Category Archives: Reflections

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

Pre-Op Preamble

In addition to generous colleagues covering my classes and committees, friends and family caring for my kids and bringing us food, and all manner of offers to provide help (including the procurement of a helicopter should the need arise), I got a pep-talk today from my Dad, the Coach —  so I’m all set.

This is but a small note of enormous thanks to you all. I’m humbled, and deeply, deeply grateful for your care and concern. See you on the other side.

Advertisements

Significant Others and SCDS

Here are some things I know:

  • Many millions of people suffer from and in conditions far worse than I’ll ever know
  • I’m lucky my SCDS hasn’t completely debilitated me
  • I’m lucky I received my diagnosis relatively quickly compared to most
  • I’m lucky to have fantastic resources and live in a great big city full of amazing docs
  • I’m lucky to have wonderful friends & family, and an incredibly strong, loving, powerful wife

You’ll hear from Tina soon as she’ll be posting for me before, during and after surgery. This ordeal has been an incredible burden on her. I have been forgetful. I have been absent: both mentally and physically. I have been weakened. I have been unproductive. I have been emotional, confused, and frustrated. I have been difficult. I have been off balance — literally and figuratively. My wife has born the brunt of this. She’s seen everything that the people who tell me “you always seemed fine” never saw. She’s been a take-no-shit, give-it-to-us straight, relentless demander of answers. Most importantly, knowing I’m scared and conflicted, she’s been a brave warrior to my face, even thought sometimes I catch her with tears in her eyes that she is quick to wipe away.

It’s tough to constantly remain positive, helpful, patient and supportive. It’s a terrible burden to want desperately to help someone you love, but feel utterly powerless to do so. The thing is, she was never powerless. She’s been nothing but power as my second backbone, my balance-booster, and my “take a deep breath” commando. I love her, I wouldn’t be where I am without her, and having her in my life is the one way in which I am the luckiest of all.

 

SCDS on ABC’s Grey’s Anatomy

ABC’s medical drama GREY’S ANATOMY once did an episode featuring a story about Superior Canal Dehiscence Syndrome, wherein a patient is thought to have schizophrenia due to the sounds she hears in her head, but truly suffers from SCDS. It’s episode 622, called Shiny Happy People (presumably named after one of my least-favorite R.E.M. songs).

Here is a story about the show. You can watch it on ABC GO, and see the preview here on Hulu.

Superior Canal Dehiscence Syndrome, Grey's Anatomy

False Flats, and SCD Surgery Recovery Time

I once was a biker: the kind who wears spandex and clip-clopping shoes. Not the kind with deafening exhaust pipes, Grim Reaper tats, and Kaiser helmets. Back when I was riding and racing, I hated the hills. And I lived in Kentucky!  I’m big for a cyclist at 6’4″, and I raced at 169 pounds. Since then, I’m no longer all thighs and calves. I carry a different kind of spare tire now and my handlebars are on my back.

Due to my size, and my low-strength-to-weight ration, I was not a good climber compared to the wafer-thin 5’5″ guys who could squat a Volvo. I would almost always lose contact with the pack on the steepest climb of the race, which forced me to take risks and catch up on the descent.

This one time, though, I was hanging in there. I was at the back of the pack, but still on a wheel, and I could see the top of the hill. I was certain I would make it, so I hit the thrusters and moved to the front in an effort to take advantage of my natural plummeting skills. I was great at going downhill really fast. (Except for the time I crashed at 55 MPH, but that’s another story.)

So, I got to what I thought was the top of the hill as I pulled to the front of the pack, but lo-and-behold, it was a false flat. There was at least half a mile of hill left and I’d burned up my boosters. The little guys saw me falter, put the hammer down, and left me for dead.

I hit a false flat with regard to my Superior Canal Dehiscence surgery a few posts ago when I wrote about feeling peace and calm descending. It was there for a brief second, then sped away faster than a pack of PED-enhanced cheetahs when came the news that I’m bilateral (I have dehiscences on both sides), and that Dr. Lee in Boston recommended endoscopy, which I wasn’t sure my surgeon here would or could do.

