Monday, August 1, 2016

Hearing Gained - Part 2: Explaining the Selection Between Ponto and BAHA

I had a question asked about how I picked between the BAHA 5 and the Ponto Plus Power.  I did a lot of reading and talking with other users online.

This is what I came up with.  While I talked about it briefly in another post, this is more of a longform discussion of my thoughts on the subject.  Of course this is all my subjective opinion and both products are very good.  I think that I would be quite satisfied with either device.


Sunday, July 31, 2016

Hearing Gained - Part 1: Got the Device!

Last Tuesday was the culmination of a year and a half ordeal.  I had an appointment to get fitted for the Oticon Ponto Plus Power.

My hearing loss isn't quite total but it is pretty bad.  Without the device, if I plug my good ear, I can't carry on a conversation with someone even in a quiet office. I snapped the Ponto onto the abutment (end of the screw) and it worked!  I plugged my good ear again and could talk with the Audi very easily just using the device.

The key part is that it works well.  The Ponto isn't a "night and day" difference for me like it is for someone that has lived without any hearing at all.  At times, it seems like it is hard to notice - it just works.  

The Audi programmed it for my hearing loss. In about an hour she showed me the operation of the device and fine tuned the programming.  We also went over a long list of questions and she patiently went through everything.  

The next day I had student meetings and class.  It was a real joy to not need to pick a particular seating arrangement or be constantly turning my head to point my good ear at the speaker.  I could tell a big difference in the ability to hear what was happening.  The class was filled with student presentations and again, it was just nice to be able to hear them clearly.  

Thursday and Friday were a short little family vacation to the Oregon Coast.  We stayed with another family in a rented house on Promenade at Seaside, Oregon just 100 feet from the ocean. Coincidentally the mother of the family that we stayed with also has single sided deafness.  She lost her hearing due to an ear infection.  

Oticon provides new Ponto recipients with a rod that can be used for people to try the device without surgery.  She tried my Ponto and was surprised with how well it worked for her.  

On the other hand, her father-in-law tried it and didn't find it helpful.  He has more traditional age related hearing loss so there isn't a health cochlea to receive the "good vibrations" (with all due respect to the Beach Boys!)

The osseointegration (bonding of bone to the Titanium screw) seems to have gone very well - it felt solid after just four weeks.  The healing of the skin around the screw hasn't been quite as smooth.  It still has some periodic redness and an occasional spot of blood.  No sign of infection and it doesn't hurt.  I hope it clears up before my next followup with the surgeon and the audiologist in four more weeks.  

In summary, I'm quite satisfied with the result.  If I had everything to do over, I would still do it - the only question is whether I would have spent a year trying to get insurance approval for the cochlear implant option.  

Sunday, July 17, 2016

Hearing Loss - Part 5: Osseointegration

I have finished the second week of my four week recovery and things are going well.

The healing cap fell off 4 days after surgery.  My wife started applying Neosporin cream twice a day to prevent infection.  Six days after surgery, I had a followup with the surgeon.  He said it was healing well but recommended switching to an ointment to keep the wound moist and promote healing.

After the meeting, I scheduled another followup with the surgeon for week 3 and a time with an audiologist for week 4 to get the device.  This is the point where I get actual start to get some benefit. Until then, I'm just walking around with a useless screw in my head.

Okay, the rest of today's post is more about the nuts and bolts (so to speak) of recovery.  The result is that it might not be of much interest to anyone other than those seriously considering the procedure. Read on at your own risk (of boredom.)

Sunday, July 3, 2016

Hearing Loss - Part 4: Surgery!

I kept Thursday, June 30th blocked on my calendar even though surgery wasn't until 2 PM.

I showed up at noon for check-in.  They asked to confirm that I was getting surgery for the right ear (side). I said no, it was for the left. They asked "Are you sure?" Yes, I have SSD and I know which side is bad.

Even though they "fixed" it in the computer, it popped up two more times including even how they initially set up the operating room. They ended up needing to do more paperwork and the result is that it probably added an hour or two to my time in the hospital. Even the wrong processor was ordered but I have plenty of time to get the correct one.

