Category Archives: Reflections

Reflections on the history of my Superior Canal Dehiscence symptoms, its diagnosis, and my daily life with SCDS.

One Year Anniversary

A year ago at this time I was in intensive care. The memories I have of surgery day are flickers. The shutter on the camera was closed more than it was open that day, but I know I cried before going under. It wasn’t panic, or even fear, just a release. They gave me an early dose of sedative because my heart rate spiked after my head was shaved. They told us that Tina (my wife) could go with me to preop, but then a surly nurse pulled me a way and made her stay behind. I went out. I went under. And when I awoke things were irrevocably different. But then again, they already were.

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I’m hoping to direct a film this summer wherein the protagonist is post-op from a brain surgery not unlike mine. I can’t write a script about superior canal dehiscence syndrome. No one would understand. It’s too obscure. So in the movie, the hero is clubbed on the head in a mugging. I want it to be violent and sudden — because even though my symptoms didn’t originate from blunt force trauma, they came on suddenly and pervasively, and I certainly felt as if I had been mugged. (Still do.) So, life was different already, and it would never be the same with or without surgery. My stamina was vastly diminished. My cognition delayed. My ability to handle stress was nonexistent. I was, in every way, out of balance. I still debate which doctor I should have chosen, and which procedure. Occasionally I’m still angry about it all — both the disease and the loss of my hearing. But I have to move past that.

Eight months later here I am. I can’t run — or at least I’m still too anxious to try — so I’m heavier than I want to be. I also can’t hear as well as before, and I still notice some cognitive processing glitches once in a while. But here’s the thing — I’m better. We say “better” sometimes and people think “cured.” I’m not cured. I’m better. And I’m encouraged enough to think I might keep getting better. I live with my health in the moment right now. I constantly do system checks. I’m always analyzing how I feel and trying to stay in the Goldilocks Zone when I’m feeling good, and I try not to do anything that might make me feel bad.  Last weekend was a huge milestone for me. I directed a short film. For those of you not in the industry, directing takes everything you have. Concentration, focus, stamina, and the ability to inspire, encourage, and motivate others constantly. Not a great job for SCDS sufferers to undertake. While I had a couple of shaky moments, I held up. In fact, I think I did much more than that — I thrived. I was thrilled with every aspect of the shoot, but privately, I was just excited that I made it through without falling apart, and that I did my job. It’s been five days since we wrapped, and I’m tired. Really tired. But hey, I’m not DIZZY, and while I still have mental lapses (like forgetting to take the laundry bin upstairs thirty seconds after my wife asks me to), I’m not FOGGY. I’ll take it. I’ve been super productive of late, but I’ve had to learn how to live like a cell phone. I must calculate how much battery power I can afford to burn, and how much time it will take me to recharge. That’s not back to normal, it’s not cured, but it’s way better! And better is good.

photo by Brian Zahm  www.bzahm.com

GAMICONOCRON SHOOT photo by Brian Zahm

Dr. Wiet recently did more vestibular testing on me through Dr. Hain’s office to see what function remains in my balance system, but I’m fairly certain my operated ear is still sending bad signals to my brain. He noted that the cap moved from it’s original spot over my hole, but he believes the hole itself is still plugged. He thinks a labrynthectomy is an option — removing everything from the inside of that ear, but I’m not cool with that right now. It’s another super-invasive surgery, and I’d rather just live with the status quo. He gave me a trial prescription of betahistine (Serc), which has actually helped me. It’s an expensive compounded drug, but I feel like there is much less swelling and pressure in my head when I take it, which likely indicates I was/am dealing with secondary endolymphatic hydrops or meniere’s — both of which could have been caused or exacerbated by surgery.  In combination with the diuretic I take once a day, it seems to have abated a lot of my symptoms.

So that’s it from one year out. I’m not sure what I’d do given the option to go back. My gut tells me I would have still ended up having surgery by now. I feel like it was the right thing to do and that, absent some unexpected collateral damage, it’s been a success. I do know one thing for certain, though. I would not look forward to the recovery again. Physical therapy, cognitive therapy, cranial-sacral therapy, chiropractor —  it as a full time job. Maybe it will be again someday, I hope not, but for now I’m focusing on being the best me I can be in this moment.

Thanks for your support.

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Meniere’s Disease and SCDS — Pee it Out

So, here’s a funny story.

A long time ago in a land far, far away, where it’s almost always sunny and 73 degrees, I once had an ear problem. Ten years ago at least. Lots of fullness, pulsatile tinnitus, constant infections. An ENT there came to believe I had Meniere’s Disease. So I went on a low sodium diet and took diuretics. Eventually, miraculously, it all went away and I forgot about it.

