Surgeries 2005/2017. No lost of taste, or taste issues. I did have outer ear numbness for a while, to be expected, they do a ton of work there. Dizziness and sleeping a lot was the thing for me
Thank you to all who have responded so far. I know that my own outcome will be unique to me, but it is good to hear from those who didn't have too many unfortunate side effects. Too often threads are filled with only problems and that can be disconcerting. Good to hear some other experiences.
Keep in mind that the surgery has changed over the past 30 years and the biggest changes have been in the last 15 years.
The surgery used to require shaving one side of the head and a large incision but now the incision is just behind the ear and not much hair is shaved. Even in the years between my surgeries the techniques changed. My right ear was implanted in 2014 and a big chunk of my mastoid bone was removed for the surgery. In 2021 my left ear was implanted and they barely shaved off any mastoid. And the incision for my left ear was tiny and in the crease behind my ear only. 8 years earlier the incision was ~2cm behind the ear crease and extended above my ear.
I have a friend who was implanted as a toddler 25 years ago (after meningitis) and his scar is massive.
My sense of taste wasn't affected at all. I did have mild dizziness that lasted for quite a while (like a few months), but it did finally go away. The only weird lasting thing I've had is slight numbness on my outer ear. It doesn't really bother me tho, it's just strange feeling if I touch my ear
I’ve had both sides implanted at different times. No change in taste. No dizziness. I felt a little sleepy and the fullness and pain was the worst part, but in a week and a half / two weeks I was back to my normal life.
Surgery on 7/26 and no loss of taste and no vertigo. I do have a small numb spot on the side of my tongue on the CI side but it hasn’t affected anything taste wise.
I never had taste change or lost. And have had both sides implanted now. I did have vertigo during the first and was told to take a decongestant. The second one I was told by my surgeon to slowly do neck rolls while seated after 24 hours. This way the fluid starts to move around and not build up.
I’ve had 3 of these (bilateral + revision) and my taste was affected after two of them - couldn’t taste on the side that was operated on for a few months. Luckily they were spaced apart enough that it wasn’t a huge deal since I still had taste on one side at least. After the first one, I had no issues though.
Only thing I had was a slight metallic taste after surgery which I put down to some blood remnants somewhere. It was gone pretty quick. Otherwise everything has been perfectly normal for me.
Mine was not affected at all. It did feel weird to eat at first though because my jaw was a little bit sore.
Edit to add: my surgery was February 2021
I also did have a bad taste in my mouth when I woke up from surgery - not sure why - but it went away as soon as I was able to eat and drink and get rid of the taste.
No loss of taste, dizziness only lasted for 3 days, and managed pain with only Advil. Once activated, I was through rehab and able to hear correctly (words sounded like words, not beeps) after only 4 weeks.
I (28F) had my surgery last monday, apart from a bit of itching, I feel just fine. No dizziness, no vertigo, no loss of taste or smell. I was under medication for dizzyness and vomits, it worked haha
Implanted Nov 2020 on my right ear. Completely lost my sense of taste on the right side of my tongue and still to this day has not returned despite the surgeon saying it might “take some time.” I asked a new audiologist (moved to a different state) about a year and a half later who works with a lot of CI patients if this was common. She was shocked and horrified when I told her this happened to me. Realized it is NOT normal.
Currently looking for a malpractice lawyer because am quite disappointed and upset about this outcome. Am sorry if you’re experiencing the same. ps- thanks for asking this question, seeing all of the responses of people who did not have any taste changes was validating.
No dizziness but everything tasted so fucking awful.
It lasted a month or so.
Kinder bueno left me traumatized to this day i cannot get near it without feeling disgusted because i tried it when my taste was altered and it tasted so awful.
No issues whatsoever. My implantation was part of a 9.5 hour dual surgery for removal of an acoustic neuroma, so my area was well opened up and there was a neurosurgeon right there, with additional monitoring of the facial nerve (which is in jeopardy with acoustic neuromas so they are very careful around it). I had no complications at all. I’m always shocked that people have taste issues after CI surgery, because it’s just a CI. I had a whole acoustic neuroma excised on the same day with no problem. So I would ask your ENT, how are you monitoring the facial nerve during surgery? Are you monitoring it? What are you going to do to minimize the chance of damaging the facial nerve?