Surgery went well but it could have been tragic. Not as bad as the cases like the wrong kidney removed or limb amputated but still very bad. Just a reminder to make it very, very clear which side to be operated on.  Just a reminder that the old advice about marking "not on this side" is still valid before going into surgery.
Lesson Learned:  Triple check which side is ordered

The surgery went well.  I had asked the surgeon if he used the minimally invasive surgery procedure and he said that yes, he used a punch biopsy.  While true that he used a minimally invasive surgical procedure, I had the impression he was using the full "Minimally Invasive Ponto Surgery" procedure developed by Oticon.  My hearing being bad, I couldn't tell the difference between the capitalized "Minimally Invasive" and the lower case "minimally invasive."

He has a lot of experience and confidence with Oticon abutments and says that he has never had a rejected abutment though.  I would really have liked the potential of doing it under local anesthesia instead of general anesthesia. It would have been a lot less expensive for the insurance company and quicker. Essentially, he does a minimally invasive procedure but not
Lesson Learned:  Ask details about the surgical procedure to be done.

Even with nursing shift changes and the complications of having the wrong side listed to operated on, I was on my way home five and a half hours after first arriving.  The anesthesiologist seemed to do very well.  The only pain that felt was the prick of local anesthesia and a sore throat when eating for the following 24 hours.

All in all, it it continues to feel painfree.  I never needed to take a pain reliever after surgery.  Okay, I took a Tylenol before dinner on Saturday night because we were going out for a fancy dinner and I didn't want to have any linger effects from the breathing tube affecting a nice steak dinner.  The Tylenol was probably unnecessary but I just wanted to be safe.

There was a little bit of minor bleeding on Friday and Saturday.  On Saturday night, the protective cap fell off my ear.  Now the screw head was visible.  It was hard to see under my hair.  I was surprised that he didn't cut more hair back for surgery.

I have a followup with the surgeon on Wednesday to inspect the site.  My wife is applying Neosporin to the site twice a day to keep risk of infection down.

Now I'm eagerly anticipating August when the titanium screw (abutment) will have fused with bone securely.  That is when I get to snap on the processor and start hearing better on my left side.



Hearing Loss - Part 3: Back to the Beginning

A year after the originally planned surgery for a bone conduction hearing aid, I was right back at the beginning.  I did have in hand now opinions from several neuro-otologists, i.e. doctors specializing in hearing related surgeries, saying that the cochlear implant was the preferred option but the bone conduction hearing aid would be a good option.  In all, I had opinions from four experts and four different audiograms testing my hearing.  Everyone was in agreement that my left ear would never get better, a hear aid was useless for me, and that the bone conduction hearing aid would be a good choice, if not the best choice.
Lesson Learned:  Get multiple opinions. 

I decided to take the plunge.  I returned to the clinic that I was originally scheduled to have the procedure.  The doctor that I met with before had left the practice but the clinic's founder was still there and he had worked with the prestigious House Ear Clinic in Los Angeles.  I had another audiogram done and met with him.  It went well and we scheduled a surgery date to have the same Oticon Ponto Plus Power implanted that was planned last year.

The device selection was much easier than for the cochlear implant.  In this case, there were only two companies offering products:  Oticon and Cochlear Corporation.  While Cochlear's Baha 5 was the newest product on the market, it was ten dB (or 10 times) less powerful than Oticon's Power model.  The higher power products from Cochlear were all based on very old electronics and software so they were not very competitive.

Nothing has been easy or quick in this process so far.  A couple of days after this meeting, Cochlear Corporation announced that they had a new Baha 5 Power that would be available soon.  This was a higher power version of the Baha 5 introduced a year and a half earlier.  I was eager to get closure on this lengthy process, perhaps almost as much as anyone making this far reading this journal.  Still, I didn't want to undergo surgery to have the implant done without considering all the options.

