The Strange and Scary Case of the Tip Fold-Over

My friend Matt Hayat, a science professor at Georgia State University, has a cochlear implant story that makes my “misadventures” look like a walk in the park with a birdsong soundtrack.

Here it is in his own words:

It has been hard to face an undeniable reality in this: hearing loss professionals have failed me. And I have paid a heavy price in my life as a result.

This will be a bit long. Let’s see if I can let this out.

I am having corrective surgery on 6th February 2019 to fix the implant in my left ear.

I was bilaterally implanted with AB implants in March 2016. I live in Atlanta and was implanted here. My hearing history up to that point: no hearing in my right ear for 40 years; a hearing aid in my left ear for 40 years that had severe to profound loss. Because of this hearing history, implanting my right ear was a gamble. And it was expected that implanting my left ear would give me my life back.

While I was in recovery from surgery, my surgeon sent me an email saying everything went extremely well and the implants went in smoothly. Three weeks later I was activated. At activation, I was then told that electrodes 15 and 16 in my left ear were not fully inserted. I was told this was not a big deal and not all the electrodes were needed.

When turned on, I immediately said that the sound in my left ear was broken, fractured. Not full. The sounds and information were chaotic and I could not make sense of what I was hearing. The two audiologists (an AB audiologist was also there to assist the audiologist with my activation) both said to me that I had unrealistic expectations, this was activation and it would take much time and I would need to be patient. I trusted them.

After three months and a number of mappings, I still had almost zero speech comprehension. An AB audiologist came back for another team mapping with my audiologist at the time. It didn’t help. I still was not able to understand speech. Oddly, from day one, music sounded good. I joked to friends that I wished I could just listen to music. Who needs speech?

So, my first audiologist did not want to listen to my feedback, and like a broken record, said I needed to stop complaining, realize I was unrealistic with my expectations, and needed to be patient. In 3 to 5 years I would hear well. So, I switched audiologists. On the first day, this new audiologist, she told me she was really surprised I was not doing better in my left ear. She made some huge changes to my maps on that first visit and I was able to understand a little speech.

I visited for mappings one to two times a month for the next few years. Yes, that often. Slowly slowly, I began to develop speech comprehension. My maps would change from session to session in some dramatic ways at times. I noted that no other CI user I talked to experienced it quite like this.
I experienced uncomfortable facial stimulation around 8-9 months after activation. My audiologist pushed me to see my surgeon. I made an appointment and visited for a check-up.

My surgeon, she talked to me for a while, explained facial stimulation can happen, sometimes because of the location of the facial nerve and its proximity to the electrodes, and to work with my audiologist to lower M-levels to work around it. And sent me on my way.

During my first two years, I participated in two research studies. I talked to one of the researchers about how much I was still struggling, 18 months in. He explained that it sounded like I hear fluctuating hearing thresholds. This is not very common but does happen.

After being told by many hearing professionals that this is how cochlear implant hearing works, and I just had unrealistic expectations and needed to be patient, and give myself three to five years to adjust, I went to work. I used Angel Sounds at different points. I worked my way into using audio books. I trained and pushed myself. You all know very well how exhausting that can be. I was exhausting myself.

I am a university professor. I usually teaching two courses each semester, am an investigator on more than a dozen health focused research projects, have half a dozen conference calls with research teams every week, and many in person team meetings as well. I don’t have time not to hear well. I just pushed myself so that I could keep up with it all in my daily life.

Between lip reading, paying attention, and improved understanding through pushing myself, I have been able to function well enough in my work setting to get by. It has been deeply exhausting, no doubt about it.

Socially, I had to sit myself down over the past few years and have a reality check with myself. I have not been able to function in noise. I know hearing in noise is always the hard one, but it was REALLY bad for me. In social situations with more than one person, I just cannot function normally, comfortably, or mingle without exhausting myself. I pushed myself to accept, Matt, this is how cochlear implant works. Yes, my left ear was supposed to be better. Crap happens. And hey, c’mon, I’ve worked with top notch hearing loss professionals and this is what they have told me. So I need to come to acceptance with this new life reality for myself.