During my recent troubles, I failed to mention that episode to any of my doctors. It might have made a difference. Dr. Lee believes that Meniere’s Patients with SCDS are more susceptible to ear damage from surgery than those without it. He said he’s never had a patient lose hearing from a surgery, but I might have been his first. That’s very little consolation, but I wonder…. So make sure you discuss Meniere’s, or endolymphatic hydrops with your doc if you are considering any kind of SCDS repairs. It’s something to be aware of as they often go hand-in-hand — or canal to canal.

As for now, since some of my symptoms may be associated with Meniere’s, which happens frequently after significant ear trauma, I’m back to low sodium (in addition to low sugar, no gluten, no alcohol, and no caffeine), and am on a diuretic. I’m seriously peeing enough to solve the California drought issue. I lost three pounds over the weekend — which is good, because a year on prednisone can really pack on the weight.

There was good and bad news on my scans. The good news is that the tegmen repair looks solid, and that the hole on my “good” ear is very small. He does not believe that ear is affecting me. The bad news is, he can’t tell if my “repaired” ear is plugged as it should be. The wax and tissue used to cover the hole do not show up on CTs. So there’s a chance it didn’t hold. No way to know I guess without cracking my head open again. I’m following up on that.

My doc says it could take a couple of months to know whether this low-sodium plan helps resolve some of my current post-op symptoms. In the meantime, I’ll try to remember to put the seat back down.

The Power of Cognitive Rehabilitation

A friend forwarded this article on a man who had a devastating brain injury and has recovered tremendously due to cognitive rehabilitation therapy, something I’m doing right now, too. I think it would be particularly useful to Superior Canal Dehiscence patients with brain fog and disorientation symptoms.

http://http://bit.ly/1mbRgjh

Bendy after Brain Surgery

A long time ago in a land far, far away — Los Angeles — this guy here was a fairly serious yogi. I practiced for two years, pretty intensely, and saw a ton of benefit from it. Then we moved twice, I got sick, and it all fell away.

I went back today, not yet four months post-op. I was nervous about going to the studio. The sign on the studio door says “leave your ego and your shoes at the door.” As a competitive endurance athlete for much of my adult life, ego-checking was never my specialty. I’m ashamed to admit I enjoyed racing past the casual cyclist at 30 MPH, or chasing down every runner or slow biker ahead of me on the jogging trail. Now, when I go for a run/walk (I can run for 1 minute, then walk for 5), I’m the one getting buzzed — by other runners and in my head. Yoga isn’t supposed to be about any of that competitive stuff, though. It’s “meet yourself where you are.” I never really understood that philosophy until recently. Back in the day, I would be doing all I could do bend and twist as far as the ballet dancer next to me in class — which was stupid and wrong, but it’s who I was then.

My L.A. hey-day.

Today, my legs wobbled and are still shaking, my arms grew tired ridiculously fast, but I held. I found peace and calm. I stayed within myself and did not push. I felt opened up and for the most part, balanced. I’m hoping this will be an answer for me in terms of calming nerves, remaining centered, and rebuilding strength, balance, flexibility, and composure — all things this ordeal has cost me.

A friend of mine recently pointed me to a story on ESPN about athletes and soldiers who have suffered brain injuries seeking cognitive rehabilitation training.  I’ve found someone in my town who does that, and will begin working with her next week. All in all, I do everything that is asked of me mentally, but I don’t feel as sharp as I once was creatively or critically. I’m hoping this training will help me gain back lost ground and also stave off any brain fog that could arrive when and if my other ear gets worse. I’ll keep you updated.

People continue to find the blog and write to me. I wish you all well and enjoy the fellowship, even if it is centered on this shitty problem.  I fight bitterness sometimes. I’m happy whenever someone comes through a SCDS surgery okay, but there’s always this pathetic twinge of “why me” when it comes to my hearing loss and raging tinnitus. I see Dr. Wiet again in a few weeks, and hope to begin investigating hearing aids, or tinnitus relief of some kind. I got an ear infection in my good ear last week and was left virtually deaf. It was scary, but has since cleared. I feel like a time bomb of potential silence. Almost like I should hear everything I can possibly hear just in case I have to go through this again and lose it all.

But for now, I’m meeting myself where I am and enjoying the day I have in front of me. I hope you are, too.

 

If she can do it, so can I.

I’ve been so focused on functionality, I’ve yet to totally deal with things emotionally since my surgery and its aftermath. As a result, it doesn’t take much to make me cry these days. I had no hope avoiding tears watching the story of blind pole-vaulter Charlotte Brown, and yet, all she does is give me hope: http://es.pn/SIlna4

Blind pole-vaulter in Texas.

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.