Cons, as well as pros, of Cochlear implants

Sheri,

Good point -- and something I failed to consider.
 
As usual, our resident provacateur thinks we are mind-readers. What a waste of bandwidth!
 
The are planning to give me a CT scan at the LA HEI .

What is the word about ossification? My doctor sat on my referral to House for a whole 4 weeks, putting me, now, we beyong the 4-6 week optimal period.

I've seen some things online, saying that ossification can start within that period, and makes it impossible to do the CI.

However, I've seen other sites that say that this just makes the procedure more complicated.

And, yes, although I don't make a living doing music, I am good enough to get paid for the occasional gig -- making me, I guess, a semi-professional. Music is a huge part of my life.

Moreover, I work in a law school and am pursuing a PhD (already published!) ... I really miss the spontanaity of give-and-take discussions with other academics.

Thank you all for the input you have already given me!
 
Ossification rates range from 20 % to 80 % with meningitis, so there is a significant chance you are completely in the clear. I don't want you to panic, I do want you to realize it is an issue. Different types of meningitis have higher rates of ossification associated with them, was your meningitis bacterial or viral?

Once ossification sets in, it can range from making the implant surgery difficult to completely impossible. Usually it is "just difficult", sometimes extremely difficult. Difficult can range from the surgery taking a lot longer, but getting a full insertion of the electrode (meaning you get the same chance of good results as anyone else) to only partial electrode insertions. Everyone reacts differently to partial insertions, I know some people who think the results are not very good, and others who think the results are a miracle and have open set word recognition, even though both had the same implant with the same number of electrodes partially inserted. Obviously there are variables at work here that are not always visible that we don't always understand. I've also heard anecdotally that some people have a harder surgery recovery if they had partial ossification, there is a lot more drilling involved (i.e. they have to drill the ossified bone out of the cochlea to get the electrode to go in) and I think that is associated with higher vertigo and tinnitus rates post surgery, but I don't personally know of any cases where the vertigo or tinnitus has been permanent.

If it were me, I would honestly get the CT first and not wait for you appointment at HEI. Get the parameters from HEI so the CT place you go to does the scan that HEI wants. Keeping in mind, I am not a medical provider, I am a lawyer who knows a LOT of people with CIs and probably 35-40 of the appeals I have done are for meningitis cases which is why I am so familiar with ossification "worst case scenarios". I know at least 3 of these appeals the insurers dragged their feet so long to approve that ossification did set in to the point where optimum results were not achieved. That's not a huge percentage in the grand scheme of things, but you sure probably don't want to be one of those 3 . . .

Sheri

Hyperion357 said:
The are planning to give me a CT scan at the LA HEI .

What is the word about ossification? My doctor sat on my referral to House for a whole 4 weeks, putting me, now, we beyong the 4-6 week optimal period.

I've seen some things online, saying that ossification can start within that period, and makes it impossible to do the CI.

However, I've seen other sites that say that this just makes the procedure more complicated.

And, yes, although I don't make a living doing music, I am good enough to get paid for the occasional gig -- making me, I guess, a semi-professional. Music is a huge part of my life.

Moreover, I work in a law school and am pursuing a PhD (already published!) ... I really miss the spontanaity of give-and-take discussions with other academics.

Thank you all for the input you have already given me!
Click to expand...
 
LTHFAdvocate said:
Ossification rates range from 20 % to 80 % with meningitis, so there is a significant chance you are completely in the clear. I don't want you to panic, I do want you to realize it is an issue. Different types of meningitis have higher rates of ossification associated with them, was your meningitis bacterial or viral?

Once ossification sets in, it can range from making the implant surgery difficult to completely impossible. Usually it is "just difficult", sometimes extremely difficult. Difficult can range from the surgery taking a lot longer, but getting a full insertion of the electrode (meaning you get the same chance of good results as anyone else) to only partial electrode insertions. Everyone reacts differently to partial insertions, I know some people who think the results are not very good, and others who think the results are a miracle and have open set word recognition, even though both had the same implant with the same number of electrodes partially inserted. Obviously there are variables at work here that are not always visible that we don't always understand. I've also heard anecdotally that some people have a harder surgery recovery if they had partial ossification, there is a lot more drilling involved (i.e. they have to drill the ossified bone out of the cochlea to get the electrode to go in) and I think that is associated with higher vertigo and tinnitus rates post surgery, but I don't personally know of any cases where the vertigo or tinnitus has been permanent.

