Very Very Very Regret I Had This CI Surgery

[melchang]

It is a rare incident unfortunately happened to me.  My story doesn't mean cochlear implant is a bad choice, I still think cochlear implant is a better choice to change my life, and never give up my faith on Med-El products.  I share my CI experience here in order to help the future CI recipients more cautious and know how to communicate with their surgeons.

 

My residual hearing was destroyed a lot post-op, that's the risk I had to take, and not much to complain about it. However, my surgeon's attitude did ruin my trust and confidence on EAS trial.  My surgery was performed on Oct 2nd.  In the attached image file, my right ear residual hearing post-op lost 30db at 250hz, 45db at 500hz, and 40db at 550~1000hz based on the audiogram report on Dec 17, 2014.

 

Both ears (right ear was implanted, left one is not) always have barometric pressure symptoms, the terrible fullness of both ears has never gone, sometimes it came with dizziness and loud tinnitus, and few times I felt significant right eye (yup it is eye, not ear) pressure.  The symptoms turned worse after shampooing my hair, wearing CI for 30 minutes, or having headphone on to listen to YouTube.

 

In three months post-op I kept complaining my symptoms to my surgeon via emails, his nurse and he checked my middle ear four times and found no fluids, however, he didn't take any further action to diagnose, and I am still suffering on those bothersome symptoms.  On Dec 17 2014 both my audiologist and audiologist from Med-El headquarter tested my hearing and immediately sent me to my surgeon for checking. I didn't figure out what happened at that time until received the hearing test comparison charts from my audiologist yesterday (see the attached image file).  When I was seen by my surgeon on Dec 17 2014, he was very unhappy and certainly complained I worried too much, he insisted that I should have been wearing CI audio processor, but how to solve my problem with ears fullness, dizziness, and loud tinnitus after turning on audio processor for 30 minutes? No any answer.  This procedure made me feel people just cared about if I was participating in EAS trial, no one really focused on my symptoms and tried their best to relieve my sufferings.  When I mentioned my symptoms, all the responses sounded like I didn't tell the truths or I worried too much or I didn't understand cochlear implant procedures well.  Even I said I did enormous research on CI and visited many EAS trial participants blogs, I was still told that information on google was sometimes incorrect or insufficient.  Even I mentioned I lost 30-45db residual hearing comparing to others who lost only 10-20db, I was still told that 30-45db residual hearing lost was normal and common.

 

Now the problem is all those symptoms including fullness of both ears, dizziness, tinnitus, and several times eye pressure can't be diagnosed, actually no one cares.  What am I supposed to do?

 

[Behindwoods]

sorry to hear your experience with CI, I am one of future user, feel better and get well soon.

[Ivana Marinac]

Hi Mei,

 

I have read your story (and remember of your episode before) - in short it sounds like you have some additional issue with your inner ear: have you ever been checked for Meniere disease?

Your dizziness attacks are taking your story into that direction, although the fullnes of the eye is not connected definitely with your ear.

BR

[kenstee]

Welcome to the club! Most all of my residual hearing went too. It is a stated risk with this surgery. And I accept that. To be very honest, it doesn't at all bother me. I have the implant and that's how I hear. My implanted ear is just a prop to provide facial symmetry and hold up my sunglasses. Unfortunately, here are NO guarantees with ANY surgery. In our case, no one can predict exactly how many dbs of hearing - if any - you might lose. You may be average, below normal or above normal. That's how statistics work. Everyone reacts differently to the surgery.

 

As to your issue Mel, it may be there was and still is some fluid leakage from your inner ear that is causing your dizziness. I'd check with your surgeon ASAP. And....get a second opinion from another reputable implant surgeon ASAP. It can't hurt. Tinnitus is a terrible side effect of deafness or profound hearing loss for quite a number of people - me included. They're still not totally sure what causes it and how to treat it. That said, I find mine is significantly minimized when I have my CI on. But, its not like it totally disappears. It's most definitely there. When it's off - like at night - I use White Noise machines to help mask it. I am NEVER tinnitus free. Sucks big time. But, I have to deal with it the best I can because simply put - it ain't going away till I die.

