Help Robert breathe, swallow, sleep
[THIS IS A TRUE STORY.]
[A REAL-LIFE HORROR STORY.]
[AND IT COULD HAPPEN TO ANYONE.]
But today, you could can make it much less scary. In fact, you could be an angel, sharing light through the darkness.
It's nice to meet you. My name is Robert, but please call me Rob.
I was featured in print/press, as a cover page article of the San Diego Reader, the online version of which can be viewed here: http://www.sandiegoreader.com/news/2016/jul/06/cover-empty-nose-syndrome/#
I am agonized by unrelenting physical suffocation, inability to chew and swallow normally, constant pain, and restless, un-restorative sleep as a consequence of nasal and jaw surgery meant to treat Obstructive Sleep Apnea (OSA). "Empty Nose Syndrome" is one of the diagnoses for the physical nasal suffocation, which can be no better described than as hell on earth.
As if insult to injury, the jaw surgery pulled my jaw in such a way that it is pulling on my neck muscles excessively. My neck muscles, in turn, are lifting my left collarbone (clavicle), acting as a fulcrum or lever that causes my breastbone / sternum / pectus / xiphod process to indent inward into my body. Basically, my body is acting as a counterweight upon itself! I progressively feel the physical sensation of being crushed as if someone were standing on my chest and making it hard to breathe. Objectively, it is doing so: my lung capacity is lowering, my breastbone is putting pressure onto my heart, and this makes me easily tired especially when I exert myself. It is likely that it is worsening the underlying Sleep Apnea.
[ironically, although this option to address the chest issue was offered, my insurance was not accepted and I do not have the money to do it "out of pocket," so I am at square one]
This situation is ruining my life. And will continue to do so – my body will continue working against itself and making everything ever worse until it is fixed. I cannot do this alone, but I can with your help.
I have been referred around the United States hopelessly; the case is sub-specialized and my only options at this time seem to be international. Well, Mom always did say that I was special. Heh.
Efforts to seek care for this have been very expensive: Doctor's appointments, transportation, travel, lodging.
My insurance will NOT cover much of these costs, and I am not rich at the moment. I cannot get out of this nightmare alone, especially because I have extreme trouble concentrating, quickly becoming drowsy when sitting still, physical exhaustion to the point that I generally want to just lay on the floor and sleep.
Yet, I do not have the ability to just “sleep this off” and see a better day the next, something that many people, perhaps even those reading my story, may take for granted.
I can never, ever breathe right, no matter what – whether sleeping or awake. In fact, when I try to sleep, the suffocation becomes even more unbearable because there is nothing able to distract me from the fact that I of course physically have to breathe – the only time we humans get to escape from that is when we're no longer alive (in which case, your last gasp is an inhale)! Imagine if the very thing you need to live – your breath – made you panic.
The combination of physical suffocation and Sleep Apnea make for my sleep being very fragmented. Nightmares frequently occur.
Due to jaw surgery meant to make the sleep problem better (which all told, it didn't, ironically), I have difficulty with chewing and swallowing to the point that I cannot even properly swallow my own saliva effectively, meaning that I am having to consciously swallow liquid pooled in the back of my throat all day long, over-straining my neck muscles and exacerbating the underlying problem.
PLEASE, please do what you can to help me get my health, and life back.
What follows is a narrative of what I have been through if you'd like more detail. Please consider helping improve my life by donating today by clicking the “Donate Now” button on the right side of the GoFundMe page. I am happy to communicate directly with you and to answer any questions you may have. I am grateful for all donations!
So, you have Obstructive Sleep Apnea:
Wanting to get normal rest and not be sleeping your life away, yet unable to use CPAP (Continuous Positive Airway Pressure), you get a nasal surgery:
All good, right?
Wrong. Now, you're stuck never, ever being able to breathe properly. Your sleep is made SIX TIMES worse:
Your nasal diagnosis? "Empty Nose Syndrome (ENS)," I kid you not.
It is a surgically-created (iatrogenic) condition, which basically amounts to your having a crippled nose, devoid of normal function, normal aerodynamics, and proper sensation.
Whatever name you call it, you have no choice other than to fix the bad nose job. You know this. Every excruciating breath reminds you, never lets you forget. You can't escape your own breath, as much as you want to be able to run out of your own body and scream. Heck, you want to scream but all that does is hurt your neck after jaw surgery and maybe even give you lockjaw (I've tried, and insult to injury didn't feel particularly cathartic).