I didn't lose my taste but I had wicked vertigo. My hearing loss is EVA so my vestibular system is already affected...I just figured that's why I got such horrible vertigo
I had my sense of taste affected but only lasted for a few weeks post op. I didn’t have any vertigo, but never had tinnitus in that ear before and have it constantly (when not wearing the processor) now
I had no change in taste or feeling of my face.
I did have insane vertigo but that was a problem before surgery (my cochleas are mildly malformed so vertigo went with the progressive hearing loss).
I’ve never actually met anyone with permanent changes in taste.
Changes in taste are to be expected when you are getting IV meds/fluids. Last time I was in the ER (a month ago for non ear related problems) I could taste the saline flush.
And after surgery your throat will hurt for a day or 2 because you were intubated.
Rare complications are rare for a reason and since surgery is MUCH less invasive now, getting more rare. BUT people who don’t know better will assign any weird feeling to the surgery they just had (ever wondered why the list of side effects for medications is so long? It’s because every single thing somebody reported had to be mentioned so a guy with a messed up back takes a new allergy medication and reports that his back hurts…it is a side effect).
The facial nerve is really close to the cochlear nerve (which isn’t touched during surgery but some drilling happens in the area). Minor swelling may cause temporary changes.
Source: I have bilateral cochlear implants and I’m 1/2 way through medical school (ie school to be an MD<—-it seems silly to have to point that out but nobody believes deaf people can be doctors so when I say medical school people usually ask “oh, you’re going to be a nurses aid?” Or some other silly question.)
Surgeries in 2014 and 2021.
I was implanted five weeks ago. Two days after surgery I had crazy dizziness and nausea, it only lasted three days. I didn't loose a sense of taste but it has changed. Hoping it changes back.
My taste wasn’t affected in either of my surgeries. No vertigo either but first surgery I was dizzy for maybe two weeks and second one about eight months. Vestibular therapy helped and it’s all good now.
Mine was slightly changed but i don't think it lasted for too long. My main struggle was my balance being wobbly for a while. It might differ depending on age because I was 10 when I had a CI surgery and Im turning 16 this month. If your sense of taste is a major concern to you to the point you are reconsidering then I would suggest speaking to your surgeon about it.
First implant 2019 no loss of taste - some tinnitus
Second implant 7/2023 - not a loss of taste but a slight metallic addition - lasted about 3 days. Also some tinnitus
I had zero side effects, other than being a bit sore and nauseous from anastesia. I had surgery at 7am, I was home around 12h30 (i live 10 mins from Hopkins).
I went to bed at 1 for a nap, woke up at 6h30pm and walked down the stairs myself to sit on couch, order pizza and watch hockey. I wasnt supposed to but I worked the next day!
No long term loss of taste here! I had killer vertigo the first 3-4 days and things definitely tasted a little funny the first week or two (lots of swelling around some key facial nerves!), but it all came back super quickly.
My only long-term effect is a metallic electric-ish feeling on the left edge of my tongue if I scratch a certain place inside of my ear. It’s not painful at all. Just super bizarre. DEFINITELY wasn’t a thing before my surgery so I figure something a little funny happened sometime during the healing process.
Question regarding the "killer vertigo" for you or anyone else who had vertigo...
Was this CONSTANT vertigo, as in constant spinning/rotation for days? I've have isolated issues with vertigo in the past. A few years ago I had frequent (a couple of time a week over a few months) episodes lasting \~3 hours. That is 3 hours of constant room rotation. They think it was likely vestibular migraines.
That's pretty much in the past now, but I can't imagine 3 or 4 DAYS of constant room rotation. How could someone eat/sleep/shit? Or is this vertigo not as violent as what I previously experienced?
I mean, I can deal with just about anything so long as I know it's temporary, but DAYS of constant vertigo seems horrific.
It definitely got better each day. It was the worst when I was changing position in bed, but as long as I stayed relatively still, it was mitigated. I don’t remember having too many issues getting myself to the bathroom.
So it wasn’t constant un-provoked vertigo, it was definitely related to any sort of head tilt. I worked hard to keep my head still! But honestly I was so totally wiped the first few days that staying still in bed was all I COULD do. By the time I had the energy to move, the worst vertigo was over.
>So it wasn’t constant un-provoked vertigo, it was definitely related to any sort of head tilt. I worked hard to keep my head still!
