Back in the Saddle

I’ve mentioned here before that a long time ago in a land far, far away I was a serious cyclist. I had been wary of riding post-surgery given that I didn’t know how my vestibular system would respond. Turns, out — pretty good. I ride this dual-suspension mountain bike that eats up most of the hard jolts, I try very hard to stay hydrated, and now I’m able to to ride again! I owe my return to the trail to a friend of mine, Dave Wiseman, who lives nearby and builds beautiful fat tire bikes. With Dave as my chaperone, I took a couple slow tours of a ten mile trail near my house. I’ve gone out five times since, twice in the rain, once in over 90 degree heat, and once I got lost, but I have been able to cut twenty minutes off my original time! My ride today was 10 minutes faster than Friday’s, at 12.8 MPH.

When I redline on a hill it causes me to feel pressure in my head. Dr. Hain says that’s something I just have to try and push through, but I also don’t want to get the major dizzies 10 miles from home. If the swimminess and pressure sticks around post-ride, I take a betahistine (miracle drug) and Aleve (works best for my head), then drink a bunch more water. After a while the swimminess goes away. At this point I’m pretty certain that seriously anaerobic heavy-duty mountain climbing at max threshold would not be possible. I have a sense that I could ride myself woozy pretty quickly if I weren’t careful. Maybe training will push that threshold higher. Maybe it is what it is. Either way, it was good to be passing people again. (Once a racer, always a racer.)

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The Superior Canal Dehiscence Tractor Beam

Try though I might, I can’t run anymore. My shredded vestibular system cannot handle the vertical rise and fall, and the pounding of the road makes me feel foggy. Plus, there is a limited range in which I can keep my heart rate steady before it feels like my brain will rocket right out of my skull. These are small complaints. I feel mostly okay most days doing what life requires of me, and often more. I feel like I remain more active and energetic than a lot of people. Lately, since it warmed up, I’ve been feeling pretty darn good (knocks wood). So I’ve been walking a lot. Today I did four miles. Walking doesn’t bug my brain, and it’s helping me dump weight – far more slowly than I used to, but it is what it is. Still, there’s this streak in me that gets all uptight and angry when someone runs past me. I should be grateful to be outside exercising. I definitely take my recovery for granted. But I suppose I’ll never shed that competitive streak that got me over mountain tops on a bike, allowed me to descend at 60 MPH to catch the pack, and pushed me across the finish line of a marathon. I used to target people when running or riding. I’d imagine I was pulling them in with a tractor beam as I tried to catch them. It’s not the same when walking. Walking is what you do when you go to check the mail.

Anyway, my good friend Alex told me I should be glad that I got to do all of those things before SCDS hit. Most people don’t. And, of course, he’s right. But some part of me continues to grieve the loss I feel for pieces of my old self.

Tensor Tympani Myoclonus

It seems I’m officially the Louvre of collecting strange middle ear problems. So, now, in addition to the Superior Canal Dehiscence Syndrome and Meniere’s Disease, I’ve also been diagnosed with Tensor Tympani Myoclonus. How ’bout them apples!?

What is it? Essentially, it’s a muscle spasm in the inner ear that causes the eardrum to rattle. It sounds like a tympani drum striking inside my head. And it’s fairly constant.

I should have knocked wood more often, because I had just been telling people how Betahistine combined with a diuretic had really helped me get back to feeling close to normal and productive. So this is an obvious bummer, and it makes sleeping without drugs kinda tough.

How does it happen? Well, this muscle is designed to flex when we encounter sudden loud noises, or sustained noise, and works to dampen the sound to prevent ear damage. It’s kind of like a blink reflex protects your eyes from sudden bright light or flying debris. I saw Dr. Hain at Northwestern today, and we discussed possible causes. It could be that due to a Dehiscence on my left side and the resulting autophony symptoms, that this little muscle became overworked trying to protect me. It could also be that I’m too stressed, which they believe is a factor.

So, I would caution everyone, but especially those with inner ear disorders, to protect their hearing in whichever ears they have that still work. I went to the Final Four a few weeks ago, wearing ear plugs, but that may not have been enough.