I contacted Cochlear Corporation and asked if there was any way to try a Baha 5 Power.  Their customer engagement specialist was able to arrange for me to try it for a full weekend.  Hats off to Cochlear for their customer responsiveness.  I was amazed that they were willing to let me borrow their brand new product, worth about $6000 for the weekend, a week or two before they would even get a chance to show it off to the audiologists!

I delayed the surgery two more weeks to accommodate the test period with the device and meet with another audiologist at a different clinic.

The test period went well.  This was the first time even getting to hold a Baha device.  Again, I was pleased with the audio quality but it just didn't seem to jump out at me.  I think it was not "mapped" to my hearing loss well and was even for the wrong ear so it might have been further misconfigured. Still, it reminded me that the bone conduction technology was a viable solution.

Baha's device is designed around connecting directly with iPhone's using Bluetooth Low Energy model.  This offers a great set of capabilities but unfortunately recent iOS updates seem to have made the pairing very unreliable.  Reading through app store reviews and forum comments, people seemed to have unresolved problems.  I had a connection working for about four minutes in six hours of trying.  Perhaps an iOS update would fix the problem but it was also possible that Apple's efforts to secure Bluetooth would leave it never working correctly, even with the brand new Baha 5 Power.  The result is that Bluetooth being built into the processor should be a huge advantage of the Baha over the Oticon Ponto models, it doesn't help at if it doesn't work reliably.  Also, I'm currently using an Android so while I tested with an old iPhone, I would be effectively locking myself into a Apple.

The Baha 5 Power demo was configured with a metal band instead of the soft elastic headband.  The metal band pressed so tight it became painful after only a couple of hours.  If I had not used the elastic headband before, I might have blamed the bone conduction system.  As it was, I knew not to blame the Baha for the headband.
Lesson Learned:  Test bone conduction devices with a headband.  Preferably for at least a weekend but two weeks would be better.

The Oticon Pontos seem to be more resistant to the whistling of feedback.  This was important to me but noticeable even to family members.

In terms of sound quality, it is hard to judge.  The latest audiologist I met with let me demo for a short time both a Baha 5 and an Oticon Ponto Plus mapped for my hearing loss.  She said the power was unnecessary and she was the only one that said the non-power would be preferred over the power for me.  I still took advantage of trying to try them both side by side for an hour.  The sound was different but similar in overall quality between the Baha and the Oticon.  They did seem softer though, probably because of not having enough power.  I think that she just looked at my low and mid range frequency losses and was using the processor to provide better hearing to that side rather than blasting the power strong enough to be picked up by the good ear.

Lesson Learned:  Make sure that the device is mapped to your hearing. 
Lesson Learned:  If possible, try competing products side by side. 

Both of the audiologists that I talked with had more frequent and positive experiences with the Oticon Ponto devices.

In the end, I looked at all the options.  I ended up sticking with the Oticon Ponto Plus Power for the following reasons:
  • Better resistance to feedback
  • Mature product
  • Equal support of both Apple & Android
  • Higher clinic familiarity
  • Seemingly better waterproofness (Baha doesn't have IP ratings but claims to be similar)
  • "Universal" abutment - a Baha can be installed on an Oticon screw but Cochlear redesigned their abutment so that Oticon's devices can no longer attach.  
The Cochlear Baha 5 Power has a lot going for it as well including:
  • Slightly smaller size
  • Option of the magnetic attachment under the skin - it is not too hard to switch from the abutment sticking through the skin to a magnet under the skin or the reverse
  • Bluetooth built into the device for use with iPhones (if they can get it working!)
  • Newer electronics and software-presumably 1.5 years of advancement should have some benefit
  • Company responsiveness - I was really impressed with my interactions with the company
In the end, I went back and forth between the two products.  I kept hoping that Cochlear could announce that the iPhone connection problem was fixed or at least diagnosed.  Alas, FDA regulations make it very hard for companies to say anything.  While Oticon's phone connection system is more clunky with a second device on a neck loop involved, it seems to work more reliably.

A week before surgery, I told the clinic to keep the order of the Oticon Ponto Plus Power.  I was now set with a device on order and a surgery date of June 30th!  It was a relief to be done with the decisions.


