Tag Archives: brad riddell

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.

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?

It’s Who You Know

Not too long ago, I was fortunate to have the opportunity to do some rewriting work on a movie that was going into production. A certain public figure I had long admired performed a cameo in the film, and while I didn’t ever get to meet this person, I was able to write some of the dialogue he spoke, which I not so humbly bragged about to my friends and family.

Turns out, this person had superior canal dehiscence surgery shortly after the movie, and a quick email to the film’s producer landed me his contact information. He was eager to talk once I explained my situation. We chatted at length last week, and it was fantastic for me to speak with someone else about symptoms, diagnosis, surgery and recovery. While no doctor himself, our public figure felt surgery is probably the right choice for me, but recommended I seek the advice of his surgeon, Daniel Lee of the Massachusetts Eye and Ear Infirmary, who is regarded as one of the top docs in this field. My new friend emailed Dr. Lee after we hung up, and the good doctor wrote me back instantly.

Dr. Lee confirmed that my Chicago surgeon, Dr. Wiet, has an impeccable reputation, but given the scope of this surgery and its potential impact on my life, I felt it couldn’t hurt to have one more opinion, especially from a surgeon of Dr. Lee’s stature.  My images and medical records are on the way to him as we speak, for what will amount to a third opinion on my skull.

Hollywood has always been a “who you know” business, but it’s sometimes harder to find out exactly what you want to know. In this case, one movie helped me luck into both.

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.

Cold Feet?

It’s going down to -18 tonight in Chicago with an incalculable windchill factor, but these cold feet of mine have nothing to do with the weather. I’ve been reading data and support group message boards (against the wishes of my dear, loving, and supportive wife). It seems to me I’ve been far more functional with this syndrome than most, that my dehiscence is on the small to average side, and that there are a whole lot of difficult recovery issues for many people, some of which are long-term and debatably worse than their initial symptoms. It’s a tough call. Vestibular therapy and that little dose of valium every night have me far more functional than I was in the summer and fall. I still feel symptoms at least once a day, but they are comparatively moderate relative to what I remember being the worst of this problem. My surgeon said that if he were my age, and given the complication that could arise without repair, he would do this surgery if it were him. There is a strong chance that at some point my tegmen could fail, allowing the brain to herniate into the ear canal and start dumping spinal fluid down my throat. And yet here I am, a day after coming out to the world, thinking “not so fast….”

Surgery Date is Set

Yesterday I heard from Dr. Wiet’s surgery scheduler. Because he needs to to perform the operation in tandem with a neurosurgeon, scheduling can be tricky — but we finally have a date: February 12, 2014: I’ll check in at 5:00 AM, the Surgery will begin at 7:00 AM, and it will likely take four hours.

It’s a funny feeling. You search desperately for answers for so long, then suddenly you have an answer and hard date when the issue will hopefully be resolved. There’s relief and excitement, but also a good bit of worry with the understanding that this all just got real. A craniotomy.  Dr. Kazan is the neurosurgeon who will be working with Dr. Wiet, and I’ll visit with him soon.

I’ve decided to try exercising again. I can’t do nearly what I used to do, but I figure the better shape I’m in before surgery, the faster I’ll recover afterward. The valium helps to manage my dizziness, and if I lay still for a while after riding my exercise bike, the pressure subsides in a few minutes. I can do about twenty minutes now at very low intensity. Better than nothing!

Superior Canal Dehiscence Saga Part I: The Quest for Answers

My body is constantly fatigued. Like Sandra Bullock at the end of Gravity fatigued. My concentration and short-term memory are fried. It feels as if my brain is floating loosely in my skull and cannot keep up with the movement of my eyes.  I turn my head right, and my brain locks in two seconds later. I have the balance of a drunken toddler. My head pressurizes like a hot air balloon with the slightest bit of physical activity. Throbbing pulsatile tinnitus keeps me awake at night. Loud noises stab through my skull and make me vibrate like a human gong. The slightest bit of emotional stress instantly sends me over the top. I’m the fractured shell of a man who one month ago set a personal best in a 5K and was routinely running over thirty miles a week at a nine minute pace,  but now is stuck in bed at noon. I have no answers as to why I feel this way, and I won’t have even the slightest clue for another seven months.

 July 10, 2013: the last entry in my iPhone training log. I ran 6.5 miles that day, and entered this note: “Muggy. Too early.” I didn’t feel very good as I cooled down, and must have rationalized that an earlier than usual start (to avoid the blazing heat) had caught my body off guard. Two days earlier, on my 41st birthday, I had cut a run short in the rain because my quads were burning – I found this unusual, but chalked it up to overtraining as I was trying to quickly ramp up for a 10K race. Since May 1st, right after the Kentucky Derby (and a hangover that lasted a week), I had lost close to thirty pounds in about two months through a strict regimen of diet and exercise. I was finally getting healthy after two years of severe sinus and lung trouble. I looked and felt like the guy I wanted to be. I was writing well on a screenplay that I cared a lot about. It was summer. It was all good. Or so it seemed. I haven’t gone for a run since.