Edvard Munch's painting, "The Scream," sums up your daily hell quite nicely.:
An entry in Munch’s diary, dated 22 January 1892, recorded the inspiration for The Scream: “I was walking along the road with two friends – the sun went down – I felt a gust of melancholy – suddenly the sky turned a bloody red. I stopped, leaned against the railing, tired to death – as the flaming skies hung like blood and sword over the blue-black fjord and the city – my friends went on – I stood there trembling with anxiety – and I felt a vast infinite scream through nature.”
...Yep, sounds about right.
You fight like hell to get the bad nasal surgery fixed.. but you're told the now-worsened Sleep Apnea and breathing are "unrelated."
No way, Jose. They're related. You know it in your gut. Just like no one else being able to "see" that you have massive headache (especially when you're trying to have pride through it), yet you know you still have it, right? It'd be insulting if someone suggested, “you seem fine.”
You've got no choice: the whole situation is unbearable to you. You need to do something – anything – but the options you are given are cruel:
1a. Can you tolerate CPAP (Continuous Positive Airway Pressure) for the Sleep Apnea itself? No. Especially not after bad nasal surgery – it feels like it might as well be a leaf blower right in your face. Or sticking your head out of a flying airplane... breathing that way is not easy, nor solving the breathing trouble during the day regardless.
2a. Do you want a tracheotomy, a hole in your throat?
Thanks, but no thanks. Drowning in the shower; choking on food; having constant, serious infections like bronchitis and pneumonia; not to mention a very real risk of losing your voice for life or of literally choking to death from something otherwise minor to most people – facing these risks and potentially being doomed for life – doesn't sound like much fun.
OK. Now pick one:
1b. Fix the bad nasal surgery first with implantation of "bio-engineered" cadaver tissue (ugh), which provides protein structure... a matrix... VOLUME... to your hollowed-out, scarred nasal airway where it was stupidly butchered, so that the airflow (aerodynamics.. laminar flow) is restored to functioning as it should.
...Although innumerable ENTs suggest this option to you, most also unhelpfully add, “but I don't personally do AlloDerm grafts or implants,” and “find someone who can.” Sometimes you are given a name and a paper referral, but most of the time, these Doctors don't know whom is good, nor where to send you. “Be your own advocate” is an apathetic phrase that you begin to hate. One Doctor even suggests finding surgeons on YouTube! Sigh.
2b. Fix the "underlying" sleep problem with a jaw advancement surgery (Maxillomandibular Advancement / MMA). One caveat: if you do this procedure AFTER attempting to fix the bad nasal surgery with AlloDerm implant, the top cut of which would go right through your nasal cavity and through the implants, you are likely to lose those very implants or at the least them becoming infected.
Another caveat: you've got a choice of only ONE surgeon in your hometown for this option (despite there being several other surgeons in town), 'cuz the other ones don't accept your insurance, and your insurance fights against your going anywhere “out of network” even though the ideal option wherein “both” the nasal problem and jaw surgery issues can be addressed “under one roof” are ironically exactly just that: “out of network.”
Having battled your insurance company and them being instructed that they have to pay out of network but it being a moot point because you still have to pick nasal or jaw surgery first (no one is coordinating your care because they are lazy and... um, your insurance sucks)...
You pick jaw surgery first. It seems the most logical (pretty much only?) choice. Congratulations.
That's exactly what I did.
But, um, waitaminute here!
Your insurance doesn't pay for Orthodontic braces (Orthodontia). And your jaw surgeon kinda sorta needs them to hold your teeth in place during jaw surgery. Or surgery cannot proceed. Because your teeth would fall out of your mouth during surgery, pretty much.
After all, the only jaw surgeon who you find who does not have to do Orthodontic braces and can set “arch bars” instead, does not accept insurance at all... and wants a fee upward of $23,000 by cash or cheque.. that's before hospital costs, anesthesiologist, etc. etc! You're told that you'd realistically be looking at somewhere between $50,000 to $100,000. OMIGOD. Jaw drop / fall off.
Do you have $6,800 laying around for Orthodontic braces?
I sure didn't. My family had to help. And they did not have it laying around, either.
Oh, another slowdown: your only-choice hometown jaw surgeon asks you to get a Cone-Beam CT Scan (CBCT) of your jaw so that they can do analysis, but uh, your insurance won't pay for that, either. And they don't budge. You get ballsy and get your OWN "out of network" consult and a Cone-Beam CT Scan that you provide to your jaw surgeon. Almost as if a joke, his office "offers to write the cost off" weeks AFTER you had already given them the scan you had done on your own. Thanks... I think.
Great, so you've had jaw surgery. All better, right? Your sleep is good and everything?
