Today is exactly three weeks after Todd had surgery to fix a rare condition of the inner ear, superior canal dehiscence syndrome (SCDS). Typical symptoms are autophony (hearing your own voice in your head when you speak), vertigo, and balance problems.

I wrote this series to help people out there suffering from this condition who keep getting misdiagnosed or have been told to just live with it. I wrote it for the doctors who have never heard of it (that would be the vast majority of doctors).

Will you please help me spread the news and post a link to this page or share it on social media?

ABC News posted a story about superior canal dehiscence that provides a great introduction to the condition. Wikipedia has a short article, but you may be able to find better information at this Johns Hopkins search page (sorry, I had to change the link; the article is “Clinical Manifestations of Superior Semicircular Canal Dehiscense,” in the Laryngoscope). My first post about my husband’s surgery is here, and Todd’s blog is here.

SCDS Support is an online forum for people who have this condition.

Types of Surgery to Correct SCDS

There are several doctors around the country who treat this condition, and they use two different surgical approaches. The more classic method is to plug the openings to the superior semicircular canal. The second method involves patching, or “resurfacing,” the temporal bone where it has thinned over the canal.

The first method (plugging) destroys the balance functions of the semicircular canal. Though a healthy balance system has built-in redundancy for one missing superior semicircular canal, losing one may cause balance symptoms in those who do not already have them. At the very least, it requires retraining the balance system to compensate for the lost canal.

Todd chose the second method (resurfacing) because it leaves the superior semicircular canal intact. This method is not as widespread, and hasn’t been studied as thoroughly. But its popularity is spreading because it is (at least theoretically) less invasive, with fewer side effects.

Dr. Lloyd Minor of Johns Hopkins University in Baltimore, Maryland, is the one who first described the condition, according to Wikipedia. He uses the plugging method and has performed that surgery more than anyone else in the world. However, Todd told me in January 2010 that Dr. Minor has been promoted to department head and no longer performs the surgery; his partner, Dr. Carey, has taken his place.

Dr. Gerard Gianoli of the Ear and Balance Institute in Baton Rouge, Louisiana, uses the resurfacing technique. He has done that surgery about fifty times.

Thanks and a big kiss to Todd for helping me write this post.

SCDS is superior canal dehiscence syndrome, a condition of the inner ear. Typical symptoms are autophony (hearing your own voice in your head), dizziness, and balance problems.

Todd keeps surprising me.

Sometimes I’m surprised by how well he’s doing, and I have to remind myself that he had surgery to patch a perilymphatic fistula only two weeks ago. Sometimes I’m surprised by how quickly his stamina disappears.

And sometimes I’m bemused at and a little proud of his stubborn determination to get back to normal as soon as possible.

Todd knew he would recover quickly because his symptoms were mild compared to those of many other people. Dr. Gianoli’s other patients that we met have marveled at how soon Todd mastered his dizziness; he was standing up and walking to the bathroom the first day, when some patients were in bed for days after the surgery. He’s now able to take a shower by himself, work at his computer, fix a simple dinner, be a passenger in a car for an hour, watch TV, and walk around the neighborhood.

What he is not allowed to do for four more weeks: drive, bend over at the waist, pick up anything heavier than 10 pounds, sleep flat on his back (he sleeps at a 45-degree angle), blow his nose, sneeze through his nose, cough, strain (as in going to the bathroom), use earplugs, or do anything else that might caused the newly installed bone in his inner ear to separate from the old bone. He’s also not allowed to “partake in any activity where poor balance may place you or others at risk for injury.”

He had to stop watching Saturday Night Live because the show made him laugh so hard that his head felt full of pressure.

Weird little things cause problems: we did a few seconds of slow dancing to some bluegrass on Saturday, and that made him dizzy, probably because I was twirling in front of him. My moving in circles, even slowly, was too much for his eyes and brain to process.

But he was in tune enough with the bluegrass to be able to pick out mandolin, fiddle, banjo, guitar, and bass (I could hear only the bass and the mandolin, and occasionally a guitar note). When we were last in Hammond, Louisiana, eating lunch at Tommy’s on Thomas, he could determine which song was playing on the speakers, but he heard it twice, once in his left ear and once, like an echo, in his right.