 

Note to file: For those considering an implant. FIND THE BEST AND MOST EXPERIENCED SURGEON YOU CAN NO MATTER WHERE THEY ARE. Do your research! There is PLENTY online. Very big city hospitals do the most implants so maybe consider that as an option. Most people seem to research a new TV more than they do their surgery!  Remember, in the US anyway, your insurance will pay for the best or worst surgeon. So, why not find the best? It costs you no more. Remember, half the doctors graduated in the bottom half of their class. And they're all not created equal.

[melchang]

 

Hi Mei,

 

I have read your story (and remember of your episode before) - in short it sounds like you have some additional issue with your inner ear: have you ever been checked for Meniere disease?

Your dizziness attacks are taking your story into that direction, although the fullnes of the eye is not connected definitely with your ear.

BR

Dear Ivana,

 

I am so sorry to reply your message late, highly appreciate your response and care to my post.

 

I have all the symptoms similar to Perilymph fluid leak and/or Meniere disease.  I asked both my surgeon and audiologist several times, they were very sure that I did not have Perilymph fluid leak or Meniere disease.  My surgeon said he double checked my CT-scan image pre-surgery, and he could not find any evidence I had abnormal inner ear.  I asked him if that was possible he got the other people's CT-scan image because I took CT-scan in another hospital which he did not affiliate with, CT-scan image was burned to a CD and then delivered to his clinic center for evaluation.  My surgeon said he did x-ray immediately after surgery was done, and he was definitely sure my implanted ear did not have fluid leakage, and inner ear was normal.

 

After surgery I requested new CT-scan exam at least 4 times, unfortunately my surgeon denied all my requests and said it was unnecessary due to no fluid found in my middle ear, and he had full confidence on my recovery.  The last time when I saw him, I mentioned Perilymph fluid leak and Meniere disease, and asked for CT-scan again, he was very unhappy, said he's already performed many CI surgeries. Obviously he thought I challenged his reputation and medical experience.  But if I asked him what caused those symptoms I had post-op, most of his answers were "I don't know".  See, the communication was very very tough between us.  I can't request CT-scan to check if I have Perilymph fluid leak and/or Meniere disease, if I do, to him I show no respect.

 

I met my audiologist last week, she pointed out the potential of my symptoms might be related to eustachian tube, but she emphasized that she was not ENT, and strongly recommended I'd better to see my surgeon.  Frankly, I don't dare to see my surgeon.  Asking some questions will make him unhappy, and get "I don't know" response.  I'm afraid I will lose optimistic strength and gratitude mindset after seeing him.

 

So far I am in the process of upgrading my insurance policy, so I can get second opinion from the other CI surgeons and ENTs.  I do hope everything will get better eventually.

 

Melissa

[melchang]

 

Welcome to the club! Most all of my residual hearing went too. It is a stated risk with this surgery. And I accept that. To be very honest, it doesn't at all bother me. I have the implant and that's how I hear. My implanted ear is just a prop to provide facial symmetry and hold up my sunglasses. Unfortunately, here are NO guarantees with ANY surgery. In our case, no one can predict exactly how many dbs of hearing - if any - you might lose. You may be average, below normal or above normal. That's how statistics work. Everyone reacts differently to the surgery.

 

As to your issue Mel, it may be there was and still is some fluid leakage from your inner ear that is causing your dizziness. I'd check with your surgeon ASAP. And....get a second opinion from another reputable implant surgeon ASAP. It can't hurt. Tinnitus is a terrible side effect of deafness or profound hearing loss for quite a number of people - me included. They're still not totally sure what causes it and how to treat it. That said, I find mine is significantly minimized when I have my CI on. But, its not like it totally disappears. It's most definitely there. When it's off - like at night - I use White Noise machines to help mask it. I am NEVER tinnitus free. Sucks big time. But, I have to deal with it the best I can because simply put - it ain't going away till I die.

 

Note to file: For those considering an implant. FIND THE BEST AND MOST EXPERIENCED SURGEON YOU CAN NO MATTER WHERE THEY ARE. Do your research! There is PLENTY online. Very big city hospitals do the most implants so maybe consider that as an option. Most people seem to research a new TV more than they do their surgery!  Remember, in the US anyway, your insurance will pay for the best or worst surgeon. So, why not find the best? It costs you no more. Remember, half the doctors graduated in the bottom half of their class. And they're all not created equal.