If it were me, I would honestly get the CT first and not wait for you appointment at HEI. Get the parameters from HEI so the CT place you go to does the scan that HEI wants. Keeping in mind, I am not a medical provider, I am a lawyer who knows a LOT of people with CIs and probably 35-40 of the appeals I have done are for meningitis cases which is why I am so familiar with ossification "worst case scenarios". I know at least 3 of these appeals the insurers dragged their feet so long to approve that ossification did set in to the point where optimum results were not achieved. That's not a huge percentage in the grand scheme of things, but you sure probably don't want to be one of those 3 . . .

Sheri
Click to expand...

Thanx for this info.

The CT is, I gather, supposed to be done *at* HEI. We are getting on their case to make with the referral, already.

So, you are an attorney, too? Do you do PI?

I used to do insurance defense, and, I have to admit, as an insurance defense attorney, I tended to look down upon PIs as "ambulance chasers" -- but, honestly, with the failure of doctors to take care of important, time critical paperwork for my treatment (this is about the 3rd screwup, that I know of, that I've had to deal with so far in my treatment), P.I. attorneys are gaining more esteem in my book -- when doctors are this highhandedly negligent in matters involving their patient's recovery, they *deserve* something more than merely being taken to court -- unfortunately, trial by *ordeal* is no longer an option!
 
I've seen some things online, saying that ossification can start within that period, and makes it impossible to do the CI.
Click to expand...
I thought that there was an implant that could somehow bypass the ossicfication?
Actually I thought that the implant didn't work as well if there was severe ossification.
 
Med-el has a "split electrode" implant which is frequently use when severe ossification is present. When the ossification is complete, the only option is an ABI (Auditory Brainstem Implant) much more invasive surgery than a CI, not covered under all insurance plans, and HEI and one other place (maybe Hopkins? are like the only two places in the US you can get them). Though I don't know anyone with an ABI, I've read the result potential isn't nearly as high as a CI, you really don't get open set speech reconigition, just sound awareness. So this is an option you really don't want to have to use.

deafdyke said:
I thought that there was an implant that could somehow bypass the ossicfication?
Actually I thought that the implant didn't work as well if there was severe ossification.
Click to expand...
 
I had an e-mail / voice mail exchange with the coordinator for the adult CI program at HEI. She faxed me the prescription you need to get your CT before your referral/appointment at HEI. E-mail me at advocacy@letthemhear.org so I can forward it to you.

Go get that CT !

Sheri
 
LTHFAdvocate said:
Med-el has a "split electrode" implant which is frequently use when severe ossification is present.
Click to expand...

In addition, Cochlear has a "double array" CI which is used for the same purpose. (I'm not trying to push one CI brand over another...just thought I'd mention this for those who may not be aware.)

I don't know if Advanced Bionics offers something similar. (Perhaps Boult knows?)
 
Good to know, thanks. I try to be scrupulously implant manufacturer neutral.

Sheri

Hear Again said:
In addition, Cochlear has a "double array" CI which is used for the same purpose. (I'm not trying to push one CI brand over another...just thought I'd mention this for those who may not be aware.)

I don't know if Advanced Bionics offers something similar. (Perhaps Boult knows?)
Click to expand...
 
I just received an e-mail from an AB user I know.

She said Advanced Bionics' Hi Focus and Helix electrodes work for people with severe ossification. (AB does not have a special electrode designed for people with severe ossification.)

She also mentioned that the surgeon's skill is very important. If a surgeon is proficient with all three devices, he/she will be able to implant any of them.

If the surgeon is only proficient with one device then that would most likely be their choice. It should be the surgeon's call -- and the surgeon's comfort level.

If one surgeon says no to something, it doesn't mean another surgeon will feel the same way.

