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.

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.