Hearing Loss - Part 2: A Second Option

Despite being approved for the bone conduction hearing aid, I put a halt on that to .  This helps eliminate the headshadow and might reduce the tinnitus some but it won't help with stereo location and is less likely to help with tinnitus.

I made an appointment with the neuro-otologist that has done cochlear implant surgeries for people with unilateral hearing loss in May 2014.  He has been able to get insurance approval in the past for this a few times.  He said that if he had my hearing loss, he would get a cochlear implant under the one condition that insurance paid for it.

The doctor wanted to have a couple audiologist appointments before submitting the surgery order. The clinic had scheduling problems and it took until October to get the second meeting done.  This second meeting was to choose which of the three cochlear implant makers to use.  Each of these three products are quite different.

Selecting a cochlear implant is an important decision.  Since the internal implant has an electrode threaded through the cochlea - the plan is for it to be permanent and the implant only works with external components from the same company. Effectively it is a lifelong decision of getting locked into a company.  Think of it as picking a smartphone platform of Apple, Android, or Windows Phone except:
  • you don't get to try the smartphone first since the only way to try a cochlear implant is to have it implanted,
  • you've never even used a smartphone before so you don't even know what to look for in a cochlear implant, and
  • you never get to change your mind, even after a two year contract is over.

This makes for an interesting decision problem.  I picked the Med-El cochlear implant but since the hardware is not actually ordered until shortly before surgery, I filed away that it would be worth taking another look at after getting insurance approval.

Lesson Learned:  Take the device selection decision seriously but there is time to change your mind since they won't order it before insurance approves of surgery.

Two weeks after the doctor's order was submitted, insurance sent their rejection.  While cochlear implants are covered for people with hearing loss in both ears, the insurance company simply cited the page of the policy indicating that cochlear implants are not covered for single sided deafness.  I knew it wasn't going to be easy getting approved so I was expecting the first rejection.

A few weeks later, the doctor sent an appeal which was also rejected two weeks later.  This was disappointing but I took the opportunity to write a research paper with a student on deciding between cochlear implants.  The paper was accepted for the PICMET conference.  I'll give away the punchline-after looking at all the factors carefully, I changed the device to be implanted from Med-El to Advanced Bionics.

Lesson Learned:  Carefully weigh the options for which cochlear implant to pick.   

The next step was a patient appeal.  I had read through the academic literature earlier which made a compelling case for the cochlear implant as the best treatment option.  I organized this and cited the literature in my three page patient appeal.  That too was rejected.

The next stage was a second level patient appeal to the insurance panel.  I prepared a stronger argument than my first appeal and included updated references.  After submitting it, they said that I could present it in person to the panel if I wanted to do so.  As a professor, I'm used to presenting technical material so I decided to make the presentation.  Besides, it is very much in line with the kind of research that we do it in the Engineering and Technology Management Department at Portland State University.

The day before the panel presentation, I had an appointment at Costco's hearing center for a hearing test.  It had been about 9 months since my last audiogram and I wanted to see how it had changed.  They offer free tests and will also let you test a hearing aid while in the store.  The answer was my hearing had stayed stable and I walked around a store with their most powerful hearing aid for an hour.  The hearing aid did me no good.  While their audiology practice may not measure up to the level of expertise that I saw elsewhere, the price (free!) was right and the timing was quick.

Lesson Learned:  A visit to Costco could be a good way to get second, a third, or fourth opinion as the case may be.  

I put together a PowerPoint presentation, brought copies of the printouts, and some copies of the relevant literature to the meeting.  The meeting went very well.  They asked questions that I was thoroughly prepared for - it felt like a really well prepared research presentation where the presenter knows the material so well they are eager for any kind of hard question.

After the panel presentation, one of the people said it was the best prepared appeal he had ever seen. Alas, he didn't have a vote and it too received a rejection.

While I was convinced it was the best option, it was clear that insurance wasn't going to approve it. At this point, it was more than a year after my originally scheduled surgery.  After giving it a lot of thought and reviewing the insurance documents yet again, I decided to go back to the original plan of a bone conduction hearing aid.  A full year later and I was back in the same position but at least I had given it a try and had a paper published.