Hahaha... you wish.
Your chewing is now slow, painful; your jaw clicks and pops opening it or biting down (which is bone wearing on bone... never good), your teeth feel like chipped glass – your lower lip will never feel the same thus forever ruining how it feels to kiss – and oh, and did I mention that you can't swallow correctly?
Not even your own saliva. You swallow over and over all day long. You have clear your throat like you have a constant cold. You choke on water intermittently. Water goes up your nose randomly. Also randomly, you accidentally "inhale" water in the stupid shower and choke (aspirate). Seriously, what the heck?
Eating goes from being fun to being a chore. And you STILL have trouble sleeping and breathing.
You've got.. a trifecta! Hooray you.
Your jaw surgeon shrugs:
You try to get the aforementioned nasal implants because you've gotta breathe, eh? – and hoping that they'll help you tolerate the day somewhat.
Insurance stonewalls you.
After a long, long battle to get “Financial Assistance” with the hospital to which you're referred for all that supposed care "under one roof"... you get the nasal implant surgery:
...and it's a botch.
"It was a botch," I wish I were kidding, are the literal words from your surgeon's lips.
Oh. My. God. Seriously?!
Okay...alright.. let's remain optimistic and pragmatic. “So, what do we do next?” you ask him.
“We can try again. Give it 6 to 8 months to heal, do a sinus CT scan, see if there is infection, and if not we can re-attempt.”
And so we do. The way your 2nd implant is attempted be put in is unique – a medical first, you are told. Congratulations, you've twice over been the subject of a medical research paper... and win nada for being a proverbial guinea pig.
This 2nd implant surgery results? ...less than stellar. Not what you nor the surgeon had planned.
So.. you get injections of “volumizing filler” AKA Radiesse in your nose with a VERY long needle. Like almost 3” long. Effectively, with NO anesthesia... and NO anesthetic. You just like that punishment, don't you?
It's incredibly painful; you sweat, whimper, almost blacking out to spare yourself the pain... because in the back of your mind you know that if this idea works, you'll have to do this many, many times in order to stretch the nasal tissue to accommodate another AlloDerm implant.
Your surgeon asks how the injection feels immediately after jabbing your nose. It hurts so bad and your nasal nerves are so jangled that you have to tell the surgeon that you need time for your nose to know up from down (the nose nose.. er, nose knows?).
You sit there alone, still hot, wired from the adrenaline coursing through your veins. You try to slow your shallow breathing as best you can. Try to meditate, if only just for a moment. Calmate. You focus solely on the experience of breathing after this needle was in your nose, making a best effort to not interject expectation into the raw sensation of breathing. Just breathe. Breathe. Yeah.. it's true.. now your nose feels.. pressurized. But plugged. Different, but definitely not right. The best way that you can describe it, is that it feels like you have a piece of dry cardboard stuck in your nose.
The surgeon says, “I don't know what to do” and shrugs. You leave the appointment, disenchanted. In trying to follow up and seek guidance – to discover what the best option is to get your health back – he plays aloof per usual, eventually sending you a “Dear John” letter suggesting other places to go but not actually “hooking you up” to get there:
You don't seem to have much luck:
By the way, you do in fact go to one of the places the Stanford person recommends: Mayo Clinic. You visit from out of state. All seems to be going well.. until you see the ENT.
She offers them making a customized plastic tube for the inside of your nose, and a plastic mouthguard for the back of your throat to help you swallow. Only, you can't actually use it when you're eating, and it could make your teeth shift. Like, shift again, after all the braces and stuff you already went through. Riiiight.
She asserts, “that's all you'll get, no one here will offer anything else, I can speak for everyone at Mayo.”
Without an evident shred of empathy, she deadpans as if she has not a shred of human empathy – as if your being there is a routine appointment for the sniffles or something – “why don't you just live with it?”
Holy sh*t. I cannot believe she just said that.
Let me ask you, kind reader, a question:
How would you imagine that physical suffocation feels all day long... all day, every day, for the rest of your life?
There is no “getting used to it,” believe me, because I've tried. The physical sensation of suffocation amounts to torture. It's like drowning – that feeling of trying to catch your breath, to get one last breath of air – but without the water.
So, thank you, but I'll pass on the idea of "living with it" when it is simply not possible to bear indefinitely. HOW DO WE FIX IT?!
Understandably, you try to get a second opinion while there.. but there are “no second opinions” at Mayo Clinic. If you've seen one Doctor there, you have seen them all. They “share opinions” like zombies.