Hope this information helps! :)
 
Aleser said:
Are you currently using the strongest hearing aids possible? How many Db is your loss?

cochlear implants can be great for late-deaf people, but like any surgery, especially one involving your head- they carry risks. You have to understand that you'll never hear your music in the same way again. Weigh that against the pros (not needing to learn sign or speechreading?) and make a choice that you and your doctor feel is best.

Good luck!
Click to expand...

Well ... if all it gives me is the ability to hear people *talk* again, that would be a major improvement, to say the _least_!
 
LTHFAdvocate said:
Ossification rates range from 20 % to 80 % with meningitis, so there is a significant chance you are completely in the clear. I don't want you to panic, I do want you to realize it is an issue. Different types of meningitis have higher rates of ossification associated with them, was your meningitis bacterial or viral?

Once ossification sets in, it can range from making the implant surgery difficult to completely impossible. Usually it is "just difficult", sometimes extremely difficult. Difficult can range from the surgery taking a lot longer, but getting a full insertion of the electrode (meaning you get the same chance of good results as anyone else) to only partial electrode insertions. Everyone reacts differently to partial insertions, I know some people who think the results are not very good, and others who think the results are a miracle and have open set word recognition, even though both had the same implant with the same number of electrodes partially inserted. Obviously there are variables at work here that are not always visible that we don't always understand. I've also heard anecdotally that some people have a harder surgery recovery if they had partial ossification, there is a lot more drilling involved (i.e. they have to drill the ossified bone out of the cochlea to get the electrode to go in) and I think that is associated with higher vertigo and tinnitus rates post surgery, but I don't personally know of any cases where the vertigo or tinnitus has been permanent.

If it were me, I would honestly get the CT first and not wait for you appointment at HEI. Get the parameters from HEI so the CT place you go to does the scan that HEI wants. Keeping in mind, I am not a medical provider, I am a lawyer who knows a LOT of people with CIs and probably 35-40 of the appeals I have done are for meningitis cases which is why I am so familiar with ossification "worst case scenarios". I know at least 3 of these appeals the insurers dragged their feet so long to approve that ossification did set in to the point where optimum results were not achieved. That's not a huge percentage in the grand scheme of things, but you sure probably don't want to be one of those 3 . . .

Sheri
Click to expand...

I have done what you suggested -- got the CT scan and the MRI, and taking them into House next week.
 
CI are basically a device that "funnel" sounds to individual electrodes. For example, Nucelus 24 or Freedom have "dual" electrodes which are 12 of them (24 electrodes total, it's just side by side in case if one electrode miss the nerve spot, other electrode on it's side will "sit" on nerve spot) Your brain have to re-wire nerve to new area where electrodes sit on.. Octave and sound may be a little bit confusing cuz it sound the same in CI. What I am trying to explain is that.. the lowest sound on first electrode may be a train engine rumbling while thunderstorm rumbles funnels on same eletrode. High pitch sound may be a microwave beeping and piano's near to last key funnels on last electrode. But Octaves are discernable tho.. I hope you get the contempt of it..

It is not exactly what you hear what you used to hear. Some CI wearer reported as a "robotic" sound. I don't hear robotic sound. I guess it could be a CI brands like Nucelus, Med-El, and Bionic..

Remember Everyone's CI hearing are varible.

I personally used to hear 80% of sounds while wearing Hearing Aid on my right ear all my life until 3 years ago. My hearing went bad and I got vertigo and sick out often. 2 weeks later I had appointed CI surgery that I planned few months ago (what a coindice!!). After CI surgery. I did not feel dizzy or pain. I just felt dull pain on stitches. I was up and about 2nd day and 3rd day, I went out with my wife and kids for fun. I had a strange feeling inside my right ear that it felt like something was stuck inside LOL.. 2 weeks after sugery, I got my first turn on. I heard was a "minnie mouse" or "tinny sounds" which is a mono sound. Everything sound the same. After few remappings (I had 8th in 6 months). I began to hear full range of sounds. I realized it's not the same what I hear with my HA.. It was much better than my HA cuz I picked up 20% MORE sounds I've never heard in my life!! The first time I heard was Clock ticking!!! Later, I heard pop fizzing after pouring in cup, watch alarm beeping, pin drop close to me (my audie dropped the metal ear hook from BTE CI processor on table while I was wearing Body Processor). One sound that took me a YEAR to figure out what I was hearing often after I got home from work was a truck's radiator gurgling!! I gave up trying to find where it came from till I asked my hearing daughter where is that!! She pointed quickly and it's a radiator making noise! I thought it was the garage door spring making soft popping sound! LOL

