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!

Still in the Gray Area

I know, I know, it’s been...er...awhile since I’ve posted.  I got a job last fall that completely took over my life, and then our beloved Hearing Cat had a long illness and eventual passing this summer that zapped me of any desire to write about still being stuck in the Gray Area.

But, I’m back now!  You’ve already been warned that I don’t have any great news to report; however, Brandt is somewhat closer to candidacy than last year.  I think.  Maybe.  Actually, we’re not really sure.  It’s pretty darn confusing, but I’ll try to explain it as best I can.

In May, Brandt had his annual appointment with his audiologist, Dr. Awesome.  His hearing and comprehension hadn’t changed, but Dr. Awesome told him, “I think it’s time to send you for a Cochlear Implant evaluation.”  We both said simultaneously, “He got one!  Last summer!  Like you said!  And it was a DISASTER!!”  He looked confused, flipped through Brandt’s chart, and said, “No you didn’t.  If you’d had the evaluation, I would have known about it.  There is no record that you had one done.”

I was so upset, I was shaking.  I screamed at that poor brilliant doctor, fighting back tears, telling the story of how we had been treated last summer.  He was shocked, and recommended that we go back for another evaluation (I grumbled loudly) but this time with his “Original CI Team” (I got a little hopeful at this).

It turned out that half of the “Original Team” no longer does CI evaluations, so instead we were assigned Aunt Louise’s audiologist, Courtney, and a speech-pathologist we’d heard rave reviews about, Anne. 

With the new appointment set for the last Friday in July (just like last year), I refused to get my hopes up.  I didn’t even want to go.  I told Brandt it was a waste of time and gasoline.  I e-mailed my concerns to Courtney, and she told me that they had recently started doing more tests in the evaluation.  I decided to go after all, but still wasn’t expecting anything.

Courtney and Anne began by warning us that they would be doing “a lot of tests today!” (and never tried to push us out the door!).  Brandt’s hearing loss had gone down a little, surprisingly—from a 60 decibel loss in the right ear and 63 decibel loss in the left, to 68 dB in the right and 70 dB in the left.  He misheard some of the words he knew well, like “Fabio” for hot dog, “fine line” for sidewalk, and, my personal favorite, “road kill” for rain coat.

They ran the same Hearing In Noise In Quiet sentences that Brandt did so amazingly well on last year.  He still did much better than he does in the ‘real world,’ but I knew he was doing worse than last year.  Then they did a new type of sentence test, called AZ Bios.  Instead of them all being well-annunciated and read by the same man, these sentences are done by different people, both male and female, with different levels of annunciation.  There were a few that I couldn’t understand at all.  Brandt performed much more like he does in the real world:  sometimes he got every word, sometimes he didn’t get any of them, and most of the time, he got about half.  For luxury, he heard “lecture in Asia.”  You smell like fresh lemons was “Do you smell that first letter?”  When a husband got some fresh flowers, he heard “safari.”  A dog growling at the neighbors was “growling at bananas??” And when the children cleaned their plates, Brandt asked in shock, “They torched the place?!”

Next, they gave Brandt a long list of single words, a test called CNC.  In this test, each phoneme (speech sound) is given one point, and each word has three phonemes.  So when he shook his head and wouldn’t wager a guess, Courtney told Brandt that he really needed to guess because he could get at least one or two points, even if he got the entire word wrong.  For example, the word was long and he said “blob.”  He got one out of three points for that word, since he got the vowel sound correct.  For keen he said “key,” so that was worth two out of three points because he only missed the /n/ sound.  A lot of the time though, he didn’t get any of the sounds.  Keg was “candle,” when was “fire,” lap was “mauve,” and, inexplicably, can was “Pentium.”  He knew it was wrong, but swore that’s what he heard.

After more than two hours of testing, Courtney and Anne took a “scoring break.”  That was a very long 20 minutes.  As much as I tried to fight it, my hopes started soaring.  I knew Brandt had done much worse than last year, but I didn’t know exactly how badly he’d done.  I knew he couldn’t have scored higher than a 50% on those harder sentences, but I couldn’t keep track of all the phonemes.