Before losing my remaining hearing 3 years ago, my hearing loss was sometimes an impediment, but did not hold me back in my life. I did what I wanted to do and lived a more or less normal life in the hearing world. Funny, when I posted on Facebook on my page about losing my hearing and having cochlear implant surgery, a friend from graduate school wrote me and said “Oh wow, Matt, I forgot you had a hearing loss. I never paid attention to it or noticed.” It just wasn’t a big deal for me.

Over the past 3 years hearing loss has become a huge deal for me. Over the past year especially, I’ve been so tired and worn out. And have been withdrawing socially. It was too much work for me.

I began seeing a new audiologist a few months ago. She also expected I would be doing better in my left ear. It didn’t make sense. As some of you know, there is a research study being conducted at Vanderbilt University to image implanted ears in order to get a visual of electrode placement, and use this information with strategic mapping. She was able to include me as a human subject in that study.

I received a CT scan 4-5 weeks ago, on the morning of December 20th. The CT image showed a tip fold over in my left ear. A severe tip fold over.

Words cannot express how bad it is. Take a look at the picture. The first is a correctly placed electrode array. The second is an image of the implant in my left ear.

Since being implanted on March 8, 2016, I have worked with 6 audiologists, including an additional 2 AB audiologists; consulted with my surgeon after implant; and participated in 2 CI research studies.

Of course, in my shocked state, I begged for answers from hearing loss professionals and AB. How could this happen? How could this be missed? Why do the NRI readings all look fine and the software at mappings not indicate an issue? How can my audiogram show me at 20-30 dB across the frequency spectrum, even with this issue?

Best estimates suggest tip fold overs occur in about 2% of cases. It is rare. The only certain way to detect a tip fold over is with a CT scan. I have included a scientific paper for those interested who want to learn more about this. I had not had an image taken of my implant placement. There is no way for an audiologist to detect a tip fold over. Only an image will allow clear detection. I never even knew this could happen or what a fold over was until a month ago. So I never knew enough to ask for an image.

Established cochlear implant centers at academic medical centers such as Vanderbilt perform intraoperative CT scanning. The surgeon does not leave the OR until good placement is achieved. Some surgeons will take an x-ray in the OR. Few have CT imaging done after surgery. I am told the Vanderbilt CI group strongly advocates for CT imaging to check placement. I think this should become a new standard of care and hope that happens.

As a health scientist and educator, I wanted to be careful in sharing my story. I do not want to create a mad rush of CI users that are struggling in some way to run to their providers or company reps screaming concern about a tip fold over. This is not common. Of course, it may be something to consider and discuss with your healthcare provider if you are struggling. Just to be sure this possibility is at least discussed and ruled out.

An AB audiologist wrote me saying that my case is the first tip fold over she has seen in 14 years. This tells me that this is rare. At the same time, I also cannot help but wonder how many other cases are there out there in which this was not detected?

How does a tip fold over occur? The most likely cause is surgical technique. It is rare enough that it is difficult to study. It can happen and the surgeon cannot see that it does while/after inserting. Catching it intraoperatively is ideal, of course. This way, it can be addressed right then and there.

In the paper I included, the authors make a strong point about carefully considering new mapping strategies in the event of a tip fold over. Revision surgery may be avoided by turning off some electrodes and using mapping strategies. In my case, the placement is so bad that revision surgery is needed. But in other tip fold over cases, they have found that clever mapping strategies can get a patient to a good place without another surgery.

I feel like hearing loss professionals failed me over the past 3 years. I am lucky this was finally caught. If I did not luck out with being included as a research subject, I easily could have gone for many years like this, being told this is how cochlear implant hearing is. That’s still hard to digest.

I will have corrective surgery on Wednesday, February 6th. I’m not excited about another drug induced nap or more slicing on my head. Hopefully, better hearing ahead…. I’m too weary to get my hopes up. The past 3 years have taken their toll. We shall see!

For the past 5 weeks, since learning about this issue, I’ve really struggled to understand how placement was not questioned for 3 years by so many different hearing loss professionals. It is a paradox to me that this technology can be so amazing, and yet fail on this magnitude at the same time. I hope hearing loss professionals will seriously reflect on this paradox and consider carefully how to improve on this for future implant users.

Thank you all again. I’ll follow up after revision surgery to share how it goes…

If you have specific questions, please feel free to send me a private message on Facebook, or email me at martialsigning@gmail.com.