Anyone who didn't benefit from CI or don't like it?

I know of a 12 year old boy in England with a CI who races motocross in an amateur class. He has had several accidents, but none of them harmed his CI. Motocross racing is a very tough sport. It has a decent % of recieveing some hard blows to the body and head. His parents purchased a very good helmet to protect his little head. They feel confident (after talking to several doctors) that his CI will be ok.
I am an avid motorcycleist, I have been riding dirt and street since the 3rd grade. I would let Lilly ride, but I would be VERY hesitant to let her race.
 
Lillys dad said:
I know of a 12 year old boy in England with a CI who races motocross in an amateur class. He has had several accidents, but none of them harmed his CI. Motocross racing is a very tough sport. It has a decent % of recieveing some hard blows to the body and head. His parents purchased a very good helmet to protect his little head. They feel confident (after talking to several doctors) that his CI will be ok.
I am an avid motorcycleist, I have been riding dirt and street since the 3rd grade. I would let Lilly ride, but I would be VERY hesitant to let her race.
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Deaf CI student I work with races dirt bikes, and luckily hasn't had any negative experiences. Must say, though, the thought of it, from a parent's perspective, scares the hell out of me. But, when I tell him it worries me, he just laughs at me and sign, "Not worry! I'm fine! Careful."
 
cduskey said:
atabr5..The only downfall that I have heard from some people is about sports. I have a boy, a very active boy. In our family, we love baseball, dodgeball, motorcycles, all that fun but rough stuff and I worry about what if my son one day wants to do those sports?
Courtney D.
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I ride, I wear a helmet with no problem. I 'may' put a small indent where the reciever sits on my head since I can only tolerate it for short periods of time and thus end up riding deaf. :)

Baseball also usually requires wearing a batting helmet so no problem there. Not sure about dodge ball but even with that I would think a bicycle type helmet could be worn if necessary. The only sport that would actually be prohibited is diving and that can be done down to a certain depth.
 
What about scuba diving?
 
Thanks for the information about sports. Just a question though, is the reason they caution because of actual damage to your head where your CI is or because of damage to the internal part of the CI itself? There are so many things I read that contradict each other.

Courtney D.
 
jag said:
I ride, I wear a helmet with no problem. I 'may' put a small indent where the reciever sits on my head since I can only tolerate it for short periods of time and thus end up riding deaf. :)

Baseball also usually requires wearing a batting helmet so no problem there. Not sure about dodge ball but even with that I would think a bicycle type helmet could be worn if necessary. The only sport that would actually be prohibited is diving and that can be done down to a certain depth.
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shel90 said:
What about scuba diving?
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Cochlear Implant Myths & Realities

scroll down to: "Myth People with Cochlear Implants can't go swimming."

just that "Deep Sea Diving" is not recommended that's it. normal swimming and diving plus recreational scuba diving is fine.
 
cduskey said:
Thanks for the information about sports. Just a question though, is the reason they caution because of actual damage to your head where your CI is or because of damage to the internal part of the CI itself? There are so many things I read that contradict each other.

Courtney D.
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Both. The first because one can experience potential infection or shift the electrode or receiver itself where the CI is either not very effective or not effect at all. The second because it could happen with enough force especially where the magnet and receiver lie right underneath the skin. As for the electrode, it would take a severe impact to damage it. Anything is possible.

So the moral of the story is to protect yourself and not take unnecessary chances. Just determine the risk factors and go from there...
 
I am late deafened and have CI now for about 8 years. It works great for me. It's not perfect but than what is?
 
shel90 said:
U said it is very rare for a CI to have a negative impact on the candidate? What is your definition of rare? The reason I am asking is since I am very involved in deaf education and with the deaf community, I have met just about as many people who had bad experiences with their CIs just as many people who had a good experience with their CIs.