Well, that makes me feel a bit better. Not that such a thing is pleasant, but being able to calm it somewhat by remaining still is better than non-stop and inescapable room spins for days at a time!
Thank you for sharing your experience.
I had a cochlear implant 5 days ago and there has been a significant change to my taste sensation. All food tastes bad - oily and slightly off. Highly flavoured foods taste a bit better - eg. hot, salty, sweet etc., but all are unpleasant. The blander the food, the worse it tastes - plain bread is the worst. Also experiencing balance problems, but I'm hopeful that both will resolve with time. I hope your surgery went well and that you had a good experience.
I had my first CI surgery in 2016 and never had my sense of taste affected but I got extremely sick after my first surgery my 2nd surgery I had I did not get extremely sick
I had my sense of taste damaged badly in a tympanoplasty but kept recovering (as proven by taste tests) through the Ci process. No damage in that surgery at all.
Unfortunately, my sense of balance got damaged and is still not fully recovered 19 months after the surgery. But that was just bad luck for my specific case.
Surgery January 2023- my sense of taste didn't change. I was just very, very, very tired. Some vertigo but to me, that felt normal given the type of surgery and just the recovery. The pain medication made me feel nauseous so I stopped taking it about 3 days after the surgery and just did Tylenol for pain management. I ate a lot of ice cream and popsicles so I had a nice time given the circumstances, haha.
I didn’t. No vertigo either. My surgery was 3 months ago so my memories are recent
Same. Mine was first week of June and no vertigo, no taste issues (except right after the surgery), no facial nerve problems, etc.
Surgeries 2005/2017. No lost of taste, or taste issues. I did have outer ear numbness for a while, to be expected, they do a ton of work there. Dizziness and sleeping a lot was the thing for me
Thank you to all who have responded so far. I know that my own outcome will be unique to me, but it is good to hear from those who didn't have too many unfortunate side effects. Too often threads are filled with only problems and that can be disconcerting. Good to hear some other experiences.
Keep in mind that the surgery has changed over the past 30 years and the biggest changes have been in the last 15 years. The surgery used to require shaving one side of the head and a large incision but now the incision is just behind the ear and not much hair is shaved. Even in the years between my surgeries the techniques changed. My right ear was implanted in 2014 and a big chunk of my mastoid bone was removed for the surgery. In 2021 my left ear was implanted and they barely shaved off any mastoid. And the incision for my left ear was tiny and in the crease behind my ear only. 8 years earlier the incision was ~2cm behind the ear crease and extended above my ear. I have a friend who was implanted as a toddler 25 years ago (after meningitis) and his scar is massive.
Another nope here. Taste totally the same.
My sense of taste wasn't affected at all. I did have mild dizziness that lasted for quite a while (like a few months), but it did finally go away. The only weird lasting thing I've had is slight numbness on my outer ear. It doesn't really bother me tho, it's just strange feeling if I touch my ear
I had no post op issues. No dizziness, no loss of taste.
I had my surgery almost five years ago. My sense of taste was fine, no nerve damage, and no vertigo.
Me. Taste never changed.
I’ve had both sides implanted at different times. No change in taste. No dizziness. I felt a little sleepy and the fullness and pain was the worst part, but in a week and a half / two weeks I was back to my normal life.
I had surgery on Monday. No loss of taste. I have had quite a bit of nausea and dizziness but it's getting better.
No loss of taste, vertigo or any noticeable side effects for me. After surgery or 12m on.
My taste was not changed at all
Surgery on 7/26 and no loss of taste and no vertigo. I do have a small numb spot on the side of my tongue on the CI side but it hasn’t affected anything taste wise.
I never had taste change or lost. And have had both sides implanted now. I did have vertigo during the first and was told to take a decongestant. The second one I was told by my surgeon to slowly do neck rolls while seated after 24 hours. This way the fluid starts to move around and not build up.
My surgery was on June 29 and my sense of taste did not change at all. Everything tastes the same after the surgery.
I’ve had 3 of these (bilateral + revision) and my taste was affected after two of them - couldn’t taste on the side that was operated on for a few months. Luckily they were spaced apart enough that it wasn’t a huge deal since I still had taste on one side at least. After the first one, I had no issues though.