 

Hi Ken,

 

Thanks so much for your advice, unfortunately, nothing could be changed even I checked with my surgeon several times since the surgery was performed on Oct 2nd last year.  See my post responded to Ivana.

 

My surgeon is a renowned ENT and has many CI surgery experiences.  His department is in the list of top ranked hospitals in the USA.  I have a nice audiologist who recommended him.  I never ever had any questions on my surgeon's surgical skills.  In fact he did a fabulous surgery, I had no pain post-op, and incision healed very well in a week. Everything was so great till the third day post-op.  The big problem is his attitude.  I expected he could do some exams or refer me to the other specialists if he could not diagnose.  I told him once that taking early action was better than waiting until the last minute. but he had full confidence on his experience and asked me to wait and wait more weeks, so I had no choice but self-hypnotized that I would get better. Well, my mistake is I didn't ask questions when I met my surgeon for the evaluation of CI surgery. He didn't say much about CI and made a mistake on implant device, I corrected him the implant should be Sonata, not Concerto, he confirmed with my audiologist and gave me a positive answer, then we finished the discussion.  It took about 5 minutes for meeting.

 

Well, I am in the process of upgrading my insurance policy, and gonna see the other CI surgeons/ENTs.

 

Thanks,

 

Melissa

[melchang]

I met my audiologist last week and she did tympanometry on both ears.  I attached the images below based on what I memorized.  My left ear is in the normal range of green area, but my right ear is almost out of the normal range of red area.  That means my right (implanted) eardrum movement enormously decreased.  That is very weird situation.  According to information on NIH, decreased (eardrum) movement can mean that there is fluid in the middle ear, however, my surgeon didn't find fluid in my middle ear! Another reason for decreased eardrum movement is ruptured or perforated eardrum which has barometric pressure symptoms. A hole in the eardrum can be visualized, but some holes are quite difficult to see. I have no clue if I have perforated eardrum or not.

My audiologist mentioned my symptoms might be related to Eustachian Tube Dysfunction or Blockage.  I just did some tests and started to believe my audiologist might be right.  I closed my mouth, held my nose, sniffed and blew my nose.  I heard the sound of popping/cracking and felt the air flow in my left (unimplanted) ear yet no any sound no air flow in my right (implanted) ear.

 

[kenstee]

If you ever, ever doubt the wisdom of doing your CI read this.."Studies show link between hearing loss, mental decline" http://www.chicagotribune.com/lifestyles/health/sc-health-0121-hearing-loss-dementia-20150115-story.html

 

Also, while Sonata has been FDA approved it is not yet available. Probably sometime late-spring/early summer in the US.

 

PS: Your surgeon, while he may have sound technical skills sounds like a real jerk. Go elsewhere for a fresh work-up if needed.

[simekj]

Hi Mel.  I experienced similar symptoms post op a couple of years ago.  Of course your situation could be due to something quite different.  But just it case it may be of any encouragement to you.  I had to tilt my head right back and forth to help the fluid drain out of the head and down the back of the pharynx.  Sometimes I gently massaged the areas near the implants to 'speed' it up.  The head takes several months (I think mine took 3 or 4 months) to reduce the swelling and remove all the fluid.  I had more tinnitus then than now.  (Though I was blessed with a significant reduction in overall tinnitus post op). The white noise when the processors are removed is due to neural stimulation and it becomes less concerning with time as it sort of 'becomes quieter'.  (I got this with hearing aids too as I worked in a noisy environment). If your device is set too loud it can make it problematic.  After one map I got headaches because it was so loud and there was alot of white noise, fullness of ear (mainly too much volume and bass plus I had a buzz thing going on) and dizzy turn with the eye with high sounds and car brakes. I put up with it as I needed to and because I knew that the whole process was about 'stretching' the nerves to cope with increased stimulation but would rest them when I could at night and in the weekends. At that point the white noise would scream. I probably pushed it abit, but it paid off in the end. It took a week before the headaches went and somehow my brain and nerves got used to the stimulation etc. I was amazed at the 'clarity of sound'.  Then at the next remap, they turned off one of the electrodes and the buzz and dizzy thing went away. It took a while to find the culprit. I don't get fullness of ear feeling unless there is a really low bass sound and it is regular and loud. i lost my residual hearing too.  Not sure exactly how much but before I could wear hearing aids and hear noise, now i hear zilch with the same aids.  I don't have any regrets though as I am blessed.  It's a matter of persevering through the first 6 months of 'teething', then one year and communicating with your audiologist. Not sure if this helps you or not.  I hope and trust that it will sort itself out for you. I had the attitude thing with my audiologists.