I can see why Dr. Gianoli specializes in conditions of the inner ear. Those who are medically inclined would find it a fascinating field of study.

Here’s the turban they put on Todd’s wound after surgery. It was nothing but a bunch of gauze wadded up to protect the wound.

Todd had surgery for superior canal dehiscence syndrome on Thursday, January 8, 2009, and I cut off the turban on Sunday, January 11. The staples will remain in until Thursday.

This photograph was taken on Sunday, January 18, 2009, several days after Todd had his staples and stitches taken out. Pretty nice wound closure by Dr. Gerard Gianoli, eh?

This is what Todd’s head looks like after too much Percocet.

SCDS is superior canal dehiscence syndrome, a condition of the inner ear. Typical symptoms are autophony (hearing your own voice in your head), dizziness, and balance problems.

Todd had his one-week checkup today, and Dr. Gianoli said everything was fine. He recommended that Todd walk a lot to improve his balance, and he said it was a very good sign that Todd’s pulsatile tinnitus was pretty much gone.

When we asked him about flying home, he said what worried him about flying was the possibility of damage to the middle and inner ears. During the surgery, blood drained into the middle ear, and although it will eventually go away, that won’t happen for several weeks. During flight, unequal pressure in Todd’s ear plus the blockage caused by congealed blood could cause the eardrum to rupture, but Dr. G said that was the least of his worries; he was more concerned about potential damage to the inner ear. So he performed a myringotomy on Todd’s right ear (put a hole in his eardrum, in other words) so that his right ear can equalize when we’re on a plane.

It took about 5 minutes. I wonder what kind of procedure a doctor like Gianoli considers a challenge?

For more on the appointment and the drugs Todd has been taking, check out his blog. Since he’s up and about now, I’ll be posting less on the surgery.

He still has one more procedure in Louisiana, a spinal tap to check his intracranial pressure. That’s scheduled for tomorrow in Covington at the Pontchartrain Surgery Center.

SCDS is superior canal dehiscence syndrome, a condition of the inner ear. Typical symptoms are autophony (hearing your own voice in your head), dizziness, and balance problems.

After a restless night, I got up this morning, cleaned up, and fetched Todd some breakfast from the hotel lobby. After all that exertion, we both took a nap. And then, despite all my lectures yesterday, I drove Todd in the direction of Fontainebleau State Park, which fronts on Lake Pontchartrain. After some to-ing and fro-ing, we had lunch at Sake Garden because we thought it would be a quiet restaurant. It was a small, lovely restaurant, in fact, but not particularly quiet. I would have taken a picture of the light blue walls and the sushi clock (like a bird clock, but with pieces of sushi marking the hours), but I swear one of women in the wall-hangings frowned at me when I thought of it. Todd managed to eat most of a bento box, including fish katsu, sushi, gyoza, and rice, and I had gyoza and a Crunchy Roll (I just adore those crispy bits in crunchy sushi rolls). Certainly the flavor-changing medication has not stifled his appetite.

For some reason, my gyoza wasn’t crispy at all, and his was extra-crispy. And mine tasted like shumai rather than gyoza (but don’t ask me to explain the difference in flavor, because I can’t).

After all that time in the car, including a U-turn (not at high speed), he had trouble with dizziness when he got out of the car. When we arrived at the state park, the same thing happened. I likened it to him getting his sea legs. He proceeded down the pier at a slow walk. When I pointed out the sailboat on the horizon, he had to stop and turn his head to see it. He explained that “forward march” was no problem, but anything that required him to change direction or move his head challenged him.

He also noted that walking this way, on somewhat uneven terrain (not rough, just not level or smoothly sloped), was better balance practice than the exercises he had been given at the hospital. Not only was he standing, as in the most demanding of the exercises, but he was walking and turning his head at the same time.

He sat down on a bench near the shore and waited for me to do a little birding. Then we drove back to the hotel. Without all the detours of the trip out, it took about 20 minutes. I sat down in the “living area” and read my novel for a while, and he took a short nap. I expected him to be more tired after the trip, but I think he just seemed tired because my driving was affecting his inner ear, especially when I had to stop quickly.

