CI's...for those who have gotten them

http://groups.yahoo.com/group/ProblemCI/....here is a group for you to join. I definitly think it's VERY important to get both sides of the story, (and this is not an extreme Deaf culture list) for a fair and balanced view. Also by joining this group, it might give you an idea of potential pitfalls and problems to watch out for.
 
I know that list. It's for those who have problems with CI. We all know that CI can sometimes cause not to be successful sometimes. We also know that the CI can be successful the majority of the time.

It's a risk. I choose to take it, and it's been successful in my own way. It's an individual success when it works. I choose to talk to both sides before my CI surgery.
 
I choose to talk to both sides before my CI surgery.
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That's why I posted the link. I'm not pro-deaf culture biased. I simply think some people are overhyping how wonderful the CI is. Some of the people out there who push CI make it sound like it's perfect and works at hoh levels for practically everyone!!!! ..I just think that more people should receive a fair and balanced and realistic view of what a CI can do.
 
oh well i dont know abt this.. cuz of i heard a lil boy who was 3 yrs old died cuz of destory his brain from that CI and i dont know how cause this.. hard for me to trust !
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Where did you hear this information? Do you realize that this could be a rumor or a misunderstanding? I have read and read and never heard of anyone dying from a CI brain infection. The CI surgery DOES NOT involve the brain. It's the ear alone that they must open through the mastoid bone which is right behind the ear bypassing the outer and middle ear in order to get the about 3 inch flexible wire through the cochlea. It does NOT involve the brain.

There was a very small incident about last year that a girl died of a meningitis outbreak. They say that if you had meningitis, sometimes the fluid is in the cochlea, and if opened it could spread again and you could get sick again. Meningitis is also a virus, so it can stay in your body for years before you ever see symptoms, if ever. This stuff did not occur so often. That's why the company started to reimburse anyone who needed the vaccination to prevent this. I had it just to take precaution. It's not an occurrence that happens often.

I am not sure if that's the case that you heard about the boy dying from a brain infection. You know how rumor can sometimes be misinterpreted and the Deaf Community can change the wordings and use brain infection. The brain is not exposed during the operation. It could be that they got sick from meningitis, not a brain infection.
 
How do you know that people are not doing their research? It's their problem to research all sides. I hear everything, but I was smart to do research on both sides. It's their responsibility. If they say it's wonderful, then it is. They are talking about themselves. I am not sure that they say it's for everyone. I never heard this. I can tell you that I did research for a few years before I got my CI, and I researched practically every CI website I could find. I think that you feel that this is the impression you get, but I know people say it's wonderful because for them it is. You just have to be smart enough to think for yourself just like every surgeries everywhere. Dr. Niparko said that at his hospital 97 percent are successful with their CI. I am not sure why people are being so hyped about the CI. There's nowhere were it doesn't say that there might be chances of failure. I knew that very well, and they present it very well.

The CI team told me that the most I should expect is to lipread better which is what happened. They question if you can use the phone just to see if you hear more than they think or the test show. Do you know that Miss American Heather Whitestone uses the phone on her HA side? Yet, she got a CI? She still uses her HA side for phone use. She improved in understanding her children and their cries which HA, on the other hand, cannot do. There are things HA cannot do. I don't see the CI as something entirely different from any other operations that could improve your life.
 
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I agree with everything you said, HelloKittyGal. I am not even expecting something wonderful and miraculous to happen with the CI. I have talked to others, and I've also talked to experts, and I fully understand that there are upsides and downsides to CI's. I understand the minimal benefits that I'd be likely to get from the CI. I'm not expecting to hear normally and be able to talk on the phone. I really have nothing to lose in my left ear, so I am willing to go for the CI. I am looking at it as a possible chance for at least SOME benefit (such as better lipreading, which the audiologist believes I have a good chance at if I work hard with it), and at the same time I am being rational.

