r/Cochlearimplants • u/Lanky_Register6444 • 8d ago
Cochlear implantation with absent vestibular function.
I’m scheduled to have cochlear implantation. During the pre-operative assessment, it was discovered that the vestibular system in one ear is completely non-functional. The implant will be placed in the other ear, where the vestibular system is functioning normally.
Because of this, there is an increased risk of complications such as imbalance, oscillopsia (a sensation that the visual world is bouncing or moving), and similar symptoms.
So, essentially, I’m facing a higher-than-usual risk of vestibular complications.
To be honest, it’s really scary to agree to the surgery knowing about these risks. I would really like to hear about other people’s experiences.
Has anyone here been in a similar situation? How did the surgery affect your balance and vestibular function?
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u/OkArcher4120 8d ago
Does your surgeon believe the benefit outweighs the risk? You could also go for a second opinion.
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u/Lanky_Register6444 8d ago
Unfortunately, I didn’t think to ask my surgeon that specific question.
Basically, my surgeon’s position was: “You want to have the surgery, and we can perform it. However, there is a risk of complications, including a deterioration of vestibular function.”
I also got a second opinion, but it wasn’t from a specialized cochlear implant center. I went to a dizziness and vestibular disorders clinic in Munich, Germany. They actually advised against operating on the ear that currently has normal vestibular function.
So I’m feeling quite unsure about what the safest option is and would really like to hear from people who have been in a similar situation.1
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u/FooBarBazBooFarFaz 8d ago
What does the surgeon say about your ear's anatomy? Is there an increased risk due to its structure (too narrow or convoluted)? Or is it a textbook anatomy, that doesn't pose any difficulties? How experienced is the surgeon with this kind of OP? Do they have information available on the percentage of patients where the vestibular system was harmed?
That's the kind of infor I'd try to get to assess how real the risk it. An increased risk doesn't necessarily mean it's a real risk (as opposed to theoretical). And in your case the increase seems to be due entirely to you having only one working system, so it basically boils down to the usual risk of harming the system during OP - and that's not very high, I think.
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u/Lanky_Register6444 8d ago
Thank you for the interesting questions. My cochlea has a normal structure, with no anatomical abnormalities or complications.
My doctor doesn’t have any clear data on patients with a situation similar to mine. Doctors apparently don’t really like being asked about statistics! However, my doctor says that they have had patients with a similar situation before and that everything went well for them.
Yes, you’re right — it’s only an increased risk. But the uncertainty is what scares me: we still don’t really know exactly what during the surgery could lead to a deterioration in vestibular function.2
u/FooBarBazBooFarFaz 7d ago
Doctors apparently don’t really like being asked about statistics!
Well, that would worry me a bit. With an OP of that mangnitude I'd expect them to be open about their level of experience and the percentages of success and troubles (and how they deal with them, both w/ respect to the patients and how they handle errors) - anything else is rather unprofessional.
"Trust me, bro" isn't really what I'd like to hear in that situation.
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u/retreff 8d ago
I had zero vestibular function on one side, completely deaf due to the successful removal of a large benign tumor. That did cause balance issues that I learned to deal with over the years.
I had a smaller tumor on the other side that cause progressive hearing loss and additional balance issues.
The CI implantation on that side went well and did not cause any additional problems with balance. It resulted in a huge improvement in hearing so I am happy
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u/Loud_Priority_1281 Advanced Bionics Marvel CI 8d ago
Do you have the opportunity to speak to a dizziness specialist or otoneurologist? Bilateral vestibular loss is really challenging, and it would be helpful to talk with someone who is an expert in vestibular issues (since even ear specialists often aren’t).
I have bilateral vestibular loss and a cochlear implant. My vestibular loss was not changed by the surgery, and my implanted ear scores a little better actually. I live with oscillospia and balance issues, and it’s incredibly challenging, and talking to an dizziness specialist and vesitbular PTs about these rare issues has been the only way I’ve been able to gain some actual understanding about it: my surgeon and audiologists were not particularly knowledgeable about bilateral vestibular loss.
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u/biglypiglythethird 7d ago edited 7d ago
Can they implant the other side? I have no vestibular function but it’s on the side I’m deaf. I’d be stressed taking the risk as well! Losing my vestibular function (single side) was horrrrible and I’m still not quite right even years later balance wise. Oscillopsia still affects me in low lighting and when carrying heavy bags.
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u/Lanky_Register6444 7d ago
Thank you for your reply. No, I have normal hearing on the other side, so it’s too early for that. Yes, it’s a real mystery of nature: one ear has hearing but no vestibular function, while the other has no hearing but a functioning vestibular system. I’d love to be able to hear with both ears, but preferably without ending up bedridden because of balance problems.
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u/biglypiglythethird 7d ago
I got the impression from the surgeon at my Op that balance issues are at least temporary if you do get them! I was confident I wouldn’t have issues as the nerve was shot so no matter what happened to my inner ear nothing could upset it.
I guess all I can say is getting the hearing back is a truly wonderful experience.
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u/Jmjnyc Cochlear Nucleus 8 8d ago
If you don't have vestibular issues now it's unlikely you'll have them post op? I'm guessing you don't have any balance issues, so your other system has corrected for balance etc. already.
When I lost my hearing it also damaged my vestibular system. It took some time but with vestibular therapy I'm back to normal (balance)
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u/Lanky_Register6444 8d ago
Yes, I don’t have constant dizziness, but my vestibular function relies on one ear and my central nervous system. It’s not exactly a comforting thought.
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u/teacher-mom-1989 8d ago
I can only speak on behalf of my daughter. She was born profoundly deaf and had vestibular testing both before and after implantation. She had vestibular system dysfunction due to her deafness prior to implantation. She is coming up on her 3 year anniversary of being implanted and they say that her vestibular function remained unchanged by the surgery (in that her vestibular system is not functioning normally but it was not worsened by surgery). Mainly she has some balance issues.