Cochlear Implant Evaluation, PART 1

On Friday, Brandt had his much-anticipated Cochlear Implant evaluation; or at least, “Part 1.”  We drove the 2 hours in, and first stopped at Dr. Awesome’s clinic to pick up the new new iCom.  Phonak gave him a brand-new one, with new medical-grade silicone neckloop and updated software, even though they had completely rebuilt his old one a few weeks ago.  Brandt tested it with his iPhone (listening to an NPR podcast and music), the FM system, and talking on the telephone.  It worked fine, so we were off to get the CI evaluation in another part of the hospital campus (it’s a completely different office—don’t ask why, it’s way too confusing).

The office is geared towards children, so the waiting room was full of toys, kids’ books, and Hannah Montana playing (closed-captioned!) on the big-screen televisions.  There were 4 toddlers waiting with their parents; Brandt was the only adult patient.  We were summoned by Tiffany, an audiologist, and Marsha, a speech-language pathologist, and sat down at a small round table. 

Tiffany explained that the Cochlear Implant evaluation would probably take two or three visits, and “we might only have time to talk today.”  Brandt and I glanced at each other.  We want to get to the good news in as few trips as possible.  Tiffany asked Brandt a number of questions:

• Tell me about your hearing loss.
• Tell me about your current hearing aids and FM system.
• You have some very high-tech technology; do you use your FM system in the classroom while teaching? (No.)
• Is there anything else about your hearing loss that I need to know? (I mentioned his ever-worsening tinnitus.)
• Do you have a family history of hearing loss? (Yep.)
• Tell me what you already know about Cochlear Implants (I started laughing at this one; it would have taken a good 2 hours to fully answer!)
• Do you have any burning questions about Cochlear Implants, the surgery, etc.? (We had a 2-page list of questions, most of them assuming that he was getting implanted; so we decided to hold off on most of them.)

Tiffany then told us that adults are not given a choice of Cochlear Implant company and must receive an Advanced Bionics implant, and wanted to make sure that was ok.  I said, “Well then it’s a good thing we’ve already decided on AB!”  She explained that after the surgery, Brandt won’t be allowed to use a hearing aid in his non-implanted ear for a month, so that his brain is forced to learn how to hear with the CI.  Marsha explained that “the best person to learn to use a Cochlear Implant has had normal hearing,” and predicted that Brandt would have a “very fast learning curve” and “adapt quickly” to the CI because he had had “normal brain development” in regards to hearing and learning language.

Tiffany pointed out that Brandt has more residual hearing “than normal,” but they have implanted people with even more hearing than he has.  She asked about his work schedule, and he explained that he would have to be implanted at the beginning of the summer term and would set up his schedule so that he wouldn’t have to teach any classes.  Tiffany and Marsha both seemed very happy with this answer. 

Then Tiffany asked if Brandt would like to do a few hearing tests, or if he was ready to leave (we’d been talking for about half an hour).  He said, “Let’s do as much as we can today!”  They let me sit in the sound booth with him; there were lots of blocks, Legos, plastic fruit, stuffed animals, and stickers strewn around the booth.  First Tiffany did a tympanogram, which tests the middle ear and flexibility of the eardrum.  Then she did pure tone audiometric tests; these are the tests that are done when you get a ‘basic’ hearing test.  First the test is done through “air,” where Brandt wore earphones and raised his hand when he heard beeps at different pitches.  Then the test is done with a bone conduction oscillator (pictured above left) placed behind the ear.  Brandt’s speech discrimination was tested, where he repeats back a list of two-syllable words (they used the same 4 words over and over, which made it pretty predictable).  He scored a 35%, which is 11 points better than he has scored on the last 2 tests he’s had done since last spring.  I’m convinced this was because she consistently used the same 4 words.

After the ‘basic’ hearing test, we sat back down at the round table and Tiffany said, “Well, it’s 2:15, you’ve been here an hour.  I’m sure you’re ready to get back home now.”  We both furrowed our eyebrows and said, in unison, “Um, no, we want to keep going.”  She acted surprised and said, “Oh…ok…well, then let me take your hearing aids for a minute, I want to check them” and left the room.

Marsha sat down next to me with a stack of papers in her hand, and started asking me about insurance and finances.  Had we contacted the insurance company?  Did we know if they would pay for the CI surgery?  I was pretty confused, because we thought they were supposed to find out about all that.  Poor Brandt was sitting there, Earless, without a clue as to what we were talking about.  Marsha asked him, “Did you get all that?”  He said, of course, 

“I have no idea what you’re saying.  She took my hearing aids, I can’t hear you at all.” 

Marsha answered, “Oh, well that’s good to know!”  So she just talked to me, and had me write everything down so I could explain it to Brandt later.  Legally speaking, this really isn’t allowed.  I’m not Brandt’s legal guardian or parent, I don’t make his financial decisions for him.  (I don’t even have health insurance!)  Marsha talked to me for a full half hour, saying that she’s not a financial advisor and really didn’t understand all this, because it’s so confusing.  Their office submits the bills for some things, while Dr. Awesome’s office bills for others.  She gave me the e-mail address of the hospital’s financial advisor, and had me promise to e-mail him as soon as we got home.  Brandt continued to stare blankly at us, getting a little madder with each passing minute.  I tried to stay calm, thinking it must be a really good sign that he would be approved, since Marsha was talking like he was definitely getting the implant (saying “when” instead of “if,” etc.).

