Ten days out

This is me on 12 April 2017, two days after surgery, when my compression bandage was removed.

12 April 2017, bandage removed

It looks severe, and I guess it is, but it wasn’t painful. I’m told I received IV steroids during the procedure, which were supposed to make me feel better. My experiences with IV steroids in the past are radically different, they literally sucked the life out of me when I received them for multiple sclerosis, but I did indeed feel better when I left the hospital this time.

I felt too good in fact. I am supposed to limit myself, some limitations are obvious such as avoiding loud noise (no concerts for two months); some are less obvious, aimed at reducing cranial pressure. I can’t bend over to the point my head is below my heart, I can’t lift more than three kilos, I’m supposed to sleep at a 45 degree angle. I took a lot of scolding to settle myself down.

My symptoms are gone, no bone conduction sounds, no autophony, no pressure in my ear. I’m also less aware of my cognitive deficits, which I knew was a possibility but intend to withhold judgement for a month or two.  I do suddenly have tinnitus (out of curiosity I checked the frequency, ~3000 hertz), but that is an expected post surgery symptom which should resolve itself within a few weeks. My balance is a bit worse, so I’m using a wheelchair for the time being. It is fun, but a bit tiring. I can turn and spin as if I’ve been doing it forever, which should be good news; no dizziness or motion sickness. It has pointed out my only post surgery pain, the point on my left hand in which a catheter was inserted to measure blood pressure. The other catheter, made famous by my friend Barry Parham in his book “Why I Hate Straws,” was just a weird sensation, and I had to eat through straws the first two days.

As days go by there are differences. Not always pleasant but there is no indication they are permanent. The hearing is returning to my right ear incrementally. At first, higher tones came through as if they were transmitted by kazoo, scratchy and fuzzy like the teacher character in Charlie Brown. Today they sound more like whistles. I yawned for the first time about four days post surgery, which was a good sign, I could open my mouth fully, and I was tired. I’ve been sleeping a great deal, probably more than after the brain injury, but back then I couldn’t move much so perhaps I was resting more then. Opening my mouth meant I could try more foods, we found a new Mexican place one night that had wonderful food and great margaritas, ranging up to thirty two ounces. I ordered a smaller one but asked the waitress if I could see the thirty two ounce glass, it was a small fishbowl. I’ll have to visit again when I am fully recovered, they carry my favorite tequila.

We’ve been discussing the question, “Was it brain surgery or ear surgery?” in my SCDS support group. A little of both. The brain needs to be moved out of the way, so even though an otolaryngologist does the diagnosis and sometimes the ear part of the surgery, a neurosurgeon must be part of the team to handle the brain; or in my case, a neurotologist (with a T), which is a new specialty, who handles both parts. The condition of Superior Canal Dehiscence was only identified in 1995, it only affects about one percent of the population, and not everyone requires surgery, so it is rare to find a neurotologist, or even a neurosurgeon/otolaryngologist team, who can properly treat the condition. Some people I have spoken with went a dozen years or more seeking a diagnosis, as most otolaryngologists don’t recognize the condition. It took me four doctors, the second one made the diagnosis and referred me to a team I could not trust, so my fourth happened to be a neurotologist who had just transferred to my hospital from Portland. Perfect timing, his schedule is already filled. I saw him first on 15 March, already had the cat-scan which showed the hole, he said he had 10 April available for surgery so we did the audiograms and VEMP testing the next week. Other folks I have spoken with, searching years and finally getting a diagnosis, were depressed. The surgery is scary, I felt a bit of fear, but nothing was going to stand in the way of a solution.

There was more stress in the intervening weeks than I am accustomed to these days, my landlord lost all vestige of civility and kicked me out of the home where I have lived for four years, and the anesthesiology department demanded a full echo cardiogram a week before surgery because the EKG showed “minimal voltage LVH, may be within normal parameters,” which was difficult to schedule because in their request to my insurance they said “routine health examination” rather than “pre-surgical requirement.” We found a place to stay, moved, and laughed with the echocardiagram technician about healthy my heart is. Plus, just watching the echocardiogram was fascinating. The drain pipe in our new place broke about a week before surgerythe plumber came in while I was in the hospital. Even good news, like my father wanting to come out, caused a little stress because I knew I would be out of it most of the time he was here. At least he was able to see my oldest son while he was here.

My father as I regained consciousness

Sam did a wonderful job of preparation, stocking up on soups and broths and creating healthy food I could ingest through a straw, I was just able to eat solids too fast. She was able to have her father over the night I came home, so he met my father. She scolded me into slowing down, along with members of the SCDS group and some of my friends (special thanks to Vince Coviello, who put it bluntly, “Recovery is not supposed to be exciting. Just suck it up and listen to the Docs!”). Sam made sure the place we live is level, reducing the chance of falls, and has been of constant assistance. I’m going to need to do some exceptionally special things for her when I am fully recovered.

