance is baulking at the low AHI and my insurance usually authorizes the three month rental and then purchase, but they are only authorizing three months in my case.

You make a good point though.  I'll also call the insurance company tomorrow.

If they baulk at me, I think I'm getting a handle on this.  AHI was only 1.9 but RDI was 18.  Mild apnea, not qualifying for CPAP, but still sleep disordered breathing whether UARS is recognized or not.

Thank you,

Jamie

Yep..the more you can get a handle on it a better argument you can make...Knowledge is power!


_________________
I am A ZOMBIE! 20 years+ undx'd. BiPAP Auto M 14/9. Nasal Swift&F&P Flex Fit 431 Full Face. RLS/PLMD, Primary CNS Hypersomnia, Sleep Paralysis, Parasomnia, Degenerative Disc Disease, Clinical MS, Fibromyalgia, COPD plus other past dx's..what's next?

You all have been so helpful to me and I'm grateful.

I have an appt. scheduled with the director of the sleep lab at Nat'l Jewish next Monday.

They are having me bring in my machine so they can check for a smart card along with the mask ect. to check fit and the reports from the sleep studies.

They really seem to be on top of everything and I'm hopeful.

Thanks again,

Jamie

i think they need to bill the disorder as RERA's ......not uars.......respiratory effort related arousals...that should be on your sleep study.....it was on mine.

umpwidow,

Unfortunately, insurance companies still use medicare criteria, which defines obstructive sleep apnea as an AHI of 5 or greater, if you have other symptoms. Not RDI (which factors RERAs into the AHI). Different labs still use different criteria. Also, there are different criteria for hypopneas, which can make a huge difference in your final AHI. So technically, you could stop breathing 25 times every hour and if each episode is less than 10 seconds, then your AHI is zero.

I'm not at all surprised by your response to CPAP. You're fortunate that you responded so well, most can't tolerate it due to their hypersensitive nervous systems. Take a look at my long post on the last page that Mrs. RVW recommended on UARS.


_________________
Steven Y. Park, M.D.

jamie i am so thrilled for you.  i know what it is like to finally have the penny drop after many years of searching.  i bet you thought you would never get better, right?  it will be ok, you will get access to a machine somehow.  i can tell you are not going to let anyone "pip you at the post"!  you are in very good hands with the information on this forum about UARS.

so happy for you!  
AK


_________________
"Attitude is a little word that makes a big difference" - Winston S Churchill
Machine: Respironics M Series Pro, 17cm
Mask 1: Respironics Comfortgel nasal
Mask 2: Resmed Quattro full face
37yo female, New Zealand, Mixed SA, AHI 45

Thanks sleepsurfer, Dr. Park, and Kiwi,

The GP is working with their rep at the DME to get a letter to the insurance company to justify the CPAP.

I look forward to the appt with the sleep doc so that I can get the information I need to optimize treatment.

I'm wondering about nighttime cough.  Does anyone else start coughing the minute they lay down?  I do.

I'm also beginning to wonder about my daughter.  She suffered from severe anxiety for years and I thought we had that all under control.  Then last year we had a learning evaluation done and found that her processing speed is extremely low and she was reading 4 grade levels behind.

Now, as I've felt the huge improvement with me, I'm beginning to wonder about UARS with my daughter.  She has a very difficult time going to sleep, she's a side sleeper also, she coughs at night although she doesn't remember it, she has nightmares and we hear her at night yelling, but she has no memory of it, and she has difficulty breathing when she exercises.  She was given an inhaler for exercise induced asthma, but claims it doesn't really help.

The learning center told us that her processing deficiency is hard wired, but I'm beginning to wonder if she doesn't also have some UARS.

I'm also stuck at how to justify a sleep study to the pediatrician and insurance for her.

Thanks,

Jamie

umpwidow,

Don't give up. Your GP and DME's letter should be enough medical justification for CPAP coverage. If they don't cover it, then they'll have to pay a lot more for your care in the future.

It sounds like your daughter has a sleep-breathing problem as well. There shouldn't be any issues in justifying a sleep study. If she has any dental crowding issues, that should be taken care of, as well as any nasal congestion or tonsil or adenoid issues. Anything to help her breathe better period should helps somewhat.  Good luck.


_________________
Steven Y. Park, M.D.

does your daughter have a history of upper respiratory tract infections like colds and tonsillitis?  how old is she and (if you don't mind me asking) what is her weight like for her age and height?  often some of the main signs of sleep disordered breathing in childhood are attention/hyperactivity issues.  i read somewhere that it's thought to be due to the child struggling to stay awake.  stimulants like ritalin and adderall seem to work for many such kids in the short term, but i can see why they are probably not the best solution for a kid with sleep disordered breathing.  i know you mentioned learning issues rather than behaviour issues though.  it must be upsetting to find out she is 4 grade levels behind in reading.  there are some members here who have experience with this stuff.