SCDS is superior canal dehiscence syndrome, a condition of the inner ear. Typical symptoms are autophony (hearing your own voice in your head) , dizziness, and balance problems.

What is the connection between drive-through daiquiri shops and The Princess Bride?

Funny you should ask. Tuesday night, after Todd and I had driven through all the back alleys of the highway strip trying to reach Burger King and were returning to Homewood Suites, he suggested we stop to investigate the Daiquiris and Creams place (picture to come). I ordered an Alligator Daiquiri (flavored with melon? something blue-flavored? hard to tell…except for the rum), which came in a lovely Styrofoam cup with a plastic lid. (Everywhere I go around here, something is being handed to me in Styrofoam. Ever heard of compostables, people?) Straw handed out to the car first.

See, in Louisiana, you can buy a daiquiri at one of these drive-throughs, and as long as the straw isn’t in the drink when the cop stops you (and the drink is full, if she gets to investigating), you are not driving with an open container.

And what does this have to do with TPB? Well, I see a certain parallel between Inigo’s drunkenness (cured by Fezzik) and my current tipsiness after a small but very strong daiquiri, and between Westley’s lack of strength and Todd’s lack of balance.

By the way, I did NOT start sipping until I was in the hotel room. And Todd said his Burger King Junior Whopper was tastier than the hotel chicken in some kind of indeterminate sweet sauce. So there.

***
But that wasn’t our only outing on Tuesday. Around lunchtime, we drove to Covington, LA, to see what we could see. It was definitely busier than Hammond’s downtown, though I can’t tell on one viewing if it was actually any bigger.

We ate lunch at Buster’s Place Restaurant and Oyster Bar (one of many oyster bars in this area), which was a fairly casual bar-type restaurant with cement floors that nearly managed to bring me to my knees, right in front of the lunch crowd. Todd had no problem staying on his feet, but then, he wasn’t wearing pumps with slick soles. He ordered the gumbo, which was the best gumbo I’ve ever had (he thought it comparable to Brunet’s). It was thick and had sausage but no okra (at least, no discernible pieces of okra), and helped me to understand the devotion to gumbo some people express. Before, I thought it was just a kind of soup. Or stew. Now I think I get it.

After we left, I insisted on taking a picture of Todd under the “balance” sign. Then I led him to St. John’s Coffeehouse on the corner, placed our order, went back to the restaurant and retrieved his iPhone from where it had fallen under the table, and returned to St. John’s Coffeehouse. The baristas were probably wondering why I kept disappearing and reappearing.

Somewhere between Buster’s and the coffeehouse, I began to worry. Maybe it was our table in the restaurant, located next to the drink dispenser. Was the noise of ice hitting the inside of a glass hurting Todd’s ears? (He said, later, that the music there sounded so muted he couldn’t tell which song was playing, but he could hear the ice and drink dispenser.) And right before we left the coffeehouse, he went to the bathroom, and I tried to push away my fears about him losing his balance and falling and busting out his brains. What would Dr. Gianoli say? Not to mention his parents.

I consulted the time on my cell phone. Was it reasonable to rush into the bathroom after 2 minutes? 3 minutes? 5 minutes? Finally he returned, looking pretty steady on his feet.

It was a relief to me to get back in the car and return to the hotel. I decided that I shouldn’t be counting on Todd to help me navigate (I got on the wrong road at one point and had to backtrack—hence the importance of not losing the iPhone). I should be figuring out the route in advance, not just getting in the car and driving until we get somewhere. I should research restaurants and places to stop in advance, not just find them along the way. This is not like my jaunts around Denver.

And I shouldn’t feel obligated to take him out just because he’s bored and tired of squishy food. He’s on pain meds, after all, and just 5 days out from surgery—boredom is better for him than some alternatives. Plus, he’s uncomfortable with the way people stare at the staples in his head.

In this way I lectured myself all the way home.

***
At 4 pm that afternoon, we were trading bites of a lemon bar from the coffeehouse and I handed Todd his latest passel of pills. One gives him a bad taste in his mouth after he swallows it.

He looked at the pills and asked, “Won’t one of these change my flavor?”

I thought that was cute.

***
It’s difficult, some days, to share a room with Todd and not be able to cuddle up to him in bed. The postoperative instructions about fistula suggest that Todd sleep in an elevated position for 6 weeks. I wonder how that will work when we get home. Will a couple of extra pillows on his side of the bed do the trick?

