One month after activation and still no sound

[jahcpa]

I am the father of an adult CI recipient. My daughter, 42 years old, was born with a severe to profound sensorineural hearing loss in both ears. She has worn hearing aids since she was a baby. She had a cochlear implant done on her left ear in June. The surgeon, per our request, used  Med-el. She was activated on July 20. The activation did not go well. She experienced vibrations but no aha moment of hearing sounds. Now, one month later, she still does not hear anything from the implanted ear. It is only when she wears the hearing aid on the side that was not implanted that she can hear some sounds, and then only with the residual hearing from that ear.

 

This is the first Med-El mapping that her audiologist has ever done. Prior to this, she had only mapped Cochlear implants. She has been working closely with Med-El on the mapping procedure and as a matter of fact had two Med-El people present at activation. Is it possible that the audiologist's experience with the product is affecting the process?

 

My daughter went to see her surgeon and he said that the nerves are being stimulated for the first time in her life and that it will take a while for everything to work, eg. to hear sounds. Is that normal for an adult recipient who was born with a severe to profound hearing loss?

 

Any suggestions would be greatly appreciated.  

 

 

[jahcpa]

I am the father of an adult CI recipient. My daughter, 42 years old, was born with a severe to profound sensorineural hearing loss in both ears. She has worn hearing aids since she was a baby. She had a cochlear implant done on her left ear in June. The surgeon, per our request, used  Med-el. She was activated on July 20. The activation did not go well. She experienced vibrations but no aha moment of hearing sounds. Now, one month later, she still does not hear anything from the implanted ear. It is only when she wears the hearing aid on the side that was not implanted that she can hear some sounds, and then only with the residual hearing from that ear.

 

This is the first Med-El mapping that her audiologist has ever done. Prior to this, she had only mapped Cochlear implants. She has been working closely with Med-El on the mapping procedure and as a matter of fact had two Med-El people present at activation. Is it possible that the audiologist's experience with the product is affecting the process?

 

My daughter went to see her surgeon and he said that the nerves are being stimulated for the first time in her life and that it will take a while for everything to work, eg. to hear sounds. Is that normal for an adult recipient who was born with a severe to profound hearing loss?

 

Any suggestions would be greatly appreciated.  

 

 

[Mary Beth]

Hello and welcome,

Prior to the CI surgery, what could she hear in that ear with a HA on?

Mary Beth

[Mary Beth]

This looks like it is posted in two places.

[Ivana Marinac]

Hello Jahcpa,

Welcome to the Hearpeers - where are you from?

Have you spoken with Med-El representative?

During the surgery, did surgeon do, so called telemetry? This is the only objective method to test patient's nerve response to implant's electrodes.

[jahcpa]

This looks like it is posted in two places.

Yes, posted it twice by mistake.....my first posting

[jahcpa]

Hello and welcome,

Prior to the CI surgery, what could she hear in that ear with a HA on?

Mary Beth

I do not have the audiogram, but I do know that the unaided hearing in both ears was profound. HA's brought it up somewhat but still severe to profound. 

[jahcpa]

Hello Jahcpa,

Welcome to the Hearpeers - where are you from?

Have you spoken with Med-El representative?

During the surgery, did surgeon do, so called telemetry? This is the only objective method to test patient's nerve response to implant's electrodes.

Daughter lives in Jupiter Florida. She has not spoken to Med-El representative. Will find out about telemetry.

[Mary Beth]

It's good that MedEl reps were at the activation. If one of the MedEl reps was the MedEl audiologist that works with our audiologists, then you can be comforted in knowing that her audiologist had guidance. Those MedEl audiologists can attend other MAPping appointments as well. That's an option for your daughter.

[Mary Beth]

No problem. Just letting other members know to look for the active thread.

[jahcpa]

It's good that MedEl reps were at the activation. If one of the MedEl reps was the MedEl audiologist that works with our audiologists, then you can be comforted in knowing that her audiologist had guidance. Those MedEl audiologists can attend other MAPping appointments as well. That's an option for your daughter.

But it is reasonable to expect that a month after activation she still cannot hear with the implant? Is that within normal expectations?  

[Lenny]

Is it possible that the audiologist's experience with the product is affecting the process?

 

Hi jahcpa,

 

During the early mapping sessions, the audiologist will stimulate each electrode independently and adjust the volume. This isn't a very complicated procedure and from what I've seen the real experience of the audiologist comes later when tuning the processor and evaluating the situation based on user feedback. So I doubt the audiologist will be doing anything wrong at this stage. Especially with the Med-el people on hand to help.

 

I am wondering though, did your daughter hear the beeping sounds of each electrode during the mapping? 

[Ivana Marinac]

Daughter lives in Jupiter Florida. She has not spoken to Med-El representative. Will find out about telemetry.

Jahcpa,

Telemetry is the most objective method to evaluate how your's daughter's nerve responds to the stimulation with an electrode.

[jahcpa]

Hi jahcpa,

 

During the early mapping sessions, the audiologist will stimulate each electrode independently and adjust the volume. This isn't a very complicated procedure and from what I've seen the real experience of the audiologist comes later when tuning the processor and evaluating the situation based on user feedback. So I doubt the audiologist will be doing anything wrong at this stage. Especially with the Med-el people on hand to help.

