Tag Archives: Surgery

Track and Field

Hello all,

When I first joined support groups on Facebook, I’d panic at every side effect or bad outcome I read about, when it came to Superior Canal Dehiscence surgery. A wise woman in one of those groups told me to remember that all of the folks with good outcomes had moved on with their lives, and didn’t have time to be checking the boards all f the time. That made sense to me, but only about two weeks ago.

I’ve been back at work for three weeks and feel like I’m tuning in much better than before, and getting stronger. I’m not to where I was this time last year before my symptoms began, but I’m getting through my days fairly well now, and my work days on campus are quite active and stimulating — physically and mentally.  I must also say, that for reasons unrelated to SCDS, my last two weeks have been emotionally stressful, and my response to that stress is drastically improved from the worst days of my symptoms.

The best news is this. I had to teach my daughter to ride her bike, which necessitated running along side her as she rode for brief stretches. Then, trying to keep up with her as she went around the block. If you read My SCDS story, you’ll note that I was a runner before this all went down. In fact, a month before I became severely knocked out, I finished a 5K in about 27 minutes — my best time ever. Well, that jogging with my daughter, led me to think I could run again, and I’ve started back without too many problems. I run one minute and walk three, and can cover two miles that way in under thirty minutes. My fastest mile is 13:48. I have five minutes to shave off, but I’m thrilled to be running again.

I mostly stare at the ground, but try to challenge myself and raise my head to hold the horizon every several seconds, and the bounce seems to be improving. My legs are sore, naturally, but not just from the exercise. My lower back, neck, and outside leg muscles continue to be severely stressed by my new balance situation, so I’m at the Chiropractor and message therapist at least once a week.

The dizziness still comes, but only slightly, and it’s very manageable. I’m starting to believe it’s from my unrepaired side. Two milligrams of Valium each night before bed help with that. My balance is good. I’m no late-life gymnast, but I can walk a balance beam front to back, then do it backwards, then turn and repeat without touching the floor (most of the time).

Noisy, stimulating environments still wear me out, though. And my hearing has not improved in my repaired ear. I may never know why this happened, when so many people report better hearing post-op. Right now, I’m trying to get the most out of every day and enjoy this good period. Because with the other side unrepaired, and potentially unable to be repaired due to the possibility of complete deafness,  I can’t be sure how long it will last.

Here’s a picture of me attempting a (very short) long jump for my two kids:

 

Since I’ve Been Gone

Hey everyone.

So it’s been a while. Two weeks, in fact. I needed to take a break, I think, from writing the blog.

I had two goals when I started this — 1) to give curious, concerned friends and family one place to go to get information on my situation, and 2) to document my story for others who may be suffering from Superior Canal Dehiscence Syndrome, and considering what to do about it.

It’s hard to not feel like I’m complaining all the time. There’s a fine line between “documenting” and hosting a pity party in situations like this, and I felt like I was trending toward bitching.

I’ve realized in the past two weeks that I’m in for a roller coaster ride. Just as I was getting used to the tinnitus and severe hearing loss in my right ear, and thinking “I’m not thrilled about it, but I can deal with this,” I started to relapse into the same old symptoms. Swimmy-headedness (the medical term, not to be confused with dizziness, is “giddiness”), brain fog, fatigue, and pretty severe muscle soreness on the stabilizing muscles of my left leg. Essentially, the piriformis, hamstring, IT-Band, calf and ankle. The reason for this, I’m told, is that my left side is doing lots of work to compensation for the balance problems on my surgically repaired side — especially when I do balance exercises, which is almost constantly. So I’m laying off that for a while and going to a chiropractor, while seeking extra PT for the muscle issues.

The cognitive issues come and go. It’s hard to pin down what causes them, but they only just began about ten days ago. Is it the weather? Sinus trouble? Is it the dehiscence in my left ear? Is it the healing/damage from the surgery? Does the craniosacral therapy help or hurt? I can’t tell. I don’t know. It sucks and it’s scary. My greatest fear was to go through this traumatic surgery, suffer some kind of significant side-effect, and then learn I’m not even better than I was before. Right now, that’s seems to be the situation as best I can tell, but I’m trying to fight through it and live as normally as possible in hopes that with time it will all improve. Folks tell me the recovery can take up to a year. Folks tell me to be patient. That’s a recurring theme.

