5 Years in the Gray Area

Brandt's annual appointment with Dr. Awesome has always been in May, but this year it wasn't until September, I think because Dr. Awesome took a summer vacation. It turns out this might have been beneficial for us, because just in the last MONTH Brandt's right ear has seriously declined. Along with decreased hearing and comprehension in that ear, the tinnitus has significantly increased—which potentially indicates more hearing loss. The right ear was always his better ear, the ear he relied on. So this sharp decline has pretty much guaranteed that I have to repeat everything I say at least once, if he even realizes that I am talking. It's beyond frustrating for both of us.

At the appointment, his left ear hadn't really gotten worse. He only lost an average of 2 decibels, going from a 70 dB loss to 72. Speech comprehension was the same at 20% (which you would expect from someone with much less hearing, but he's been scoring about 20% every year.) But the right ear—WOW. He lost at least 10 to 15 decibels at every level except 500 Hz, where he lost 25 decibels. His average loss went from 63 dB to 78.  Seventy-eight. His entire average loss dropped 15 decibels in a YEAR. I still can't fully grasp it. His speech comprehension in the ear dropped from 36% to 28%, and I'm very surprised that it wasn't lower.

Right ear loss—2012: 63 dB; 2013: 78 dB

Left ear loss—2012: 70 dB; 2013: 72 dB

First we met with Dr. Windsor, who is Dr. Awesome's new Fellow. His tie was in a Double-Windsor knot, which really impressed Brandt—he can't stand the asymmetrical Single-Windsor. They became instant Tie Buddies. After reviewing Brandt’s information, and trying to determine if an injury or change in medication could explain the sudden decline in one ear (nope, nothing) he asked, "What are your feelings on cochlear implants?" I laughed and groaned simultaneously. We gave him a brief rundown of the past few years, of the failed evaluations despite Dr. Awesome's opinion that he should qualify and would benefit greatly from CI. Dr. Windsor said, "Well I agree with Dr. Awesome, we're sending you back for another CI evaluation."  

Dr. Windsor left the room for a minute and returned with Dr. Awesome and a resident who stood silently in the corner. They discussed amongst themselves about Brandt needing either an MRI or a CT scan, whether he could possibly have Auditory Neuropathy, and the need to rule out EVA. (I was pretty lost and had to resort to google when I got home—EVA is Enlarged Vestibular Aqueduct, which can cause hearing loss.)  

Dr. Awesome explained that Brandt is "not like the usual person" and could possibly belong to a "certain subset of patients" that actually has nerve degeneration (Auditory Neuropathy/Dyssynchrony) rather than the typical inner ear hair cell degeneration. It is usually diagnosed in children who have severe hearing loss but functioning hair cells. I thought this was bad news, but Dr. Awesome said that he has implanted patients with this condition and they were successful with CI. I am still confused, because a CI candidate has to have a functioning VIIIth auditory nerve, but there is research showing that AN/AD patients typically do well with CI. Hmmm.

Some possibly good news, or at least NEW news, is that the Cochlear Implant Team now has monthly meetings to discuss controversial patients/candidates. Dr. Awesome, Dr. Windsor, and the resident (he finally got to talk!) agreed that Brandt should be a candidate and that they would argue his case at the next panel meeting after he gets re-evaluated. So…if this were several years ago, I would probably get a little excited. But after two rounds of failed evaluations—and I am still devastated from that awful first evaluation—I just can't get my hopes up even the slightest bit. At least now we know that Dr. Awesome and Dr. Windsor will be taking the extra step to fight for our very unusual case.

Car Shopping for the Hearing Impaired

A new town and new job deserves a new Brandtmobile!

Ok, we weren't actually planning on getting a new car for at least a year, but we didn't really have a choice. Last summer I managed to find Brandt a new job, closer to our family and closer to Dr. Awesome. He was on the cusp of finishing his doctorate and the opportunity was too good to pass up!

Fast-forward to a month ago, when both of our (older model) cars suddenly had warning lights go off. Mine turned out to be a bad tank of gas that angered my recently-replaced catalytic converter, but Brandt's was the airbag. In a car with manual locks, no cruise control, and an increasingly-loud chronic shake, it was time for an upgrade.

I hadn't been car shopping in a decade, and it was not a pleasant experience. I don't think it ever is, is it?  Being hearing impaired adds some complexity to the experience, though. I had no interest in dealing with car salesman, but talking with people on a noisy car lot was going to prove difficult.

Thankfully the experience was not as painful as I feared, but it was still tricky.  I let Brandt do the talking, but I had to jump in to 'translate' fairly often.  Standing outside next to the freeway, with the sun glaring in your face, wind whistling your hearing aids, trying to lip-read a salesman with a big bushy mustache...not the ideal situation.

The two main salesmen we dealt with were professional and understanding, and didn't pull that "my manager will kill me and my kids won't get dinner tonight, but I like ya so I'm gonna make you this special deal" crap.  They repeated things and didn't get frustrated.  But they didn't believe Brandt when he said, "Don't call me, I can't understand you on the phone and won't answer." No one ever thinks he's serious.

We quickly narrowed our choice down to a Toyota Camry (which I grew up driving) and a Honda Accord (the previous Brandtmobile). The Accord had two standard features that were awfully tempting for someone with hearing loss: a Rearview Camera, and Active Noise Cancellation.  

Our new neighborhood has a LOT of  kids who play and ride bikes in the street and in driveways, and I've been fairly concerned about either of us accidentally backing over an unsuspecting child.  Brandt probably would not be able to hear someone scream behind the car, so I was very excited about this feature. And I think it's a great safety feature for anyone, not just people with hearing loss! The Active Noise Cancellation works like noise-cancelling headphones, and the Accord was definitely the quietest car we test-drove.  Road noise, especially on the freeway, makes it much more difficult for Brandt to understand me, so any reduction in that noise is incredibly helpful to our communication.

Ultimately we had to go with the Accord.  The Camry had an optional rearview camera, and their base model was cheaper, but getting these two features standard in the base model just could not be passed up.  Hurray for a new earless-friendly Brandtmobile, with six airbags and awesome gas mileage to boot!