[melchang]

Hi Mel.  I experienced similar symptoms post op a couple of years ago.  Of course your situation could be due to something quite different.  But just it case it may be of any encouragement to you.  I had to tilt my head right back and forth to help the fluid drain out of the head and down the back of the pharynx.  Sometimes I gently massaged the areas near the implants to 'speed' it up.  The head takes several months (I think mine took 3 or 4 months) to reduce the swelling and remove all the fluid.  I had more tinnitus then than now.  (Though I was blessed with a significant reduction in overall tinnitus post op). The white noise when the processors are removed is due to neural stimulation and it becomes less concerning with time as it sort of 'becomes quieter'.  (I got this with hearing aids too as I worked in a noisy environment). If your device is set too loud it can make it problematic.  After one map I got headaches because it was so loud and there was alot of white noise, fullness of ear (mainly too much volume and bass plus I had a buzz thing going on) and dizzy turn with the eye with high sounds and car brakes. I put up with it as I needed to and because I knew that the whole process was about 'stretching' the nerves to cope with increased stimulation but would rest them when I could at night and in the weekends. At that point the white noise would scream. I probably pushed it abit, but it paid off in the end. It took a week before the headaches went and somehow my brain and nerves got used to the stimulation etc. I was amazed at the 'clarity of sound'.  Then at the next remap, they turned off one of the electrodes and the buzz and dizzy thing went away. It took a while to find the culprit. I don't get fullness of ear feeling unless there is a really low bass sound and it is regular and loud. i lost my residual hearing too.  Not sure exactly how much but before I could wear hearing aids and hear noise, now i hear zilch with the same aids.  I don't have any regrets though as I am blessed.  It's a matter of persevering through the first 6 months of 'teething', then one year and communicating with your audiologist. Not sure if this helps you or not.  I hope and trust that it will sort itself out for you. I had the attitude thing with my audiologists.

 

Hi Karen,

Thank you so much for sharing your experience with me.  Forgive me to show my appreciation after 6 months .  It's a long story, I will share with people here after all the tests are done.  

[Mary Beth]

Hi Mel,

Sure hope things are improving for you.

Mary Beth

[Adam]

I have a hole in my left eardrum and not have any real issues with it. The reason it is there is due to having had a tube for a number of years due to chronic fluid build up.

I also had a perilymph fistula in that ear and had 5 surgeries to correct it. Having the tube in the ear actually relieved the pressure fullness I was feeling. Fistula holes can be so small, you cannot see them with the naked eye. Sometimes you have to go on the symptoms. I did lose hearing from the fistula.

Any time I strained which would cause an increase in pressure, blow my nose, lift something heavy, sneeze.... This would be enough to bring on a severe case of vertigo. I have bilateral CIs with I got almost 4 years ago. The hole in my eardrum is still there and it looks like it is not going to close up on its own. I don't swim much at all so having my doc repair the eardrum is just wasted money. It hasn't affected the CIs at all. I just can't submerge my head all the way under the water. Ever since I had the last fistula surgery all the symptoms have stopped.

I would agree with the others and maybe get a second opinion. A fistula going un repaired can make your hearing worse. Just a thought

[Adam]

Also

Getting a second opinion happens all the time and it does not bother the doctors or make them mad. They understand that you want to be as informed as possible to make the best decision. You need to have 100% trust in your doctor and Audi. If you don't, I would find one that you are more comfortable with that will listen to your concerns. It sounds like you definitely have something going on but I don't know that it is related to your implant

I am not a doctor or audiologist so I try not to give medical advice other than talk to your doctor. Again, if you are not comfortable with him or her, find one you are. The clinic you are at might even be able to help you.

