I Can Hear You Now

I’m deaf in my right ear. It’s aggravating, because I speak at conferences, and I have lunches and dinners at round tables. Can I hear the person on my right? No. Irritating! I have to explain, “I’m deaf on that side. Please nudge me if you want to talk to me.”

And, then what happens? Inevitably, the people on my left leave. Only the people on my right hang around. So I cup my ear to talk to them. Even when I cup my ear, I don’t hear them all that well. Irritating and socially awkward.

Why This Hearing Aid?

I can’t wear a normal hearing aid, because I have inner ear damage. Normal hearing aids amplify the middle ear. Well, my middle ear is great. It’s my inner ear that’s broken. We don’t know for sure, but I suspect that my right cochlear is blown, along with the hair cells. My auditory nerve is definitely shot. At least one of my nerves out of my cochlear is blown, because I have tinnitus.

I have a Phonak ZoomLink+ hearing aid, but even on the correct setting, it amplifies all sound. It works best when I am many feet away from the microphone, not when I am close. I only wear it when I take a dance class or with my trainer at the gym. Maybe they have improved the firmware, but it’s not user-upgradeable (bad design). (Do you folks think I’m too stupid to be able to upgrade the firmware? People who wear this hearing aid have to be smart enough to select which microphone to use. We can upgrade the firmware. #headpalm)

So, when the SoundBite came along, I looked into it. (Yes, I am a candidate for the Baha, but as a frequent head MRI visitor, I do not want a metal implant in my head. No, not even titanium. Yes, I know titanium is not magnetic. But still. It’s my head in the magnetron. I don’t want metal in it. I just don’t.)

The Demand Is High

Everyone else and their brothers and sisters are looking into the SoundBite, too. The number of dispensing ENTs and audiologists are small. The demand is high.

So, I had an appointment back in mid-December to see the ENT and the audiologist. I had to be examined to make sure I needed the SoundBite. Why? To make sure I was deaf in one ear.

Oh, Mark and I laughed about that one. Could they take either of my two previous hearing tests? No, they needed to perform new ones. Were they serious? Yes.

I have learned now that ENTs and audiologists are serious people. Once you get to know them, they bend and chuckle, but they are serious people.

I made an appointment at Boston Medical Center and drove in and left my car with the valet parking people. Sweet guys. I had lunch at the cafeteria. I was early for my appointment, as requested. Then the fun started.

You’re Late!

Although I had eaten, I was still quite dizzy. I will tell you the story of my October-February dizziness later. The line to check into the doctor’s office was long. I was standing in line, trying to maintain my balance. Ten minutes later, after my appointment was supposed to have started, an office manager type realized Something Was Wrong. Much discussion ensued behind the desk. I thought about sitting down, but realized no one would know I was there. I remained standing.

Luckily, the door to the offices opened, and a woman stuck her head out. “You,” she imperiously said pointing to me, “Come with me.” Mental fist pump! I am thrilled. Of course, I’ve been standing still for so long that as I turn I stumble and start to fall into the person behind me. Oops. Luckily that person is healthy! He helps me right myself and I get going again.

I follow her down the hall into her office, and the first thing she says to me is, “You’re late.” By her clock, I am. But, by mine, I’m not. I’ve been there, waiting to check in. My mouth opens by itself, and out pops, “No, I’m not. I’ve been here for 15 minutes waiting to check in. You’re late checking me in. I was early. Now, let’s get to the good part. What cards would you like, insurance, copay, what?”

We do paperwork. I sign many pieces of paper. I compliment her on the beautiful pictures of her children and show her my children. Yes, I’m in there about 20 minutes. I have no idea if I will see her again, but she is not having a good day if she needs to tell me I am late. I am not having a good day if I’m falling on people in the office. I might need her again. I need to build rapport.

I leave her office, and we are friendly. Phew!

I Make the Doctor’s Day

I then go to the audiologist for my hearing test. It is the same hearing test I have had before. Fine. I go to see the ENT. He wants a history. I explain my history. His eyes light up. I’ve got him on the hook.

“You had an inner ear hemorrhage? That’s very rare.”

“Yes, I know. I am a unique individual.” It’s all I can do to say this and not be Dogbert about it.

“Would you let me see your MRIs?”

“Of course.” He’s not part of my regular circle of doctors. We talk about the mechanics of making this happen. He actually whistles, walking down the hall. I have made his day! Now, maybe I can see the audiologist who will give me the SoundBite?

It’s SoundBite Time

I have been at the office for over an hour. I can finally see the audiologist I came to see. She agrees that I am a candidate for the SoundBite. I give her a deposit of many dollars and she tells me I now need to see a special dentist who will make a mold of the back of my mouth, near my back molars, so I can have a prosthetic made that is mine, and mine alone. Well, good. I don’t want anyone else’s.

It’s taken me two hours at the office. I’m bushed. I retrieve the car, drive home, and take a nap.

 Time to See the Dentist

It turns out that the dentist is “specially trained” to make an impression of my mouth. I can’t see my dentist. I have to go to the BU Dental School. Well, there is no valet parking there. I park several blocks away and walk back to the school. There is no handicapped access to the school. I walk up the steps. I am exhausted.

I see the lovely receptionist, with whom I have spoken several times on the phone. I have checked in by phone, so I have only a few questions left to answer. I answer them. No, all the questions I answered for 20 minutes at my previous checkin at the ENT were not valid. This is another doctor. I have to answer them again. Okay.

This dentist comes in, I answer more questions, and he takes a mold of my mouth. It feels just like when the dentist took a mold for my mouth guard. Yes, I am one of those teeth grinders, so I have a mouth guard at night. I wish it was because I played in the NFL with Tom Brady, but I am not Wes Welker. Oh well. In a future life—definitely not in this one!

I walk back to my car. This is mid-January. I manage to get back to the car and drive home. I take a nap because I am so exhausted from walking 2.5 blocks there and back. Granted it had snowed and I was walking through slush. But a total of 5 blocks? I am kind of disgusted.

Time to Get the SoundBite

In early March, I hear from my customer representative. She is lovely. She wants to know if I’m happy. “I’ll be happier when I get my SoundBite.” I explain about the lack of valet parking and the steps at the dental school. She will check on it.

She explains that all the prostheses are hand made. Of course they are; that’s why they go to the manufacturing site in California. My audiologist is in Massachusetts and there are others throughout the US, maybe even elsewhere. Demand is high. I don’t think they’ve caught onto lean project management or lean manufacturing. I did explain I was a consultant and I could help :-)

I must have been on good behavior. I received a phone call a week later saying my device was in. Joy! I went in to be fitted.

I did the whole thing with driving in and valet parking. I checked in, no waiting! When I saw the audiologist, my customer rep was right there, so I had a chance to meet her, too.  We put the SoundBite in, and I could hear her whisper in my ear, but I could not hear what she said. That was already an improvement.

SoundBite-product-charger-boxThen we went to the lab, where we briefly tested my hearing so she could turn up the gain at different sound levels. I love knowing just enough physics to understand what is going on. When we left the lab, I had the same hearing in both ears. Incredible!

But, I was producing feedback on the walk back to her office. So she turned down the gain. Boo. I still had pretty good hearing in my right ear. Enough to hear whispers in my right ear. Not bad!

She gave me instructions and I left. To see all the images of the SoundBite, go here. I don’t know if people can see it in my mouth when I smile. I don’t care. I really don’t care if they see the little wire in my ear. I think my hair hides it.

What’s the Verdict, JR?

The real test of the SoundBite is how I use it. I’ve been using it for my dance classes and at the gym, where I really like. I like it much better than the Phonak. It’s very comfortable and my dance instructor or trainer does not have to wear anything around his/her neck. The sound is real, and the signal/noise ratio is quite good.

I can drink anything with the SoundBite. I find it difficult to eat with the SoundBite. My mouth is too small :-) I know, this is difficult for you to believe. But what comes out of my mouth is from my brain. Nothing small about my ideas. My jaw must be small. Chewing on my left is what is difficult. I can chew on my right.

But I got the SoundBite so I could hear at conferences, because I spend a large portion of my life sitting at round tables, right? Last week, I was at AgileIndy, and I used it there. Aside from the eating problem, it worked like a champ.

I used it all day in my tutorial. I’m not good enough to locate sound with it yet. Since there is a slight lag from the sound with my right side, eventually, I might be able to locate sound. Right now, I have no idea where sound comes from. All sounds come from left. All of them. But I might be able to discern that someday.

Everyone’s speech sounded normal, which is great. Up until now, I’ve used a combination of reading lips and cupping my left ear to hear people. You might be surprised at how many people hide their mouths when speaking. Quite irritating. I didn’t have to do that at all on Thursday. It was great! I think I had to ask a couple of people to repeat things I didn’t understand, not things I didn’t hear. Big difference.

I used it at dinner, which was good, and at the panel. I noticed I was getting tired earlier than I expected. I chalked it up to travel. I noticed my tinnitus was louder. I chalked that up to randomness. But the SoundBite worked great.

On Friday, I used it all day, too. It didn’t matter where I sat in any session. I could talk to people on my right or my left, and I could hear them! This is a new feeling. For the past three-plus years, I’ve been sitting on the aisle so that no one can sit on my right. Now, it doesn’t matter.

Lunch was difficult because the room was so very loud. I suspect that any hearing aid is not going to help in a very loud room. I removed it for my keynote, because I didn’t want to run the risk of feedback and it makes my speech just a little off. The prosthetic is a little large, and it does change my speech.

She Likes It!

I like it. I can wear it all day, which I could not do with the Phonak. I can’t quite eat with it. At least, not yet. I can confer with it. I can teach with it. I understand when I have to change out the in-the-mouth device.

When I wear the device, especially in loud environments, it increases my tinnitus. Okay, I can live with that. As a consequence, I think it increases my dizziness. Well, that’s a tradeoff I will have to make. Do I want to hear the people I am with and stay stable, and not participate? Or, do I want to manage my dizziness and participate more? Participate, please. I have ways of managing my dizziness.

I’m going to be dizzy no matter what I do. I would like to participate more fully. Being partially deaf is socially awkward. No one can see it. And, people put their hands over their mouths and keep talking. Or, they turn away and keep talking. They have no idea you can’t hear. No idea at all. Being able to hear again out of my right side is huge.

If you too, have single-sided deafness, and you want a non-surgical solution, consider the SoundBite. It’s not the same as your own hearing. Nothing is. But it’s a good solution.

Update as of Jan 2015:

I received an email from Sonitus. This is part of it:

As you may know, the Centers of Medicare and Medicaid Services (CMS) recently made decisions to restrict coverage of novel solutions for hearing loss, with consequences for patients, clinicians, and future innovation.  In the wake of these decisions and after pursuing all alternatives, Sonitus Medical has ceased operations with deep regret. 

If you experience single-sided hearing loss, I guess you are out of luck. Those people have never been deaf in one ear. They have no idea how bad the current hearing aids are. Stupid decision.

17 thoughts on “I Can Hear You Now

  1. Debi Zylbermann

    Wonderful news ! Enjoy hearing again, and carry on writing such great posts – I was smiling the whole way (mostly from the way you write!!)

    1. johanna Post author

      Thanks Debi. I have been working on how to write with humor. I have a draft about that, too! It’s harder than it looks…

  2. Judith

    Thank you for your post! I am also recently unilaterally deaf with dizziness and just got the SoundBite. Still find that I use it only when needed. Do you find that it gives off feedback?

    1. johanna Post author

      Judith, when I ride in a car, and it’s fully charged, sometimes it gives feedback. I don’t wear it when I speak in front of audiences, because it changes my speech, and I’m concerned about possible microphone feedback.

      But I do wear it when I teach workshops, and I really love it for that. I still can’t tell where the sound comes from, but I hear everybody’s comments. I love that.

  3. Trish Walraven

    It’s been about six months since I woke up to sudden hearing loss and tinnitus in my left ear. Fortunately it hasn’t gotten any worse and I’m learning to cope well with about a 50% loss. But what if the rest of the hairs in my ear explode? Heh. I started looking online for solutions and as a dental hygienist I’m trying to learn all I can about the Sound Bite. Especially since I’m hoping to feature it on our dental humor blog soon, to get more dentists moving in this direction.

    Thanks for honestly sharing your experiences in a fun read! It will help shape some of my opinions since I’m not ready to personally spend the six grand yet to get one to use for myself (!)

    1. johanna Post author

      Trish, I’m sorry for your hearing loss. I guess it’s good that it’s not total hearing loss.

      I love your blog! I laughed out loud!!

  4. Jany

    Hi Johanna,

    Thank you for your post, Its all wonderful you hear again. I am also having the same problem of hearing loss in one ear. I would like to go with Soundbite hearing device. I have few questions, I am glad if you could answer them. How much percentage of hearing has been replaced after started using Soundbite device? Do you still feel convenient after being used around a year? How is your experience in loud noisy situations for example in Bar’s and pubs? Is it possible to do phone conversations from bad ear, i mean simultaneously talking and listening? Your experience will help me to opt for Soundbite device, I am looking forward.

    Thank you!!

    Regards,
    Jany

    1. johanna Post author

      Hi Jany,

      When you get fitted for the SoundBite, the audiologist plays with the gain. She/he decides on the percentage of hearing. I estimate that I have about 50% of the hearing in my right ear with the SoundBite.

      It’s convenient when I use it in the gym for my trainer, or for my dance instructor. It’s not good in loud background noise environments. As with any hearing aid, it will increase all background noise. It has better signal/noise ratio that the Phonak, but it is still a hearing aid.

      I do not use a phone with my hearing aid ear. That never occurred to me to try.

      I remove the SB when I’m not out in public because of my vertigo.

      If you get one, let us all know how it works, okay?

  5. Rosie

    Hi Johanna,

    Happy for you that you’re having a positive experience with the Soundite system. I also suffer from SSD and I recently tried Soundbite but got so much feedback!! Feedback when I yawn, feedback when I laugh. I’m almost afraid to wear it out in public in case feedback noise draws crowds of attention. You mentioned you got feedback in the car. Can you give me examples of other instances where feedback occurred? I would like to know what to avoid when I’m out and about :)

    Regards,
    Rosie

    1. johanna Post author

      HI Rosie, do you suffer from feedback from both in-the-mouth pieces? If so, you should have the audiologist turn the gain down. At least try an experiment with one of them.

      I had feedback in my husband’s car when I yawned. It must be something to do with speakers/bluetooth, something like that.

      I don’t wear the SB when I give talks and use a microphone. First, because it changes the quality of my speech. Second, because I am sure we would have feedback. Otherwise, I wear it when I want to hear people, and I won’t be in a large crowd with a lot of background noise, and I won’t be eating. I can’t eat with it. It’s hard to believe, but my mouth is too small. For people who know me, this is a point of great humor.

  6. Becky

    Hi Johanna,
    I stumbled on your blog while I was searching for reviews on the Soundbite. I also have complete single-sided deafness (3 years now) and found that the Phonak Cross system did not work for me at all. I am wondering how you still like the Soundbite now that it’s been over a year since you posted here. It is not yet available in my country but it sounds like it will be in the near-ish future. I hope it is still working well for you, I would like to hear an update….especially as to how it works in noisy-ish environments — for example home dinner parties, live music etc…. thanks!

    Sincerely,
    Becky

    1. johanna Post author

      Hi Becky,
      I cannot eat while using the Soundbite, so I don’t use it at dinner parties. I find that in noisy environments, it works much better than my Phonak. I didn’t have the Cross, I had the micro-sense.

      I have had some other problems, so have not gone to the gym or dance class lately, so I have not used my Soundbite. I don’t use it at conferences, because it interferes with my speaking, and makes me dizzy after a long day. I have vertigo which is a “medical mystery.” We do not know why my brain has not adapted.

      However, I do like it. Hope this helps.

  7. David Collazos

    Hi Johanna,

    I am waiting for my soundbite to arrive in a few weeks. I found this blog searching for information about the Sounbite but I am more interested in your Vertigo situation. I also have had dizzyness and vertigo for 3 months (may 16th) when I lost my hearing in my right ear. I have been to 2 doctors who both say that the dizziness will get better. They said the brains will adapt. I cannot tell if I am getting less dizzy or just used to always being dizzy. I was wondering if your situation has gotten any better. I am sick of being dizzy all the time and It has only been 3 months. t sound like you have been dizzy much longer.

    Cordially,

    David Collazos

    1. johanna Post author

      HI David,

      My vertigo was caused by an inner ear hemorrhage. I have a page about this on the site, Intralabyrinthine Hemorrhage Information. It is very rare. Tens of us every year get one. Welcome to a rare and unique club. Sigh.

      On the Inside a Vertigo Attack page, other vertigo sufferers have chimed in with what they have done to manage their vertigo. I am going on 5 years. My anniversary is Sept 5, 2009. (You remember these things.)

      I am on powerful medication. If you can manage without the meds, do so. They have significant side effects. I drink more water than any human should. I have been playing “stump the neurologist” for the last year or so. I hope to have information soon about a better diagnosis.

      Your brain is supposed to adapt. Mine did not. I am a very special and unique individual. Can’t you tell?

      I hope that you are not as special and unique as I am!

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