Tag Archives: Dr. Richard Wiet

Two Weeks Post-Op: MYRINGOTOMY!

I’ve been foggy and tired the last two days. I’m not sleeping well at all, and PT takes a good bit out of me. So there’s all that, as well general recovery and the left (un-repaired) ear doing its thing now. I get dizzy when I lay flat, but that passes after a minute or two. And when I’m walking, it sometimes feels as if I’m looking through long camera lenses without the benefit of steady cam rig. It’s bouncy and distant. The ups and downs of car rides — the vertical bouncing — also throws me for a loop here and there, but is getting better.

At my two-week followup today, Dr. Wiet evaluated my hearing, which has improved slightly on the prednisone. I can’t hear well in that ear at all, but I can hear more, which is encouraging. He performed a myringotomy on the repaired ear. That means he cut a hole in the eardrum, vacuumed out the inner ear as best he could, then placed a tube in the hole to keep the ear open in hopes that it will help the remaining fluid drain and dry. I’ve had many of these procedures  before to relieve ear infections, so it was nothing new. Not pleasant, but certainly familiar. He was able to pull away a lot of fluid from the inner ear and I was relieved to feel it go.  I do notice much less pressure in my ear and skull, and I think I can hear even better, but we did the audio testing before the tube was inserted, so it’s hard to say for sure.  I’m supposed to go back in two weeks , and of course, keep pumping the roids.

My PT noticed some swelling and green coloration around my eye yesterday, so it’s possible fluid is moving around up there. My skull seems to get more sore over time, which might have to do with bone fusion and healing. She did some light massage work on my scar, some pressure and tension relief techniques, and then I did a boatload of balance work. I have to say, I always feel better right after therapy and I do look forward to it quite a bit. She says that next week we can return to the craniosacral therapy again.

Nothing more to add, really, other than I’m eager to keep finding ways to retrain my brain and get back to fully functional as quickly and smoothly as possible.

Finding Perspective in a Spinning Room

Far more trivial things have kept me from writing than trying to keep focused on a spinning computer screen. So, in that one small way this post is a victory.

I’m day five post-op, and after a brief fentanyl-induced hospital honeymoon, things have gotten a bit tougher, despite the fact that I’m thrilled to be home.

I play this game called “Broken Robot”with the kids. (It has nothing to do with JJ Abrams, who, as you know, has a robot who is bad.) As the name of the game suggests, I act like a robot in need of repair, and the kids set about trying to fix my ailments with their toy tools. In the game, I walk stiffly and mechanically when they eventually get me up and running, and that’s exactly what I look like now. Every step is slow, carefully considered, and without much of a stride. My head swivels slowly on badly rusted joints, and I can only hear out of one side of my head, so I take my time turning and try to position myself as best I can to hear. Evidently my ear canal is packed right now. I get that out Thursday and we’ll know a little more about my hearing then.

My brain senses movement that is not real because my inputs have changed, as Dr. Wiet told me, and it’s trying to decipher how to process this new information. I had powerful pulsating tinnitus that would make my field of vision bounce as well, but it seems the steroids have begun to tamp that down quite a bit in only one day. I also no longer feel the world tilt sideways when I burp or yawn, likely due to reduced swelling. Steroids rule! In its place, I hear chimes. Like someone has set a Casio keyboard to the organ setting, and is softly pressing one upper-register note after another. “Beeeeee.” Boooo.” Baaaaa.” It kind of sounds like the opening notes of the original STAR TREK show, but unfortunately, never in the right order.

[EDITOR’S NOTE: Day 6 Begins Here. Writing the above wiped me out. iPads and iPhones seem easier to my eyes than the laptop.]

I believe the unmasking of symptoms in my left ear has begun. My chewing is annoyingly loud, my voice sounds like it would playing out of a speaker, and I seem to be very sound sensitive. I had to go to bed and lay in the dark last night, because the noise and activity of a family dinner was bit too much to bear and made me nauseous. I already know I have a superior canal dehiscence on that side, and we hope that once my right side reaches its optimum level, it will be able to compensate for the left. But only time will tell if this whole process is a rinse and repeat.

I do better in the quiet, when I’m still, and generally later in the day. Last night I slept on my stitches without a problem and rested well. I had taken a valium as ordered by Dr. Wiet, but given the compromised state of my vestibular system, I think it left me too impaired, so I skipped it today and feel much better. Pain has never really been a problem. Actually, the worst pain came from the pin holes left across my skull from the device they use to hold the head in place in surgery. I get by on one or two regular tylenol a day at most.

I’m looking forward to beginning vestibular therapy again tomorrow with Jennifer. I’d say I’m significantly worse right now than I was at the onset of my symptoms in July, but it is of course only six days post-craniotomy! I’m not a patient patient, but I suppose a broken brain is a bit more complicated of a thing to heal than a broken bone, no?

Thank you all for for the follows and comments. I hope to respond to each of you when I am able.

Day Three Post-op

So it’s me again. This is Brad.