SCDS is superior canal dehiscence syndrome, a condition of the inner ear. Typical symptoms are autophony (hearing your own voice in your head) , dizziness, and balance problems.

After Todd spent Saturday afternoon and night catching up on the sleep he didn’t get in the hospital, he began feeling much better. He was able to sit in the living room for a little while on Sunday, and he’s been eating more.

The big event Sunday was cutting off the turban and letting his incision get a little air. Was I prepared? Of course not. I don’t mean prepared for the sight of the wound; I mean I didn’t have a pair of scissors handy. I considered my options: the kind of pointed nail snippers that manicurists use on your cuticles (too slow) or a paring knife (too dangerous) or scissors from the front desk. I ended up snipping the threads of the turban a few at a time with the scissors from Todd’s sewing kit, which are shorter than my thumb and not very sharp. I was terribly afraid I would hurt him, but I didn’t.

The entire turban was made of gauze, all padded together to ensure that any impact on the ear would be cushioned. I thought there might be some kind of cup in there to keep pressure on the wound site, but no. I’ve never seen anything quite like the incision, with all its staples, but it looks very carefully done and seems to be healing nicely.

Next I helped him shower in the handicapped tub. Even though he’d had a couple of sponge baths, he hadn’t been able to scrub off all the sweat caused by his reaction to the steroids. He felt a lot better once he was cleaned up and dressed in a fresh set of clothes. He was able to put on his own socks, but I have to put on his shoes and tie them for him, because he can’t bend over for a few weeks.

The worst part, for me, was trying to get a T-shirt over that incision. I was so tempted to cut the neckline of the shirt to make it easier, but then I remembered (1) I had no scissors and (2) Todd doesn’t really like V-necks.

My reward for all this was going to the grocery store. That may not sound exciting to most of you, but keep in mind I’ve spent most of the past week in a doctor’s office or a hospital. Plus, the store I discovered was really cool: Rouse’s, a Louisiana-owned grocery store. Not only did it have an extensive selection of wine (and beer and liquor, though I didn’t pay any attention to that), but cases of cheeses, locally made butter, Boulder ice cream, and some organic and natural products.

The King Soopers where I shop probably stocks more natural and organic products, but this store had a much nicer layout, especially of its specialty items like cheeses. The wine aisles blew me away, though. I spent far too long at the store, and when I got to the checkout, I said to the clerk, “This is the first time I’ve ever bought wine at a grocery store in my life.”

When I got back, Todd told me he thought I’d been gone too long. He was fine, though, so I didn’t bother feeling guilty. And once I fed him some of the Mexican chocolate ice cream, he was completely reconciled to the entire affair.

***
On Monday Todd and I ventured into the lobby for breakfast and for dinner. He didn’t have much trouble with the elevator, but every so often he has to stop and lean against the wall because he gets dizzy.

We spent some time talking about how his right ear feels: he can’t hear out of it properly. When a noise does get through, it doesn’t sound right. I asked him if that scared him, and he said it didn’t really. I think he’s glad that he doesn’t hear his pulse in his head so much anymore. I assume Dr. Gianoli will give us more information about his prognosis on Thursday, when Todd has his one-week checkup.

I took a little walk around the hotel and found a flock of 30 chipping sparrows, a couple of killdeer, and a black vulture in the distance. A dirt road off behind the hotel tempted me, but it looked pretty muddy. And I kept wondering: Where exactly do alligators live? Could there be one hiding back in there somewhere? Probably not, but still I’m chicken.

Now that Todd’s waking up and beginning to enjoy life after surgery, he’s also starting to think of all the things he wants to eat, like a huge burger from Applebee’s. He tried to convince me to get him one for lunch. What was he going to do when he had a bite of that burger in his mouth (bread and meat and onions and tomato…), I wanted him to tell me, since he’s not supposed to eat chewy food.

He had to settle for Chef Boyardee. At one point in my life, I really liked that stuff; I think it must have been about 40 years ago.

But he ate it all and thanked me for “making” it. He is a sweet person.