I can walk up to 2.5 miles now in about 36 minutes, I’m heading back to work on Tuesday, and while I get really tired really fast, I’m hanging in there most days. Laying down for twenty minutes helps reset and calm things down, so there will be a pillow in my office going forward. I continue to see my fantastic vestibular therapist, who is now working with me to steady my vision while walking — so my field of view doesn’t bounce quite as much. It’s interesting work.

So, that’s where I am. A bit of good news creatively and professionally have lifted my spirits, as has the success of my Kentucky Wildcats in the NCAA tournament. I’m going to try to get back to writing here more, and also buckling into the SCDS documentary I’ve started.

Thanks for reading!

Vestibular Therapy Update, and Post-Op Obsessions

I have four sessions left on my first post-op PT prescription (we’re asking for more), so we did a little testing today. I’m up several points on the rating scale from where I began one week after surgery. As of today, I can:

  • Stand on one foot, both sides, for 60 seconds with eyes open
  • Stand pointed (one foot directly in front of the other, heel to toe) for 60 seconds with eyes open and closed
  • My gait has returned to normal, and I don’t wobble looking from left to right or from up to down as I stride
  • I don’t need handrails on stairs
  • I can walk over a mile
  • BUT, I cannot stand either foot with eyes closed for more than a second or two. I tip over immediately.

All in all, not bad in the balance department.

Early mornings, just after waking up, I tend to get swimmy helping the kids get ready for school. Doing computer work for more than an hour gives me a thumping headache. My skull is suddenly very sore these past two days, too, which effects my sleep — as does the tinnitus. Blah, blah, blah. 

The biggest issue is that I’m a perfectionist. Always have been. I know I’m going to have to find a way to get over this, but the hearing issue bugs me a lot psychologically. It’s not just the fact that I can’t hear out of that ear, and that what I do hear is annoying, but it’s the knowledge that something is wrong, broken, not right — that drives me crazy. It forces me to question everything. My decision to do the surgery. My choice of surgeon. The type of procedure. My recovery protocol. The smallest little thing like accidentally picking up my son after I cam home, or that time I burped and it hurt my head, or digging out the storm drains with a hoe. All of it.  Did I do it? Could I have made a better call? Why me? 

Self-pity ain’t cool. And it’s stupid to obsess over these things, I know, when much of my recovery is going well. Nothing can be done about it. But right now, for me, the obsessing is unavoidable. I’m hoping getting back to work in two weeks will push all of this back some and give me a little peace. 

I actively seek out perspective now. Like this story, about a 12 year-old boy from New Zealand who is slowly going blind and wanted to see the Celtics play while he still could.

The Perfect Recovery Part III

As I’ve been made to understand it, the vestibular (balance) system is comprised of at least three separate parts. There are the three semicircular canals in either ear – anterior, superior, and posterior – that let the brain know where the head is in space. Then you have the eyes, which do the same visually, and the joints — particularly the ankles, knees and hips, which respond and adjust after the brain has processed that stimuli. The superior canal, which is likely compromised in both of my ears, negates the up/down movement in our vision when we walk and run — or drive a car. It’s like the steadicam system for the eyes. My hope is that the other two canals, and my plastic brain, can learn to adapt to whatever loss these canals have suffered and stabilize my field of vision.

It’s a good idea to not tweak an ankle when you’re trying to recover your sense of balance. I overdid it a bit on my dyna-discs — surprise! — and my now right ankle is out of whack (thanks to probably at least a dozen sprains over 41 years). Given the pressure on that joint to compensate for shaky balance already, it’s another tiny setback. It’ll be fine a few days.

I keep thinking my hearing is getting better in the right hear. I’m noticing sounds more and more, but the constant cloud of high-pitched tinnitus there makes separating sounds from each other very difficult. What I do hear and understand through that ear sounds like the radio voices of Rebel Fleet pilots as they attacked the Death Star in Star Wars. Remember that? Metallic, electric, distorted, and like it’s travelled 10 light years to reach my ear drum.