The ladies came back in, and broke the bad news.  “You’re still functioning a little high for a CI.”  Ouch.  His HINT-Quiet test scores had indeed gone down:  from 86% and 79% last year, to 77% and 60% this year (they ran two sets).  The cutoff for candidacy is 50% in the implanted ear, and 60% in the ‘better’ ear.  They only did they tests with him using both ears together though, so I’m still not sure how accurate it is to say he’s “functioning too high.”

I asked about the scores in the new tests.  He scored 36% on the single-word (phoneme) test, and 39% and 51% on the AZ Bios sentences.  I asked, “Well, what’s the cutoff for candidacy?!”  It’s 40% or less for the single words, and 50% in the implanted ear for AZ Bios.  I was confused.  “Umm, so he IS a candidate then, right?!  He scored below candidacy threshold on both, and that was with BOTH ears!”  They explained that that’s not necessarily the case.  They don’t rely on a single test to determine candidacy.  I didn’t care; he’d scored below the cutoff, he should be a candidate.  I was desperate, and livid.

Courtney and Anne spent another hour talking to us, and I tried (and failed) to stay calm.  They said that he probably “has more to lose than gain” and tried to explain why it was such a huge risk for him to get implanted.  There are “a lot of unknowns” with his case, and since he still “has SO MUCH hearing left,” they weren’t comfortable with the idea of implanting him and wiping out all the residual hearing in one ear.  Ok, I can understand that part.  However, I couldn’t help but keep thinking, “BUT, Louise!  You knew Aunt Louise!  She thrived with her CIs!  They changed her life!!  You have to give us that same chance!!”  I chose to remain silent instead of screaming, but it was tough.

Brandt asked if they had ever implanted someone with as much hearing as he had, and they told him about a woman who had been implanted about a year ago.  She had his same level of hearing, but she was so frustrated with her low comprehension that she told Courtney, ‘If I lose all the hearing in that ear and I can never use a CI, I won’t have lost anything.’  She told Brandt, then, that he would have to be willing to take that same chance.  He would have to be able to say to her, “Wipe out all my hearing in one ear, and if I can never hear out of it again, I’ll be fine with that.”

Obviously, that’s a huge risk.  And not one that Brandt feels that he can take.  He’s been worried about how he would function at work with only one ear for the several weeks of post-operative healing he’d have to have after getting implanted.  So...willing to never be able to use that ear again?  Yikes.

“Natural, acoustic hearing sounds much better than with a CI.  It’s like the difference between playing a piano with all 88 keys, or reducing those sounds to only 22 keys.”  I sarcastically commented, mostly to myself, “Well that wouldn’t matter to him, because he already hates all music!”

In the end, Courtney and Anne recommended a six-month “extended evaluation process.”  This will include:  resetting his hearing aids, trying out two or three different hearing aid brands, medical testing to rule out other conditions that might be causing the low comprehension, and aural rehabilitation/listening therapy (we’re still not quite sure what this is).

We left the evaluation...confused.  When we’re asked “how did it go??” my answer is this:  

It wasn’t a definite No, but it definitely wasn’t a Yes.

The evaluation was two months ago, and we haven’t done anything else about it.  Brandt wants to try Widex hearing aids at the very least, since that was his old brand and Anne told us that patients often have a lot of trouble transitioning from Widex to Phonak hearing aids (why didn’t we know this before??).  He’s also interested in trying out aural rehab and/or listening therapy, as soon as we can find out what all that entails and where to go for it.  Having the time for all of this, especially the frequent road trips for having new hearing aids readjusted over and over, is going to be difficult. 

So we’re still in the Gray Area, still with a giant question mark hanging over Brandt’s earless ears.

Nice Car!

On Friday night, Brandt and I went for a nice long walk (hasn’t the weather been wonderful?!) and then went to one of our favorite restaurants.  For whatever reason, the seating hostess always tries to seat us in the room with the sports bar.  It’s loud enough in the regular dining area, so adding the noise of 2 big-screen televisions and screaming football fans is just impossible.  The hostess always thinks it’s strange when I ask her to sit away from the bar.

