Class I Sleep Apnea/UARS with narrow airway & ENS

[erikavs]

Hi Everyone! I'm so grateful to have found this site!

I'm probably a "special case" because I have no bite issues, but a narrow and crowded airway. I never knew about this because ENT's originally pushed me into a very damaging nasal surgery to "correct" my snoring and sleep issues. They reduced my inferior turbinates and I wound up with Empty Nose Syndrome It destroyed my sleep and my daytime breathing, and I've had implants and other surgeries to mitigate the issues over the past decade. LIfe has been very difficult and abnormal since, but I keep trying to get better.

Two years ago, I moved to very warm, damp climate and my breathing became terrible about a year after the UPPP. At first I thought UPPP and glossectomy would be my miracle cure, but it seems my soft palate stretched out again and started flapping into my airways upon both inhalation and exhalation, blocking my nasal breathing completely. Sadly, the dr blamed my nose again and removed the now-swollen implants and more turbinate tissue, and now my nose is back to its former dysfunction. That surgery did nothing, and I was on the verge of getting a tracheotomy, so my dr (Steven Park, an ENT in NY) did a bunch of tests and we finally figured it out. I am now recovering from an in-office emergency procedure to stiffen my palate, but it's still pretty stuck in my airway. And my tongue is way too large for my mouth...

I have seen an oral surgeon, Dr Gregg Jacob, in NY and paid for lots of fancy imaging...He has little experience with sleep patients or non-orthodontic patients, I guess. Dr Park is mostly guiding him about how this will help me. My breathing right now just sucks, I'm on medical leave from graduate school, and I really need to get back to being a semi-functional person, if possible. My sleep is horrendous, I wake up alot and mornings take half the day to recover from sleep. I sometimes use Adderall because I am so dizzy every morning.

Dr Jacob is concerned about my appearance and the profile image he showed me looked kind of stupid, like I have Duck Lips. Obviously, I'm eager to breathe and not die in my sleep...but I don't want to become more of a freak than I already am (at least not outwardly if possible!) CPAP is impossible due to all the tissue damage and my sensitive nature and shallow sleep. My airway is about 8mm and Dr Jacob says that's not crazy-small, but I obviously have lots of swelling and turbulence, not to mention everything above my neck blocking it...even after tonsil/adenoid removal and tongue base reduction.

Oh, and the kicker is my most recent sleep study showed NOTHING. I used to get moderate sleep apnea...now I guess my arousals are shorter and I just mouth breathe. Dr Park says it's UARS and Stanford recognizes it as a condition, but not insurance. So hopefully insurance will use my sleep endoscopy or my old sleep studies. Maybe I can redo one at Stanford if their tests are better.

I'm just so eager to figure things out and know if insurance will cover. I've been suffocating all year after two nasal surgeries to figure out WTH was wrong with my breathing...besides the obvious horrendous ENS...It just sucks to be going through this setback after a few decent years post-implants.

I'll post my profile for any suggestions. I was just suggested by Dr Jacob to advance 10mm. I realized I'm holding my jaw forward in this pic, which is a few years old, but I obviously still had this issue to a lesser degree before all this soft palate/post-UPPP BS.  You can tell by my tense corner of my jaw! I never realized this is my "resting face" - hopefully not b*tchy resting face hahaha

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[erikavs]

That pic makes me look like I have a bit of an underbite! I actually just can't breathe at all when I bite down firmly. I have perfectly aligned teeth and actually never had to have braces as a kid (I'm sure that will annoy all of you who seem to have suffered so much in those things!! I'm so sorry!!!). Although I have chipped my teeth alot and my gums are kind of messed up from grinding and wearing unsuccessful oral appliances for sleep apnea, bruxism, and jaw expansion (DNA device).

Here is my NY "Team"

ENT and Sleep Specialist, Dr Steven Park - his books and website articles and interviews are great resources about sleep and breathing.
He is basically the only ENT in the country who will treat me at this point, because other doctors screwed me up so much, but the damage is invisible and denied. Well, he and Dr Sclafani, they make life bearable knowing they believe me about ENS and will treat me instead of worrying I will sue them...

http://doctorstevenpark.com/


Oral Surgeon, Gregg Jacob

http://www.nycoms.com/meetus/jacob.html

I just met him, a nice guy, spent lots of time.