One thing is that what I used to is no longer for me is that I used to understand what other people talking behind me and understand what being said on phone while on HA. With my CI, I couldn't understand cuz of the sound funnels into individual electrodes which made it hard to discern difference between pitches of voices. I knew what it like but not able to do it. My wife and my family even friend encourage me to take listening training. I told them it's not what they think would improve my listening. No matter how hard they train me IF I had opportunity to do so. I still won't be able to catch on. That's one drawback for me on CI

BUT SOME CI wearer can use phone normally and able understand people behind them.. So I cannot promise you that it'll be like that. it's like a gamble. Give it a try on one ear. If you love it, then have 2nd on other ear..

Hope you can consider risk and benefit on CI

Good Luck!
Catty
 
purplecatty said:
It is not exactly what you hear what you used to hear. Some CI wearer reported as a "robotic" sound. I don't hear robotic sound. I guess it could be a CI brands like Nucelus, Med-El, and Bionic..
Click to expand...

Hearing robotic, Darth Vader, Alvin and the chipmunks or metallic type voices has to do with the brain's adjustment to a new way of hearing sound. In other words, the brain needs to become used to hearing frequencies and sounds that it hasn't heard before or in many years. Over time, (in most cases) voices and sounds become "normalized" meaning that they sound very close to or exactly like what a person remembers before losing their hearing.
 
Further Update -- Music with CI?

I've been to House, and approved as candidate for Cochlear Implant.

My right ear is in the clear ... there are some of the beginning signs of ossification in the left ear.

Given the delay I experienced in getting my referral to House, they have marked my file as an "emergency".

Now, I'm just waiting for the insurance company to approve.

... If I have to put up with people sounding like Darth Vader for awhile, until my brain gets adjusted to it, that will be an improvement. My wife and I have learned a little ASL, and we have notepads and dry/erase boards in every room of the house, but its just not *equivalent*.

Are any of you musicians? If so, what has been your experience, in terms of being able to play, or listen to, music again?
 
Hyperion,

Congratulations on your CI candidacy! :)

I've had my first CI for 2 1/2 years and my music enjoyment has been very positive.

100% of what I hear (in regards to music and speech) sounds exactly as I remember with hearing aids -- only it is much clearer.

In the beginning, I could only hear percussion, but over time, I was also able to hear lead vocals, single instruments and eventually all of the different layers of music including harmony, melody, lead vocals, background vocals, instruments being played alone or in unison, intonation and pitch.

I enjoy listening to all kinds of music from jazz to heavy metal. Music was a very important part of my life before I lost my hearing and I consider myself to be blessed to be able to enjoy it once again.

Different people have varying experiences when it comes to music. Some people like myself hear it normally while others say it sounds off key or like cats and dogs fighting.

One of the best things you can do once you receive your CI is to practice listening to music daily. The more often you listen, the clearer and more enjoyable music will become.

By the way, I'm also taking private voice lessons and have been doing so for the past 2 1/2 years. I have no problem following the accompament (sp) of the piano nor singing in tune. I sing 1st soprano and I'm just now starting to work on foreign vocal pieces. It has been an interesting experience and one that wouldn't have been possible without my CIs! :)
 
Hear Again said:
Hearing robotic, Darth Vader, Alvin and the chipmunks or metallic type voices has to do with the brain's adjustment to a new way of hearing sound. In other words, the brain needs to become used to hearing frequencies and sounds that it hasn't heard before or in many years. Over time, (in most cases) voices and sounds become "normalized" meaning that they sound very close to or exactly like what a person remembers before losing their hearing.
Click to expand...

Very true. The late deafened tend to compare the sound through the CI to the sound stored in their auditory memory, and therefore, have difficulty interpreting the newer perceptions into something meaningful. They need time to override their old auditory memory.
 
Back
Top