What is your source that this is rare and what is the actual percentage that defines "rare"? To me, it is just as common as successful CIs from my personal experience. Maybe your definition of rare is different from mine?
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Define what is considered bad experience? Did they expected too much from CI as a miracle cure-it-all that can make them hear like a regular hearing person? Did they expect to hear clearly within the first day? Did they choose it for the wrong reason like someone pressure them to have it done? Did they just don't like it because it make them feel that their deafness is not accepable (you know, make them feel that hearing don't like their deafness and don't accept them as the way they are) ? There are many reasons why deaf don't like their CI based upon their personal feelings. If they say they can hear sounds from it but couldn't understand it, it is probably they haven't gave enough time or mappings, or their level of deafness is unique, or their ability to understand spoken language is low.

Now I have heard people get tinnitus really bad from CI
 
atabr5 said:
I want to hear opinions of those who have had the CI. Is there anyone it didn't work for or who regrets having it done? I am a candidate and want all the info and opinions I can get before this life changing decision is made. I want opinions of adults who have it. Or those with children who didn't benefit from it. Thanks to anyone who posts!
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Well my friend, I know this is a tough decision. The reality is that there are no guarantees. If anyone tells you otherwise, they are lying. My child had two implants and neither worked. I am hearing more and more of CI failures where the person implanted is not getting any benefit from the CI for many different reasons. Having said that, there are also many success stories as you will see on this board. I know that doesn't make your decision any eaiser and I wish you all the best of luck. At the end of the day, it's gonna be a crap shoot just as much of life is. An important thing to remember is that once you go with an implant, there is no chance of ever going back for the implanted ear. In other words, you will loose any residual hearing in the implanted ear. I hope you are confident in your choice and I hope that no matter what your decision is, that you are comfortable with it. If you learn as much as possible, you should have no regrets regardless of your decision.
 
Rockdrummer pretty much said it correctly, the one thing I may partially disagree with is the loss of residual hearing. They are reporting more and more CI users retaining a portion of their residual hearing. The Freedom CI array was designed a little differently thatn the others. Instead of having a more rigid tip on teh array, it is rounded, and much softer. They have found that this is preserving hearing. Two reasons users lose residual hearing is due to damage on the inside cochlea wall, and when the hole is drilled through the cochlea wall, fluid is lost from the inside. The freedom array tip, by design prevents damage to the inner wall of the cochlea. I have heard that when the array is inserted into the cochlea, it prevents fluid drainage. More and more people are reporting that they are retaining residual hearing after getting a freedom CI. In fact, a few weeks ago, my daughters school had a parent workshop. One of the speakers is the audiologist for St.Louis Childrens hospital CI team. She talked about several things including new products that are being developed, and some that are complete, just not on the market yet. She told us that Cochlear Corp. (freedom CI) is working on develpoing CIs that do a better job at retaining residual hearing. There have been enough people tell them that they keep a large % of thier natural hearing. so they are looking at ways to expand on what thye already have.
 
Lillys dad said:
Rockdrummer pretty much said it correctly, the one thing I may partially disagree with is the loss of residual hearing. They are reporting more and more CI users retaining a portion of their residual hearing. The Freedom CI array was designed a little differently thatn the others. Instead of having a more rigid tip on teh array, it is rounded, and much softer. They have found that this is preserving hearing. Two reasons users lose residual hearing is due to damage on the inside cochlea wall, and when the hole is drilled through the cochlea wall, fluid is lost from the inside. The freedom array tip, by design prevents damage to the inner wall of the cochlea. I have heard that when the array is inserted into the cochlea, it prevents fluid drainage. More and more people are reporting that they are retaining residual hearing after getting a freedom CI. In fact, a few weeks ago, my daughters school had a parent workshop. One of the speakers is the audiologist for St.Louis Childrens hospital CI team. She talked about several things including new products that are being developed, and some that are complete, just not on the market yet. She told us that Cochlear Corp. (freedom CI) is working on develpoing CIs that do a better job at retaining residual hearing. There have been enough people tell them that they keep a large % of thier natural hearing. so they are looking at ways to expand on what thye already have.
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Thanks Lily's dad for that clearification. My comments are a bit dated. They are based on technology that is over a decade old. That is good news then and technology has advanced (as it usually does). Thanks again for clearing that up because it may have a large impact on ones decision.
 
