Category Archives: Updates

These are posts that update my progress toward Superior Canal Dehiscence surgery, as well as the aftermath of, and my recovery from the middle fossa plug and resurface repair to the canal and tegmen.

Celiac Disease and Superior Canal Dehiscence

So, long before I was an SCDS suffer, I was diagnosed with Celiac Disease, which is essentially and intense allergy to gluten — most commonly found in wheat, and wheat-like grains.

One of the symptoms of undiagnosed Celiac is a severe loss in bone density to poor absorption of minerals. As a 35 year old male who was at the time a marathoner, I developed osteoporosis in my hips! I’m not convinced that Celiac may have been a culprit in thinning of my tegmen and directly related to my Superior Canal Dehiscence. If the  bones in my hips thinned, why not those thin bones in my head?

I’m telling you all of this because very good friends of mine, and very talented Chicago filmmakers, are making an important documentary about Celiac Disease (as I hope to do for SCDS, maybe even with their help), and they need whatever support we can muster for them. Watch the trailer linked below and you’ll see me there, and let me know if I can get you any more information. Please spread the word!

The Celiac Project: http://kck.st/1jdRGDf

 

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.

Good and Not as Good News

Three and a half weeks post-op, and today was a pretty big day.

I drove myself to physical therapy, then later drove myself (with my mother as chaperone) home from a visit to my surgeon, Dr. Wiet. All told, it was about 30 miles. No significant negative effects to report. It’s good to know I’ll be able to get myself around.

I went for a 1.25 mile walk today. My quads get burny, and my head gets a little bit swimmy, but it’s nothing that I can’t push through. It does make me wonder, though, if running and bike riding are in my future. Both will likely take a long build up of endurance and brain-training before they become possible. The pounding of a run, not to mention the up/down jostle, seems problematic.  I’m also left wondering, as usual, whether the dizziness I feel is from the surgery (which should improve) or from my unrepaired left side (which may not). No way to know yet.

BUT, Dr. Wiet confirmed today that he doesn’t think my left side needs surgery right now, and if it did, it would likely not be a craniotomy. My hearing on the left side is perfectly normal. I’m not willing to risk it without a serious need for surgery because the right side hearing has not improved. I thought it had, but the test results say otherwise. He doesn’t want to hit me with more steroids right now, but instead wants to wait three months before we start hearing aid discussions. The tinnitus is bad. Both my hearing and the ringing are much worse than before surgery, but the doctor reiterated today that he felt I had to do the operation because the dehiscence was so large, and because my tegmen was so compromised, that I was a brain herniation waiting to happen. I get that. But I want to hear, too, or at least not hear this high-pitched cloud of noise all the time. And yet, there is no going back. It is what it is. I seem to be one of the rare few who suffer serious hearing loss from superior canal dehiscence repair.

There are therapies, he says, for the tinnitus. And a couple of options to improve hearing, especially if more hearing comes back over time. All of those options involve hearing aids.

People in the support groups on Facebook have asked me if I think it was worth it. I guess I have to say it’s too early to tell. I don’t know what the final dizziness result is yet, and the hearing, while likely permanently damaged, is still in flux, too. I mean, avoiding a brain hernia is a very good thing, but if it weren’t for that one consideration, I probably would not do it again if I had a second chance. I think I would have tried to live with it longer and not risk my hearing.

Every case is obviously unique and people’s priorities are different. My quality of life was diminished before surgery, but I had reached a liveable plateau. How long that would have lasted is hard to say, and much of it was due to constant therapy and a daily dose of valium. Is that a sustainable lifestyle at 41 years old? I don’t know. Doesn’t matter now.

I do know I’ll be protecting my good left ear in every way possible, and doing all I can to retrain my body and brain to deal with its situation.

Oh — fun fact. Tinnitus is caused by the brain, not the ear. It’s noise the brain creates to fill in for a lack of sound. Crazy, huh? Sometimes, if I try really hard, I can quiet the tinnitus a few degrees by focusing on that ear and simply telling the noise to go away. At least I think I can!

Not that the scar is even close to being my biggest concern right now, but here it is:

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Vrksasana

I’ve been a little glum. A long winter recovery and several setbacks are at the root of it, as are my daily battles with ego and impatience. But today, I did this for about thirty seconds and my outlook brightened:

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Before all this went down I had very good balance. Tree pose gives me hope! My guru pal Sandy gave me my new mantra today: “right now, it’s like this.” Whether I’m dizzy or rocking a tree pose: “right now, it’s like this.”

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.