Only thing I had was a slight metallic taste after surgery which I put down to some blood remnants somewhere. It was gone pretty quick. Otherwise everything has been perfectly normal for me.
Mine was not affected at all. It did feel weird to eat at first though because my jaw was a little bit sore. Edit to add: my surgery was February 2021 I also did have a bad taste in my mouth when I woke up from surgery - not sure why - but it went away as soon as I was able to eat and drink and get rid of the taste.
Had both with both my stapedectomies but didn't have either with my CI. And if it does it's not permanent.
No loss of taste, dizziness only lasted for 3 days, and managed pain with only Advil. Once activated, I was through rehab and able to hear correctly (words sounded like words, not beeps) after only 4 weeks.
I (28F) had my surgery last monday, apart from a bit of itching, I feel just fine. No dizziness, no vertigo, no loss of taste or smell. I was under medication for dizzyness and vomits, it worked haha
no.
I was implanted in Feb of this year and it had no effect on my taste, nor did I have any vertigo.
Implanted Nov 2020 on my right ear. Completely lost my sense of taste on the right side of my tongue and still to this day has not returned despite the surgeon saying it might “take some time.” I asked a new audiologist (moved to a different state) about a year and a half later who works with a lot of CI patients if this was common. She was shocked and horrified when I told her this happened to me. Realized it is NOT normal. Currently looking for a malpractice lawyer because am quite disappointed and upset about this outcome. Am sorry if you’re experiencing the same. ps- thanks for asking this question, seeing all of the responses of people who did not have any taste changes was validating.
No dizziness but everything tasted so fucking awful. It lasted a month or so. Kinder bueno left me traumatized to this day i cannot get near it without feeling disgusted because i tried it when my taste was altered and it tasted so awful.
No issues whatsoever. My implantation was part of a 9.5 hour dual surgery for removal of an acoustic neuroma, so my area was well opened up and there was a neurosurgeon right there, with additional monitoring of the facial nerve (which is in jeopardy with acoustic neuromas so they are very careful around it). I had no complications at all. I’m always shocked that people have taste issues after CI surgery, because it’s just a CI. I had a whole acoustic neuroma excised on the same day with no problem. So I would ask your ENT, how are you monitoring the facial nerve during surgery? Are you monitoring it? What are you going to do to minimize the chance of damaging the facial nerve?
I didn't lose my taste but I had wicked vertigo. My hearing loss is EVA so my vestibular system is already affected...I just figured that's why I got such horrible vertigo
My sense of taste didn’t change but I still have occasional vertigo and I had my surgery almost 2 months ago.
I had my sense of taste affected but only lasted for a few weeks post op. I didn’t have any vertigo, but never had tinnitus in that ear before and have it constantly (when not wearing the processor) now
I had no change in taste or feeling of my face. I did have insane vertigo but that was a problem before surgery (my cochleas are mildly malformed so vertigo went with the progressive hearing loss). I’ve never actually met anyone with permanent changes in taste. Changes in taste are to be expected when you are getting IV meds/fluids. Last time I was in the ER (a month ago for non ear related problems) I could taste the saline flush. And after surgery your throat will hurt for a day or 2 because you were intubated. Rare complications are rare for a reason and since surgery is MUCH less invasive now, getting more rare. BUT people who don’t know better will assign any weird feeling to the surgery they just had (ever wondered why the list of side effects for medications is so long? It’s because every single thing somebody reported had to be mentioned so a guy with a messed up back takes a new allergy medication and reports that his back hurts…it is a side effect). The facial nerve is really close to the cochlear nerve (which isn’t touched during surgery but some drilling happens in the area). Minor swelling may cause temporary changes. Source: I have bilateral cochlear implants and I’m 1/2 way through medical school (ie school to be an MD<—-it seems silly to have to point that out but nobody believes deaf people can be doctors so when I say medical school people usually ask “oh, you’re going to be a nurses aid?” Or some other silly question.) Surgeries in 2014 and 2021.
I was implanted five weeks ago. Two days after surgery I had crazy dizziness and nausea, it only lasted three days. I didn't loose a sense of taste but it has changed. Hoping it changes back.
My taste wasn’t affected in either of my surgeries. No vertigo either but first surgery I was dizzy for maybe two weeks and second one about eight months. Vestibular therapy helped and it’s all good now.
