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.

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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.