SCDS is superior canal dehiscence syndrome, a condition of the inner ear. Typical symptoms are autophony (hearing your own voice in your head) , dizziness, and balance problems.

I showed up at the hospital at 8 am this morning, just in time to drink the coffee Todd didn’t want from his breakfast, and Dr. Gianoli showed up about 10. I could tell he was coming by the quick footsteps approaching the door. He talked to Todd a while, made him do a few eye tests, and then decided he could be discharged from the hospital.

There were all sorts of instructions and medications to be sorted out. Until Tuesday at noon, he’s supposed to stay in bed unless he has to go to the bathroom. He did prevail on me to sit at the table and eat “dinner” (3 spoonfuls of soup and half a piece of toast), but he didn’t last long there. I could see his eyes twitching back and forth as he ate (nystagmus).

For six weeks he cannot blow his nose or sneeze through it (he can sneeze through his mouth). He can’t bend over at the waist to pick something up or strain himself in any way. I was wondering, when I picked up his Macbook this morning, if it weighs 10 pounds (the upper limit he can lift). I don’t think so, but it felt heavy.

The following sentence in the “Fistula Precautions” document caught my eye: “Sexual activity is also restricted since this will place significant pressure on the inner ears as well.” Who knew?

Besides, I love celibacy. I was raised Catholic, after all. (But am I more Frank Zappa or Billy Joel?)

Todd told me a story about some other SCDS patient who got frisky a couple of days after the surgery and ended up at the doctor’s office with a bloody head. The doctor sent him back to his girlfriend with a stern note about sex.

I’m feeling a little grumpy tonight. I was fishing around in the Hilton Homewood Suites kitchen and discovered a grocery list. Staff will actually shop for you! I was so excited I had to leave Todd all alone, prance down to the front desk, and hand it to the manager on duty. He said, “Why are you bringing this to me?”

“Who else would I bring it to?”

At that point he saw the Homewood Suites logo and confessed he had never seen one of these forms before. “We’re all bachelors here,” he added. I assume he was referring to the guests and not the staff; I’ll bet most of the latter are women.

I could have forgiven his remarks if he had not spoken to me as if I were a five-year-old.

Maybe it’s my manner. I tend to charge up to people and say, “Hello, this is what I want!” It’s not subtle, but it doesn’t usually get me patronized. Maybe it’s too Denver and not Southern enough? Should I chat for 5 minutes first? Call him sir? People around here like to use “ma’am” and “sir.”

If he uses that tone with me again, I’m going to treat him like the Humpty-Dumpty he looks like and kick him off his wall.

P.S. I emailed someone in Baton Rouge about recycling in Covington. There’s got to be somewhere I can drop off my bottles!

SCDS is superior canal dehiscence syndrome, a condition of the inner ear. Typical symptoms are autophony (hearing your own voice in your head) , dizziness, and balance problems.

I spent an hour with Todd in ICU, from 10 to 11, and he ate some grits and toast and eggs. I ate his graham crackers (too crunchy, he said, though they seemed soft to me) and jello and drank the coffee, which he doesn’t ever drink (wouldn’t want that hospital food to go to waste). I even allowed him some iPhone time, but I took it away with me because it’s an expensive thing to leave sitting around a hospital. More important, I don’t want him to spend much time looking at email. I want him to rest.

I think he’s awake enough that he’s starting to get bored.

He said his pulsatile tinnitus is almost gone, but he still feels dizzy when he moves his head. He’s happy that he can’t hear his heartbeat any more. I think it’s making him feel more positive about the surgery.

Dr. Gianoli came in about 9 am (before I arrived) and told him things were going fine. The nurse said he would be moved into the surgery unit across the hall when a bed became available.

I wanted to leave the hospital and find a restaurant and a grocery store, but my phone needed to be charged. Since that’s their only way of reaching me, I am now sitting in the lobby, waiting for two bars to go to three. I guess it ran down last night while I talked to Dor.

***

Todd’s in the surgery unit now, all cleaned up and smelling pretty (one of the few sponge baths I’ve given in my life). A physical therapist came by to give him some eye exercises to help him get rid of the dizziness, which happens mainly when he moves his head. They took away his catheter, but he’s still getting some medicine through an IV.

He told his mother the pain in his head (from the craniotomy) is less than from knee surgery, which he’s had twice.