 I took a few days off but didn’t recover. It couldn’t be dehydration after a week. I began to notice my heart constantly pounding in my right ear. A veteran of a thousand ear infections, this was nothing new to me, but my ears were ventilated with tubes and my sinuses were as healthy as they’d ever been. High blood pressure? No. I was 110 over 60 with a pulse in the low 50s. Within a day or two, I began to feel twinges of swimminess and disorientation. My balance felt off. A bit of trouble with our rental house in LA sent me over the edge with stress. And then the fog descended: a deep gray mist of dense confusion. My brain simply would not concentrate. Forget writing, I barely had enough focus to work the phone and make doctor appointments. I had to quit my three-cup-a-day coffee habit cold-turkey, as even a decaf latte would set the room spinning and my anxiety soaring. Alcohol was impossible, too. One drink made me feel like I’d downed the whole damn bottle, and then I felt hungover for two days. A gorgeous Outer Banks vacation was squandered lying in bed due to what had become full-on vertigo. In the course of about three weeks, I had gone from 60 to zero. Dead stop.

 The previous November, I had my third sinus surgery to clear polyps and ease chronic infections. I’d spent the better part of eighteen months, as we moved from LA to upstate New York and then to Chicago, living on antibiotics and steroids. The surgery was supposed to help, but it didn’t, and I became even more sick. My ENT put me on a regimen of gentamicin rinses to kill the highly resistant infections in my sinuses (I had more than one bug at a time). Essentially, I would water board myself with liquid antibiotic. I’d hang upside down off the side of my bed and fill my sinuses to the brim with this stuff twice a day for six months. It worked. The treatment killed everything and allowed me to recover and regain my fitness – until July, when I began to think this treatment was the cause of my new problem. Gentamicin is ototoxic.  It kills the little hairs in your inner ear that are essential to the operation of your balance system. In fact, they use it to destroy the vestibular function of people with such severe vertigo that it cannot be cured or mitigated. It is ear poison – the nuclear option – for people who have no other way to stop the world from spinning.  Given that my ears were ventilated with tubes (negating the natural reverse pressure of the Eustachian tubes), and that I was filling my head with liquid while upside down, there was a strong chance that the ototoxic gentamicin had reached my inner ear and permanently damaged my vestibular system. My ENT assured me that if this were the case, my brain would eventually figure out how to cope with the situation. It’s called “neural plasticity,” he said, and it could take up to two years.  I wasn’t settling for that.

My primary care physician cautioned that I was just getting older and these things happen. She suggested that maybe it would all just go away. An ER doctor took a CT of my abdomen and determined that I simply had a bad case of gastritis. I was referred for a psychiatric consult, as perhaps this was a chemical disorder of the brain. It wasn’t. A Chinese Medicine herbalist told me that I was just allergic to absolutely everything.  The acupuncturist said he could fix me in one visit. I let him try twice. The dentist thought it might be my wisdom teeth perforating my sinuses. I was sent to an endocrinologist who informed me that all of this trouble might be the result of “low-T.” She referred me to a urologist who didn’t think my T was too low, but was willing to give me the testosterone anyway…just because. My physical therapist believed that I was suffering from Benign Paroxysmal Positional Vertigo (BPPV), and we began a series of exercises and Canalith Repositioning Maneuvers to clear crystals from my vestibular canals. That didn’t work either, but she became a great gift to me, and was able to reduce my symptoms through massage, manual manipulation, and balance exercises that ultimately restored enough function so that I could return to work and appear to most people as relatively normal.  Finally, and you would think obviously, I was referred to a neurologist who ordered an MRI of the brain. I waited a week. MS? CF? Brain tumor? I finally called her. “Oh, sorry! Yeah, it came back clean. Good for you!”  While I knew it was utterly ridiculous, morbid, and disgusting, I was actually hoping they would find something. Anything. An answer.

I begged my ENT for more options. Surely there must be a true specialist I could see. I’m not sure why it took him six months, but he finally referred me to a specialist in Chicago at the Northwestern Medical School: Dr. Timothy Hain, known as “The Dizzy Doc.” Dr. Hain is a world-renown dizziness expert, and, not surprisingly, it took me six weeks to see him. I spent an entire day undergoing tests and evaluations the likes of which were once done in secret cold war labs far below ground in the 1950s. Spinning chairs, metal probes, sound booths, cold and hot air injected into my ears….  After five or six tests, it became clear to everyone in the office that, “yes, you have a problem! But….sorry, we still don’t know what it is.” I was losing hope again just before the last procedure of the day, called “The VEMP Test.”  When it was performed on my left ear nothing happened. When we did it on the right side, the walls of the room started jerking up and down as if I were pinned to a trampoline being bounced on by a gymnastic giant.

