Tag Archives: middle fossa approach

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.

Track and Field

Hello all,

When I first joined support groups on Facebook, I’d panic at every side effect or bad outcome I read about, when it came to Superior Canal Dehiscence surgery. A wise woman in one of those groups told me to remember that all of the folks with good outcomes had moved on with their lives, and didn’t have time to be checking the boards all f the time. That made sense to me, but only about two weeks ago.

I’ve been back at work for three weeks and feel like I’m tuning in much better than before, and getting stronger. I’m not to where I was this time last year before my symptoms began, but I’m getting through my days fairly well now, and my work days on campus are quite active and stimulating — physically and mentally.  I must also say, that for reasons unrelated to SCDS, my last two weeks have been emotionally stressful, and my response to that stress is drastically improved from the worst days of my symptoms.

The best news is this. I had to teach my daughter to ride her bike, which necessitated running along side her as she rode for brief stretches. Then, trying to keep up with her as she went around the block. If you read My SCDS story, you’ll note that I was a runner before this all went down. In fact, a month before I became severely knocked out, I finished a 5K in about 27 minutes — my best time ever. Well, that jogging with my daughter, led me to think I could run again, and I’ve started back without too many problems. I run one minute and walk three, and can cover two miles that way in under thirty minutes. My fastest mile is 13:48. I have five minutes to shave off, but I’m thrilled to be running again.

I mostly stare at the ground, but try to challenge myself and raise my head to hold the horizon every several seconds, and the bounce seems to be improving. My legs are sore, naturally, but not just from the exercise. My lower back, neck, and outside leg muscles continue to be severely stressed by my new balance situation, so I’m at the Chiropractor and message therapist at least once a week.

The dizziness still comes, but only slightly, and it’s very manageable. I’m starting to believe it’s from my unrepaired side. Two milligrams of Valium each night before bed help with that. My balance is good. I’m no late-life gymnast, but I can walk a balance beam front to back, then do it backwards, then turn and repeat without touching the floor (most of the time).

Noisy, stimulating environments still wear me out, though. And my hearing has not improved in my repaired ear. I may never know why this happened, when so many people report better hearing post-op. Right now, I’m trying to get the most out of every day and enjoy this good period. Because with the other side unrepaired, and potentially unable to be repaired due to the possibility of complete deafness,  I can’t be sure how long it will last.

Here’s a picture of me attempting a (very short) long jump for my two kids:

 

“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:

Waffling on SCDS Surgery (Again)

superior canal dehiscence surgeryThey say you are what you eat, right? Today, this is what I had for breakfast, and it is also what I’m doing (again). As a writer, I know it makes for a much more compelling dramatic story when a character is conflicted, but in real life it can get tiring and silly for your audience of friends an family, and exhausting for yourself as the protagonist. Sorry, y’all!

What I really need is a Magic 8 Ball to decide superior canal dehiscencethis whole mess for me once and for all. Anyone still have one of those laying around that I can borrow?  I used one to choose which film school to enter, and that seemed to work out okay.  My friend has a talking Yoda, maybe that’s who I should really be consulting instead of an endless slew of doctors!

 

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?

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.

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….”

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.