UK: advised not to have CI as 24 years deaf...!

[TabithaRose]

Hi everyone!

I am a 26y old living in the UK, having been profoundly deaf in my right ear since I was 18 months due to meningitis. I have never had any corrective/treatment tech for my hearing but recently have become aware of CI implants for SSD. This isn't offered on the NHS but I am lucky enough to have private insurance so went to an implant specialist recently. He advised me that because the duration of deafness in my right was over 10 years that a CI wasn't a good idea and so I should explore CROS hearing aids or a BAHA.

I have seen some posts on this forum where people have had CIs with deafness >10 years, but wanted to know anyone's experience, particularly if they have had a CI implanted in the UK.

Maybe this is a long shot but I had been so excited about the CI that I wasn't really prepared for the letdown from the consultant and have been quite sad about this for the past few days - maybe it isn't suitable but would like to know others' experiences, just in case. 

Thank you!

[John F]

While I’m not a doctor, I think the longer the ear is inactive the tougher it can be to make use of a CI and there may be issues with your cochlea itself.  Oftentimes if somebody hasn’t worn a HA in their worse ear in a while, it’s advisable to wear one to ‘wake’ it up.  You could consider a 2nd opinion if that’s a thing in the UK but also do look into a Samba if going the MedEl route or BAHA if going the Cochlear route.  

[Mary Beth]

My hearing story differs from yours in two important ways.  First I had hearing in my right ear for many years before losing it entirely after a surgery for Ménière’s disease.  Second I did not have meningitis.  Meningitis can calcify a cochlea quickly which is why CI surgery is typically performed very quickly.

That being said, my right ear did not process any sound for 24 years following that surgery.  It was implanted 24 years after being completely deaf with no hearing aid.  And it is an amazing CI ear.  Aural rehab after activation helped a lot.

In the US now that CI for single sided deaf people is covered by many insurance plans, people are implanting ears that have been deaf and unaided for decades.  If you search for single sided deaf and cochlear implant, you may come across their stories.

I do know someone who did become deaf from meningitis and the CI surgery happened many years later.  She is a great CI user.  So for some people, meningitis and long standing deafness do not rule out success with a CI.

Wishing you the best!

[Tim]

@TabithaRose You got great suggestions already but I'll chime in as an SSD person.  I got my implant about 16 years after the initial onset of gradual hearing loss on my left ear.  Mine was idiopathic (no known cause), and after a while (~8 years?) got bad enough that two surgeons both recommended CIs.  It wasn't approved and I used a BAHA like device.  I had too much sensorineural hearing loss for it to use my bad side and was relying on routing it over to my good cochlea.  The result is that it eliminated the head shadow of missing sounds from my bad side but didn't give any of the benefits of stereo hearing.  (Spatial awareness, filtering out noise, etc.)

Used it for about 6 years off and on, especially off during Covid times as it didn't help me at all for work from home.

Coming out of Covid, I knew I needed something better and I had seen that bone conduction options had improved with better electronics and better under the skin options so I went back to have things checked out.  Found out CI was now approved in US for SSD and went down that path. 

I wish that bone conduction had worked for me and it was worth a try.  The new under the skin options for bone conduction are interesting if they deem that they would work for you. 

You might be able to do various "hacks" to experiment with bone  conduction in advance. 

For example, you could get cheap bone conduction headphones and then adjust the audio volume to send everything to your bad side, nothing to your good side. If you don't need high volume, then maybe your bad side cochlea is still able to get some signal and you might get more of a stereo effect/benefit than I got. Not a perfect test but easy and cheap to do.  In any case, as an SSD person, I liked using bone conduction headphones because I did not like anything in my one good ear.  Whether it was an earpiece or holding up a phone to that ear as it left me feeling more "vulnerable" or cutoff from the environment.

Another benefit to the bone conduction or similar technology is that it much less invasive, leaving the option open for future treatment alternatives.  In my case, I still have the screw from the bone conduction in the skull but under the skin.  It didn't keep me from getting the later CI.

