Cochlear Implant with Endolymphatic Sac Decompression/Shunt for Meniere's

Cochlear Implants
#1

I was so excited to find this community. I am wondering if there is anyone out there who has a cochlear implant and is working as a nurse?

I have had Menieres for more than 10 years and while I have failed every treatment (diet, diuretics, meds, steroids), I have managed to never let it affect my career until the last year. After multiple severe attacks, I have been left with severe balance deficits and have lost all serviceable hearing on my right side. I also have incredibly loud, dual-toned, tinnitus. One audiogram showed 0% WRS and the other repeated after IT steroids improved slightly to 26%. My CDP (Computerized Dynamic Posturography) score was 10%. I have a 43-49% unilateral weakness on VNG. I have worn a single hearing aid on the right side for the last few years, and it worked well initially. The past few months, wearing it seems to make symptoms worse. The ability to hear speech clearly and have a steady balance is essential for my job.

I am scheduled for endolymphatic decompression and cochlear implant surgery in the coming weeks. The hope is to stabilize the vestibular disturbances and restore hearing on the right side.

How long does it take vertigo and balance to stabilize/improve following surgery? When did others return to work following surgery? Has anyone had a CI for menieres that improved their tinnitus? Has anyone had improvements with vestibular rehab?

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#3

Welcome to the forum.
Tinnitus is a flip a coin thing with cochlear implants. I have had bad tinnitus for 40 plus years. Really hoped the implants would stop tinnitus but it has not. It might actually be worse. Putting the processors on each morning does completely relieve tinnitus.

Search Menieres for lots of information. @kevels55 has helped many with his posts.
Good luck

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#4

Hi I’m an LVN with a Cochlear Implant on left side and hearing aid on right side. I also suffer from Tinittus but I don’t have Menieres Disease. What I need is a bluetooth stethoscope to do my job. I have a hard time in noisy environments. My hearing aid & Cochlear Processor does not work well in areas like that. Also, Do not return right away to work after Cochlear surgery I tried to return in a month. That is when I realize although I hear sounds the words and speech sounded robotic. Our brains has to get use to it our audiologist will adjust it. It took about 6 months for me to be confident enough to work. Unfortunately, regular stethoscopes don’t work well anymore even my amplified ones. Still looking for bluetooth. I have a Kanso 2 Cochlear and a Resound hearing aid both has blutooth.

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#5

Raudrive - So when you are wearing your processors, the tinnitus is gone? But the tinnitus returns when you take them off at night?

#6

Pinay73 - Wow! I don’t think I can be off for 6 months. I am an RN in the cardiac cath lab, and we are also the surge ICU, and that means we have been stretched thin with COVID-19. But I will try and secure as much time off as possible. I think my position is only guaranteed for 12 weeks and I will already have been off for a few weeks prior to surgery because my vertigo and balance has been so bad. (**NOTE - l will still have a job, but my schedule and exact position is not guaranteed)

You have the exact combo that I am considering - the Kanso 2 with the Resound HA. My current HA are resound, but they are from Costco, and so I think to have bimodal I will have to replace them. But I’m not positive. May I ask - do you have an apple or android phone? The current resound app streams really well from my Samsung Note 20 ultra, and so I’m hoping that I wont have problems with the Kanso processor.

Thanks for the tips on blue tooth stethoscopes. My boss informed me that the hospital has to provide what ever I need, so I just need to send them a link and they will try and have it purchased and ready before my return. I had no idea such a thing existed.

#7

I have an apple phone which has the app. I can control the volume and I can answer my phone through the blutooth in my Cochlear Processor. You can go back to work earlier. As time goes by sounds get better. I had my surgery just in December 2020 it is getting close to my 1 year.

#8

Yes, that is correct. No tinnitus when wearing the processors. Tinnitus returns when the processors are taken off.
I had hoped the surgery would have eliminated the tinnitus but it didn’t.

#9

Welcome to the forum @triplettrouble.
I’m was also an RN, sadly I got told I had to retire because I couldn’t take phone orders anymore. I absolutely understood as that’s an essential part of the job at times. As I was past the retirement age I didn’t much worry about it. I had a CI for SSHL shortly after retiring. I have a N7 processor and Resound aid.

I experienced vestibular balance issues after my implant op. During my 2nd mapping session when the stimulation was increased I nearly fell off the chair I was sitting on. My AuD promptly turned of electrode 1(that’s the electrode closest to the vestibular) and 2 has been locked at a certain level. My balance issues immediately ceased and haven’t returned to date.

I developed tinnitus after my implant surgery, I have 2 different types of sounds. Both these sounds are very faint and don’t annoy me at all. When my processor is on I don’t hear either of them.

I have in the past used an Eko electronic stethoscope with my BT Hearing aids several years ago… if you can get 6-8 weeks off work it would be good. As you need weekly & fortnightly mappings in the first few weeks. As you need to lay down new sound pathways in the brain to understand speech through your K2.

I’m 2.4 yrs post surgery and the electronic sounding voice does improve an awful lot but it does take time. It took me around 10 months before it balanced out with my resound aid. It took a lot of streaming everything I could get to stream to get the electronic voice to normalise.

Good luck on your journey to better hearing.

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#10

Your Kanso2 processor is compatible with Android 10 and higher smart phones as well as most iPhones. No intermediate device is needed.

My Kanso2 processors normally have between 50 and 55 percent battery remaining after a 16-17 hour day.

#11

Hello Triplettrouble, (love the name, you will have to tell us what it means…)
I have something similar. My official diagnosis bounces around from Meniere’s to vestibular labyrinthitis.
I score above an 80% variance in the VNG (no vestibular function at all) on my right side. Also, complete loss of hearing on right side. Basically, complete hearing and vestibular function loss on my right ear. It just went out one day…
How long does it take vertigo and balance to stabilize/improve following surgery? -I did not receive “endolymphatic decompression” surgery, so I can’t say. My CI did not bother me one bit, I don’t think I have any balance left to disturb.
When did others return to work following surgery? -I took 2 weeks off for my CI implant, then back to work
Has anyone had a CI for menieres that improved their tinnitus? -My tinnitus is gone while wearing my CI
Has anyone had improvements with vestibular rehab? -Yes, progress is slow but steady. I can now perform almost all tasks that I had before the loss (2 ½ years later).