Tiffany finally came back and gave poor Brandt his Ears back.  She said, “Ok, it’s 15 ’til 3:00, you must be ready to start heading home.”  Again, we said, “NO, we want to keep going.”  She asked if he wanted to start on the aided hearing tests—meaning, testing done with his hearing aids on.  He hadn’t had this done before, so I was anxious to see the results.  There was a certain spot that he had to sit in the booth, a few feet away from a speaker.  First they played static at different frequencies and volumes, and Brandt raised his hand when he heard them.  It was hard for me to not react to them, but luckily he kept his eyes closed.  Then they played a tape of a man reciting sentences, and Brandt was to repeat back as much as he could understand, getting “one point” for each correct word.  I was shocked at how well he did.  There were several times that I thought, “Oh he won’t get one word of that sentence” and then he got the entire thing 100% correct.  He would shake his head, grimace, and tentatively repeat back each word slowly, ending with, “But that can’t be right.”  But it was right.  I was staring at him like, “Who is this person and what have you done with my deaf husband?!”

When the test was over, Brandt looked at me sheepishly and said, “Tell me later just how bad I did.”  Distraught, I said, “You didn’t do nearly bad ENOUGH!”  Tiffany opened the door to the booth and said, “Ok, let’s go back to my office and chat.”  “Chat”?!  I knew this wasn’t going to go the way I’d been hoping.  Brandt asked her, “So are you going to do the Hearing In Noise Test next?”  She said, “That was the Hearing in Noise Test.”  “No,” I said, “the test with the background noise.  The HINT test.”  “But that was the HINT test,” she said.  I shook my head emphatically.  She answered, “It’s the Hearing In Noise In Quiet Test.”  Brandt and I looked at each other, both quite confused.

We all sat down at the table and Tiffany said, “Ok, you did a little too well on that test…WAY too well, actually.”  My heart sank and my lower lip started trembling.  I could feel the tears pooling in my eyes.  She said, “You needed to score 60% or worse in ‘the best-aided condition,’ which is what we just did.  You scored 90%.  I even dropped the volume lower there at the end, and you still scored an 85%.  So, you are not a Cochlear Implant candidate.  Not even close.”

The room started spinning.  Brandt again asked Tiffany about the Hearing In Noise Test, and she again said that was the HINT test, done in quiet.  We were both still very confused.  She and Tracy both tried to ‘explain’ that “listening with a Cochlear Implant doesn’t guarantee better understanding in noise, only in quiet,” and that his hearing test showed that he was “still outside the range for a CI.”  Tiffany added, “You’re getting pretty good aided benefit,” and I snorted.  I don’t know how he did that well in the booth, but even sitting at the kitchen table, with no background noises, he never functions at 90%.  But I was too shocked and upset to argue.  Marsha said that Brandt was making the most mistakes with vowel sounds, which is unusual.  “For most Cochlear Implant candidates, they have trouble with consonants—like they can’t distinguish between ‘s’ and ‘sh,’ or ‘m’ and ‘n.’  But that’s not your problem.” 

Tiffany hypothesized that his “vowel confusion” was caused by a lack of “low-pitch information” given by his hearing aids, and said that when she ran them through a computer program, it said they weren’t programmed correctly.  She offered to take them and “program them correctly” on her computer.  I shook my head.  It’s taken a full year to get those hearing aids programmed as good as they were, and I didn’t care what her computer said.  It was almost 4:00 on Friday afternoon, and she wanted to start changing the settings on his hearing aids, even though we were far away from Dr. Awesome’s clinic where his preferred settings were stored.  No.  No way.  Get us out of here.  Brandt politely declined, and Tiffany and Marsha started talking about how he could use his FM system in more ways and in different situations.  Tiffany showed him how to place the FM system in the middle of the table and “you can hear everyone sitting around it!”  I scoffed.  “It doesn’t work like that,” I whispered.  Brandt spent a few minutes explaining how the FM system doesn’t really work as well for him as the brochure implies, and she didn’t really have an answer for him.

They asked if we had any more questions, and I shook my head again, just wanting to get out of there as quickly as possible.  Tiffany added, “We could always test your ears individually, and Marsha could do some language tests with you, but I’m positive the results would be comparable.”  We decided to leave.

It took a while before I could even talk, much less process what had gone on.  If his CI candidacy all came down to that one ironically-named test (Hearing In Noise In Quiet?!), why hadn’t they done that first?  Or at least sooner?  And they hadn’t even wanted to do it that day, they wanted us to come back—to take off a day of work and drive another 4+ hours round-trip, only to find out that he wasn’t a candidate.  I was fuming.  Brandt was confused and “surprised.”  On the drive home yesterday, we discussed our plan for moving ahead. 

Since it was apparent from meeting Tiffany and Marsha that they’re used to working with children, we will request an evaluation with members of the team who work more with adults.  Brandt will ask to have the testing done on his ears individually, and have the language testing done with a speech-language pathologist.  We will discuss with these team members how Dr. Awesome had implied that Brandt’s candidacy wouldn’t hinge on the result of one single test, but would take into account a number of factors and would be decided by the CI Team as a team.  We will make sure they understand that we want all of this to take place at the same visit, even if it’s 3:00 on a Friday afternoon and they’d rather go home early.  And we will contact Dr. Awesome directly and get his opinion.

So, it’s not over yet…