BTW, Hello Kitty is awesome :)
 
HelloKittyGal, Sigh.....you misunderstand me. I simply think that some people overestimate the capabilties of the implant. Many people do do a lot of research (and the only reason I provided that link was so whitedove could do a bit of research on the not so sucessful cases, so she could be prepared for any problems, issues and or concerns) Hey...if someone posted raving about digital aids, my reactions and responses would be the same. Sure digital aids rawk for some people, but not everyone gets the same results from digis. There are people who hate them or who say that they are esentially the same as analogs!
Besides, did you know that Coachler pays implantees to rave about their implants?
I knew that very well, and they present it very well.
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Now they do....a few years ago they were presenting it(in the media) as a "cure" and they made it sound like you could hear everything with it. Now the language used is lots more real-life. They now say that the best case scenerio is usually hearing at "hoh" levels....and results are all accross the board. Plus sucess for someone isn't nessarily sucess for another person. Even over at HearingExchange, they admit that while some people can hear VERY well with CIs, others can only percieve enviromental sounds, or improve their speechreading or whatever!
 
Yeah, I am sure maybe some are paid to rave about CI and the CI company advertise things as products. I hate that to which is why I do research, but...so are any other devices and pills out there? It's sad, but true. Then again, why focus on the past? Every device has made it's good and bad experiences. Why should CI be an exception?

I am sure whitedove is doing both sides of research. I dunno, I think you are acting like a CI is so different from birth control pills and insulin pumps. The company needs money to keep the company alive, I guess. I just think we need to educate the companies and hospitals CI teams, not us deafies.
 
I dunno, I think you are acting like a CI is so different from birth control pills and insulin pumps.
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They are all medical treatments yes, but CI is very indivdualistic in it's "sucess" whereas birth control pills and insulin pumps have such high rates of sucess that an indivdualistic perspective is not really needed. Does that make any sense?
 
It may be an individualistic success, but so are other devices out there. What exactly makes the CI so different from other devices? There are other ones out there that I can't specifically name that are just like the CI. The Deaf Culture just makes it so individual. Why is it that the deaf community is so against it with many contradicting excuses? First, they say that the CI should not be implanted because it will make their culture extinct or that deaf people should be deaf because it's a gift from God. Second, they say that it does not benefit a small portion of the population to which they only see because the ones that don't like it or succeed or don't wear it because of pressure are the ones they see and are more likely to be the ones to point that it's such a bad thing. Third, the deaf culture thinks that deaf children should not have implants, but adults should, yet they say that people should be deaf because God made you that way? What is so wrong with those thinkings? They are silly!

There was a deaf girl who I talked to from a school for the deaf because I wanted to talk to those who did not like it. This girl is confusing. She said she got it at six years old and was happy to get it. Then she went to a school for the Deaf because of bad behavior. She brings up a lot of things that you don't even know what's her true feelings. She said that the teachers voice makes her eyes vibrate. She said that deaf students there make fun of her. She also said that she only wears it for music at home. She also said that she might start wearing it again because her boyfriend wore it. I talked to her boyfriend before they became a coupe and he had good family support and likes the CI--told me he could talk on the phone with families with the adapter. The girl also said she missed so many of her CI mapping appointments and therapies....does that mean that it didn't work for her? Probably not! The lack of updated mappings is probably the cause of her eye vibration and the lack of support which is consistent therapies would have made her use it daily rather than stop it because of deaf "pressure." Do you see why I think it's so silly to think of the CI such an "individualized" success and that we should take much more precaution? It's so contradicting. I don't think that the CI is THAT much different from other devices out there. Life's a risk sometimes and life is no guarantee either.

It's also not a lie that the CI works the MAJORITY of the time with the exception that it's individualistic, but so are hearing aids. When a CI doesn't work, it doesn't mean that you can't talk on the phone or yadda, yadda. It simply means that they cannot make sense of the sounds or it doesn't sound well, but that's ONLY if you tried it for about a year before you said it doesn't work. It can take as long as 6 months before the CI sounds normal for certain people.

There was a little girl from a video that was old enough to talk better. She had hearing aids, therapies and FM system. Her speech was very unintelligible. Then the parents decided to get a CI for her, she is speaking brilliantly today.

