2 Weeks Post-Activation

Last night's speech therapy was beyond impressive.  Brandt only missed one of the Ling-6 sounds (he thought I said "oo" instead of "mm"--it's always been his most-missed sound) and I recited them three times, so he got a 94%!  For the first vowel word list (kin, keen, cane, can, con, coon, kern, coin, kine), he got EVERY SINGLE ONE RIGHT!  And I repeated them all several times.  I decided to try a second list (high, hoe, hay, how, who, huh, ha, he, hoy, her) and he only missed one--huh and ha sounded the same at first.

On the list of 25 random sentences, he got them all right again, same as last time.  This was after he read the sentences aloud before I randomly recited them.  I said, "I bet tomorrow Ariel will tell you to start doing these lists without reading them first."  He said, "Let's try it!"  I expected he would struggle, but yet again he proved me wrong!  He only missed two words out of the entire list!!  Jim instead of Jeff, and Don't laugh at the little puppy instead of They'll laugh at the little puppy.

And I forgot to mention that this is all done with his eyes closed so he can't lip read. A-M-A-Z-I-N-G.

Today was the 2-week post-activation appointment. Brandt went into the sound booth for testing, this time the AZ Bio (sentences with different speakers) and CNC (one-syllable, three-phoneme words) tests that he has done in the past for evaluations.  Beth warned him, "it's going to be hard today, I expect it to be hard."  But for the AZ Bio sentences, he did so well that Beth told him, "You did such a great job, I'm going to make it a little harder--it's going to be softer."  He still did pretty well.  He didn't do as well with the CNC words, but I was really struggling to understand some of them myself.  When Beth opened the door to the sound booth, she had a huge smile on her face and said, "You did great, really really awesome!"

Beth took out Brandt's scores from May, the appointment I had missed because I had no idea he was being retested (and would be approved) that day.  He had previously scored 39% on the AZ Bio sentences at 60 decibels; today, he scored 76%!!! At 50 decibels, he scored 61%.  Beth said that she considers "success" to be eventually scoring 80% at 50 decibels, and she "has no doubt that he will get there!" On the CNC test, in May he scored only 8% on getting the entire word correct; today he scored 38%. For the individual phonemes, he scored 31% in May and 65% today. And he was tested at 10 decibels lower today than he was in May. Beth said, "You have exceeded my expectations--and your own." Then she told us that now the focus will be more on understanding than just detecting sound. Progress!

Ariel was very excited when we met for listening therapy. When we were first walking through the parking lot to the appointment, she yelled "Hey guys!" behind us. Brandt turned and looked at her and she was very surprised that he heard her.  During our appointment she said, "You don't realize the significance of your hearing me from a distance in the parking lot, but I do!" Brandt said, "Maybe I shouldn't tell you this, but I had no idea it was you or what you were saying, I just heard noise." She said, "That's fine! Just the fact that you heard me and responded at all is great!  I have stood in the waiting room calling your name six times, getting closer and closer to you, and you were totally oblivious. You haven't had passive listening skills in quite a while. This is a big step."

He got ALL of the Ling-6 sounds correct, nearly all the vowel words, and all of the sentences. Ariel added rhyming words to our protocol: cat, fat, mat, bat, etc. She originally included sat but took it out, realizing that he was going to confuse fat and sat.  She kept having to remind him that sat wasn't an option, because he kept hearing it instead of fat.  Then she switched to a list of high-frequency sounds: fee, see, she, vee, zee, the. I thought these would be nearly impossible for him to distinguish, but he did remarkably well. Ariel and I were joking that towards the end, they all sounded exactly alike. I had no idea whether she was saying vee, zee, or the.  Lastly she read some short stories about animals and asked questions about them, and again he did amazingly well.

I'm still in awe of how well this is going. I guess after five years of torment in the Gray Area, we deserved some relief.

The Wait is Over: CI ACTIVATION

October 8: Activation Day
As instructed, we kept our expectations very low.  The goal for activation was to be able to tell that there were sounds in the room.  It would sound robotic, and he might only perceive beeps.  He was going to hate it.  It was going to sound horrible.  It would be at least six months before he started to even tolerate it. We'd been burned too many times before, and I was definitely not going to get my hopes even remotely up this time.  If it worked at all, I would be satisfied today.

We were supposed to meet with Dr. Awesome at his office so he could check the incision and clear Brandt for activation, but due to scheduling he ended up coming to the CI clinic instead.  He said the incision looked great and wondered how Brandt would do with the processor, so the audiologist Beth asked if he wanted to stay for the activation.  He usually doesn't but said, "Sure, I want to see how he does!" He was fresh out of surgery so he grabbed some coffee while Brandt had his residual hearing checked.  Before implantation his hearing loss was 80 decibels, severe loss.  Now the implanted ear is at 95-100 decibels, a profound loss.  This is actually good news, because it was 50/50 whether he would have any left at all.  But it was "unique" according to Beth because he only has hearing left in the middle frequencies, when usually it's the low frequencies that remain.  When Dr. Awesome came back and saw the results, he said, "That is very odd...just so weird."  Are we even surprised anymore that Brandt's ears are "weird"?!  Beth took out the CI processor (a beautiful turquoise color called Caribbean Pirate) and gave it to Brandt to put on.  The magnet wasn't strong enough so she had to add more magnets to get the cap to stick to his head.  Dr. Awesome said, "I knew he'd need more magnets, his skull and scalp are really thick."  They explained that as he wears the magnets, they will push down the swelling and after a few weeks he should be able to use less magnets.  (Thankfully the initial swelling that had pushed his ear out went down after a few weeks and the ear returned to more or less its original position.) As Beth was preparing to activate the processor, Dr. Awesome warned him, "You're not going to like it, no adult does.  Give it at least three months."

Beth started by playing a number of tones to determine if they were "soft, good, or too loud."  At the first sound, Brandt jumped in his seat and I burst into tears.  I was sitting behind him so I couldn't see his face, but I'm sure he grimaced.  After the frequencies were all set at a comfortable level, Beth said, "Ok, it's time to turn it on!"  And Brandt was suddenly hearing the sounds in the room.  He said it sounded "mechanical...I can tell there's sound there, it sounds like Soundwave from Transformers" (who speaks in a monotone, computerized voice).  Beth typed everything she was saying so he could understand what was going on.  Dr. Awesome asked if his voice was understandable and Brandt said, "Not quite."  Beth asked if he could tell the difference between speech and other sounds and he said, "Oh yes, easy."  She asked if he could tell her voice and Dr. Awesome's voice apart and he said, "You're very similar."  Then she asked how the sound compared to his hearing aids and he said, "I don't have the vocabulary to describe it...it doesn't sound natural."  As Dr. Awesome left he said, "Remember, this is just the start, not the finish."

Beth told us that today she was only focusing on comfort, that fine-tuning would take place later on.  She put five programs on the processor, each one progressively louder, explaining that "things will start sounding clearer and softer the longer you have on the processor."  Brandt said, "It's already getting better as I've had it on longer.  It's not great, but it's better." Beth reminded him that he needs to primarily wear only the processor for the first month, so that his brain can adapt quicker.  By the time the appointment was over Brandt was already understanding speech, with just the processor, WITH HIS EYES CLOSED!!  This was only an hour since activation.

Over the next day and a half, he seemed to be understanding me better than he could with his hearing aids.  He would randomly close his eyes, stick his finger in his other ear, and say, "Ask me a question."  I asked things like "What is your favorite color?," "When did you graduate high school?," "What did you have for breakfast?," etc. and he understood me every time.  I was having to repeat myself less often than I was used to.  We were stunned.  He said that I still sounded robotic and monotone, but he could understand me. And surprisingly, he doesn't hate it.

October 10: Activation, Part 2
We returned to the CI clinic two days later for "Part 2" of the activation.  Brandt had already moved up to the fifth (loudest) program on the processor and said the volume was comfortable.  Beth asked about sounds and he said that breathing and eating are "distracting," the microwave beeping has a "lower pitch than it used to," and strangely the only sound that hasn't changed at all is our cats' water fountain.

We told Beth how well he was doing, that he could understand me even with his eyes closed and seemed to be doing better than with hearing aids.  She said, "So far, this is a really good sign."  But she also cautioned us to stay guarded, because we still have a LONG journey ahead.  She encouraged us to talk to each other a lot so he gets more practice with communication, and for Brandt to watch television with captioning and try to focus on listening to the dialogue.

October 16: 1 Week Post-Activation
I was very anxious to see how Brandt was going to perform in the sound booth.  Knowing that it takes quite a while to get all the fine-tuning done, I kept my expectations low (the theme of this month).  I figured he would miss about 75% of the words.  I was shocked when he correctly repeated back each of the words Beth said: mousetrap, birthday, school bus, railroad.  I did a little happy dance in my seat.  Then she started reading off more words, but at a lower volume.  Uh-oh, I thought.  He won't be able to hear any of those, they're too soft. But he proved me wrong, he got every single one again.  Then she dropped the volume again.  Still got them all correct.  I burst into tears.  The volume dropped yet again and he got about half, but it was so quiet that I had to strain to understand them.  I was trying not to make any noise because I didn't want to distract him, so when Beth opened the sound booth door, I had my hand over my mouth as my shoulders shook silently.  Brandt turned around to look at me and thought I was suppressing laughter.  He said, "I must have done really bad if you're laughing at me." I wiped my eyes and explained that NO I wasn't laughing, I was bawling because he did so unbelievably well!

Back in Beth's office, she told us that she is "very pleased" and compared his performance from today to how he did a year ago with hearing aids.  Aided, he could understand the words at 35 decibels.  Today, it was 25 decibels! At only one week post-activation!!

Next, Ariel came in for listening therapy.  We had already done about six months of listening therapy with his hearing aids, ending in January of this year, so we knew the drill.  First we worked on Ling-6 sounds: ah, oo, ee, sh, mm, ss.  Then we did a vowel word list, where the first and last sound of each word is the same and only the middle vowel is different: pit, pat, pot, put, pet, pert, putt, etc.  Then we added a new exercises, a list of 25 random sentences.  Brandt read the sentences and then Ariel and I took turns reciting them for him to repeat back.  At this point, I was no longer surprised that he did a lot better than he had with hearing aids--but I was very very happy.

We went out to dinner after the appointment to celebrate and test how well Brandt could do in a noisy restaurant.  Despite the loud jazz music playing overhead, and several loud birthday parties (involving copious amounts of alcohol) around us, he did amazingly well.  I was struggling to hear him sometimes but he didn't seem to have much trouble at all. Incredible!!

October 19: 11 Days Post-Activation
Tonight we did our listening therapy homework, and I know the words "amazing" and "incredible" are being severely overused lately, but I don't know what else to call it!  With the Ling-6 sounds, I recited them each three times and he only missed a total of two--that's an 89%.  On the vowel word lists, he got about 85%. I'm using the same notebook to record his results now that I used for our previous, hearing aid round of listening therapy, so I can compare his results.  He used to get about 50% on both the Ling-6 and vowel word lists. Definitely a major improvement! Then we did a new list of 25 random sentences and he didn't miss a single word.  We both sighed with relief and awe.  It's like we've been holding our breath for the past five years and now, we can finally believe that maybe it's going to be okay.

Advanced Bionics Naida processor in Caribbean Pirate turquoise 

No Turning Back: CI SURGERY

In the early morning hours of September 11, we drove through the pouring rain to the hospital.  I was terrified, but tried not to show it.  After Brandt was called back to the OR prep room, it seemed to take ages before I was allowed to go back.  I raced back once I was summoned, trying to act supportive and not at all scared out of my wits.  He was hooked up to an IV, with compression socks and a strange contraption that kept squeezing his legs.  Dr. Awesome briefly stopped in to talk with us, confirming which ear he was operating on and letting us know that the surgery "usually takes exactly 90 minutes."  Then the anesthesiologist came in, and was very excited that this was Brandt's first time getting anesthesia.  I was not so thrilled about it. They wheeled him off to surgery and I struggled to hold it together.  But I didn't want to upset his parents in the waiting room, so after a few quick tears I dried my eyes and walked out of OR prep with my head high.

There was a woman sitting at a desk in the family waiting room, giving updates on patients' statuses.  After we had been in the waiting room over an hour, she announced to us that Brandt's surgery had begun.  I was disappointed because I thought he'd already been in surgery for a while.  I restarted the 90 minute countdown in my head.  I don't know how I managed to keep from driving myself crazy, especially with obnoxious soap operas playing loudly on the tv overhead, but I did.  Exactly one hour after the announcement, Dr Awesome came bursting through the door with a big smile on his face.  It took me so off guard that I jumped out of my seat and screamed, "Oh! You're here already!"  He told us that surgery was a success, and he was glad that Brandt "has such a big head, I had plenty of room to play around in there! Much easier than the one-year-old I implanted yesterday, her entire skull could fit inside Brandt's mastoid."  We thanked him profusely as he told us, "He's going to hate it for the first 3-6 months, then he'll be ok with it, at a year he'll love it, and at two years he'll be ready for another one."

Fortunately we have several friends and acquaintances with CIs, so I was able to send out e-mails with a lot of questions about the surgery and post-op.  So I knew that he needed to sleep in a recliner for the first few nights, that he needed to stick to foods that aren't too chewy, sneezing was going to hurt, and they kick you out of post-op recovery a good hour before you're actually lucid enough to really be discharged.  I still wasn't prepared for the state he was in when he was sent home though.  He could barely talk and his speech was very slurred.  Definitely still loopy.  The nurse told me, "Ok, I'm going to let you get him dressed and ready now!"  I told her that he obviously needed more time to recover and she said, "Nope, he's ready to go home!"  I tried to argue for more time to let him become lucid but she insisted that it was time for him to leave.  I had to stand him up and get him ready by myself, terrified that he was going to fall and split his heavily-bandaged head wide open.  At least someone wheeled him down to the pickup area and got him in the car for me, but I was pretty angry.  I drove home in our new car, only the second time I'd ever driven it, in the rain.  Thankfully by the time we got home, he was getting lucid and was able to walk into the house with my help.  It took awhile to get his pain medication and he was obviously hurting.  He had some trouble sleeping, probably from the pain meds, and was in some pain, but he was able to get up and about much quicker than I had expected.  

48 hours later, the bandages came off.  The incision site wasn't too gorey, and cleaning and slathering it with Neosporin twice a day was easy.  The swelling made his ear stick out a lot farther than the other ear, but I didn't say anything about it.  It's starting to go down so hopefully the ear will flatten back out. Brandt had trouble moving his head in the first week, so if I needed to get his attention he had to swing his entire body towards me.  I had to make sure to always talk to his left ear (which will change once he is activated, to always talking to his right ear.)  He was convinced that he had some residual hearing left in the implanted ear; Dr. Awesome said he had a 50/50 chance of retaining some hearing and we would know once the bandage came off.  After a few days, he wasn't so sure though.  But he was confident that he could function ok at work with only one working ear, so he has been back to work after a week and a half.

We still have another two weeks before activation, and it's torturing me to have to wait this long!  I'm so anxious to see what's going to happen.  We're keeping our expectations very low for the first six months at least, but I'm ready to get this show on the road.

1 week post-op

Out of the Gray Area, Into the Fire

It still shocks me to say this, but we have officially left the Gray Area.  I repeat, WE HAVE LEFT THE GRAY AREA! While I hated and resented the Gray Area, I had grown used to it.  I had accepted that we would be stuck in this limbo for years, maybe forever.  It was miserable and frustrating but it was what we knew.  We'd resigned ourselves to it, agreed to stop talking about Cochlear Implants and evaluations and all those what if's (and yes I pretty much abandoned this blog) because it was too hard.  I knew I couldn't get my hopes up yet again only to have them crushed.  I couldn't go through that again.  So I can't even describe the conflicted feelings I went through when everything changed a few months ago.

After the appointment with Dr. Awesome and Dr. Windsor last September, we started working with a new audiologist, Beth, and a new speech-language pathologist, Ariel.  Like our previous team from three years ago, Beth and Ariel thought that with a different brand of hearing aids and extensive listening therapy, Brandt could significantly improve his speech perception and would not need a Cochlear Implant.  They felt that Oticon hearing aids have a much better processing algorithm than his Phonaks, so they gave him a loaner pair for an extended trial.  We also started doing listening therapy, both with Ariel and at home.  Well, very long story short, six months with the new hearing aids and listening therapy didn't help at all and our communication was struggling more than ever.  The next theory was that he has Auditory Neuropathy, which Dr. Awesome and Dr. Windsor had suggested last year.  Beth conducted an Auditory Brainstem Response (ABR) test, thinking that it would confirm Neuropathy.  I don't even know why we were surprised, but the test came back as “probably no” on his right ear and “inconclusive” on the left ear.  She retested the left ear twice and it would never cooperate.

In May, Brandt had another appointment with Beth and Ariel.  We assumed it was just to return the loaner hearing aids, so I didn't bother going with him.  Having accepted that he wasn’t a CI candidate and there was nothing more we could do to improve his speech perception, we resigned ourselves to years more of struggling to communicate.  I was not at all prepared for the text message I received an hour after he should have been home from the appointment: “They say I am a candidate now. Want to get MRI and CT scan next. I’m talking to their financial counselor now about insurance.”  Umm, what?!  I just sat in stunned silence for a few minutes, reading the text over and over.  I thought he must have misunderstood what they told him and cursed myself for not being there.  It didn't start to sink in until he finally got home and explained that they had retested his hearing with the Oticon hearing aids and since he performed so much worse than ever before, he was now eligible for a CI as long as the brain scans did not find anything abnormal.  Another long story short, both scans came back normal.  

The next month, Brandt had his appointment with Dr. Awesome.  He entered the room saying “Well, they finally approved you!  All you have to do now is pick which ear and which device you want.”  Wait, hold on.  ‘All’???  No.  No no no. Not even close.  With all due respect to Dr. Awesome—and we respect him immensely—it’s not nearly that simple.  Not anymore.  Not after years of getting our hopes up only to have them crushed, years of emergency audiologist appointments to send back defective devices for the umpteenth time, years of theories for how we might improve our situation that never pan out.  Years of heartache, frustration, and disappointment.  I told Dr. Awesome that five years ago I would be jumping up and down crying happy tears at this news, but it’s so complicated and seems so risky now, we don't know what to think.  He chuckled, having heard this many times before apparently.  Brandt asked, “How can we know what is causing my hearing loss?  And how can we know that a CI will actually help?”  Dr. Awesome said that we can't know, his hearing loss is idiopathic (unknown cause)—90% of hearing loss cases have an unknown cause.  And there’s really no way to know if the CI is going to help the way we want it to.  You just have to do it.  Is this scary to anyone else??

Dr. Awesome said that it probably would have been better if Brandt had been approved four years ago, because then he wouldn't have had all this time to second-guess it.  And I agree, it would have made it much easier.  There wouldn't have been a question in my mind four years ago, I was SO sure that he would get approved and that it was going to improve our lives immensely.  I wished I could get that naiveté back, but it’s long gone.  We were weighing an option that has the potential for high rewards, but that possibility comes with a high risk.

So we went ahead and set the surgery date, September 11, with the understanding that we might back out at any time.  Brandt chose his company--Advanced Bionics, because its technology has the most connectivity, and his ear--the right one, since it had better data from the ABR test.  Then we decided to get a second opinion, because we were so on the fence about this decision.  I kept saying, "flip a coin, because I seriously don't know if I want you to go through with this or not."  We thought we had our CI center picked out for the second opinion, but after a series of problems over the course of 6 weeks, it fell through.  We didn't know if we could get another appointment before September 11, and the next available surgery date was in November, which was not going to work with our schedule.  It was 4:02 in the afternoon when I just started googling CI centers within a two-state radius and called them up.  Some were already closed for the day, others didn't have appointments until late September.  The first one to answer and have an appointment was UT Southwestern in Dallas.  Brandt faxed his medical records to them on his way home from work, and first thing the next morning he had an appointment for August 29.  Thirteen days before surgery.

We packed up and drove (and drove, and drove, and drove) to Dallas.  We made it through the thick traffic and construction and got to the appointment early.  First we met with an audiologist, who reviewed Brandt's tall stack of medical records: hearing tests, MRI, CT, ABR, notes from three evaluations and months of listening therapy.  She didn't do any tests of her own, since we already had plenty of data.  She said that she didn't think he has Neuropathy, and she thought he was a good candidate for a CI.  "On paper, I think you would do pretty well with an implant...but you do have a lot to lose, so it is a crapshoot.  I say go for it, if you can accept the possibility that it could or couldn't work.  It probably will, but it's still a shot in the dark."  This was actually much more positive than I was expecting, I honestly thought she would say something like 'Why are y'all even here, he obviously should not be a candidate and you're just going to have to suffer with hearing aids until you go deaf.'  Seriously, that's what I expected.  We had to wait two hours until the appointment with the otolaryngologist (I could barely eat my lunch) but it was well worth the wait!  He was a very upbeat doctor with a loud, booming voice.  He agreed that it doesn't sound like Neuropathy, just a "typical hereditary pattern with a dip" (which we discovered is called a "cookie bite," a term we had never heard before).  He told us, "I think an implant is a good idea for you, you're within both the FDA and Medicaid criteria--and Medicaid is more stringent than the FDA.  You have a much better chance to do better with a CI, because adults with progressive hearing loss do best.  It's a leap of faith, but you are struggling with these hearing aids.  I think you'll do very well, I say go for it!" We left the appointment in a daze, and on our long drive back home, we discussed preparations for before and after surgery.  

Brandt decided, "I'm going to have to do it eventually, my hearing is just going to keep getting worse, so I might as well do it now."  No more flipping coins, we were really out of that %#&*$@ Gray Area, jumping into the fire.

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.