Category Archives: Reflections

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

Cognitive Aspects of Superior Canal Dehiscence Syndrome

I received a tweet today from a fellow Superior Canal Dehiscence Syndrome sufferer, @ElzElz, which included this link to an amazing journal article on how vestibular disorders affect cognitive function. I nearly wept. The article details the whole picture, and when I sent it to my wife, she wrote — “Crazy! It totally describes you and your symptoms.”

I’ve had a  good day. Clearly, I’m blogging twice! I also drove 36 miles to Chicago, had a meeting, taught a three-hour class, took a call from brilliant producers and a director who gave me great notes on a script, and I will now drive back home in the snow. It hasn’t always been this good, and believe me, my head hurts and I’m tired. Not to mention, I forgot the names of students, actors, movie titles, and even mixed up a plot line or two in class (but my lecture kicked ass, if I do say so myself.) In my meeting, I felt like maybe I asked for clarification on several points I would normally have processed the first time. Those are small things. Workable things. And hopefully, fixable things. I’m grateful to be as functional as I am, but I’m thrilled that someone is researching the links between vestibular problems and cognitive function, as these are the long-terms symptoms I fear the most.

Perhaps plugging up this hole in my head will help keep the ideas and memories inside where they belong.

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Solving for X: Getting a SCDS Diagnosis

As I have been made to understand it, there is a clear equation, or proof, required for diagnosing a Superior Canal Dehiscence.  The first step seems to be the hardest of them all:

You need 1 doctor who can put together the puzzle of your symptoms into a clearly assembled picture and send you for testing; or, you need to somehow put that puzzle together yourself and find the 1 doctor who understands this problem and will take a shot at investigating it. It’s still new, it’s very rare, but I don’t buy that the modern ENT worth his or her otoscope shouldn’t have heard about this disorder by now. Google lists hundreds of pages about SCDS. It was on The Doctors TV show, famous people have suffered from it and brought it into the news, and there are dozens of journal articles regarding the problem. And yet, it remains so “mysterious.”

If you manage to solve the first part of the equation and get a referral to a specialist, there are many tests that are performed on dizzy people. Dizziness is my primary symptom, and it is what leads to my other complaints of brain fog and fatigue. In some ways, people who have  stronger audiology-related SCDS symptoms should be a tad bit easier to diagnose. Autophony and Tullio are very rare, and strongly indicate a dehiscence to a doctor who is current on the research in his/her field. There are many causes of dizziness, however, and most docs are under the inclination that “it’ll just go away over time.” If you’ve somehow passed through the first stage and found a SCDS-suspicious ally, you will need to have at least 2 tests. First, a hearing test. Most SCDS sufferers have some degree of low-frequency hearing loss. But again, lots of people have that symptom for a variety of reasons, so, in and of itself hearing loss cannot be the smoking gun. That gun is usually the VEMP TEST (Vestibular Evoked Myogenic Potential). If you have a strong VEMP response (which is perfectly comfortable, but very strange to endure), you are allowed to continue your progress to the final proof and solve for X.

It’s all well and good to have lots of symptoms, low-frequency hearing loss, and a strong VEMP, but they have to see the dehiscence in order to fully diagnose the problem. So, step 3 is a high-resolution, thinly-sliced CT of the temporal bone. It was strongly suggested to me that I have the images taken at the location of my doctor’s choosing because that facility is quite familiar with SCDS, understands how to get the best images, and would forward those images to a radiologist with experience diagnosing the disorder. Proof is in the picture. I understand that sometimes they can’t see it. Unfortunately, as I’ve been told, if they can’t see it, they don’t like to operate, so getting a great image and experienced radiologist are crucial in this final step.

And yet, even with a clear image and a reading from a trustworthy radiologist who has seen SCDS before, there can be wild differences of opinion. My radiologist called my dehiscence “slight.” Dr. Hain, the specialist who diagnosed me, thought I should opt for a more conservative approach and let my condition ride for a while longer, while Dr. Wiet, my surgeon, feels a 3mm hole is quite significant, and that my situation is clearly one in need of repair sooner than later. So, I then sought a second and now third opinion just to be sure.

With clear proof and X solved, there comes some relief — mentally. You know you’re not crazy, you’re validated in that someone believed you, and now you have a solid answer. But what you do with that answer is ultimately up to you, whose opinion you trust, and the degree to which you are suffering. I see that big in front of me every day, and still debate what to do with it.

Craniotomy! (The movie) Staring “Honey Badger” Randall

I teach at the DePaul University School of Cinema and Interactive Media. It’s a long, fancy name for what is essentially a film school (a very good one at that, if I do say so myself). And in our school we have some totally AMAZING animators. Emmy-award winners, even! What you will see below is not their work, and it is not totally AMAZING, and there is no sound (who wants to hear a skull saw, anyway), but it does show the process of my coming surgery in a clear, easy to understand and sanitized, unbloody way. Worth a look if you’re interested. Makes it all seem like a no-brainer! (See what I did there?)

I should try to get Randall the “Honey Badger” guy to narrate this. Right?