_________________
"Attitude is a little word that makes a big difference" - Winston S Churchill
Machine: Respironics M Series Pro, 17cm
Mask 1: Respironics Comfortgel nasal
Mask 2: Resmed Quattro full face
37yo female, New Zealand, Mixed SA, AHI 45

Hello Kiwi,

ApneaKiwi wrote:

does your daughter have a history of upper respiratory tract infections like colds and tonsillitis?  how old is she and (if you don't mind me asking) what is her weight like for her age and height?  often some of the main signs of sleep disordered breathing in childhood are attention/hyperactivity issues.  i read somewhere that it's thought to be due to the child struggling to stay awake.  stimulants like ritalin and adderall seem to work for many such kids in the short term, but i can see why they are probably not the best solution for a kid with sleep disordered breathing.  i know you mentioned learning issues rather than behaviour issues though.  it must be upsetting to find out she is 4 grade levels behind in reading.  there are some members here who have experience with this stuff.

She had a lot of ear infections when she was little and tubes at 9 mos, but has been very well otherwise since then.  She doesn't complain of any allergic symptoms.

She's now 14, but the anxiety started at 6.

She's very thin, 50th%ile in height and 25th in weight.

She's never had behavior problems per se, but she's pretty negative (how does one gauge that with a 14-year-old.)

She also complains of tight muscles in her neck.

She'll also cough when she laughs hard as do I.

I guess I'll give a call to the pediatrician for an appt.

Jamie

umpwidow,

Sleep-breathing problems can cause inflammation throughout the upper breathing passageways. I'm not surprised to hear about your daughter's problems. Obviously there may be other reasons for her reading delay, but if she has a sleep-breathing problem, it can definitely aggravate the problem. She's your daughter, so she probably has very similar jaw anatomy. Does she have a high-arched hard palate? (Is the roof of her mouth very high, rather than a gentle curve?) This explains why she likes to sleep on her side only and has all the various breathing problems and muscle tension.

ApneaKiwi,

I may have mentioned this before, but there are many studies that show that a significant number of children with ADHD on medications actually have untreated sleep apnea. They estimate anywhere from 1/4 to 1/3!. Why does a hyperactive child do better on stimulants? Because they're sleepy. Another recent study showed that adenotonsillectomy alone "cured" ADHD in 50% of children with this condition. A more recent study out of Stanford showed that if you combine tonsillectomy with rapid palatal expansion, you'll get synergistic improvement.


_________________
Steven Y. Park, M.D.

Thank you Dr. Park,

You have are a wonderful asset here on the forum.

My daughter is currently in braces.  Her orthodontist is making me my splint for TMJ and he knows about my SDB.  He's the one who recommended the splint only for TMJ as the oral appliance for apnea could exacerbate the TMJ and the CPAP is working for the SDB.

I have an appt w/the pediatrician and our Children's hospital here has a sleep lab if the pediatrician thinks a study is warranted.  If so, then I'll talk to the orthodontist about the palate and how he feels about expansion if warranted.

Thanks again,  I think I've got the plan together now.

Jamie

Jamie, I too would like some sort of splint or device to wear at night to prevent teeth grinding (bruxism) and reduce the pressure on my TMJ.  There is a proprietary device called an NTI that looks promising, but I don't know what it costs or if I'd be able to wear it comfortably.  Anyway you may be interested in looking it up or asking your orthodontist about it.  The inventor claims that ordinary bruxism splints aggravate TMJ problems and migraine.  Some of the forum members here use a dental device along with CPAP to hold the tongue forward, and they seem to find that is better than just CPAP, for them.  I am also considering (if necessary) having a hyoid suspension procedure which is a suture in the back of the tongue that is anchored on both sides, to hold it forward.  Will still use CPAP, but if i can't get the last few points of AHI or RDI down, then I am keeping the procedure in mind.  Steven Park's writings have been an immense help to me.

Steve, thanks for that information. I'm pleased you added it because I wasn't sure of the details so I didn't want to get it wrong.

I find it so sad that kids are on stimulants when they may have SDB, as there is little independent research on the long term effects of these drugs, and it seems plausible to me that they can affect brain function and lead to problems in later life.  They sure have been a great financial success for the manufacturers, and they've made behaviour management easier for teachers and parents, I just wish that parents had the full information available before opting for their use.  Anyway, I have enough work to do getting my own health right.


_________________
"Attitude is a little word that makes a big difference" - Winston S Churchill
Machine: Respironics M Series Pro, 17cm
Mask 1: Respironics Comfortgel nasal
Mask 2: Resmed Quattro full face
37yo female, New Zealand, Mixed SA, AHI 45