Adam

[Ivana Marinac]

Adam, just one remark: having a hole in your drum is not insignificant clinical sign. Technically, your inner ear is open to the outer world completely naked because the entrance into a cochlea, oval window is punctured by a CI electrode - nothing protects it so you can get meningitis as easy as eating a cake.

Not good at all - it isn't just the matter of swimming than everything around you.

Just a friendly warning...

[Adam]

ivana,

Gotcha, that does make sense.

[Ivana Marinac]

It does make sense REALLY.

I can understand that you make choice for yourself from various reasons but please - this thing can be potentially dangerous and harmful for someone else. For instance, in Europe you couldn't even go to a CI operation before adequate tympanoplasty.

Pardon me my friend, but this is the breaking point where my profession wakes up and raise voice.

[Adam]

I totally understand.

The hole was there before I was implanted. My doctor didn't have any issues moving forward with the surgery and I didn't recieve a vaccination before either. I guess it depends on the doctors preference on how he or she wants to handle things.

[Ivana Marinac]

It's hard to understand his decision as obvious route outer world - a route toward a brain is totally open... without any barrier to protect it.

I really don't understand this decision. Moreover, there is also possibility of damaging your electrode.

[melchang]

I have a hole in my left eardrum and not have any real issues with it. The reason it is there is due to having had a tube for a number of years due to chronic fluid build up.

I also had a perilymph fistula in that ear and had 5 surgeries to correct it. Having the tube in the ear actually relieved the pressure fullness I was feeling. Fistula holes can be so small, you cannot see them with the naked eye. Sometimes you have to go on the symptoms. I did lose hearing from the fistula.

Any time I strained which would cause an increase in pressure, blow my nose, lift something heavy, sneeze.... This would be enough to bring on a severe case of vertigo. I have bilateral CIs with I got almost 4 years ago. The hole in my eardrum is still there and it looks like it is not going to close up on its own. I don't swim much at all so having my doc repair the eardrum is just wasted money. It hasn't affected the CIs at all. I just can't submerge my head all the way under the water. Ever since I had the last fistula surgery all the symptoms have stopped.

I would agree with the others and maybe get a second opinion. A fistula going un repaired can make your hearing worse. Just a thought

 

Hi Adam,

 

Thank you so much for your remind of potential fistula in my implanted ear.  I just sent an email to my ENT and double checked with him if Perilymph Fistula is found in my CT scan report.  I am waiting for his response.

 

Thanks again,

 

Mel

[melchang]

Also

Getting a second opinion happens all the time and it does not bother the doctors or make them mad. They understand that you want to be as informed as possible to make the best decision. You need to have 100% trust in your doctor and Audi. If you don't, I would find one that you are more comfortable with that will listen to your concerns. It sounds like you definitely have something going on but I don't know that it is related to your implant

I am not a doctor or audiologist so I try not to give medical advice other than talk to your doctor. Again, if you are not comfortable with him or her, find one you are. The clinic you are at might even be able to help you.

Adam

 

My clinic found me another ENT.  I just saw him few months ago, and have not seen him after a while.  Well, I have no problem with my audiologist, she's thoughtful and kind though sometimes I wondered if she really understood my problems.   I have confidence with my surgeon's medical experience and skills, but don't like his "I don't know" answer without any further action to take.  Maybe the reason of my technical background "I don't know" attitude sounds unacceptable to me. 

[melchang]

I totally understand.

The hole was there before I was implanted. My doctor didn't have any issues moving forward with the surgery and I didn't recieve a vaccination before either. I guess it depends on the doctors preference on how he or she wants to handle things.

No meningitis vaccination? Wow, I think you might take risks.  

[melchang]

Hi Mel,

Sure hope things are improving for you.

Mary Beth

 

Hi Mary Beth,

 

Thank you.

 

Mel

[Adam]

Mel,

I have had meningitis before. Not sure if you can get it more than once or not. He was very confident that I would be fine without it

[Kara of Canada]

Yes you can contract meningitis more than once. I have only had it once. My surgeon said some of his patients had had it many times. Meaning more than once or more. I had to have my vaccinations before surgery. There are three main types of meningitis. Bacterial, viral, and fungal. I had bacterial. I had a client once who had fungal. What a brutal illness it can be.

[Ivana Marinac]

Yes, indeed...