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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