Just as soon as he was nodding off, the family liaison for surgery came in and wanted to know if we needed anything. A volunteer in a blue vest showed up too. This hospital really does seem to be on top of things—except, perhaps, allowing patients to nap.

***

I had pizza from Rotolo’s for lunch and dinner, and Todd and I shared dessert from the cafeteria. (Their cakes are really good. The frosting tastes real, for one—not like the stuff from King Sooper’s.) He’s been getting up to go to the bathroom all day, and as long as he rests at each change of position, he’s fine. He makes me shut the door to the bathroom, which is nerve-wracking, but he hasn’t come close to falling yet.

I left at 7, desperately in need of sleep after sitting around for 5 days. I left the iPhone with him so he can have something to do in the middle of the night. The two songs he played while I was there were “Alice’s Restaurant” and “Back in Black.”

Keeps the nurses on their toes, I guess.

SCDS is superior canal dehiscence syndrome, a condition of the inner ear. Typical symptoms are autophony (hearing your own voice in your head), dizziness, and balance problems.

I’m sitting in the Same-Day Surgery waiting room, writing this.

We got up at 4 am and got to the hospital right after 5:30 am. They sent us upstairs, to the Same-Day Surgery area, and took us both back. Todd was impressed that he was taken to a real room with a door that closes to get into his gown. When he had knee surgery, all he got was a bed behind a curtain. The volunteer put on his stockings, marked the right side of his head so Dr. Gianoli would know which side to cut, and asked him if he had brought a vein, which, apparently, he hadn’t.

Then a man took us to the surgical prep area. At least six people talked to Todd (two anesthesiologists, a couple of nurses, Dr. Gianoli, and the man who wheeled Todd), and all of them asked him his name and birth date. Several of them asked what he was having done and on which side—I guess that’s standard procedure since that man in Florida got the wrong leg cut off.

Eventually the anesthesiologist got into a vein in his right arm, and the female nurse wearing a coat (because it’s so cold in this hospital—I was warned about it) gave him some happy drugs. About that time Todd remarked that maybe I should leave because I didn’t look like I was enjoying myself. I figured I would stay until someone told me to leave, and I was standing against the wall with my arms crossed to keep out of the way. There wasn’t a lot of room in this cordoned-off area. Also, I didn’t know you were supposed to enjoy yourself in the surgical prep area. Maybe I should dance a jig?

Most of the staff in this hospital are white. There are some black people to greet you, and the man who took Todd from the dressing room to the surgical prep area was black. That was about it. I also noticed that since the 1960s, there has been one female chief of staff of this hospital.

A family across the waiting room stand holding hands, saying a prayer. I wonder if they’re the family of a little girl I saw when I was leaving the surgical prep area.

I left Todd right before 7 am, and he didn’t go into surgery until 8:15 am or so. The volunteer in the Same-Day Surgery waiting room called surgery to check on why it was taking so long, but when surgery called back and I talked to them, they didn’t give any explanation, and I didn’t ask.

The waiting room is almost empty now. Only one family is left—the praying family disappeared.

***

Now I’m sitting in another, much smaller waiting room, and a man named Mr. J  is telling me all about his life. He said he was an airplane mechanic in World War II and traveled all over the Pacific repairing airplanes for 4 years. Then he came back and attended Southeastern Louisiana University and met his wife there. They’ve been married 61 years, he is 87 years old, and she is 82 years old. Oddly enough, she was having surgery on her ears to get tubes put in (the first procedure Todd ever had to correct his ear problems).

Mr. J’s age makes me feel better about my father being 82.

This man seemed more active and articulate than my father (who is no slouch as a talker), but it may have been his manner. He said he was a professor at SLU and also trained many of the techs in this hospital in the physics of x-rays. He likes to be busy.

Dr. Gianoli came in and told me about the surgery right there in the room, instead of taking me out in the hall. After asking me if I was bothered by blood, he showed me a picture of the surgical site. He said that when he got into Todd’s head, he discovered that he needed to resurface a larger area than he had thought. He said the brain was actually adhering to the malleus (hammer) and that he had to pull it away and cover that area with a piece of bone (taken from Todd’s skull? I forgot to ask). He then covered the superior canal (the thinning of bone there was the original reason for the surgery) with another piece of bone and sealed off that whole area.