About halfway through our dinner, she came up to our table and asked Brandt, “Do you own the black BMW?”  He nodded, and I knew that he thought she was asking if his meal was good.  Before I could jump in, she said “You do?  Wow!  Nice car!  Well your headlights are on…”  He smiled and nodded again.  I opened my mouth to tell him what was going on, when she again told him his headlights were on and he needed to turn them off.  I shook my head and said, “No, we don’t own a BMW, sorry…”  She looked at Brandt, confused.  “But, he said you did.”  I shook my head again.  “He didn’t hear you right.”

I turned to Brandt and explained what had happened.  “Oh, I thought you were asking if my food was ok.  It’s good!” he said.  Then I had to re-explain to the hostess that no, we don’t own the BMW and it was all a misunderstanding.

As we were leaving the restaurant, Brandt asked me, “Did you see the couple next to us?”  The older couple?”  I nodded.  “They were celebrating their anniversary!” he said.  Puzzled, I said, “I heard them order some sort of wine, but how’d you know it was their anniversary?  Did they have cards or something?”  Very proudly, he said, “Nope, I read their lips!  The man toasted ‘To another 23 wonderful years.  Happy Anniversary.’”  I was amazed!  “You can read lips that well?!  And you were eavesdropping on their conversation?!”  He smirked.  “Yep.  It keeps me somewhat connected to my surroundings!”

  

Lovely Sandwich

I think my hearing is getting worse…

Over the weekend, our friends Cassie and Basil came to visit, and I had a really hard time understanding either of them unless I was looking right at them.  Riding in the backseat of their car, I strained and struggled to make sense of their words, and walking around at the zoo was equally difficult because I was walking several steps behind them (I was really tired!).  I’ve known Cassie for 15 years, and I don’t remember ever having trouble understanding her in person.  I’ve had some difficulty on the phone with her for the past few years, but I assumed that was (mostly) due to us talking on cell phones.

I don’t have a problem with hearing sounds, I don’t think.  I can still hear all the little pops and creaks of our house late at night, and the random annoying neighborhood sounds.  But my speech comprehension is not doing so well.

Last night after dinner, Brandt was getting dessert, about 8 feet from the kitchen table where I was sitting.  I asked him what he’d had for lunch, and I swear I clearly heard him say, “A lovely grilled chicken sandwich.”  I laughed and said, “A lovely chicken sandwich?  And what made it so lovely?”  He looked confused and said, “Well, it was grilled, and it had lettuce...you know, nice and healthy.”  Apparently he had said “HEALTHY grilled chicken sandwich,” not “lovely.”  {sigh}

Subway

We went to Subway for a quick dinner last night, and Brandt ordered his sandwich first while I was still deciding.  One of the two girls working there asked him if he wanted his sub toasted, and he didn’t hear her.  She looked at him expectantly and he said, “I’m sorry, did you ask me something?”  She repeated the question, and he didn’t understand her.  She said it again, pointing to the toaster.  Brandt said, “TOASTED!  Yes, I want my sandwich toasted.  Sorry, I’m deaf…” 

Both girls laughed, and the one making his sandwich said, “Ha, you’re deaf.  That’s funny!”  Then she asked what all he wanted on his sandwich, and again he didn’t understand her.  She looked at him and said, “Wait, are you kidding?”  He cupped his hand behind his ear and said, “I’m sorry, I didn’t understand you…” 

Now they weren’t sure what to think.  I debated when I should chime in.  “You’re not really deaf…right?” one of them asked.  “I’m sorry?” he said, looking confused.  The two girls looked at each other, getting uncomfortable.  “You’re just playing, right?  You’re not really deaf!” the second girl said nervously. 

“No, he’s really deaf,” I finally jumped in.  “He’s not kidding, he’s deaf.”

Brandt took out one of his hearing aids and showed it to them.  They both gasped.  “Oh my lord, I am so so sorry!” one shrieked.  “Oh my god, I can’t believe I said that to you, I’m so sorry you’re deaf!!” the other said. 

