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Obstructive Sleep Apnea and Brain Injury

sleep study

Of all the things a woman looks forward to in life, a CPAP machine is not one of them.  cpap mask

Yet this is indeed what lies ahead for me, so I’m leaning on the positive side of shock, and bucking it up for happy visits with the wind goddess.

It has taken a record number of twelve sleep studies to obtain this unpopular, commonly prescribed treatment—an amount of testing so remarkable that even the sleep technicians claim never to have met anyone who had that many sleep studies done before. Each test is rather grueling, a complete disruption of any sleep a person might have, and basically a form of torture in itself. By the 9th test, I refused to have another one.

Somehow, the doctor prevailed, and today I guess you can say that I am glad he did.  It’s been a 3-6 year ordeal.  To tell the truth, I actually cannot wait to get this machine. Yes, it’s the new post-menopause contraption that every chosen woman attempts to make her peace with…and more often for men, the full-face mask that silences snoring. For me, this treatment may very well prove temporary, if I’m lucky enough to improve—or unlucky enough to require further surgery. But having tried the CPAP once before and failed, I’m ready to go it again, for the simple fact that I live every moment as if I cannot breathe. I no longer know the simple human sensation of drawing in a deep breath of fresh air. When I inhale to welcome the day, start a daily yoga routine or catch a glimpse of spring, no air seems to fill me. I no longer have the experience I enjoyed all my life of inhaling oxygen, and here is the reason why:

blog on readingIt seems that when that malfunctioning steel door hit me in the head at breakneck speed back in 2007, it also smashed to smithereens my nose cartilage and sinuses. For years I walked around (or more often, laid around) in excruciating pain–assuming the pain and fatigue were due solely to the torn meninges, fractured skull, and whiplash, which gave me not a small cervical and spinal injury…along with the unrelenting pain of atrophied muscles, resulting in chronic fibromyalgia (which has thankfully pretty much resolved).

Yet all along I really wasn’t taking in nearly enough oxygen, which is obviously vital to healing all of these structures. Looking back now, it seems odd that no one was alarmed. I felt the alarm in my body, in my lungs, and in my inability to breathe. There was a persistent stabbing pain in the lower lobe of my lung. I felt most obstructed in my chest though, and in my face. For maddening days and nights I was left springing up and gasping, “I can’t breathe. Oh, I can’t breathe.” Neither my husband nor I knew exactly what to do.  After all, I had told the doctor. I told all the doctors.

There were times when an Emergency Room visit seemed imminent. It certainly felt like I was suffocating. I wasn’t sure if I really was—or if I was just experiencing remnants of post-traumatic stress from the very freaking hard hit. It was difficult to discern, and more difficult to endure—and to some extent, still is.

What people need to know is that head injury comes with all sorts of complications—not the least of which is other peoples’s perceptions of the ailments. Unfortunately, these perceptions most often qualify as misperceptions. Indeed I kept complaining that my nose hurt, but even the most caring and astute doctors who would look at me baffled, with steady stares and sometimes slanted heads, as if to say, “Maybe you just think your nose hurts.”

It took several years for any doctor to finally recommend me to an ear, nose and throat specialist. Initially after the injury, I bloghad visited an ENT physician directly, because I was sure I had a broken nose. Having had two broken noses prior, I knew what they felt like; there is really no mistaking them. Yet, the first ENT claimed my nose was fine. He was obviously wrong, and this just delayed my recovery, and certainly leaves me with something else to baffle over.

The referred ENT performed a nasal endoscopy that showed a 90% obstruction on one side of my nose, a 60% obstruction on the other. I could tell when they tested me that something was wrong, because even with anesthesia, the insertion of the scope hurt like a really bad word (“mofo”). I was given three or four other breathing tests, and starting to face a new reality about the effects of the horrible incident that happened one day when I was at the peak of health, just trying to help my ailing mom accomplish a little shopping.

blog blink of an eyeThe composite data from the breathing tests was alarming enough for the doctor to put in an immediate order for a CPAP machine for obstructive sleep apnea (OSA). He told me right then I might need two surgeries to correct the problem, but we were going to start off conservative because in his words, I’d “already been through so much.”

So all this time prior, I was deprived of oxygen due to obstruction of the nasal passages from the bleeding, swelling, scar tissue, and broken turbinate bones that resulted from the blow to the face that also caused my brain injury. If there was or is a neurological component, it has yet to be uncovered. At least in the short-term, there was a clearly structural cause that could be remedied, and there is no reason not to continue to be optimistic.

