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.

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  1. […] more detail about conditions of the inner ear. My first post about my husband’s surgery is here, and Todd’s blog is […]

  2. […] I was in Louisiana for Todd’s surgery to correct superior canal dehiscence syndrome, I bought wine at Rouse’s grocery store. I don’t recall seeing a lot of liquor stores […]

  3. Christa Wilborn November 11, 2013 at 10:36 pm - Reply

    Thank you for sharing your story. My daughter Mary will have surgery for SCD in 4 days (11/15/13). She is 23 and has a mild learning disability. She has had nausea/imbalance/pain for 2 1/2 yrs. In the last 5 months it became much worse. She is unable to go anywhere there is noise (that means no store, no restaurant, no church….). It is also difficult to ride in the car. She is fine until a sound or motion causes the symptoms – then she has a spell: loses her balance, has severe pain and nausea. We are very hopeful that this surgery will help her. Your story helped us understand what to expect and gives us hope. Thank you!

  4. Kim Brennise December 26, 2013 at 12:52 pm - Reply

    I was just diagnosed with this last week. I see another ENT specialist on 01/07/2013. Countless Dr visits, for infections that were not infections most of my life. Serious inner and outer ear infections. Working in a call center for 19 years I have always thought my peers are rude, loud, and nobody can hear me speak. Certain noises make me cringe. My body quivers in my spine makes me dizzy, sick, and loud makes me what to drop to my knees. Traveling and recovery by myself is scary, since I am single and all my family is out of state. They would be unable to stay with me. Hoping not to be a canidate for surgery that is not commom. CT scan confirmed findings. “Merry Christmas you are not crazy!” Was relieved to see this approach and posts of a less invasive approach. Prayers and hope, we shall see….I am sick of living my life with industrial ear plugs and ear buds. Thank you for posting and sharing your experience.

  5. […] and surgeon Gerard Gianoli, the reason Todd and I are in Louisiana again, almost five years after his first surgery to correct superior canal dehiscence syndrome, or SCDS (an area of missing bone above one of the […]