Resting is hard work

I walked 30 minutes today outside. A little over a mile. It’s 20 degrees. I’d say I’m not as dizzy as the worst of when this all started, but also not as stable as I had gotten before the operation. I’m close, but still need work and stamina.

Car rides still aren’t great. I’m not ready to drive. Maybe by the end of next week.

Three days into my massive prednisone load and nothing has changed in my ear. Full, deaf, ringy. Thinking of asking my surgeon for an ear tube this week. I don’t see the point in waiting.

I am gaining in my ability to read and write and concentrate. Finished a novel today in less than 24 hours. Haven’t done that in a long time.

The “unmasking” in my left ear continues. I’m especially sensitive to loud noises, din, and crunchy chewing — though the sound of my own voice isn’t as annoying as it was at first. I’m hoping if we recover the hearing in my right ear it will somehow compensate for these new problems in the left. If the hearing does not come back, I’d have to be pretty freaking miserable to risk losing both ears in a repair of the left. The bilateral news was a heavy blow in that regard.

The scar looks great. People like to talk about that. I’m not worried about the scar, though.

I haven’t worn pants with a button in well over a week, so tonight Tina and I are going to try and find a quiet spot for an early dinner date together.

Writing, Rehab and Ego Subversion

When you’ve run and ridden in races across hundreds of miles, your brain doesn’t forget what you’re supposed to be able to do. It’s like this: once you’ve run a marathon, no matter how out of shape you are, a three mile run doesn’t sound like a big deal, even if you’re in no condition to do it at the moment. I love how the human mind does that. We adjust to scale and scope based on our experiences. Tasks don’t seem so hard when we know we’ve done harder things. And yet, that creates another problem. An Ego problem. And that’s where I struggle with rehab.

After my first full vestibular rehab session yesterday with Jennifer, I’m really sore, tight, and tired (though naturally, I repeated the whole workout this morning at 6:30 AM).  One-leg stands, walking on tip-toes and heels, cross-stepping: all that stuff is crucial to the recovery of my balance, and it makes me tired, and yet it is nothing like racing 100 miles on a bike over hill and dale in Kentucky. I’m clearly struggling with scope and scale.

So it’s medicine time.  I teach my writing students to swallow their egos in an effort to make the best product they possibly can at this moment in time. I think what holds for writing also holds for rehab. I have to learn to do the work I can do right now with an eye toward where I’m going, and think less about where I’ve been.

Dyna-Discs: the angels and devils of my rehab.

Dyna-Discs: the angels and devils of my rehab.

Follow Up: Good and Bad News

The stitches are out and the scar looks great. The doctor was impressed with my hair growth. Yay for great hair! That’s the good news.

The bad news is that after removing the packing plug from my ear canal, I couldn’t hear. My inner ear is filled with blood and fluid, which contributes to the loss of course, but there is a real chance I might have significant nerve-related hearing loss. The hearing test was honestly frightening and quite disheartening. I couldn’t make out much of anything, so Dr. Wiet ramped up my steroids to Barry Bonds levels. Next step will be draining the ear via myringotomy, which I’ve had a bunch of times during ear infections .

A lot of support group folks say this is par for the course, but I sensed serious concern today in the office and it has me feeling quite uneasy in addition to dizzy. But what can I do other than rest and heal and keep the faith?

I could have had facial paralysis, a stroke, seizure, serious infection, or a host of other issues, but I came out clean on those fronts. I’m wiped out after PT yesterday (and a stupid effort to clear snow and ice off of water drains #moron). So, up and down is how it goes, I guess.

Send me your high-priority optimism readers, and please speak up!

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Finding Perspective in a Spinning Room

Far more trivial things have kept me from writing than trying to keep focused on a spinning computer screen. So, in that one small way this post is a victory.

I’m day five post-op, and after a brief fentanyl-induced hospital honeymoon, things have gotten a bit tougher, despite the fact that I’m thrilled to be home.