Vestibular Therapy

As I’ve noted a few times in previous posts, I’ve been undergoing vestibular therapy since August. For most of that time we had no real idea what was wrong with my vestibular system, but we were sure that it was pretty effed up. I was also experiencing muscle weakness,  a ton of stress, and chronic fatigue.

The balance retraining exercises helped me immensely. They were often frustrating and exhausting, which I personally found a bit demoralizing, as at various points in my life I have competed as an endurance athlete — running marathons and racing bicycles over long distances.  So, to be worn out by standing on one foot for thirty seconds kind of broke my heart and pissed me off. But, like with anything I stick with and practice a lot, I improved.

My therapist is a goddess. This is true. And the biggest impact she made on life — keeping me functional — involved craniosacral therapy and massage. Craniosacral therapy is essentially a very gentle massage of the skull using a soft touch on certain pressure points. It’s not in the slightest bit painful — in fact, I sometimes fall asleep because it is so relaxing. This therapy functions to relieve pressure in the skull, which for me was a HUGE problem in my undiagnosed SCDS. My vertigo improves, the pressure in my ear and skull decreases, and my stress level goes WAY down. And let’s face it, SCDS stresses the body in dozens of ways.

Eventually, my neck and upper back were so tight and contorted from the strain of trying to stay upright that she began a massage process after the craniosacral therapy, and within two visits my headaches and back pain had disappeared.

I went for therapy twice a week for about five months, and was able to work, drive, travel, and have some very good days despite the SCDS. And after a bad day with terrible symptoms, the therapy would set me straight again. Now I go as needed. I CANNOT recommend it highly enough. This is a maintenance process, not a cure. And, without great insurance, it could certainly be expensive. Fortunately for me, I only had to pay about $12 per visit — which is basically made up by the coffee and bourbon I can no longer drink.

If you happen to be in the Chicago area suffering from symptoms of Superior Canal Dehiscence Syndrome or any other vestibular problem, I urge you to give her a call.

The Day I Was (almost) Diagnosed

This big dork sitting in a rotating chair wearing funny goggles to measure the movement of my eyeballs as I spun.

This big dork sitting in a rotating chair wearing funny goggles to measure the movement of my eyeballs as I spun.

We received the first real snow of Winter on 11/11/13, when my wife and I trekked into downtown Chicago to visit with Dr. Timothy Hain at Northwestern. Six hours of testing finally revealed a likely answer to a then five month quest for answers to my symptoms. The VEMP test on my right ear was off the charts and a very strong indicator, as was low frequency hearing loss, pulsatile tinnitus, measured and documented vertigo, and the fact that a tuning fork placed anywhere on my body would only hum in my right ear. It would take a high definition CT Scan to finally prove it, but we had a solid answer: Superior Canal Dehiscence.

I remember….

I remember the Outer Banks, taking my daughter fishing for the first time, and being completely unsteady on my feet crossing the pier. The planks seemed as if they were moving. The surf nearly knocked me over once we got into the water, and negotiating the sandy beach left my legs burning and exhausted.

I remember going the opening game of the NFL season to cheer on my (disappointing) Bengals as they played the Bears at Soldier Field. Our seats were very high. I didn’t move from my seat during the entire game for fear I’d fall over. I couldn’t even wear my prescription eye glasses because they caused me feel unsteady.

I remember going to a RUSH concert where the Blackhawks showed up with the Stanley Cup. If not for earplugs I never would have survived the concert. I felt swooney from the noise.

I remember cheering my Kentucky Wildcats as they opened the season against Michigan State in Chicago, and between my clapping and all the shouting in the arena (they lost), I felt my whole body was vibrating through that night and into the next day.

I remember going for a jog one week after running 6.5 miles in an hour, and stopping at the end of the block, turning around, and walking home because I was already exhausted.

I remember not being able to clearly understand what the University Provost and my colleagues were talking about three feet away, because I couldn’t filter out the noise.

I remember falling into my garden, destroying a broccoli plant, and fearing I had broken my hip.

I remember taking naps under the desk in my office because my computer screen would set my head to spinning so bad that I had to rest every 15 minutes.

I remember the horror of quitting caffeine and the sadness of abandoning bourbon.

I remember breaking down in tears upon my first visit to the vestibular therapist. She’s a tiny little lady, and I’m a 6’4″, 200 lb man, and when she did strength tests on me I could offer no resistance.

I remember not being able to remember how to put my little boy into his car seat.

I remember trying to write and finding that I had no words.

Interesting Stat

A friend of mine who specializes in Search Engine Optimization told me that roughly 1,300 people web-search the exact phrase “superior canal dehiscence” each month. That’s not many people given the web-surfacing population of the planet. What needs to happen, and I’d like to help if possible, is that when people google the most common SCDS symptoms like “pulsatile tinnitus,” or “I can hear my eyeballs move inside my head,” they are lead to good information that might allow them to investigate this disorder. People need to be able to connect the dots. Clearly everyone with tinnitus and low frequency hearing loss does not have SCDS, but if they also have autophony and some degree of vertigo, they just might. If people could see the symptom they searched appear along with the others that define this syndrome, perhaps they’d be able to get doctors to take notice and dig deeper.