jawsurgeryforums.com
General Category => Functional Surgery Questions => Topic started by: erikavs on September 13, 2013, 11:44:41 PM
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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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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/ (http://doctorstevenpark.com/)
Oral Surgeon, Gregg Jacob
http://www.nycoms.com/meetus/jacob.html (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.
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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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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
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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.
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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.
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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.
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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.
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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...
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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.
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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.
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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.
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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/ (http://drstevenpark.com/)
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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.
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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 (http://i2.wp.com/christopherkeelty.com/wp-content/uploads/2013/09/BB.jpg)
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Yes, I agree! I doubt our tongues have gotten bigger :) Our faces, jaws, upper airways are smaller!
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Yeah, trust me I've done it all. Everything. Still have issues with night-time nasal breathing. Was going to get a turbinate reduction via a minimally invasive technique (www.arthrocareent.com (http://www.arthrocareent.com)). I don't see any other options short of an osteotomy with palatal expansion to fix this. I don't think I have an especially narrow palate though so I wonder what is causing this. The daytime symptoms are tolerable and most of the time i can breathe through my nose. I rather have someone punch me in the face every morning and not have to deal with the hangovers that last up until early afternoon.
edit: i should mention I've had my nose scoped and nothing obviously structural other than diffuse swelling. They don't know what to make of it, eg: whether this is allergic or non-allergic rhinitis.
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Do you have Nasal Valve Collapse? Do Breathe Right Strips help? If so, that is a surgical option, and fixing deviated septum. Not everyone winds up with ENS, fortunately, so just do what you need to do and I'm glad you've researched the safest methods.
My nasal breathing was also very screwed up by turbulence from NVC and my airways being blocked by my soft palate. You could see if either of these issues are occurring. I'd just hate to see anyone wind up like me :(
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I don't have allergies, and my issue is a neurological one - nervous system impaired from bad sleep resulting in Vasomotor Rhinitis. Dr Park thinks fixing sleep reduces the nasal issues caused by Vasomotor Rhinitis. I've had that my whole life. I would do anything else but Turbinate Reduction first. I am applying for disability now...it's that bad.
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Here is the link to a new ENS site. Def research ENS before touching your turbinates.
http://sindromenarizvacia.wordpress.com/ (http://sindromenarizvacia.wordpress.com/)
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IF you have any questions about ENS there is an FB public group run by Dr Houser, the only dr in the country who does implants to help ENS. Turbinate tissue will need stem cell technology to regain function, though.
https://www.facebook.com/groups/44406735710/ (https://www.facebook.com/groups/44406735710/)
This one is my group - it's secret
https://www.facebook.com/groups/154585118068642/ (https://www.facebook.com/groups/154585118068642/)
There is an ENS patient forum, too on YUKU
http://guest.fr.yuku.com/ (http://guest.fr.yuku.com/)
Maybe you can email Dr Park for advice or second opinion first. He thinks most nasal surgeries are unnecessary. Def read his articles, too. And fix the sleep issues - they are NOT caused by your nose, most likely. THe nose is a symptom not a cause. VMR can be a result of bad sleep. DO anything else first and just use for now, get through...
I know you may not agree, but I have to say that because my life was ruined by ENS and there is no fix for it.
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Sorry to sound scary. But our medical system is run like a business. They add on unnecessary procedures and don't care about the patients who don't react well :( And since there is no way to test or see the problem, drs deny the situation to avoid malpractice - this is a standard surgery, but it shouldn't be. The tissue can get swollen and stuck that way in some cases like varicose veins, but if you're young, I doubt that it's irreversible. This tissue is like erectile/clitoral tissue and reducing it is somewhat like genital mutilation. It won't work again with Viagra! We patients are trying to get stem cell regenerative therapy...
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So vasomotor rhinitis is a subtype of non-allergic rhinitis and from my understanding usually presents more often with a runny nose. As for something neurological, I believe this without a doubt. If i'm lying in bed anxious that i'm running late (for example), I can literally feel (and hear) my turbinates shrink, due to the sympathetic outflow. Now the question is whether this is an exaggeration of a normal physiological response or completely normal. After all, the fact that at baseline I have so much swelling does not make it a surprise that small changes to blood flow to my turbinates has such a drastic response...