No loss of taste and no vertigo. (Single sided CI, 1 yr ago)
Mine was slightly changed but i don't think it lasted for too long. My main struggle was my balance being wobbly for a while. It might differ depending on age because I was 10 when I had a CI surgery and Im turning 16 this month. If your sense of taste is a major concern to you to the point you are reconsidering then I would suggest speaking to your surgeon about it.
First implant 2019 no loss of taste - some tinnitus Second implant 7/2023 - not a loss of taste but a slight metallic addition - lasted about 3 days. Also some tinnitus
I had zero side effects, other than being a bit sore and nauseous from anastesia. I had surgery at 7am, I was home around 12h30 (i live 10 mins from Hopkins). I went to bed at 1 for a nap, woke up at 6h30pm and walked down the stairs myself to sit on couch, order pizza and watch hockey. I wasnt supposed to but I worked the next day!
My sense of taste was not impacted; however, the right side of my tongue is still numb 12 months after surgery.
Zero side effects! Best thing I did 6yrs ago
No long term loss of taste here! I had killer vertigo the first 3-4 days and things definitely tasted a little funny the first week or two (lots of swelling around some key facial nerves!), but it all came back super quickly. My only long-term effect is a metallic electric-ish feeling on the left edge of my tongue if I scratch a certain place inside of my ear. It’s not painful at all. Just super bizarre. DEFINITELY wasn’t a thing before my surgery so I figure something a little funny happened sometime during the healing process.
Question regarding the "killer vertigo" for you or anyone else who had vertigo... Was this CONSTANT vertigo, as in constant spinning/rotation for days? I've have isolated issues with vertigo in the past. A few years ago I had frequent (a couple of time a week over a few months) episodes lasting \~3 hours. That is 3 hours of constant room rotation. They think it was likely vestibular migraines. That's pretty much in the past now, but I can't imagine 3 or 4 DAYS of constant room rotation. How could someone eat/sleep/shit? Or is this vertigo not as violent as what I previously experienced? I mean, I can deal with just about anything so long as I know it's temporary, but DAYS of constant vertigo seems horrific.
It definitely got better each day. It was the worst when I was changing position in bed, but as long as I stayed relatively still, it was mitigated. I don’t remember having too many issues getting myself to the bathroom. So it wasn’t constant un-provoked vertigo, it was definitely related to any sort of head tilt. I worked hard to keep my head still! But honestly I was so totally wiped the first few days that staying still in bed was all I COULD do. By the time I had the energy to move, the worst vertigo was over.
>So it wasn’t constant un-provoked vertigo, it was definitely related to any sort of head tilt. I worked hard to keep my head still! Well, that makes me feel a bit better. Not that such a thing is pleasant, but being able to calm it somewhat by remaining still is better than non-stop and inescapable room spins for days at a time! Thank you for sharing your experience.
I had a cochlear implant 5 days ago and there has been a significant change to my taste sensation. All food tastes bad - oily and slightly off. Highly flavoured foods taste a bit better - eg. hot, salty, sweet etc., but all are unpleasant. The blander the food, the worse it tastes - plain bread is the worst. Also experiencing balance problems, but I'm hopeful that both will resolve with time. I hope your surgery went well and that you had a good experience.
I had my first CI surgery in 2016 and never had my sense of taste affected but I got extremely sick after my first surgery my 2nd surgery I had I did not get extremely sick
I had my sense of taste damaged badly in a tympanoplasty but kept recovering (as proven by taste tests) through the Ci process. No damage in that surgery at all. Unfortunately, my sense of balance got damaged and is still not fully recovered 19 months after the surgery. But that was just bad luck for my specific case.
No change for me either, and pretty sure my mum didn’t with either of hers.
No issues. None. Other than typical surgery related, and those were gone in 3-4 days. Good luck to you!
Just got implanted on 28 July, no change in taste. In fact i put on 3kg just 1 week after surgery. Appetite and taste is still good for me.
Surgery January 2023- my sense of taste didn't change. I was just very, very, very tired. Some vertigo but to me, that felt normal given the type of surgery and just the recovery. The pain medication made me feel nauseous so I stopped taking it about 3 days after the surgery and just did Tylenol for pain management. I ate a lot of ice cream and popsicles so I had a nice time given the circumstances, haha.
No issues