Ah-ha!

The tech ran to get the doctor, they conversed, and then he asked: “Brad, can you hear your eyeballs moving in your head?” Indeed I could. It was a grating, sand-papery swishing sound. They put a tuning fork on my head – I heard it clearly in my right ear and not my left. They put the fork way down on my left ankle – again, clear as a winter church bell, but only in my right ear. The answer finally came: “You, sir, have a hole in your head. Probably.”

The suspicion was that my particular demon was named Superior Canal Dehiscence, which essentially means there is an opening inside my skull, below the brain and over my ear canal, which creates a “third window” in my head causing sound vibrations to bounce around inside my brain. It also throws the balance system for a loop, so to speak, which makes the brain work incredibly hard to maintain basic equilibrium, thus the leg weakness, brain fog, memory loss, and fatigue.  It had begun to also affect my spine, as the strain of remaining upright was contorting every muscle in my neck. Autophony, or hearing the internal sounds of one’s own body – pulsatile tinnitus, eyeball movement, even creaking joints, jaw and vertebrae – is another major symptom, as is the tullio affect, or sound-induced vertigo. Loud noises rattle the brain and create dizziness as a result of this condition. It all made sense after seven months. But, in order for it to be real, it had to be confirmed by CT Scans and MRIs, which took a good long while and a lot of deliberation, as my dehiscence was only 3mm wide. So small, and yet so damn disruptive.

I met with two Chicago surgeons who have experience with Superior Canal Dehiscence and discovered that there are two surgical options. The first is the less invasive “transmastoid approach,” which is an outpatient surgery with few complications, but it does not allow the surgeon to actually visualize the hole, and has a lower likelihood for success. The “middle fossa approach,” which involves a craniotomy, allows for better visualization and a greater chance for success, but comes with significantly more risk. Because the second surgeon I met with believes there is need for a more extensive repair to my tegmen (the boney shelf inside the skull that holds the brain in place), I’ve opted for the craniotomy. So, essentially, you fix a small hole in the head by creating a much larger one!

 Why does this happen? They believe it’s congenital. Some people are born with weak spots over the inner ear, and that at some point, usually in a person’s 40s, the bone just pops open. You could blow your nose too hard, get hit in the head, or maybe it’s even the result of chronic sinus and ear infections. Perhaps my bones have been weakened by Celiac disease. Who knows? Superior Canal Dehiscence was not first discovered until 1998. It’s so new and so rare, in relative terms, that the two surgeons I spoke with have only performed thirty of these repairs between them – and yet they do hundreds of more complicated procedures each year. The effects of the “syndrome,” or the symptoms a person feels while suffering from the dehiscence, vary in type and intensity from one individual to another. How many people are dealing with this and have no idea what it is, or are getting the wrong answers? How many people don’t live in a large city with top-notch medical resources, or don’t have the insurance I do, or don’t have the time and perseverance to push through the walls of this medical corn maze to find the exit? It’s sad to think about. I’ve let my (now former) ENT know exactly what my diagnosis is, in hopes that should he run into it again, he’ll be able to help people faster.

Here’s how it goes: they shave a strip of hair behind my right ear, make a four inch incision, then push aside the skin and muscle to expose the skull. They cut a hole in my skull, move my brain out of the way, visualize the bone over the ear canal, and using a mixture of bone paste and my own bone fragments, they putty the dehiscence like you would a hole in the wall. Using that same paste, they will fill and reshape the tegmen (brain shelf), then resurface the skull, reinstall the bone flap they cut loose, insert titanium plates to hold it together, and close me up. It is estimated I’ll spend three days in the hospital, be recovered enough to return to work within two weeks, and be fully recovered within eight. The results, it seems, have been good over time. I’ve read about people who have returned to rock climbing and playing instruments in orchestras – two things I can’t fathom doing right now given how I feel. But there are risks. Some people lose their hearing entirely on the side of the procedure. There are also risks to the brain, so a neurosurgeon, Dr. Kazan, will be assisting Dr. Wiet in the ER. In the meantime, I’ve been taking a 2mg dose of Valium before bed, which has dampened the vertigo and other symptoms significantly. But, on the flip side, it also further depletes my sense of balance, making me more prone to falls. It’s a temporary remedy, but not a long-term solution.

I feel now that surgery is the only option for me. I have a young family, a creative and academic career to sustain, and a lot of running left to do. It’s time to get fixed.

We’ll keep you updated.