 

I am wondering though, did your daughter hear the beeping sounds of each electrode during the mapping? 

 

Just heard from my daughter. In today's mapping session, she heard beeps as electrodes were stimulated. Apparently she was extremely sensitive to stimulation at the initial activation and so audiologist has kept volume low. Volume will be raised gradually over time. Sounds like she's on the right track. It's just going to take longer than originally thought. I want to thank all who have commented on this thread. If there are more questions, I know where to come. 

[Mary Beth]

That's great news!

[Ivana Marinac]

Excellent news - this is a well known technique mostly used with children in order not to frighten them.

Good luck further and keep us informed!

[Adam]

Glad things are moving in the right direction

[Sandy]

When I was activated 2 years ago, I was very sensitive to sounds. It has taken two years to get to the place I'm now at. My daily mantra has been the 3Ps, and the support of the great people on this forum, my audiologist and friends and family. I had never heard high pitched sounds before but over time, your daughter will have many "WOW" moments. Now, I very rarely ask people to repeat what they said. Keep us informed of her progress and ask as many questions as you like.

[Adam]

sandy, I was the same with mainly the high pitches. I actually had my Audie turn off electrode 12 for a little while. Unloading silverware and plates from the dishwasher was unbearable. It took a few months before #12 was up to speed with the others

[RachelM]

When I was first activated the implant did not work! At all. I did not hear the beeps, I got nothing. I was devastated. I got all the lip service of "your brain has not heard sound in a so long (a few months in my case) and "have patience"  or "these things take time." There was so indication on the audiologists end that everything was not working just fine.

 

If I had not been a person with hearing up until a few months before this, I probably would have accepted this. But I had nothing to lose and I was very firm that this was not a lack of my brain knowing what to do with the signal, there was so signal. I was right, the thing never actually connected. I was finally activated the next day.

 

It is hard to relay the experience of a sense to another person, and my main frustration in this process has been trying to get my team of audiologists and therapists to understand and trust my experience. When I am experiencing something that seems off, I feel like the first line of attack seems to be told that I need time to adjust. I know I need time to adjust, but time marches on, and will inevitably happen. In the meantime, I would like the try technical adjustments. This has all been with at Johns Hopkins hospital, so its not as if they are inexperienced. 

 

Everyone gives so much lip service to the three Ps, but I would like to add piece of advice. Advocate for yourself! No one knows what is going on in your daughters head but her. If she says she is not hearing anything, she is not hearing anything. Maybe she needed more juice, maybe it was not connecting. I have no clue what happened technically, but dont let the audiologist discount her experience. 

 

I have been activated for four months, and I have already added two additional mapping sessions to my course. I survived going deaf and becoming a cyborg, being a pushy patient seems to be to the only rational response to this.

[hadron]

Hi Rachel,

Good to see some new members with good real world advice.

The CI program at Johns Hopkins has been adjusting since Dr. Niparko left a couple of years ago for USC. He is considered one of the best CI surgeons so the program took a hit.

Courtney Carver, one of the audiologists, published a lot of papers with Niparko and is still there. She appears to be very bright and patient focused. Have you been seen by her?

[RachelM]

My Hopkins surgeon (Dr. Francis) was beyond amazing! I can hear the full range of tones, I can differentiate half notes, and I have not yet found any gaps in my sound detection - so it seems his placement of the electrodes was perfect, He also has brilliant bedside manner. 

 

It is the audiologists that seem to flailing a bit - granted I am not going to the main campus for my frequent mappings. I did have a very long assessment from Courtney a month after my activation and she was very nice and seemed thorough. I just get the impression that since my hearing loss and implant progress is not following the normal path (according to the surgeon), that the audiologists are at a bit of a loss in what to do with me. I just keep getting told to stick with it. Well thats not so helpful.

 

I am getting assessed for auditory rehab at Gallaudet on Friday (an appointment that took months to get) so hopefully I will get what I am looking for there. I am nitpicking because it is my hearing. I will exhaust every resource available in trying to get the most out of the implant.

 

Does anyone know why adult rehab is not standard? People seem very surprised when I started pushing for it.

 

Thanks,

[Mary Beth]

Rachel,

I'm not sure if you had a CT scan prior to CI surgery, but if you did......check out the image guided mapping research being done at Vanderbilt. They are designing a way to visually see which electrodes stimulate which frequencies and where things overlap causing problems in sound quality.

I am interested in that research. It seems fascinating to me. However, I have not had CT scans prior to implantation and I am fortunate that I have an amazing audiologist to work with. She is doing a great job and she is always respectful and interested in my feedback on how things sound.

What sound problems are you trying to fix?

Mary Beth

[Ivana Marinac]

Of course, but the last one can go under perseverance.

[RachelM]

Mary Beth - I did have a CT Scan before surgery. I read a bit about the Vanderbilt studies before my surgery, but without any CI experience it did not mean much to me. I will go look into this again - thanks for the advice.