At the end of the day I might try an aggressive workout routine in an attempt to increase sympathetic tone. I believe if I can achieve this I will have at least some improvement to my symptoms.
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From my experience into the depths of neurological problems caused by ENS, sleep is the biggest factor. Exercise helps alot too. Acupuncture. Do all you can to heal your nervous system - and I think structural/dental issues with sleep are a big problem. Dental appliances might show you if you have a crowded airway blocking airflow (that is my original issue, they should never ever have touched my nose). Soft tissue reductions don't always work but they are worth trying, except for turbs. Even meds are better than surgery for turbinates :( Sudafed, Adderall although those won't help you sleep. I have to take them to clear the AM brain fog....
I just worry that you're so much like me, you might have VMR, UARS and could be prone to ENS which I think should be told as a complication for patients with a more hyper nervous system.
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Here is a great article and he has many more on his site! Our issue is UARS
http://doctorstevenpark.com/attention-all-mouth-breathers-5-important-reasons-why-you-must-breathe-through-your-nose (http://doctorstevenpark.com/attention-all-mouth-breathers-5-important-reasons-why-you-must-breathe-through-your-nose)
Also when I google my symptoms I always get Vet sites for Brachycephalic dogs :) YUP! It cracks me up but it's true. I'm like a flat faced dog :)
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I don't know if you are east coast or west? Dr Guilleminault at Stanford or anyone affiliated will be good for UARS and sleep. In Cleveland - Dr Houser is the MAN. NYC - Dr Park or Dr Sclafani. I can ask my groups for a good ENT for a second opinion.
VMR sucks but I think you will find ways to deal until you can fix the underlying issue. Turbinates are just canaries in the coal mine (symptoms)...not the cause. Drs love to just cut out the symptoms and usually it's ok, but I'm f**king disabled now!! So obviously it's not ok in this case...they same the same about sinus surgeries, too. lots of unnecessary stuff.
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Another good post on UARS and nervous system issues in sleep-breathing problems, AM headache
http://doctorstevenpark.com/the-connection-between-migraines-sleep-breathing-problems (http://doctorstevenpark.com/the-connection-between-migraines-sleep-breathing-problems)
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Yeah, it's all enough to make your head spin. Did you have lots of tissue removed? ENS is a rare complication and as far as I understand even more rare with the new ablation techniques.
I wonder if there is a connection between turbinate hypersensitivity and chronic emotional stress. It's all tough to figure out what caused what. It all appears to be a vicious cycle.
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Don't give up. It's not a vicious cycle but it is a complex intersection of systems. That's why they don't understand it well - it's not clearly divided by medical departments and you need a more holistic dr like Dr Park. He has helped me so much. I hope you can read his articles and books. I just would do the least risky things first...Email him if you like! He knows those who get ENS are those with nervous system issues. Any chronic stress will make that worse.
The research is much better than ending up like me.
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I have anxiety and a lot of baseline stress which I'm sure contributes to the heightened sensitivity and probably inflammation levels as well. Funny you mention diet. I plan to do diet shortly that eliminates wheat, dairy, sugars etc. to see if that helps. And I will work on my stress levels. I always wondered why I sleep better and breathe better on vacation!
As for aging, I think life has taken a toll on me. Dark hollows under the eyes... May be the jaw issue or may be sinuses , congestion, UV, who really knows. I wish I knew what started the ball rolling... Stress or sleep?
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I think dairy is considered inflammatory, probably more for some than others - and certainly it causes mucus - and inflammation causes mucus. I'm not overly strict because I eat pretty well and for me, carbs are the big inflammatory evil. I can tell by my digestion....If you have a sensitivity or digestive issue with a certain food group, try taking a break from it for a while.
Coconut milk and almond milk are decent substitutes. Soy milk is ok too - but soy is considered bad for thyroid and hormone issues.
Dan, don't blame yourself - you are doing all you can to get info and figure this out, and it's no small task...they don't make it easy for us to get info on nutrition in our food, medical care, etc. It's been ten years of learning for me...
I think one of the biggest stresses is sleep deprivation from bad sleep. It's just debilitating for me! I am a different person when I can get ok sleep.