He waved them off, chuckling, and said, “Oh, don’t worry about it.  I’m used to it.”

I thought it was interesting that Brandt used the word “deaf” instead of “hearing-impaired” (he doesn’t like the more politically-correct term “hard-of-hearing”).  Each term brings up different connotations and different expectations about how a person might be able to hear and interact.  Just like the choice of using “hearing-impaired” versus “hard-of-hearing,” it’s a personal choice to use “deaf” instead.  My hearing is technically impaired, although not nearly as much as Brandt; and I can interact with others—for example, the girls at Subway—much easier than he can.  So by saying that he is “deaf,” it’s a quick way to let others know that he’s probably going to have a difficult time understanding them the first time they ask a question.

ALDAcon Karaoke

The Karaoke party on Saturday night of ALDAcon was scheduled from 8:00 to midnight, but we were having so much fun, it actually ran over!  I honestly had no idea what to expect from this party.  I hadn’t done karaoke in almost a decade, and I admittedly have no rhythm (although I do like to dance, I’m just awful at it!).

Here is the first e-mail I received about the ALDAcon Karaoke, a few weeks before the ’Con:

“Since 1992, ALDA has hosted its Karaoke Party at our annual ALDAcon through the generous support of the Verizon Foundation. Karaoke has become a cherished and fun source of support by reconnecting us to a huge missing part of our social environment—music. While we may not be able to hear or understand music as we remember it, by feeling vibrations, reading familiar lyrics on a screen and dancing with our ALDA family, it recreates those wonderful moments we've missed since losing our hearing.” 

And from the flyer for it:

“Your friends can all hear.  Your family can too!  They laugh and cut up, but you have no clue what's goin’ on.  You wanna sing your heart out and dance yourself crazy, but you are afraid of being off key and you can't hear the rhythm of the song.  Why hold back?? That’s not YOU!!!”   

These really helped me to understand the purpose of karaoke at a conference for deafened people (you have to admit, it sounds strange at first).  It was amazing to watch this group of deaf people singing, signing, and dancing along to all eras and genres of music.  Everyone was having a blast, myself included.  Yes, the singing was mostly off-key; but, mine was too!  I got up to dance to “Walk Like an Egyptian,” “YMCA,” “Stayin’ Alive,” and “Macarena.”  It was a surreal experience, to say the least.

My favorite thing about the karaoke was the balloons.  To “re-discover” music, you can blow up a balloon and hold it on your lap while loud music is playing—it’s incredible!  I’m not sure who first discovered this, but ALDAcon Karaoke prides itself on making the music accessible to everyone, with both the lyrics on the screen, and the balloons that allow deaf people to feel the beat.

I was worried about the loudness of the music, since my mild hearing loss was probably at least aggravated by listening to music too loud over the years.  Luckily, there are special earplugs made for musicians that allow you to still hear all the frequencies of music, but lowers the decibel level just enough that it doesn’t damage your hearing.  I ordered the smaller size of musician earplugs, thinking that the adult size might hurt my ears.  They fit perfectly, and did exactly what they were supposed to!  I could still talk to people, and hear the music just fine; it just wasn’t loud or hurting my ears.  I actually started to wonder if the music was loud at all, until a Hearing lady at my table complained of splitting headache caused by the music. 

For the final song, “Wind Beneath My Wings,” we all stood around in a big circle singing.  Bob and Sarah were to my right and ended up standing right in front of one of the speakers, and I was just to the left of it with my leg pressed against it.  I could feel it shaking, hard, but the sound didn’t bother my ears at all.  After the song ended, Sarah yelled, “WOW, that speaker was LOUD!  I am in PAIN!  My ears are going to be ringing for a while!”  I felt guilty because with my earplugs, I was able to enjoy the music without any of the pain!

And now for some pictures.  Here’s a shot from “Hotel California”; Ken in the middle is signing while he sings.  They had a lot of cute props for people to wear on the stage:

This picture is from “Boot Scootin’ Boogie.”  I didn’t participate because I don’t know this dance, but I did sing along: