Tag Archives: Surgery

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.

Advertisements

The Other Side of Surgery

I met with Dr. Wiet today and signed the forms and asked my final questions. He believes I’ll come through it fine. New and improved. I’m feeling as confident as I think I’ve felt all along, and I’m just ready for this thing to happen. The past week has been like sitting in an airport waiting for a long-delayed, non-stop, twenty-hour flight to Siberia. It’s gonna suck, so can we just get on with it already?

A lot of people fear not waking up from a serious surgery like this. I don’t. I know I’ll wake up. The thing is, what will I wake up to? I’m not worried about pain. I just don’t want to be worse-off than I was before. I want to be better. But what can I do about that? Nothing.

I’m trusting my future to people who have spent long, successful, and highly-regarded careers working every day on problems like this. I’m trusting my fellow human beings who are elite, resourceful, well-equipped experts in a highly specialized field. I’m trusting two months of my own research and thought, and countless hours of soul-searching. I’m trusting my own will to fight, recover and reclaim my life and the way I want to live it. 

In 32.5 hours I will go black and wake up after what will seem to be just a few seconds —  and I will be facing a new reality. 

 

Pre-Op Buzz Cut

For a guy, I’m definitely a hair snob (This pre-cut photo does not indicate as much. I had just shoveled 92 feet of snow off my driveway. Leave me alone.). Clippers haven’t touched my tiny little head in 13 years, but I figured if some pre-op nurse is going to shave an ugly stripe in my skull, or even a whole side of hair off, I’d rather have the lovely Amanda, a true professional shorten the entire batch. No hair-washing for 10 days post-op? Yeah. Let’s whack it.

“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!

 

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?