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.