Hearing Loss - Part 1: The Beginning

I was sitting at my desk about a dozen years ago when my phone rang.  I picked it up and heard a strange robotic voice on the other end.  I could make out the words but not recognize the voice.  It sounded like a bad voice synthesizer from 1980s.  I switched the phone to my right ear and then heard my wife.

This made it clear that I was having a hearing problem with my left ear.  Two hearing tests and an MRI later, the Ear Nose and Throat (ENT) specialist said that it was an unexplained hearing loss with no potential for getting better.  He said to monitor it and check back if it got worse.

For the next decade, I just dealt with the hearing loss and tinnitus.  I have one ear with excellent hearing and coped with it reasonably well.  

Last year I noticed that I was having to ask people far too often to repeat themselves and decided to have it checked again.  My bad ear had gone downhill.  Now I couldn't even make out words.  The audiologist said that I had profound hearing loss in the bad ear.  The ENT said the most powerful hearing aid available would not be of any help with my poor word recognition scores.  He referred me to another specialist.  

The neuro-ototologist looked over everything and said that the best option for me would a cochlear implant.  Unfortunately, the FDA hasn't approved cochlear implants for single-sided deafness.  In Europe, it is approved and commonly done but since the FDA hasn't approved it, insurance wouldn't cover it.  Instead he recommended a bone conduction hearing aid.  

I had never heard of a bone conduction hearing aid before.  The principle is actually quite simple.  A small device that looks like a traditional hearing aid gets the sound signal and then vibrates the bone to send the sound signal to the cochlea.  For people with problems in their outer ear, the vibration can go to the same side.  In my case, it would vibrate the whole skull to send the signal across to the good ear where it would be fused with the hearing from my good ear.  It would mean living in a monaural world but I'm already doing that.  Still it, sounded hard to believe that it would actually work.  

The clinic loaned me a device for two weekends on a headband.   I even wore it to class to hear my students' final project presentations.  It looked a little funny with a headband but I explained that it was all the better to hear them with.  I was surprised how well it worked - especially given that it was only a demonstration.  The headband is generally only used for small children and demonstration purposes.  The processor snaps on to a hard piece of plastic on the headband and pushes on the skull. It has to go through skin and hair which cuts into the signal quality - especially at the higher frequency but it still worked pretty well.  I could carry on conversations with my good ear plugged and listen to music.  I was really shocked at how well it worked.  

Rather than using a headband, the signal quality is improved in the "permanent" installation by going straight to the skull bone.  This is done by implanting a titanium screw called an abutment into the skull.  The processor then snaps right on to end of the abutment.  This seems quite dramatic but is similar technology to having a pin inserted in a broken bone or a fake tooth in the jaw.   The big difference is the screw is visible and exposed to the outside world.  Unfortunately infection and skin irritation is a possible longterm issue.  

Given that the system worked pretty well for me on a headband and that I was testing an older generation product, the Oticon Ponto Pro Power, I had confidence that the newer Oticon Ponto Plus Power with a direct connection would work even better.

A competitor, Cochlear, had a product called the Baha that worked the same way.  Their model had the advantage of allowing a magnetic connection between the processor on the outside of the skin and the bone implant device on the inside.  The vibration would still be made across the skin.  The ENT said that they had poor success with the magnetic system and the idea of the skin being sandwiched between the magnets to be vibrated did not sound good.  Comments from users and research papers seemed to be equally mixed. 

I agreed to use the Oticon Ponto Plus Power.  The doctor wrote his order and it was approved by insurance in a couple of days.  I was all scheduled to have the surgery done in April of 2015!  Of course I continued doing research on options, trying to get additional input before literally having a screw put in my head.  

I lucked into word that a doctor at a nearby research university had done cochlear implants for single-sided deafness.  If this really was the best option - I wanted to explore it before having surgery done. I put a hold on the surgery in order to investigate this option.  This led to a year long search process...