I would have never guessed I had developed a sleeping disorder because I really did not snore (even when I asked others to check to see if I did). However, I also rarely slept, had for the most part stopped dreaming, and had trouble getting going in the morning as well as staying awake, particularly in the car, which made me stop driving for quite a good while. I was also having a really hard time taking off the weight I’d gained during the ensuing years since the injury (nearly eight pounds per year), which only complicated my health issues. I told the associate doctor, “I’m having trouble losing weight,” and he replied, “And you won’t be able to lose any, until your obstruction is opened and your apnea corrected. You will probably even continue to gain weight.”

Those words surprised me, but also made more sense than almost anything I had heard in my treatment. My diet had changed OSAsome, but I was mostly sedentary, yet also worked diligently to do whatever I could to recover my normal weight (mostly all for naught). Now I understood that the lack of oxygenation circulating in my blood was at least in part responsible for throwing off my metabolism. I was always cold, easily fatigued, and I wasn’t really processing food or at all able to exercise like a regular person my age. This new information helped me look at myself and at my own struggles, as well as those of chronically overweight people, in a new way. To this day I suspect that obstructive sleep apnea may play a large role in the obesity of many people who do not even realize they have this problem.

My first attempt at using the CPAP failed. With as much obstruction as I had, I was restless and uncomfortable wearing the equipment. In addition, even at its highest settings, the machine just wasn’t that effective at treating the apnea. We proceeded with the invasive internal nasal surgery—a repair of the nasal valve collapse, nasal septum (septoplasty), and resection of the hypertrophy of the broken nasal turbinate bones, which also included the insertion of an eye socket implant to secure an opened airflow (“Ouch!”). All of this poking and prodding, to my dismay (and without forewarning) resulted in a very stretched nose. Who knew noses were so elastic?  It felt as if they had placed my nostrils in stirrups, stretched them behind my head over either side of my ears, and left them there for a few weeks.  All of this special attention left my nostrils and sinuses opened wide enough to give me the oxygen I still can’t feel, and enlarged my nose permanently to approximately twice its already generous size.  The luck just keeps on coming.

At the end the surgery and recovery process, the doctor seemed elated with what he characterized as an 80% improvement. Unfortunately, a remaining obstruction appears to be in my throat, and after further polysomnography (more sleep studies), diagnostic laryngoscopy, nasal and pharyngeal function studies, a second surgery was recommended.

By this point, I had to agree with the treating ENT physician’s words. I had been through enough. Also by this time, I had  benefited at last from the further treatment of superior endocrinological and extensive physical therapy intervention. I was feeling overall so much better in every way that I just wanted to at least temporarily forego any further surgery. The doctor said he felt that was a smart choice. This made the CPAP the only alternative. Yet, he said that because of the success of the internal nasal surgery, I would not need the air pressure on as high a setting and that there was still a chance that in a few months with the machine, my apnea could completely resolve itself. I don’t know if he is just giving me false hope or not. Lord knows we all need a little dose of empirical hope now and then. I basically just cooperate with the treatment plan, as I continue to seek full and final recovery.

So today (going on seven years post-injury), it all comes down to one appointment for pickup, one gallon of distilled water, and one surge protector. Then off I go to the land of somniferous bliss—of increased energy and vigor, restful R.E.M sleep, and perhaps a little lucid dreaming…all the while looking only a wee bit scarier than I did in my trip-over tight mermaid-style dress, fake nails, gothic makeup, and long Morticia-style black wig that I so enthusiastically donned one Halloween so many healthy sleeps (and nightmares) ago.

morticia's dress

A Day in the Life: Sleep Study 3

I’m spending the day doing my third sleep study.  That’s right, third.

Let’s just say:

  • My eyes are all but closed as I write this.     
  • I’m not that happy.  😉
  • Yes, I have wires hooked up everywhere except to my teeth.
  • No, I can’t get up and leave the room, lest someone mistakes me for a robot.
  • No, I can’t potty until the technician comes in, unhooks me, and let’s me free from the Polysomnographic Collector System.  Yes, you can imagine.
  • No, I didn’t get hardly any sleep last night.
  • Yes, I had to wear a sleep mask.  With a tube that made it look like I was on a ventilator.
  • Yes, the sleep mask made it impossible to turn or sleep in my usual position, let alone any semblance of what might be considered a comfortable one.
  • Yes, the technician woke me up at 5 a.m. (even after keeping me up all night).
  • Yes, my bladder is not happy, either.  Yes, it is small, and used to emptying when ready, not waiting.  And waiting.  You’ve heard of “Hold your breath,” well this is more like, “Hold your bladder.”
  • No, I don’t know what I’m saying.
  • Yes, the electrodes feel weird, as does all the tape holding various nodes and microphones all over my head, face, and body. 
  • Yes, the globs of goo they use to attach the electrodes feel like massive, sticky spit wads.
  • Let’s just say, Phyllis Diller would surely find me funny.  And scarier-looking than herself.
  • My hair is not happy.
  • I’m snoring.
  • I might rather be dead.  ((Just joking!  A little hyperbole for an aggravating situation.))
  • If I get any more restless, I might start smoking.  Whoopie, more tests in my future!
  • If I get any more aggravated, I could actually short circuit.
  • Did I mention, I’m not happy?
  • I need some exercise!
  • This could never be considered fun — not even to a writer.

My first sleep study was scheduled in Greek Town in downtown Chicago.  They said it was important for me to be comfortable, but I think they did this so my husband and I could enjoy a nice, Greek meal before they tortured me.  The test was scheduled at a nearby hotel.  I walked the distance in heels.  I had lamb for dinner, because lamb is one of my favorites.  Sorry, vegetarians.  It was delicious.  I drank no wine.  I do not drink anymore. Well, maybe an occasional sip, but none to speak of, for sure.

After examining me in my initial visit, the ENT doctor said that I looked to be “at least partially obstructed” in my nasal passages, maybe even more so–he even mentioned a possible problem in my throat.  My throat?  He looked concerned, a bit overwhelmed.  I felt like I could breathe better instantly just with the numbing spray they prep you with. He inserted a scope in my nose and took pictures. He said he needed to do this sleep study to determine “what [I’m] doing when [I] sleep.”  What am I supposed to be doing?

Two thousand dollars later, I found out I have rather restless legs, I turn a lot, I appear (this time more scientifically) to have an obstruction blocking my air intake.  He didn’t know if it is cartilage, scar tissue, a deviated septum, or something else I can’t recall the name of.  But I already knew all this!  I’d been saying I couldn’t breathe all these past five years, since my early days of recovery.  I guess they wanted the brain injury to heal before they worried about the respiratory concern.  It is amazing how much our brains control. Like, EVERYTHING.

The one thing I did not know before the first sleep study was what the technician told me at the break of day after the first examination, in a rather alarming tone, “Your breathing is stopping every three minutes.  Completely stopping.”  I think he even said, “That’s not good.”

I remember his demeanor changed big time, from the start of the procedure to the finish. When he hooked me up to the electronic machine, the e-link and amplifier, he approached each step of  the procedure as if it were routine (being cautious not to touch my belly or a nipple, thank you very much).  He basically offered no interaction and made very little or no eye contact, except with his conductor goo, tape and wires.  When he returned to end the session, which he monitored from the hotel room across the hallway, he was very informative.  He said I would definitely need to return for a second sleep study (which he said the night before the test would determine–that if it turned out fine, I wouldn’t have to return).  Of course, I wasn’t fine.  He even seemed rather notably both surprised and alarmed.  He said something about my air intake being a 70-something and needing to be more like a 90-plus, that I was way too young to be breathing as I was, that I was breathing like a person much older than myself.  I was happy to be characterized as young by someone.  He used enough emphasis to make me see the point, without telling me the true concern.

Worst of all, he said I am not getting enough oxygen to my brain as I sleep…that sleeping itself was shutting down my intake, and that over time that could be a major health impairment.  He said in response to my panic that left untreated, I would face an increased risk of developing Alzheimer’s or dementia, or worse.  Oh, great.  Not fair.  It made me so angry at that damn door that hit me.  I used to be the picture of perfect health.  Now I was at risk of developing early onset Alzheimer’s, or worse!

I guess you’ve got to love me while you can, people.  While I’m still here.  What’s left of me, anyway.

Of course, this made me anxious, but I truly appreciated his candor.  No one else ever tells me anything.  It’s so annoying.  I was glad to learn something, and to receive some sort of report, even if it was bad news.  Plus, I FELT obstructed, like I wasn’t able to draw a full breath, starved for air and energy.  I was glad to have my feeling validated.