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I did quit dairy while recovering from UPPP because it caused too much mucus at first. I recovered well from that surgery and also did acupuncture. Maybe it helped?!
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I have learned alot about nutrition, health and "alternative" medicine from Dr Mercola. His videos are annoying and he is over the top but it's great info.
http://www.mercola.com/ (http://www.mercola.com/)
Also learned alot from Food Babe
http://foodbabe.com/ (http://foodbabe.com/)
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So I looked at that ENS website and there is one glaring issue with the story the guy provides. He stated that his pre-op endoscopy revealed significant turbinate enlargement (I will assume he is referring to the inferior turbinates). Post-op after 2 surgeries an endoscopy revealed that there was "almost nothing there" or something along those lines, necessitating even a CT scan for confirmation.
New techniques should remove hardly any tissue and are done my removing submucosal tissue (to minimally interfere with normal mucosal functioning). Even old techniques involve removing only small amounts of tissue. Did his surgeon(s) botch the surgery? It sounds like he had almost all of his turbinates removed, which would fully explain his symptoms. Not saying this is the case with you, however.
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There is a whole range of people with ENS, from those who've had minimal reduction with the "safest" methods, to those who've had lots removed barbarically. It's so unpredictable, that's the hard thing. There are a bunch of sites - the FB, the Yuku Forum and that new one with testimonials, and others from individuals. The severity ranges all over the map too. But even minimal issues are really annoying and tend to get worse :(
I was lucky that I did not get ENS from my first cautery (rarely done anymore) but the second one caused my symptoms. So, if you are seriously miserable now, and nothing works to reduce the swelling, it may be worth a risk? But if you get any symptoms, just know not to do anything more to the turbinates. I don't know...there are tons of stories out there with RF and submucosal, outfracture, all supposed to be safe. I wish drs studied this so they could know more. I think they are more careful now, but I guess it's just dicey. Maybe talk to your surgeon first and make sure he is very conservative and you can try other things to shrink your turbinates or check for nasal valve collapse or throat tissues that might be blocking your airway at night.
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Most people with ENS did not have alot removed. They got the modern techniques like I did, which only reduce front of the Inferior Turbinates. Many go back to complain and the drs repeated it again - what happened to me.
It's a shame that ENT's deny this outcome, it's about a 20% chance, we think. They spin this as a freak thing...I just think do one thing at a time, try other things first, and if all else fails, this might be worth a risk. It's just so debilitating, even when it's minimal if you already have sleep issues. Usually they are not in the nose.
I'd email Dr Houser for a second opinion...
http://www.metrohealth.org/physiciandirectory/PhysicianDetail.aspx?ID=060046 (http://www.metrohealth.org/physiciandirectory/PhysicianDetail.aspx?ID=060046)
http://www.metrohealth.org/body.cfm?id=2277 (http://www.metrohealth.org/body.cfm?id=2277)
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If you are set on it, then just make sure your dr is conservative and give yourself time to recover. At first you might feel symptoms but they might subside over time. Going back right away they tend to repeat the procedure and that makes it worse. IF you get it mildly there are ways to manage and wait it out - somehow the healing is very long with turbinates.
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Sorry to hear about your situation. Every surgery has it's risks. I understand you had your surgery a while ago, I think doctors today are more privy to and more actively avoid the 'empty nose syndrome' considering how debilitating it can be. So, as always, making sure you trust your doctor is the most important part.
But turbinate reduction can also be very beneficial to many people
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Why is it that no one gets it. Sleep quality and for that matter a persons entire life will be f**ked if they cannot maintain steady nasal breathing. Having nasal breathing resistance is such a frustrating condition to suffer from, I feel for you op. Trying to get recognition/help for this problem is impossible since it is only seen as a minor ailment I can't work out why this.
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I was looking into having a turbinate reduction. I asked my ENT doctor about ENS and he scared me, he said that is more common in countries with cold dry climates. He said if your planning on staying in this country (NZ) it shouldn't be a problem. WTF!
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Thanks, I'm not now. I know how the system works now. Struggling to breathe through the nose does suck big time though, but I do have good days/weeks which keeps me hopeful for the future.
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Update on my situation, which really sucks. I thought ENS and sleep apnea were bad until my palate collapsed after UPPP.
What is UPPP?