I think I’m improving at a pretty steady rate, though the tinnitus is constant, loud, and sometimes I get an oscillopsia effect with it where the walls seem to pulse. Also, there is is some spinning vertigo when I transition to fast. Things seem to be worse in the morning and improve as the day goes on.

Dr. Wiet is going to visit me tomorrow around 1, and hopefully I’ll be released. Dressing is supposed to come off today. He has such an incredible reputation here, and I can tell you, as a guy who has been some kind of sick most of his life, he is the kindest, most gentle and reassuring doctor I’ve ever encountered. I had a pre-craniotomy “moment” in pre-op, and he held his hand on my shoulder the entire time we spoke. If you are suffering from SCDS and can get to Chicago, he should be your man.

My wife, my mom, our friend Kevin — it’s been nonstop work for them keeping life working for the kids and me, and I’m so grateful.

I shaved my face today. I can walk easier. But my muscles are tight and my feet hurt from being in bed so much, which adds a bit to the instability.

I took two tylenol yesterday, but the pain is no real issue at all. Just dealing with finding equilibrium and the noise in my head have been the biggest challenge. Will post pictures later.

It’s all going as well as can be expected. The nurses and PT staff are working me as hard as they can.

False Flats, and SCD Surgery Recovery Time

I once was a biker: the kind who wears spandex and clip-clopping shoes. Not the kind with deafening exhaust pipes, Grim Reaper tats, and Kaiser helmets. Back when I was riding and racing, I hated the hills. And I lived in Kentucky!  I’m big for a cyclist at 6’4″, and I raced at 169 pounds. Since then, I’m no longer all thighs and calves. I carry a different kind of spare tire now and my handlebars are on my back.

Due to my size, and my low-strength-to-weight ration, I was not a good climber compared to the wafer-thin 5’5″ guys who could squat a Volvo. I would almost always lose contact with the pack on the steepest climb of the race, which forced me to take risks and catch up on the descent.

This one time, though, I was hanging in there. I was at the back of the pack, but still on a wheel, and I could see the top of the hill. I was certain I would make it, so I hit the thrusters and moved to the front in an effort to take advantage of my natural plummeting skills. I was great at going downhill really fast. (Except for the time I crashed at 55 MPH, but that’s another story.)

So, I got to what I thought was the top of the hill as I pulled to the front of the pack, but lo-and-behold, it was a false flat. There was at least half a mile of hill left and I’d burned up my boosters. The little guys saw me falter, put the hammer down, and left me for dead.

I hit a false flat with regard to my Superior Canal Dehiscence surgery a few posts ago when I wrote about feeling peace and calm descending. It was there for a brief second, then sped away faster than a pack of PED-enhanced cheetahs when came the news that I’m bilateral (I have dehiscences on both sides), and that Dr. Lee in Boston recommended endoscopy, which I wasn’t sure my surgeon here would or could do.

I emailed Dr. Lee and Dr. Wiet with more questions, and being the caring professionals they are, they got back to me with their thoughts. Dr. Wiet does use an endoscope and will have it at the ready if necessary, but doesn’t think he will need it. He and Dr. Lee differ on the approach, but in the end, knowing it’s there if he needs it, and that I’ll have world-class hands in my head only 20 miles from home, helped me to decide I should stay in Chicago. Dr. Lee speaks very highly of Dr. Wiet, as does his former patient Elizabeth Nielson whose testimonials are on my video page. So, I’m staying in Chicago and I’ve finally felt good about it for two days in a row.

Dr. Lee also answered questions about recovery. He said that in the 250 SCD patients they’ve treated, they have often seen untreated symptoms grow worse over time. He said that patients who face the toughest recoveries are generally 1) Women 2) bilateral people with large holes over both ears, and 3) people who suffer from migraines. While I am bilateral, my holes aren’t huge, I’m a dude, and I don’t have headaches. I suppose in this one situation, I lucked out. It stands to reason that if symptoms do generally get worse over time, which means my holes could possibly get bigger, why wait and force a further compromised lifestyle and more difficult recovery down the road? Right? (You all just said “right!” Right?)

So, now it would seem I’ve made it over the top of the false flat. It’s gonna be a fight to catch the pack, but I’m gonna tuck in as tight as I can, and hope to bomb down the mountainside of surgery and recovery as quickly and carefully as I can.

10 days to go.

“Look, we’re not doing this for the money……”

I met with Dr. Kazan today, the neurosurgeon who will accompany Dr. Wiet on my Superior Canal Dehiscence repair, and the title of this post is exactly what he said to me. He continued, “we’ve been doing this for a long time. We don’t need the money. We do this out of pride. Out of giving people a positive result and continuing to get better and better.”

I found that reassuring, which is what I’m sure he meant for me to feel. And I must say, these two surgeons have given me much more time and attention than I think I would have received at a University hospital, where it seems there are far more patients and a premium on seeing as many as they can each day. We visited a prominent university hospital (not Northwestern) in Chicago, and I felt like the doctor there could have spent a little more time with us.