He is submitting my case to insurance but I'm terrified I'll wind up appealing or stuck because he pushed me to do a new sleep study I could kill the insurance company. Since when is "unable to breathe day or night" not a diagnosis? I need to have certain sleep apnea numbers? I want to punch a wall thinking about it because I've suffered so much the past ten years, and now this stumbling block. Oh, and the implants I had removed are now a mere 20K because insurance also stopped covering them...God I could not feel less patriotic at this moment even though I'm usually a very positive and patriotic person. Our medical system just screws patients who are hurt in surgery.

[erikavs]

This cartoon is so me...I have ENS and UARS and basically don't exist to insurance and most of the medical world. Yet I can't breathe or go out anymore without wearing stuff to hold my airway open. I might as well be Michael Jackson at this point with an oxygen tank! It's infuriating But better than giving up!

Sorry so long! I'm used to being on patient forums and run one for ENS on FB. Oh, and I also run one for women's hair loss - since another doctor switched my thyroid medication last year to a "natural" version and I lost half my hair as a result! Yeah, it's been an awesome past two years My hair is growing back, thank goodness. I will never be intimidated by another doctor, again, at least. And boy have I met some jerks and idiots! I started writing up a list of how to navigate surgery, do's and don'ts....I guess it's an expertise by now, not by choice, but whatchagonnado?

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[pekay]

I have heard of Dr Steven Park, he seems highly ethical. I remember reading an article/blog entry by him in which he rants about the whole rhinoplasty/septoplasty fad that was going around after all those plastic surgery shows came out (early 2000s). He basically says that the only real way to address sleep apnea related problems is by increasing the size of one's airway.

Regarding your case, you seem to have excellent chin projection which hides your jaw defects quite well

earl25 a poster here had a bsso (lower jaw advancement) with one of those NYComs docs

[erikavs]

Thanks a million for the quick replies!
I'm glad to know that someone else had success with the NYCOMS practice. Dr Park recommended them and I think Dr Jacob was trained by a Stanford person or method. He's on my insurance, at least...and he is concerned with aesthetics, but I just don't know the details of his methods. He seems like a very good doctor and person, he is very professional and warm and Dr Park's recommendations always work well for me, so far.

Dr Park is amazing. I would seriously be LOST without that man. He left his own practice to work/teach at Montefiore in the Bronx, serving a very needy and economically challenged population. He has spent years working with me, through times I was really losing my mind or doubting him. He is awesome and probably some kind of genius regarding sleep and breathing....I would not know about any of this craniofacial stuff without him. His website and interviews and books are awesome resources. He is frank about how screwed up the medical system is, but obviously he has to play by the rules of insurance, etc.

He was the one who taught me about Weston Price's ideas on epigenetics. Basically, we're evolving with increasingly narrow jaws and upper airways, leading to more sleep and breathing problems. OUr tongues are too large for our mouths, tonsils and adenoids get in the way (and they are removing them more now again). This is due to a change in diet, eating habits, breastfeeding, etc. It's fascinating. He admits to staring at people to analyze their faces. Wider jawed people just function better due to better sleep, breathing which lead to better nervous systems and general health. I've seen how poor sleep and breathing affect my nervous system, immunity, and hormones. I'm out of balance right now. No wonder I'm the most shallow sleeper and hyper person I've never slept well from day one. My mom has sleep apnea, and I figured I did too.

No test for large tongue - unless you want a sleep endoscopy - mine revealed my airways are totally sealed up by my soft palate and tongue when i'm on my back, and pretty much the same on my side. And since my nasal breathing is super dysfunctional, I am barely getting air at night.

[erikavs]

You can also check for "scalloping" or marks on the side of your tongue in the morning, esp. If your tongue is oversized, I guess it gets marked up trying to find a position.
I've even tried a "tongue retaining device" called AVEO TSD to keep my tongue from obstructing my airway, but it blocked me from mouth breathing at night (it looks like an adult pacifier, which is weird!). I wish my nose worked at night, otherwise I could maybe use some of these gadgets or machines at night instead of surgery.

obviously, most people thought I was insane to get any more surgery after my horrible turbinectomy outcome (and implants) but I refuse to settle for a mediocre disabled life and not try to get better. Most people with ENS live this way and they can be pretty miserable people if they are severe cases or sleep deprived. ENS causes major sleep issues, but I had them already, so I'm just addressing my original issue (snoring) which was not caused by my nose...

My family totally did not understand the severity of this and not bouncing back well enough, and they have thought I was a hypochondriac until recently with more info on ENS online. I know it's common for medical issues to cause denial. It's just made me more resolved to get better, even if this is a risk and a difficult procedure, and it may not improve things like I hope....but now I'm at a point where I can't even breathe during the day!! So, I was obviously right to try to figure this out, and that feels reassuring even though I've been through hell this year. 