rockdrummer and liliesdad

Thanks you two for getting back to the subject. As I have been searching through threads...I have become een more confused. It seems there are 50/50 ...good and bad. The thing that gets me is ...the bad is bad! I wouldn't want to live through that ringing in the ears, headaches, nausea, etc. But, I want to hear. Sooo, I'll leave it up to God. If somehow, someway the CI becomes available to me then I will know what to do. I hope!
Thanks to all who have made suggestions!
 
atabr5 said:
Thanks you two for getting back to the subject. As I have been searching through threads...I have become een more confused. It seems there are 50/50 ...good and bad. The thing that gets me is ...the bad is bad! I wouldn't want to live through that ringing in the ears, headaches, nausea, etc. But, I want to hear. Sooo, I'll leave it up to God. If somehow, someway the CI becomes available to me then I will know what to do. I hope!
Thanks to all who have made suggestions!
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Er...I just want to clarify a couple of things you said to make sure you don't misunderstand the reality of CIs for people who have them.

The ringing in the ears otherwise known as tinnitus is a possible consequence of getting a CI. Typically, most people have it before they get a CI in some form or another. Why?...because generally speaking tinnitus is a consequence of hearing problems not when one has normal hearing (unless one abuses it which unfortunately happens more often than not - i.e., loud music). It can be soft, mild, loud, annoying, and sometimes so bad that one is literally insane. I had it mildly before my CI and after surgery it went totally away. Some people will get it worst afterwards but after a while it calms down to tolerable levels where it doesn't really bother them. Only some get it worst and it doesn't improve later on no matter how long since the surgery. Most people indicate that with the CI on it overpowers the tinnitus and they don't notice it much. It is when they have it off that it bothers them. Given the majority of the people and their experiences from what I seen, it shouldn't be considered a showstopper.

Headaches, on the other hand, are not common manifestations of CIs. I haven't seen too many people that have to deal with that regularly. You might have some who have issues with it but it is uncommon. The reason it might be a problem is simply getting used to hearing if one wasn't hearing much to begin with. In other words, if one isn't used to hearing environmental noises and all that goes with it, then it simply more of a case being overwhelmed hearing all that "noise" and thus the headaches. This typically means people who never wore a HA either because they didn't like it or couldn't use one when they consider a CI. The issue becomes why does that person want a CI as opposed to somebody who is late deafened or somebody who used a HA all his life and his hearing was starting to go. In either of the later cases, they are used to hearing and would like to continue doing so. These people are highly unlikely to develop issues with headaches.

As for the last thing you mentioned which was nausea or dizzyness, you are dealing with more subtler issues. The cochlea has as a part of its anatomy the vestibular apparatus and that pertains to the sense of balance or one's equilibrium. Before a CI is considered, doctors will check for this type of thing. They are quite aware how all that goes together and will not do anything to compound the problem. People with Meniere's disease generally suffer from these symptoms in various ways. The CI itself is typically never directly involved in these issues although the "disturbances" from surgery can contribute to temporary problems until it clears up.
 
Headaches---> I had that for several months. I think it goes with learning new sounds and the brain is stressed. I don't get them anymore :)

tinnitus--> I got those before and after CI. I only noticed at night when everything is quiet. Believe it or not, I play with my tinnitus by making musics. I could make it high pitch and low pitch. Don't ask me how. It's fun! But anyway, sometimes when you are overly tired and not eating healthy, it tend to get worst. I don't hear my tinnistus when I wear my processor (when it is on, of course), but I do hear it on my non - implanted ear alot but it doesn't bother me at all.
 
sr171soars...you have been a big help...you know a lot about this, Thank you
 
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