Dr. Kazan mentioned today, in response to one of my concerns, that they monitor the facial nerve closely during surgery by inserting needles attached to equipment into my face. The primary facial nerve runs right through the area in which they will be working.  If facial nerves are triggered during the procedure, they will know immediately and adjust their approach. Facial nerve damage is a potential, albeit uncommon outcome for SCD repair. The other significant neurological risk is a cerebrospinal fluid leak, which is why there is always a neurosurgeon present for the procedure. I found it interesting to hear a neurosurgeon, in a specialty that most people default to as the top of the surgical pecking order, speak of taking a backseat in the OR. These two are old partners, veterans of thousands of surgeries together, and Dr. Kazan spoke very highly of Dr. Wiet, suggesting that in the OR “this will be his show.”

They’ll be using pieces of my own skull to help form the seal over the dehiscence and damaged tegmen. It will be taken from the underside of the bone flap removed during the craniotomy — as I understand it, anyway. Dr. Kazan said to expect two and half to three hours for the surgery,  depending on how much repair the tegmen requires.

The Hinsdale Hospital where I will be having my operation was outfitted for these types of surgeries at the suggestion of my two doctors, who, when the hospital was built, told them “we will lose patients to Mayo and Northwestern if you do not make this investment.” Evidently, they did, and both doctors have told me that there is not a better-suited OR in the country for my procedure.

So, I’m in good hands by all accounts, and I’m also receiving a second opinion (hopefully soon) from another one of the best SCD surgeons in the country. I’m fortunate to have these resources and opportunities, and I know that. And yet, my hang up is still with the unknown. The “what if?” My greatest fear is that I emerge worse than I am now. I fear loss of function as opposed to the restoration of it, and again, that comes from the fact that I really don’t feel all that bad right now; certainly not as bad as I once was.

Below are pre-op and post-op testimonials from a patient of Dr. Wiet’s. I watch these a lot:

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.

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.

Refusal of the Call

There comes a point in most movies, late in the first act, when protagonists are forced to consider a difficult course of action that has been presented to them. Blake Snyder, a deceased screenwriter and author, called this section of story “The Debate,” as the protagonist is literally debating what should be done about his/her problem. According to Joseph Campbell’s “The Hero’s Journey” paradigm, in this same section of story, a character often “refuses the call to action.” Most human beings (and good fictional characters who seem like real human beings) resist change at first, shy away from fearful things, and tend to do everything possible to avoid leaving their ordinary world. People do not typically fling themselves into the unknown until the stakes are significantly high at a moment of no return; a situation where there is no longer any choice as to what they must do. If my SCDS journey were a screenplay, I’d be right in the heart of “the debate” and “refusing the call.”

I just got off the phone with my surgeon, Dr. Wiet, and wanted to get the gist of our conversation down before it slips away and out of the hole in my head. He’s a very honest man, a straight-shooter, and I trust he has my best interest at heart.

I told him that with the aid of the valium, I’ve been able exercise, shovel snow, and write. I still hear my heartbeat in my ear and have brief swoons of slight dizziness (mostly at the computer — which is where I spend much of my working life), but there has been a tremendous improvement in my quality of life on this drug.  It’s a very small dose taken once a day before bed. So why have my head cracked open?

I know I’ve had bad, bad times with this syndrome, and I can remember some of them well, but the risks with surgery are total loss of hearing in the right ear, increased tinnitus, and the chance that nothing gets better and only gets worse. Doctor Wiet has told me in no uncertain terms that those are possible outcomes. Not to mention a long, painful recovery of up to six weeks or more.  And yet, there is a stronger chance, in his mind, for full, symptom-free recovery. His concern for me, and his reasoning that I should do the surgery now, stems from the fact that my right tegmen, the shelf that upholds the brain, looks like a sieve on film, when in fact it should it be solid bone.  He believes that eventually it will completely collapse and create a spinal fluid leak which will necessitate an emergency surgery with the potential for more complications. He also feels my 3mm superior canal dehiscence (which is a significant size in his opinion) will only grow with time, exacerbating my current symptoms.

The less invasive “transmastoid approach” is not an option for me given the degeneration of the tegmen.

From what I’ve been reading online, most people feel their lives improve after surgery, but many of them have suffered some complications from the process. In addition to hearing loss, increased tinnitus, and incomplete restoration of balance, some people have had nerve damage to their facial muscles, and some experience long-term pain at the surgery site, caused by the titanium plates used to fuse the skull back together.

So…I’ve actually gone off the valium in hopes of feeling bad to remind myself why this is necessary. The drug has 72 hour half-life. I’m half way there at this point and still feel relatively good. It’s stupid, isn’t it, to be trying to induce debilitating symptoms? I just feel that if I can have a bad episode and be reminded of how it feels, then I’ll feel better about the surgery. I’m trying to raise my own stakes in order to end the debate and accept my call to action!  If anyone who knows me well is reading this and remembers how bad I seemed to feel or look in any given moment , please tell me, from your point of view, what you saw or heard. It will help me to know how I seemed to others.

Oh, and if anybody has a time machine or crystal ball I can borrow, I’d be much obliged. I asked for a new head for Christmas, but I suppose Santa’s Elves haven’t perfected that technology yet.

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.