[overbiter]

Hi, you write a lot .
From the pictures you posted I would say that your upper jaw is moderately recessed. Your lower jaw looks pretty normal, but then again you said you were pushing it forward. I think you could tolerate some jaw advancement without it ruining your facial aesthetics. Are you saying that you think your jaws are narrow? To me they look wide enough.

As a non-american I don't understand americans resistance to any form of healthcare that they think is 'socialized'. Especially when you consider that americans are already paying for medicare, one of the most expensive social healthcare systems in the world. If you didn't have so many private companies grabbing dollars from the medicare budget, there would be more than enough money to pay for every americans medical needs. There is zero chance of fixing this problem though because Washington politics is screwed up with all the special interest groups/lobbyists.

[dantheman]

Sorry to hear about your sleeping issues. I can identify with aspects of your story

Do you have a ceph? You'll find that this is one of the most useful investigations to pin point an anatomical problem.

Also, what is the normal range for AP diameter of the airway at it's tightest point? As you pointed out this is only one part of the equation, however.

I also used to snore like crazy. Now I don't snore but breathe heavy. Like you, it takes me half the day to get over the sleep hangovers I get.

[erikavs]

Sorry to write alot! I have been through hell and I've been searching and searching, with few answers and very little help in our medical system. It's been devastating so I really appreciate your advice on what to do. I know my story is long and complicated...

[erikavs]

I don't know all the medical terms yet for jaw anatomy and procedures. (I am an amateur ENT/nasal surgery and sleep expert if you have any questions).
I was just told I measured 8 mm but with ENS I get severe swellling and congestion. It's like Cystic Fibrosis of the upper airway. I would basically die without using saline/neti pot to clear my airway. Mornings are awful.

I don't know what a Ceph is.

[erikavs]

Dantheman, have you had jaw surgery already? Did sleep or breathing improve? I had alot of pictures taken and a 3d imaging, and profile imaging. Dr Jacob said a normal airway is more like 10-12mm? I honestly think what is normal is so subjective...I think drs should listen to symptoms more than text book numbers. In my case my airway is blocked by my tongue and soft palate and I can't really reduce them more than I have already.

[dantheman]

No, but i have a pending consultation. I have tried a few things for sleep, none of which seem to work. I have exhausted all options for fixing my nasal issues. I have baseline swelling in my nose, but lying down at night is enough to push me over the edge where I must sleep with my mouth open to get enough air flow going. Very occasionally for whatever reason I can breathe with my mouth closed at night. Such a frustrating issue while other people take sleep and nasal breathing for granted.

A ceph is a lateral X ray of the skull / neck to show skeletal proportions, airway dimensions etc.

[erikavs]

It sounds like I have had a Ceph - fancy 3D imaging and measurements with Dr Jacob.

For sleep, I have an excellent dr at last - Dr Steven Park has so much good info on his site. He is very holistic and understand sleep and breathing, neurology, endocrine, etc.

My only advice is just don't touch your turbinates in surgery. People with poor sleep have more excitable nervous systems and ENS is more likely. Drs love to add this on to their surgical tab to get paid more...

I think anything you do will help your sleep. I have learned alot over the years so any specific questions, just ask. And def check out DR Park's site - I learned everything I know from him.

http://drstevenpark.com/

[erikavs]

With your nasal issues, have you treated allergies, nasal sprays, all the obvious stuff? I wish I had been told to use Saline/Neti Pot. That is life changing for decongesting naturally without all the side effects of allergy meds, nasal steroid, sudafed.

I am mouth breathing again in sleep too and it's horrible. I'm so sorry you're going through this but I know you will find solutions. Just don't touch your turbinates in surgery. Drs will blame them but they are the brains of your nose. Screwing with them is too risky. They swell but once you fix your other issues, they will be ok. One safe reduction might be ok but it can cause symptoms, too and some people don't get symptoms for years. It just seems better to use sudafed or steroid spray or anything to shrink them while you deal with the anatomical issues.

Soft tissue procedures are much less successful in general than anatomical changes.

It sounds like me, I tried everything for the snoring. I actually slept OK before ENS but just felt tired in the AM and always slept through alarms. Now I can barely sleep through the night due to breathing and I have to take Adderall to function sometimes.

[erikavs]

Overbiter, I agree about the politics and our system. I want to move to Sweden!

http://i2.wp.com/christopherkeelty.com/wp-content/uploads/2013/09/BB.jpg

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