Also, Todd’s intracranial pressure was at 28, when it should have been below 20. Dr. G. said they got it down and that that may prevent the left ear from going bad (Todd has mild symptoms in that ear, but they don’t show up on the tests he took Tuesday and Wednesday).

When I got done talking to Dr. G, Mr. J asked me about him. He said he was impressed by him. I gave him Dr. G’s name and location, but I forgot that I could have looked him up online and given this man his phone number.

***

It’s 7 pm, and I’m in the ICU waiting room now. Everyone else in here is with someone, and I feel lonely.

I’ve seen Todd three times today, and he’s getting more lucid as time goes on.

I didn’t see him the first time until about noon, and then I felt bad because the ICU nurse had called me, but I didn’t hear the phone, and so she had to call me again half an hour later.

When I saw him at 2, he had eaten some lunch. When I went in to see him around 5, he was sleepy and said the steroids had almost made him throw up. You don’t want patients to throw up after this surgery, because the force of vomiting could dislodge the newly implanted bone. Todd said the nurse said she would give him the steroids much more slowly the next time.

I hung around until 6 in the hopes that I could be there when she gave him the steroids, but she didn’t show up. I crept out and managed to leave without waking up Todd.

I saw Mr. J again. He said that during his wife’s surgery, the doctors had discovered that a benign tumor had recurred in her ear (“choleastoma” was the word he used, I think), and he said he knew that her ear problems were too painful to be caused by a fluid imbalance.

I had my laptop on my lap the whole time, and finally he asked me what people like me would do without our laptops. “Have a less stiff neck,” I replied.

SCDS is superior canal dehiscence syndrome, a condition of the inner ear. Typical symptoms are autophony (hearing your own voice in your head), dizziness, and balance problems.

I had Todd ask the technician about filming the tests for our documentary, and she asked the doctor. Dr. Gianoli wouldn’t let me film the test itself, just the setup of the tests, in case I might somehow affect the results. Then I was dispatched back to the waiting room. Damn!

But the technician does come and get me before each test and let me take pictures of Todd sitting there with electrodes on. The coolest thing is the picture of his eyes on the computer screen. It’s as if the screen is looking at you.

The tests themselves are pretty horrific, I think—they’re all balance tests, and the tech said they get progressively worse (more and more like the vomit comet). Todd has a strong stomach, so he’ll probably get through them without getting sick.

The technician just fetched me to photograph another test and described it to me: they were going to play sounds, and Todd was supposed to shake his electrode-studded head in time to the sounds, first side to side, and then up and down. I think that one was designed to measure nystagmus. I can’t keep them all straight.

I have a tickle in my throat. I hope I’m not getting sick. Who knew sitting and waiting could be so tiring? My body is bored out of my mind!

I just took a picture of what I think is Todd’s last test. His face looked very red—he’d just had the tests in which hot and then cold water are shot into his ear. He also had a test in which they vibrated his mastoid bone, which produces vertigo, but his reaction was nowhere near what one of Dr. G’s other patients described last night at dinner—I think she screamed and fell over.

It’s a lot of hurry up and wait—just like making a movie.

The waiting room is quiet now, and empty. I am so tired. I want to take a nap, but I’m getting hungry. Apparently sitting around makes me whine.

Todd just found out he needs to get an EKG and blood tests before surgery. So after he paid $15,000 for the tests and the surgery (the hospital, which is in network, will bill our insurance), I drove back to the hospital in Hammond.

We went out to dinner at Cate Street Seafood Station in downtown Hammond. I liked that area—maybe I’ll spend some time there while Todd’s in the hospital.

SCDS is superior canal dehiscence syndrome, a condition of the inner ear. Typical symptoms are autophony (hearing your own voice in your head), dizziness, and balance problems.

I did nothing today, it seems, and yet the day is gone.

The first thing Todd did after waking up was to call the admitting nurse at North Oaks Medical Center in Hammond and talk to her for a long time. She was able to guess his race from his Yankee accent but then felt embarrassed about stereotyping him that way.