I emailed Dr. Lee and Dr. Wiet with more questions, and being the caring professionals they are, they got back to me with their thoughts. Dr. Wiet does use an endoscope and will have it at the ready if necessary, but doesn’t think he will need it. He and Dr. Lee differ on the approach, but in the end, knowing it’s there if he needs it, and that I’ll have world-class hands in my head only 20 miles from home, helped me to decide I should stay in Chicago. Dr. Lee speaks very highly of Dr. Wiet, as does his former patient Elizabeth Nielson whose testimonials are on my video page. So, I’m staying in Chicago and I’ve finally felt good about it for two days in a row.

Dr. Lee also answered questions about recovery. He said that in the 250 SCD patients they’ve treated, they have often seen untreated symptoms grow worse over time. He said that patients who face the toughest recoveries are generally 1) Women 2) bilateral people with large holes over both ears, and 3) people who suffer from migraines. While I am bilateral, my holes aren’t huge, I’m a dude, and I don’t have headaches. I suppose in this one situation, I lucked out. It stands to reason that if symptoms do generally get worse over time, which means my holes could possibly get bigger, why wait and force a further compromised lifestyle and more difficult recovery down the road? Right? (You all just said “right!” Right?)

So, now it would seem I’ve made it over the top of the false flat. It’s gonna be a fight to catch the pack, but I’m gonna tuck in as tight as I can, and hope to bomb down the mountainside of surgery and recovery as quickly and carefully as I can.

10 days to go.

Decision Making with SCDS?

So, I’m supposed to make this huge decision that will, without a doubt, impact the rest of my life in one way or another, whilst one of my key symptoms is cognitive disruption? Everyone puts it on you in this process: how bad do you really feel? Which approach? Which doctor? When do you want to do it? I’m fortunate to be highly functional given some of the cases I’ve read, and yet, it’s incredibly hard to trust my decision-making ability right now.

Surgery is two weeks from today.

Pre-op Peace and Calm

Yesterday, I had a long talk with my good friend, the brilliant novelist Katrina Kittle. (That’s not a humblebrag, it’s just a straight-up brag. I call her my sister, and isn’t it okay to brag on family? Besides, I’m adapting her novel The Kindness of Strangers, and you HAVE to brag on your projects in Hollywood or no one notices [Yes, that was a humblebrag]). Katrina has been through some tough health stuff in her life, and I needed to hear her advice because she is as strong, healthy, and vibrant a person as there is on any snow-white plot of Midwestern earth right now.

I told her I’ve been waiting for peace and calm to descend, but it hasn’t. I said that I feel guilty for worrying and making such a big deal out of this thing when gillions of other people face far, far worse challenges each day without the support and resources I’m very fortunate to have. The logical part of my brain (the side without the hole in it) realizes that this is the right thing to do, but the other side has a lot of doubts, and is being a brooding, yellow-bellied, fraidy-cat, coward. Katrina made brave choices in her life and it has worked out well. She validated my fears and let me off the hook for my guilt. She listened and supported, as have all of my wonderful friends and family. But I still felt torn. Unresolved.

Then, just after we got off the phone, on one of the facebook support groups I follow, another brave woman made her first new post, three-days post-op. She was smiling. She was happy. The pain was diminishing, the dizziness was tolerable, and she was POSITIVE it had worked. Looking at her shaved head and big bright smile, knowing she was glad she’d done this, that she was happy she’d taken a risk to improve the quality of her life, I finally felt it descend…Confidence. Peace. Resolve.

All I really needed was an image. A picture of success. That’s what it took. If anyone else who is reading wants to send in a picture of SCD-surgery success, I’ll be happy to post itI

Waffling on SCDS Surgery (Again)

superior canal dehiscence surgeryThey say you are what you eat, right? Today, this is what I had for breakfast, and it is also what I’m doing (again). As a writer, I know it makes for a much more compelling dramatic story when a character is conflicted, but in real life it can get tiring and silly for your audience of friends an family, and exhausting for yourself as the protagonist. Sorry, y’all!

What I really need is a Magic 8 Ball to decide superior canal dehiscencethis whole mess for me once and for all. Anyone still have one of those laying around that I can borrow?  I used one to choose which film school to enter, and that seemed to work out okay.  My friend has a talking Yoda, maybe that’s who I should really be consulting instead of an endless slew of doctors!