I am getting better. The overlap of symptoms with TBI and MS made me wonder what would change; I am pleased so far and have no doubts about future improvement.

 

A new window

I may have mentioned having some hearing issues since the accident.

I have now visited four otolaryngologists, in an attempt to diagnose and correct the problem. Well, two to diagnose, then two more to find someone I trust to perform the surgical correction.

The first otolaryngologist gave me a hearing test, which returned results consistent with an aging punk rocker. My attempts to explain my experience was not adequate to pull his eyes away from my chart, even though he did conduct the one tell tale office exam that should have pointed him in the right direction. He offered to write a prescription for hearing aids, even when it was evident they would not correct the problem.

The problem, you see, is that I hear too much. There is a “fullness” in my right ear, much like the pressure you feel when changing altitude, except swallowing doesn’t clear it. I hear my heart beat in my right ear from the time I sit up in the morning. The shower hitting my spine is deafening. My voice has a bass resonance in my right ear. Sound builds, so in a short time all I hear is the resonance (autophony). These sounds are heard through bone conduction, which is why I hear them and you don’t. Normal people hear sounds conducted through air, and entering the ears.

The test the first otolaryngologist performed that should have pointed him in the right direction was placing a tuning fork on my skull, then holding it over my ear. I could not hear the tone in my right ear, but it was loud and clear when the fork was placed on my skull. Opposite results for the left ear. So he suggested a hearing aid, and I suggested a different doctor.

Doctor number two recognized the symptoms right away. He called it “a third window,” a reference to an extra opening in the Superior Canal of the vestibular system, which is attached to the cochlea. The medical name for the condition is Superior Canal Dehiscence, or Superior Semicircular Canal Dehiscence, Syndrome (SCDS or SSCDS). I’ve learned lots of new words, but I’m still not sure about the pronunciation of “dehiscence.” As you can see from the CT image below, and probably guessed from the explanation, corrective surgery takes place within the cranium. The canal is a bony structure adjacent to the temporal bone, on the “in” side. A hole is drilled for access.

 

The third window

The “third window”

 

Doctor number two could not perform the surgery, and referred me to a specialist at the University Hospital in Newark, NJ. This doctor did more tests and did a CT scan of my temporal bone. She definitively diagnosed the SCD, but was so disorganized and scattered I wouldn’t trust her to open a can of tuna, much less my cranium. I remembered my neuro surgeon from the accident, and contacted her. She referred me to doctor number four.

Doctor number four is Dr. P. Ashley Wackym. I have seen a few dozen doctors in the last year alone, he is the first to impress me. Alright, he has a lead initial, so there is a sense of kinship, and he dresses well, a nice suit and sharp shoes; but what blew me away is that I did not have to explain my symptoms, he asked me about each of them with familiarity. Another thing which gave me an odd comfort is that many of the symptoms of my TBI are also symptoms of SCD, in other words, correcting the SCD may assist with the issues I am working on with the TBI. Wouldn’t that be lovely?

From what I have read, SCDS is very rare. This may be because it was only identified in 1995 at Johns Hopkins. An estimated one percent of the population has the dehiscence, and many do not develop into the syndrome. Not every doctor knows it even exists. Severity varies, and in the big picture my case is not serious compared to patients who cannot stand because their balance is impaired beyond therapeutic correction. I just have so much annoyance with my hearing that I would be most comfortable as a hermit. I am frustrated because going to hear a band requires a day of rest before and after. I have considered putting a spike in my ear to relieve the pressure, but other than that my life is not in danger. When I was diagnosed with multiple sclerosis it was relatively rare, largely because diagnosis was so difficult. With the advent of better diagnostic tools, we hear about people with multiple sclerosis every day. I knew a woman diagnosed at the same time as I, who had been searching for fourteen years, trying to maintain a grip on her sanity. The stories I hear from other SCDS patients are much the same.

I look forward to the surgery for a variety of reasons. An end to the noise will be wonderful, and the experience should be fascinating. I will spend two days in the hospital and recover at home for six weeks, and I’ll probably have a scar on the side of my head which will alter my choices of hair styles. Maybe it won’t work, I could lose my hearing completely (which would not be terrible if the autophony goes away), it could simply not work, or any of the myriad of surgical complications could happen. Anything could happen with the surgery, without it one thing is certain, the noise will continue until I lose my sanity and find a window large enough to leap from.