The second sleep study was set up immediately when I called the doctor in a bit of a panic the following week, feeling as if I really could not breathe.  I wanted immediate care.  I was ready to go to the Emergency Room to have them open up the damn airway, whatever it took.  He said they Emergency Room couldn’t or wouldn’t do anything, but he concurred that my situation was serious, but said he needed to get more data before proceeding.  I was like, “Just take out the damned obstruction, for crying out loud!”  I’m thinking, “How can they tell you they know it is compromising your health–indeed, your very anatomy AND your oxygen intake to your BRAIN, for crying out loud–but then want to lolly gag around with all these expensive tests?!

Of course, as much as they are in business to help people, doctors are in business to make money.  We all know that.  Or, should.  And medical testing brings in a lot of money.  I started to get the feeling that the whole sleep science deal is an elaborate money making operation.  Of course there are the insurance companies, who are solely about making money…and that we do all know for sure, sadly.

Nevertheless, I appeared for my second sleep study.  It was re-located from the swank and glamour of downtown Chicago to a run-down, rather dangerous part of town, with all sorts of locked doors and barred windows.  I never would have been able to get into my jammies if my husband hadn’t gone and stayed with me.  Because there were two of us, they gave us the “master suite”–it had the only king size bed.  The room was pretty clinical looking otherwise.  Not like we needed mirrors or rotating disco balls on the ceiling–there were cameras and I was to be hooked up; it wasn’t exactly anyone’s idea of marital bliss.

That second sleep study night the technician wouldn’t say a word.  He wouldn’t answer any of my questions in the morning, and even said the other guy was wrong to tell me anything. I know why they do this (they’re all paranoid about law suits, and doctors like to have power and especially follow-up visits, even if your results come back completely clear, because again–you know, it’s really all about the money).  But really, it is MY brain! I think I should get to know whatever the hell they find and how things look.

They say they don’t want to “suggest” or “scare” the patient.  But their abbreviation and silence are exactly the things that end up leading to all the inference and fear.  Oh, well. Hook me up, and tell me or don’t tell me what you see.

After the second sleep study, the doctor set me up with a CPAP, more elaborately known as continuous positive airway pressure.  It’s a contraption that sends pressurized air through a tube to a mask on your face.  It sort of forces the air through the oral cavity, past any structures that might be in the way; or, at least it tries to.  This was a fun chapter that I endured for several weeks, until my doctor said, “Forget that.  That won’t help you.”  Of course, it takes a village to help someone in my shoes.  He said surgery.  He specified two surgeries.

So, yesterday, I went for my second consultation on those suggested surgeries.  That was interesting, and a bit frightening.  Right away they signed me up for this test.  I forgot what the doctor called it, but then, I haven’t had much sleep.  My understanding is that it is to see how my brain performs in the daytime, when they make me sleep, that is.  It’s a bit complicated.  I thought perhaps it was to see whether my brain could tolerate the anesthesia for surgery, but the surgeon said it is not, that anesthesia is really quite safe, and I should be just fine for the anesthesia they will have to give me to have the surgery. Or, surgeries.

In the meantime, here I sit.  Good thing the bed is comfortable, seemingly clean, firm. The technician just brought me lunch. A chopped salad from everyone’s favorite,  Portillos, and a small lemonade.  I am pleased it is a small.  My husband always buys large because it is a better buy, but I worry about the calories.  The lemonade is too good not to drink it all. The technician’s cute little Phillipino laugh cheers me up.  We have a routine going.  He comes in every two hours, says “Rise and Shine!” in his cheeriest voice, rips open the curtains, disconnects me, loops my head-box over my neck so I can get up once he leaves.

Later he calls, says he’s returning, then comes back in.  He has his own key card to my room.  He has another patient he is monitoring.  When I ask, Ascario tells me he has a degree in electroneurologic diagnostics.  He says he is well paid.  I’m glad to hear it.  I am paying well, and I want him to get his fair share.  He is a nice man, very good at what he does.  He leaves me wired back up, then tucked in, curtains redrawn, where I will remain for as long as it takes him to get the data he needs–about twenty to thirty minutes.  He tracks my sleep.  He knows when I am dreaming.  I am relieved for once that I do not think of sex anymore.  I wonder if he can tell when I am thinking.  I think he can.  Soon after he leaves the room, he calls back to re-calibrate his machine.  In a moment, the phone will ring and it will be Ascario.  He will say, “Okay, I need to calibrate my machine.”

“Close your eyes.”

“Open your eyes.”

“Okay, look up and look down.”

“Good.  Look side to side.”

“Blink your eyes.”

“Grind your teeth.”

“Okay, good.  Sleep well!”

Here’s a popular song that says it best:

 

© Debra A. Valentino, all rights reserved.