How much more can we be MORE careful if we don't take some of the risks? If someone gains success with HA, but wants more with CI why not? It requires surgery, but that's all we have so far until the meantime.
 
I also think that you should not only provide problem ci but prelingual ci yahoo forums because I don't think many will take you that serious if you just provide the negative side. I understand what you wanted to do, but you know the results can be good too which we all want to know also.
 
Few years ago, I've thought about having c.i. then I dropped it because that time there were not much information abt c.i. Now, they do have alot and much more tech too. I researched on the internet and asked my friends who have c.i. I also asked the audiologist at the hospital where they provided c.i. I decided to have one. I start going to the hospital for hearing test last April without hearing aid then again in May with hearing aid. Had cat scan in June, had MRI last week July 7th. I also had the meningitis shot from my physical doctor. If no shot then no surgery. The surgeron at the hospital said all reports were all set and made an appt for surgery. I had surgery last Thursday July 15th. I had to stay overnight at the hospital to make sure no naueous and dizzy. If it continues then I had to stay another night but I only had naueous for couple of hours.

I had to be at the hospital at 6:30am and the surgery start at 8:30am. 4 hours later, I woke up and saw the time it said 12:40pm. The first thing I said when I woke up was "I have to throw up" They gave me the pan and I threw up.. ugh! They had tube inside my lung while I was out, and took it out before I woke up. They put me in the recovery room for an hour then put me upstair where they got me a bed by the window.. I kept throwing up then finally it stopped when they gave me the medicine for naueous. My friend Jean with her mother stopped by. Jean knew how I felt. She went through when she was 16 yrs old. I felt so bad that I wasn't a great company when they were there. They did understand. So they stayed for an hour. The surgeron came by to check on me and told me everything was fine. I was relieved. I was worried about my blood pressure. She said it was fine. At night, it was so painful and I was going to cry. They gave me the pain pills without morphine. The pain were stopped. I could sleep well all night long.

Next morning, the surgeron with her medical students stopped by. She asked me if I had dizzy. I said "No, I walked to the bathroom by myself this morning because the nurse said I don't have any dizzy." The surgeron were so happy to hear it. She took the bandage off. That was it. She wants me to stop at her office next week to check up. In couple of hours, I went home and lay down on my bed. It was good to be home with my cats and on my bed. My cats knew I am sick. They slept with me. They "take care of" their mommie.

The surgeron gave me the "Patient Identification Card" That the card I have to carry with me all the time, if I have an accident or was order to have MRI in the future. The card can show the doctor or nurse at the hospital that I have C.I. and also explain to them that they can take the magnet off before I take MRI.

Yesterday, I woke up and felt something leaking. I patted the scar with the tissue and saw few drops of blood. I got worried. My friend Carole (shes hearing) paged the surgeron. The surgeron called back. Carole explained to her about the little blood. The surgeron said that was okay. I felt so relieved it was okay. Later on that night, my cochlea was throbbing so bad. I was in such of pain. I took medication. Finally it calmed down I went to sleep at 4am. I slept every 2 hours. I tried to stay more than 2 hours but I couldn't stay in one position to sleep, it was not comfy. I stay on my left side to sleep and tried so hard to not turn to the right side. I alway sleep on my right but now I couldn't for a while. What a tough. Today, the only pain is my scar. It isn't that bad.

My "Turn it on" appt is on August 18th and 20th.


For a long time I never thought I would get one somehow something got me change my mind and got me one already. :)
 
Lianca, may you have a wonderful day on appointment day. Don't expect anything, but be okay with whatever happen and take it easy. I didn't understand a crap with my CI when one woman spoke until I put on HA. Make sure you get into auditory training and do it daily for at least an hour. Eventually, you'll notice a difference. Don't put off what you can get early!

I had a similar story. My pain was stopped before it ever started because they gave me the pain meds. I threw up once, but I was completely dizzy, then it subsided everyday. The scar is not bad either. It is 3 inches horizontall above my neck and a little above the hair line. Quiet different. I was very surprised but pleased. It took me a long time to feel normal as I always had because sometimes I'd be dizzy if I walked fast or felt like a balloon floating.