Then it was off to Denham Springs, to the only Starbucks in the country that doesn’t have Wifi (but does have yummy cheese danishes) and after that to Hammond and Covington to find the hospital and hotel, respectively. The hospital was easy to find (as you would hope), but the hotel was hidden away behind a Honda dealership and various other businesses. We did discover Bogue Falaya (Choctaw for “long river” and a designated scenic river) and Mochacchino’s in our search, so now we know where the locally owned coffeehouse is. That’s cool.

I’m so looking forward to the Wifi at Homewood Suites in Covington! Then maybe I can post regularly and easily. It’s really a pain to try to get anything up at Comfort Suites because the connection keeps breaking, and the man at the front desk doesn’t have a clue. The staff at Starbucks were apologetic, but they wanted us to call AT&T and light a fire under their asses. We didn’t feel it was our problem.

Next we spent two to three hours driving back and forth north of Lake Pontchartrain, grabbed salads at Wendy’s, and then found Dr. Gerard Gianoli’s office (the Ear and Balance Institute), which is in the same complex as another hospital in east Baton Rouge. He has privileges at the hospital in Hammond, the next town east on I-12.

I wasn’t terribly impressed as I walked in. It’s at the end of a narrow hallway, and the carpet in the waiting room is old and dirty. Unlike most of the doctor’s offices I go to in Colorado, the staff area was completely walled off. They slide a piece of glass aside to talk to you, and then they slide it back.

But as you turn right, you see the waiting room is filled with bright abstract paintings by Dr. Soileau’s wife, and as you turn left, the walls are covered by plaques, some of which are degrees or board certifications. It’s quite the display.

I spent most of the afternoon in this office. Dr. Gianoli spent quite a long time with Todd, taking his history, and I filmed Todd answering his questions. I explained to Dr. G that we were planning on filming a documentary and that we would like to come back at a later time and interview him and the staff and other patients. For now, I would do my best just to film Todd, not the staff, since we were in the early stages of planning the documentary (and I had no model releases).

I noticed that when Dr. G. came in the examination room, he introduced himself and got right to the interview. I had to interrupt to make the request above. He took a very thorough history, and by the end he had concluded that Todd might need a different surgery than what had been originally proposed. I thought he said “light resurfacing,” but Todd heard something else entirely.

After that, Todd had some hearing tests, one of which was like a jackhammer next to his ear for about 45 minutes (electrocochleography). The technician said there was something wrong there, so she kept the test going for quite a while.

I sat in the waiting room during these latter tests, and then we left. But three of Dr. G’s patients met us at the hotel (two former patients and one current patient), so we sat and talked with them and then went to dinner at Lone Star Steakhouse.

We had a crowd for dinner: 8 adults and a set of triplets, two of which were identical and one of which was fraternal. I kept wanting to refer to the two identical girls as twins, but they weren’t, really—and yet they were. They spent most of the meal talking among themselves in Afrikaans. Their parents are South Africans who lived in Canada for more than a decade—the girls may have been born there—and moved to Houston six months ago. You know how some twins have a secret language? Around most people, these girls really do.

I was tremendously moved by the stories told by Dr. Gianoli’s patients. They were the stories of all those who are disbelieved or looked at askance because there is nothing wrong with them on the surface—but they have no quality of life any more because they’re always dizzy.

One said that while he was going to a local doctor (he lives south of New Orleans, in the bayou, in Cajun country), he would “make a meal of pills.” He said he loves to hunt birds and go boating and fishing, and he had to give all that up. He told us about having an attack of vertigo and, when he came to, realizing he was driving down the wrong side of the road. His doctor finally said he would sign disability papers for him, but the thought of living the rest of his life sitting in a chair, trying not to feel dizzy, was not attractive.

Eventually his pharmacist, who had been marveling at the variety of drugs prescribed to this man, referred him to Dr. Gianoli. And he gave this man his life back.

Dr. G’s other patient, who lives in plantation country, as she put it, had pretty much the same feeling about him. She was nauseated for 18 months before her first surgery (she had inner ear problems on both sides), and although her symptoms are not completely gone, she referred to herself as 99 percent cured.

I’m always a little skeptical when I hear about a person being venerated. But it makes sense when you think how long most of these people were searching for someone to help them. Their sorrow and frustration were palpable.