As to the issue of the 26 years, I got my CI about 17 years after first noticing the start of hearing loss on that side.  I am getting good benefit from it and am happy with my progress.  Glad that I did it.  My benefits as an SSD person are not that the hearing is better than my good ear.  Even 14 months later, BT phone calls to my CI directly are hard and I much prefer using my good ear/speakerphone.  The most significant benefits for me are:

• No headshadow
• Near elimination of tinnitus
• Able to identify and focus in on individual speakers
• Able to filter out background noise

More could be said on details of all of the above but I'm probably pretty typical.  Some SSD CI people are ahead of me and some are behind me in terms of benefit.  I'm continuing to slowly advance and perhaps someday, my good ear will have enough age-related hearing loss to make my CI side the "new good side".

Alas, my situation is quite a bit different as I was late deafened on that side, loss was gradual rather than sudden, and no ossification of the cochlea.

The first steps on the hearing recovery journey can take the most patience, determination, and self-advocacy. 

Best of luck and feel free to ask questions if I can be of any help.  (I too have no medical training so take anything I say with a grain of salt.)

 

[marafish]

Everyone's story is different. I had a sudden hearing loss in my right ear over 15  years ago. I tried BI-CROS hearing aids twice. The first was a complete disaster because of a manufacturer defect in the microphone for the device in the right ear. It took many months for the manufacturer to acknowledge the issue. My second BI-CROS was more successful but I gave it up when my right ear was implanted with the CI earlier this year. While I am still learning to understand speech (and music), I could hear sounds in the right ear immediately after activation. Those sounds included bird songs, and environmental sounds such as the microwave, toaster oven, electric kettle, and car turn signal. 

[Eric in Tulsa]

On 4/26/2024 at 11:05 AM, Tim said:

Tabitha,

My story has some similarities, but also some differences. I lost the hearing in my left ear 27 years ago after having perfect hearing for 43 years. When I went to the Audiologist, they said I qualified for an CI and set up the interview with the surgeon. The surgeon walked into the room, greeted me and my wife and then said he would not implant a CI in my ear due to how long the loss had been, and due to my age (70). I felt like the floor had been pulled from under my feet. 
A couple of years later and a different audiologist, and once again they recommended I get a CI. I told her of my previous rejection and explained my reluctance to go through that roller coaster ride again. She was very persuasive and assured me this doctor would not be biased due to my age. So I agreed. 
The second doctor agreed to implant the CI, but this time, Medicare would not approve. The doctor said that he could implant a bone conduction hearing aid, and that he had a lot of positive feedback on those he had already done. He put a demo unit on my head and I was amazed at how clear everything was from my deaf side. Of course it was all coming in on the right ear, but I was hearing it, which was a vast improvement over how I had been living. 
That was not quite a year ago. I had the surgery, and have been using the bone conduction hearing aid since December 2023. Looking back, I think perhaps the CI might not have been the best choice for me, and the bone conduction aid is exactly what I needed. 
I don’t know what your best course of action is, but there is a path that can help you. 
 

[Landsunwater]

Hi, I’m adding my story because I totally understand how discouraging an appointment like that can be.  I lost hearing in my right ear from an infection at the age of 7.  50 years later, when I was struggling with hearing loss on the left side, my new ENT referred me to a surgeon to discuss possibility of CI surgery.  He had a positive attitude about performing CI surgery saying we had nothing to lose by trying but I did not qualify yet so he referred me to his audiologist for non-surgical solution of CROS hearing aid.  CROS, unsurprisingly, did not work for me and poor audiologist programming was only part of the problem.  It is also possible that trying a non-surgical solution may have been required by my USA insurance company.  Several months later I did qualify for CI.  I was hesitant to return to the same surgeon after the poor audiologist experience so I consulted another surgeon.  The second surgeon’s first question was “which ear did I want the CI?” because I qualified on both sides.  When I told him the right side he was very reluctant to do the surgery due to the long term deafness.  He even said most doctors would not touch that side but I was not ready to lose all hearing by doing surgery on the left.  I returned to the first surgeon with understanding that I would use my own audiologist and had the surgery last July.  Eight weeks after activation I heard sound from the right side for the first time in over 50 years.  The first 8 weeks I felt vibrations of sound.  Hearing with the CI continues to improve with lots of therapy effort and I am not done yet.  I am fortunate to have found a surgeon willing to make the effort even though there were no guarantees of success.  Everybody’s situation is different but my advice is keep all options open and don’t give up based on one surgeon’s or audiologist’s opinion.  I heard “there’s nothing I can do for you” for so many years but one day someone said differently and it changed my life.  Good luck with your journey..