Did you happen to read the news story about a woman who was held against her will at Mayo? That story was not at all surprising to me given my personal experience of Mayo having played passive-aggressive politics with my care, having abruptly canceled a scheduled procedure (whereupon the surgeon was even surprised and confused as he had never seen that happen before). Even more surprisingly, they persistently ignored, without response, my Primary Care Doctor (PCP)'s referral to their Arizona location (which I have never been to) for another purpose.
When they finally do respond (after I start making my own inquiries of them and being given the run-around), they suggest that I could not get an appointment at their Arizona location because their “internal notes” on their conjoined system with their main location allege that “security had been involved,” which is of course an outright lie. Security had NEVER involved in my case whatsoever, unless they did so in an unscrupulous manner (which would be extremely unprofessional). My tone with Mayo was polite, cordial, and only when needed, assertive. Never unprofessional.
The family in the aforementioned news story received a pre-dated letter from Mayo, just as I did, with precisely the same eerie wording: that they had 'demonstrated' “a lack of trust and confidence in Mayo.”
What is Mayo, a cult? – and if you dare question the cult, you get excommunicated? Scary.
Remember how I knew, deep-down, that the nasal breathing and worsened sleep after the bad nasal surgery were surely and logically interrelated?
It was OBJECTIVELY proven accurate two years after I was trying to tell people what was likely going on dynamically when I (finally) had what is called a Sleep Endoscopy, where the airway is visualized during induced sleep.
It is because I have trouble breathing nasally, that I open my mouth... mouth opening causes my tongue base to collapse more into my throat, leading to my tongue blocking my airway. And this is a vicious cycle. Since I cannot breathe well through my nose and cannot tolerate CPAP, I cannot simply “wear a chin strap” to hold my mouth closed while I sleep. BOTH the nasal and jaw problem need to be fixed, ideally concomitantly.
Imagine if you were telling Doctors what you knew to be true of your own body, TWO years before they realized that you were right all along. “Whoops” should not be a medical term. How much else did they miss?
But eh, what does it matter? You're not really much better now. Your health has been screwed up in other ways even more.
...and on your own. All on your own.
You are told to “be your own best patient advocate” with a smile, a polite pat on the back, and you get the impression that people's empty, meaningless words and gestures at least make THEM feel better.
But you're still miserable. You want to live... not to merely “exist.” Try as you might to summon up the will, you're always exhausted, foggy brained, suffocating and in pain all day long.
With little other choice, you do your best to be courageous and you try every day to muster up the energy and will to have your health restored. After all, without your health, your life is gonna suck. Bad. There is no magical happy med, meditation nor therapy which makes one iota of difference. You know this, because you've tried every one of these avenues as if your life depended on it and they did not correct the root issue of (fixable) anatomic dysfunction.
Your functioning and thus happiness IS contingent upon physical health.
Health IS wealth!
The ONLY thing that will make a real difference.. is the bad surgeries done to you, being somehow repaired.
You need a Doctor who champions your care and perhaps has the right connections to do so, as disgusting as the premise of “having connections” and “health” being in the same sentence actually when you think about what is fair and what is right.
You would think that there are smart, talented, motivated Doctors out there who like complex medical cases, wanting to help. There are. These are the people whom would do you the most justice in your case.
However, sadly, surgeons motivated mainly by altruism and empathy are becoming a rarity in the United States these days. Greed, or at the very least insurance payouts, motivate many surgeons. What more, “avoiding liability” has become a red herring, oftentimes an excuse to justify laziness and apathy.
Oftentimes, the surgeons who have more expertise with complex surgeries/scenarios and whom are most able to help, are the least likely to do here because they generally only accept cash, maybe outstanding insurance, but definitely not crappy insurance. These “cash pay” surgeons general cater to those of wealth; theoretically less likely to “go after them” if more complex surgery goes wrong.
But all you really want is your life back. Is that really so much to ask for?
You wonder if there is a god, and if so, why he's such a jerk to condemn you like this.
I'm still trying to figure that out.
Maybe there's a Hail Mary. I am hoping on my lucky stars that you, today, will be a Hail Mary.
I sincerely wish for there to be more good in the world. I would like to have enough energy and focus so that I may myself be so. If I were not a man of pride with a stubborn desire to not give up on my health and thus on myself, moment by moment as I struggle to breathe and function, doing my best to remain optimistic... I honestly would not be here today. Please take that to heart.
I'm a lover by nature, but also a passionate fighter for what is just, and what is right. My having the opportunity to have my life back through improved health is just, and it is right as I trust you agree.
I am very thankful for your help! Please feel free to communicate and ask any questions you'd like!