Well, Take care!
 
Lianca said:
Few years ago, I've thought about having c.i. then I dropped it because that time there were not much information abt c.i. Now, they do have alot and much more tech too. I researched on the internet and asked my friends who have c.i. I also asked the audiologist at the hospital where they provided c.i. I decided to have one. I start going to the hospital for hearing test last April without hearing aid then again in May with hearing aid. Had cat scan in June, had MRI last week July 7th. I also had the meningitis shot from my physical doctor. If no shot then no surgery. The surgeron at the hospital said all reports were all set and made an appt for surgery. I had surgery last Thursday July 15th. I had to stay overnight at the hospital to make sure no naueous and dizzy. If it continues then I had to stay another night but I only had naueous for couple of hours.

I had to be at the hospital at 6:30am and the surgery start at 8:30am. 4 hours later, I woke up and saw the time it said 12:40pm. The first thing I said when I woke up was "I have to throw up" They gave me the pan and I threw up.. ugh! They had tube inside my lung while I was out, and took it out before I woke up. They put me in the recovery room for an hour then put me upstair where they got me a bed by the window.. I kept throwing up then finally it stopped when they gave me the medicine for naueous. My friend Jean with her mother stopped by. Jean knew how I felt. She went through when she was 16 yrs old. I felt so bad that I wasn't a great company when they were there. They did understand. So they stayed for an hour. The surgeron came by to check on me and told me everything was fine. I was relieved. I was worried about my blood pressure. She said it was fine. At night, it was so painful and I was going to cry. They gave me the pain pills without morphine. The pain were stopped. I could sleep well all night long.

Next morning, the surgeron with her medical students stopped by. She asked me if I had dizzy. I said "No, I walked to the bathroom by myself this morning because the nurse said I don't have any dizzy." The surgeron were so happy to hear it. She took the bandage off. That was it. She wants me to stop at her office next week to check up. In couple of hours, I went home and lay down on my bed. It was good to be home with my cats and on my bed. My cats knew I am sick. They slept with me. They "take care of" their mommie.

The surgeron gave me the "Patient Identification Card" That the card I have to carry with me all the time, if I have an accident or was order to have MRI in the future. The card can show the doctor or nurse at the hospital that I have C.I. and also explain to them that they can take the magnet off before I take MRI.

Yesterday, I woke up and felt something leaking. I patted the scar with the tissue and saw few drops of blood. I got worried. My friend Carole (shes hearing) paged the surgeron. The surgeron called back. Carole explained to her about the little blood. The surgeron said that was okay. I felt so relieved it was okay. Later on that night, my cochlea was throbbing so bad. I was in such of pain. I took medication. Finally it calmed down I went to sleep at 4am. I slept every 2 hours. I tried to stay more than 2 hours but I couldn't stay in one position to sleep, it was not comfy. I stay on my left side to sleep and tried so hard to not turn to the right side. I alway sleep on my right but now I couldn't for a while. What a tough. Today, the only pain is my scar. It isn't that bad.

My "Turn it on" appt is on August 18th and 20th.


For a long time I never thought I would get one somehow something got me change my mind and got me one already. :)
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By the way Congs. On getting ur CI And I hope you like it too. It is going to get tough before it will get better. Malfy had the same problem before and things got better for her after her second one. I am happy for her and for you too and Hope you will enjoy your CI... Can you be able to hear sounds now or a little? Or does that take time for that?
 
