Tag Archives: Superior Canal Dehiscence

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.

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.

A Visit to Dr. Daniel Lee

Hi everyone.

This week I flew to Boston to visit with Dr. Lee and discuss my situation. I was his last appointment of the day, but he spent a lot of time with me, and we had a very thorough conversation.

So….the audiogram and VEMP tests were negative on the left (unrepaired) side. We know from films that there are holes there, but Dr. Lee seriously doubts my symptoms are coming from the left given the results of these tests. My hearing is quite acute in the good ear. I do suffer from very mild autophony and hyperacussis, but they do not impede me much day to day.

Without a read on my new CTs yet, and not having fully reviewed my post-op notes, he suspects my remaining symptoms are coming from the repaired side. Why? Don’t know yet. Maybe the repair did not take. One other hypothesis is Hydrops. I had a bout of that many years ago when a doctor in L.A. suspected meniere’s disease. I corrected it with diuretics and a low sodium diet for several months, and then it just went away. Dr. Lee thinks this may work again, but we have no way of knowing. So I’m going to give that a shot beginning very soon. I’ve been taking a very low dose of valium, and he wants me weaned off that, to give my brain a chance to really adjust to the information — however screwed up — it’s receiving from my vestibular system.

With regard to the left side, it’s good news that I’m not showing symptoms there, but it kinda broke my little heart when he told me that it would have to be an extremely dire situation for him to operate on my unrepaired side, for fear of making me fully deaf. He said round window occlusion might be an option, but he would prefer to do nothing.  And he did confirm that in general, dehiscences do grow and progress over time. So…yay!

I’ll await his further opinions while back in Chicago, but in the mean time, I’m trying to stay positive, be grateful that I remain able to do most things I want to do, continue to stay as fit and productive as I can be, and research every possible option for holding this thing at bay.

I went for a walk to MIT and back the night before my appointment:

MIT at Sunset

MIT at Sunset

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

One Year Ago

Today is my birthday! (Please excuse the exclamation point.) A year ago today it was muggy and rainy as it is now, and I went for six mile run which I barely finished. I had worked my way up to eight again after years off from distance running. That was the day I began to realize something was wrong, but as you can read in My SCD Story, I had no idea what I was about to face. A year and one craniotomy later, I’m still facing it — but at least it has a name now, and I have a few new tools for fighting it.

For the past sixteen days I was in Germany. I travelled with my warrior wife and two small children to a time-zone seven hours away. I got my first ear infection in my repaired ear on day one of the trip, but armed with emergency steroids and antibiotics, it was sent packing fast. I had several good days to start, then relapsed into symptoms that felt a lot like the beginning of everything a year ago. It’s the left ear acting up, reminding me of those holes still in my head.

Despite the downturn, though, and the hearing loss and tinnitus, I have a lot to be grateful for only five months removed from surgery.

The fact that I made that trip  — two 18 hour travel days, hustling through airports, walking through big cities and across open country side — is pretty incredible to me.

I’m able to write on most days without serious brain fog, though cranking out a letter of recommendation yesterday with the jet lag was pretty rough. I have lots of projects cooking again which give me energy and hope. I find, for whatever reason, that pain relievers and swelling-reducers lessen the pressure that builds in my skull over time, as does sleep, so I’m hoping to find a healthy balance there. Can’t live on tylenol, I guess. I’m also beginning Cognitive Rehabilitation Therapy today, hoping to sharpen up and take the fight to memory loss and brain fog. Taking consistent breaks from the computer screen every 20 minutes helps, and forces me to waste less time. Avoiding stress, or coping with it well, helps, too.

I worked in my garden for two hours yesterday, which was necessary given that it had been neglected for over two weeks.  I can walk a couple of miles at a time. Occasionally I can jog if I keep my eyes on the ground and not on the bouncing horizon.  My legs get tired really fast, and bending up and down makes me dizzy, but avoiding those kinds of situations won’t make it better, and does not teach the brain to adapt, so I plough through it.

With consistent stretching, I think I’m learning to manage SCDS’ power to twist my body into painful knots. My neck, shoulders and left hip/leg are still problem areas, but I’m working on it with PT, VRT and Yoga. I stretch a lot, and spend a lot of time and money working for equilibrium these days, but I’m lucky to have these options and opportunities.

I’ve learned that sodium, caffeine, alcohol, and sugar make me feel worse. Add that to my gluten free diet from Celiac Disease, and the fun food options quickly become limited — but also more healthy in the long run.

My loving sister-in-law is an incredible audiologist, and she is going to be able to get me a great deal on cros hearing aids if I want them. I’m still trying to decide if I need them yet. I feel the loss at work more than at home, so I probably should. The neuromonics tinnitus therapy is still a bit out of our price range, and while it’s bothersome, I’m coping with that fairly well most days.

So, as I gain a year today, I’m hopeful but not content, inspired but not naive, and better but not well. I may never be all of what I was, but I can try to be the best at what I am now.

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