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Finally made decision to go with a Cochlear Implant only to be shot down

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As the heading states, I Finally made the decision to go with a Cochlear Implant only to be shot down. After 5 separate 150 mile round trips to the Cleveland Clinic because of scheduling difficulty’s It was confirmed that I was definitely a candidate. However, my turned up a 5mm enhancing lesion in the right internal acoustic canal, most likely a benign Vestibuler Schwannoma. After speaking with my surgeon his recommendation was to forgo the implant because of the lesion. He thought the chance of loosing my residual hearing in that ear and not having the implant being a 100% successful because of the lesion was to great.
As Marvin the Martian use to say…Back to the drawing board…

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Sorry to hear it. After making a difficult decision and all the buildup, that would not be a nice feeling at all.

@cleveto said:

He thought the chance of loosing my residual hearing in that ear

This comment means nothing, most ’s leave little to no residual hearing.

I too am sorry to hear about your results. All the time and effort. Have you considered getting another surgeons opinion on this?

ALWAYS get a second opinion on surgery. If they agree or disagree, you know more or have higher confidence.

I had two surgeries a couple years back. Both by the leading surgeons for these types of surgeries in the region. I could have gone with just that alone for confidence, but I sought second opinions from doctors in practices and systems different from the original surgeons. One gave me nearly the same prescription for what he’d do in the operation, and the only difference was post-op care. The other gave me two scenarios for what could be done. “It doesn’t matter which we pick so much as the skill of the surgeon.” I had a lot easier time going into both surgeries.

I wish you the best in what you choose for next steps, whatever do decide!

WH

Wow, indeed disappointing after doing all the gut wrenching deciding. Agree a second opinion is always an option and worth doing prior to scrapping the idea altogether. What about your other ear??

The other ear actually has 58% word recognition while the implant ear is 18%. Only the one ear qualifies.

I believe the Medicare level to qualify was raised 60% on 2022 or there about. I wasn’t far from that and was on the fence. So it may be something to consider down the line. Hearing generally gets worse with age.

I can guess how disappointed you must be after serious consideration deciding to join other cochlear patrons only to be turned down.

I have been there. It was an audiogist (not mine) who I had to consult with after a surgeon saying he thought he could help me. I was a d an disappointed. I feel betrayed. She filed her report saying that I could be sufficiently helped with specific hearing aids she could fit me with, oticon I think but not remembering precisely. All I know is I couldn’t afford them. And I feel like I was just a financial incentive to her. Don’t give up. Maybe you should get a second opinion from another surgeon?

What a bummer, especially because of all that driving!
Agree with all the people who already encouraged a second opinion. Is there a more accessible center for you?
Don’t give up

I’m very sorry to hear this. As I see it you have 3 choices.

  1. As others have said get a second opinion much closer to home.
  2. Looking at your both ears qualify. Seriously consider having your other ear done.
  3. Do a lot of research on the pros and cons of having your tumor removed.

I was very hung up on having my residual preserved. Most people lose 20-30% of their residual during the procedure. It’s just one of those things that recipients just accept. But as surgeons will tell you preserving your residual is not guaranteed. The longevity of your preserved residual also isn’t guaranteed. Mine was preserved during surgery. 15 months later my preserved residual dropped off. No one is able to explain to me why this happened. For me being able to hear is far more important than have my residual preserved. You just adapt to the circumstances around you.

In reply to @kcsummerkc

If you qualify according to insurance and have a surgeon who agrees, the decision to proceed with a is yours alone. Yes, there is a financial incentive for to discourage CI because then you don’t need to buy hearing aids. Find an AuD who is trained in CI work. I had two AuDs discourage me from CI because I was borderline, but I went ahead and got my official consult and got it. Best choice for me.

I’d stay away from any Cleveland Clinic facility. For that matter any public sector hearing provider in Cleveland, OH. Metro Health, University Hospitals, Cleveland Clinic are all stains to the audiology field. I would however recommend Lippy Group in Warren, OH. Might be half the commute for yourself. Good luck

As you had decided to go with Cochlear, give them a ring and ask for a good clinic near you. Then get a referral to go to that clinic for your 2nd opinion/management.
Good luck :four_leaf_clover: to you.

Interesting to hear from someone in the same boat as me. I too was diagnosed this year with a vestibular schwannoma, and am near deaf in that ear, with moderate to severe hearing loss across all frequencies, and 20% word recognition (and I have sensorineural hearing loss in the other ear); “unaidable” and “no useful hearing” they say. After a couple of , the neurosurgeon determined that the schwannoma isn’t growing, so for now we will do nothing and watch and wait.

Right now I’m in no rush to get a cochlear implant. The diagnosis is new, and I’m waiting to see how the acoustic neuroma thing shakes out. I’ve been fitted with hearing aids in the mean time. But I have wondered hypothetically about the eventual possibility of a cochlear implant. Hearing in noise can be a real challenge, and not being able to localize sound sometimes has be pulling my hair out trying to find my cell phone. But I don’t know if a cochlear implant is a real option, or if my auditory nerve is too far gone for it to do any good. I asked the neurosurgeon, but she basically didn’t know; ears aren’t her thing. Eventually I might pursue it with an .

I just noticed that this is an old thread which just popped up on my feed. I haven’t seen many people talk about acoustic neuromas, so here I am.

@wilfried thanks for sharing, it’s a very interesting topic.

@wilfried said:

(and I have sensorineural hearing loss in the other ear);

Just a question if it’s OK. Would the Acoustic Neuroma/Schwannoma in your L ear, prevent you from getting a in your R ear sometime in the future?

In reply to @Deaf_piper

My right ear is nowhere near bad enough to warrant a cochlear implant, and I sure hope it never progresses that far. I’m wondering about my the left ear, which is near deaf. Also, if I get a cochlear implant, I’ll have to worry about two devices, a cochlear implant in one ear and a hearing aid in the other.

@wilfried said:

My right ear is nowhere near bad enough to warrant a cochlear implant, and I sure hope it never progresses that far. I’m wondering about my the left ear, which is near deaf.

My profile is worse than yours and I have no issues with properly programmed Ha’s, but that’s for my particular case. My sister has 2 Ci’s and was clearly told before that once you go there there will be not going back, since the cut the connection to your outer ear. Since then she also had to replace both ’s (manufacturer faults) and is hearing even better. My 2c’s worth.

In reply to @kcsummerkc

Not necessarily - I will grant the benefit of the doubt. If you are trained in school to diagnose and aid hearing loss, hearing aids have been the standard. Only in the last ten plus years has the use of for those with some remaining hearing been researched enough to to help people feel more confident getting them before reaching profound levels of loss. It’s a relatively new tool in the tool box and are a somewhat different practice focus. If the Aud or hearing office are not proactively looking into new CI options, it’s just no on their radar. I hope that changes. My graciously invites me to meet her AuD class so they can hear from someone who made the choice for CI early in the need slope and it can really change their interest in including CI work going forward.

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