Cheri said:
By the way Congs. On getting ur CI And I hope you like it too. It is going to get tough before it will get better. Malfy had the same problem before and things got better for her after her second one. I am happy for her and for you too and Hope you will enjoy your CI... Can you be able to hear sounds now or a little? Or does that take time for that?
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Thanks Cheri.. Yes I spoke to Malfy abt hers and mine. Whenever I need to talk to her abt my c.i. I alway find her online and ask her questions. :)

Cheri, right now, its healing for next 3 weeks (really its 4 weeks) then will have "turn it on" appt on Aug 18th and 20th. I will be able to hear it but was told that I will not like it at first bec it is first time turn it on. I will get used to it. I will definately let u know more when I have my "turn it on" appt on Aug 18th and 20th.. :)
 
Lianca said:
Thanks Cheri.. Yes I spoke to Malfy abt hers and mine. Whenever I need to talk to her abt my c.i. I alway find her online and ask her questions. :)

Cheri, right now, its healing for next 3 weeks (really its 4 weeks) then will have "turn it on" appt on Aug 18th and 20th. I will be able to hear it but was told that I will not like it at first bec it is first time turn it on. I will get used to it. I will definately let u know more when I have my "turn it on" appt on Aug 18th and 20th.. :)
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You are sure Welcome;).. Now I understand how that works and Thanks for responding back to me.. It's good to talk to someone who has Ci and I am glad Malfy is there for you to help you with what you need to know. :ily: Please do keep us posted we would love to hear how you are healing and everything... It would be nice to hear things again for the first time I bet you will be so happy to be able to hear ur cat saying meow.. LOL!
 
Cheri said:
You are sure Welcome;).. Now I understand how that works and Thanks for responding back to me.. It's good to talk to someone who has Ci and I am glad Malfy is there for you to help you with what you need to know. :ily: Please do keep us posted we would love to hear how you are healing and everything... It would be nice to hear things again for the first time I bet you will be so happy to be able to hear ur cat saying meow.. LOL!
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LOL well I can hear my cats meowing and others with my hearing aid on my left ear but not the same sound when I'll have c.i. on. I was told that HA and CI sounds are different. ;) :ily: back
 
Lianca said:
LOL well I can hear my cats meowing and others with my hearing aid on my left ear but not the same sound when I'll have c.i. on. I was told that HA and CI sounds are different. ;) :ily: back
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Congrutalution Lianca for your having CI... yes I have to agree that it does sound different..

I am still learning with mine every single days, I haven't give up, but notice I do better now lately because I got more time to learn and listen now than during winter time.. In winter time I had to take my son to the hospitals for his medical appointments (too much to list lol but he has brain tumor however he's doing better now).. Anyway That is very great that you do have a friend to talk with if there was something that you like to know I would done the same if I find a time to do but with three kids and medical, and I just end up doing myself, but notice I do improve a little more.. My friend Norman said "man you heard me say that Damn you surely improved lately" SO I will be very glad once I get remapping this friday to get my ci "update" i have notice few things and I want to get it done properly that can make me feel satisfied!

So Lianca please do update with many of us on how you are doing :)

Wendy


Psst Cheri is your IM still the same or new ? If new IM me at the very same one or my tmail -- wbaker@tmail.com
 
I have had my CI for over 4 years now.

HelloKittyGal said:
There was a little girl from a video that was old enough to talk better. She had hearing aids, therapies and FM system. Her speech was very unintelligible. Then the parents decided to get a CI for her, she is speaking brilliantly today.
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Interesting, perhaps that girl didn't get enough and proper speech therapy sessions. Reason why I said this is because I received intense audio and speech therapy from age 5 until 15 with hearing aids, sessions with an audiologist to practise on my listening and speaking skills. My speech was and still is very clear and understood by others around me.
Upon obtaining the CI, my listening skills did go up quite a bit -- my speech has always been clear and consist. Therefore, not much has changed with my speech comprehency.

It really varies from person to person whoever gets a CI -- and how well they respond to audio and speech therapy.
 
Interesting, perhaps that girl didn't get enough and proper speech therapy sessions.
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Yes, I always wonder that about every deaf person. The video was free from the Oral Deaf school in Missouri. I am not sure if they still have free copies. The girl had very, very unintelligible speech. It was very obvious and very different from now than before. However, I can say that I am happy for the girl because she can hear without lipreading and that must have made her life easier because she would seem to need less time in therapy. She speaks like any normal kid. I am not sure how old she was at the time---maybe 9? Or less? It's really a good feeling to see her do well with it.
 
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