I play this game called “Broken Robot”with the kids. (It has nothing to do with JJ Abrams, who, as you know, has a robot who is bad.) As the name of the game suggests, I act like a robot in need of repair, and the kids set about trying to fix my ailments with their toy tools. In the game, I walk stiffly and mechanically when they eventually get me up and running, and that’s exactly what I look like now. Every step is slow, carefully considered, and without much of a stride. My head swivels slowly on badly rusted joints, and I can only hear out of one side of my head, so I take my time turning and try to position myself as best I can to hear. Evidently my ear canal is packed right now. I get that out Thursday and we’ll know a little more about my hearing then.

My brain senses movement that is not real because my inputs have changed, as Dr. Wiet told me, and it’s trying to decipher how to process this new information. I had powerful pulsating tinnitus that would make my field of vision bounce as well, but it seems the steroids have begun to tamp that down quite a bit in only one day. I also no longer feel the world tilt sideways when I burp or yawn, likely due to reduced swelling. Steroids rule! In its place, I hear chimes. Like someone has set a Casio keyboard to the organ setting, and is softly pressing one upper-register note after another. “Beeeeee.” Boooo.” Baaaaa.” It kind of sounds like the opening notes of the original STAR TREK show, but unfortunately, never in the right order.

[EDITOR’S NOTE: Day 6 Begins Here. Writing the above wiped me out. iPads and iPhones seem easier to my eyes than the laptop.]

I believe the unmasking of symptoms in my left ear has begun. My chewing is annoyingly loud, my voice sounds like it would playing out of a speaker, and I seem to be very sound sensitive. I had to go to bed and lay in the dark last night, because the noise and activity of a family dinner was bit too much to bear and made me nauseous. I already know I have a superior canal dehiscence on that side, and we hope that once my right side reaches its optimum level, it will be able to compensate for the left. But only time will tell if this whole process is a rinse and repeat.

I do better in the quiet, when I’m still, and generally later in the day. Last night I slept on my stitches without a problem and rested well. I had taken a valium as ordered by Dr. Wiet, but given the compromised state of my vestibular system, I think it left me too impaired, so I skipped it today and feel much better. Pain has never really been a problem. Actually, the worst pain came from the pin holes left across my skull from the device they use to hold the head in place in surgery. I get by on one or two regular tylenol a day at most.

I’m looking forward to beginning vestibular therapy again tomorrow with Jennifer. I’d say I’m significantly worse right now than I was at the onset of my symptoms in July, but it is of course only six days post-craniotomy! I’m not a patient patient, but I suppose a broken brain is a bit more complicated of a thing to heal than a broken bone, no?

Thank you all for for the follows and comments. I hope to respond to each of you when I am able.

The Other Side of Surgery

I met with Dr. Wiet today and signed the forms and asked my final questions. He believes I’ll come through it fine. New and improved. I’m feeling as confident as I think I’ve felt all along, and I’m just ready for this thing to happen. The past week has been like sitting in an airport waiting for a long-delayed, non-stop, twenty-hour flight to Siberia. It’s gonna suck, so can we just get on with it already?

A lot of people fear not waking up from a serious surgery like this. I don’t. I know I’ll wake up. The thing is, what will I wake up to? I’m not worried about pain. I just don’t want to be worse-off than I was before. I want to be better. But what can I do about that? Nothing.

I’m trusting my future to people who have spent long, successful, and highly-regarded careers working every day on problems like this. I’m trusting my fellow human beings who are elite, resourceful, well-equipped experts in a highly specialized field. I’m trusting two months of my own research and thought, and countless hours of soul-searching. I’m trusting my own will to fight, recover and reclaim my life and the way I want to live it. 

In 32.5 hours I will go black and wake up after what will seem to be just a few seconds —  and I will be facing a new reality. 

 

Pre-Op Buzz Cut

For a guy, I’m definitely a hair snob (This pre-cut photo does not indicate as much. I had just shoveled 92 feet of snow off my driveway. Leave me alone.). Clippers haven’t touched my tiny little head in 13 years, but I figured if some pre-op nurse is going to shave an ugly stripe in my skull, or even a whole side of hair off, I’d rather have the lovely Amanda, a true professional shorten the entire batch. No hair-washing for 10 days post-op? Yeah. Let’s whack it.