He prescribed a muscle relaxer, then told me to try and chill. Which is funny. I’m planning to shoot a movie, trying to get tenure, and have two small children. So, relaxation is hard to come by. He also recommends the removal of the ventilation tube in that ear in case it is contributing to the irritation.

I’ll check back in later with more details. In the meantime, knock wood if you are feeling well, and wear hearing protection. Here’s a link to a description of the disorder.

Support a movie?

Hey y’all, I’ve written a short screenplay that came out of the aftermath of my SCDS surgery experience. I’m not directing this one, but I’m a big fan of the woman who is, and she’s raising a little bit of money to pull it off. This will her MFA thesis film, so kind of a big deal for both of us.

Take a look. Even a $1 helps!

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.

Happy New Year!

It’s been a few months since I’ve posted, and I’ve received a few requests for updates, so–

I’ve been taking one diuretic pill a day, and I think it’s helped to reduced pressure in my head. Perhaps I had some secondary endolymphatic hydrops going on in my repaired ear, and the pill helps me move that fluid out. I do still notice a very strong reaction to salt. Eat too much and I get a floaty head, feel pressurized, and can hear my heartbeat in my unrepaired ear. I think the diuretic helps keep that in check as well.

I had an MRI done with and without contrast to determine what my inner ear looks like on the repaired side, and if the patch is holding. So far, we can’t tell. I’m seeing Dr. Wiet again soon to get a new CT and on both sides, to check the surgery site, and also look at my other side as my unrepaired ear has been feeling a little wonky, too. At this point my only option on that side would be a round window occlusion, but everyone seems very reluctant to work on me given the chance that one mistake could leave me deaf. Round Window seems the safest route of them all, and I’d bet good money that someday I’ll be getting gowned up for that procedure.

I still have strong, constant tinnitus on the repaired side, as well as skull aches on that side and weirdly, a lot of tension and knotty soreness in my neck and lower back on that side, too. It has to be related, but no one can seem to tell me why yet. I’m going to visit a neuro soon. But for now, I travel with a bottle of Aleve, see a chiropractor twice a week, and get massages when I can. It’s a maintenence game at this point.

Fatigue and stress really exacerbate my symptoms, as do noisy, chaotic environments. But, that said, I’m finally ready to say that other than the hearing loss and skull/spine issues, and occasional brain fog/ dizziness, I am better than last year in terms of SCDS symptoms. I think a lot of that is adjustment and coping, some of it is probably the surgery.  Cognitive therapy has done a lot for my thinking, creativity and stamina, and frankly, so has just regular old therapy. Talking out the emotional aftermath of this process, and setting goals for the future, and working out the weak spots in my brain are really helpful, and I’d recommend it to anyone pre or post-op.

Another big boon to coping and recovery has been hearing aids. I have a set of Phonak Cros-Aids that pick up sound from my dead ear and transmit it to my good ear. They have restored a more normal range of hearing, and my brain has begun to actually figure out which side the sound is coming from, even though all of the sound goes into one ear. Pretty incredible. I find them particularly helpful in restaurants and meetings. They don’t help with the tinnitus, but to my surprise, they also don’t make loud noises any worse, which I obviously appreciate. They are super tiny, and only very rarely does anyone even notice that I’m wearing them.

Phonak Cros-Aids

I have a very big year ahead of me professionally and personally, and one of my resolutions is to not let my health situation be a constant topic of conversation. I’ll write the blog now and again, and share new information with friends and family as necessary, but I need to try to move on. I’ll keep actively seeking answers, opinions, and options to improve my quality of life, but I don’t want to keep defining myself with this thing anymore. I know I’ll have bad days whenever a storm front rolls in, or I’m too tired, or I fail to eat well, or some other random event scrambles my brains and balance. But I’m having some good days now, too, and my goal is to focus on those and stay in the goldilocks zone as often as possible.

Thanks for reading, and I hope 2015 brings health and happiness to you all.