HOH people who recieved an CI, pls look here!

nightcrickets said:
No, it is the way they were trained. They do give their opinion and some can be mean but most just drop it and let the patient decide for themselves. ..... and they don't like being sued :)
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Yes it's same here in Germany as well because they don't like being sued as well.

*M* cannot sue doctor for "false information" because she signed surgical agreement contract before have CI surgery. This is a problem. To my knowledge, a lot of doctors got us sign Surgical Agreement Contract before have surgery to prevent us to sue them... We can sue doctors if there're missing in agreement contract.

It's people's decision if they don't agree with doctor's opinion/recommendation... It's up to them... If anything happened to them, then they cannot sue the doctors because it's their responsible to make their own decision for not want to have surgery. (example: cancer, etc.)
 
I dont exactly know the criteria for becoming a CI candidate but as I was told by Bionic Ear Foundation that potential candidates are usually assessed based on their hearing and speech discrimination, their ability to hear in various surroundings, the effectiveness of the hearing aids and so on. It must be a long process getting all tests done to determine candidacy.

I have been HOH since age 5 when I had a viral infection. Since then I have been on and off with hearing aids, never benefited much from it though. I would usually feel more comfortable Without hearing aids and lip reading, but little did I realize that I am not hearing the high frequency sounds. Only 5 years back I got fitted with an Oticon Sumo, and since then it has been a rough ride again. I think my hearing aids aid me only up to 40% today, and I have been recommended to consider CI in the near future. But something unfortunate happened last year as well - I started getting tinnitus, and I thought it would get away within a few days, but no it just took off some more hearing off me, and my hearing has gone down again. I am now at the 97Db level, and in the right ear it must be 100Db. It is definitely frustrating for sure, but there is no actual cure to tinnitus. Comparing myself 7 years from now, I could get into group conversations, talk over the phone, etc. Now, I can only have a one sided phone conversation, talk to only ONE person at a time, and It has been very difficult to manage relationships too. I am currently learning the ASL to prepare for any eventuality such as losing my residual hearing. Yeah, I am yet to know how effective the CI is, but I believe those made by Bionic Ear are excellent. I am going to consider it in a couple of years from now.
 
and yeah, I am 90% deaf I think or whatever they say that I am HOH, I dont care! Have a profound loss since childhood, but now I think my hearing in the right ear is getting worse..
 
Liebeling, Ha users and CI users require different things mecically speaking. That is why they are treated differently. The only things they have in common are the fact they they are used on deaf/hoh people, and they help the users hear.

Also, Let me see if I understood your post correctly about doctors. Are you saying that the doctors main concern is money, not patients? If that is your opinion, I suggest you check your facts. Actually, most doctors lose money when dealing with CI. It is not a profitable medical field. They do it because thy can help people. Do they make pretty good money? Oh yeah! But it is not as profitable as you may think. As I said, do your research, and you will see. I knwo of a few ENT surgeons that have gotten out of the CI field, due to financial reasons. Look at it this way, a surgeon makes his money in the operating room right? The average CI surgery takes anywhere from 4-5 hours. That is for one procedure. In that time, if the DR. wanted only money, he could go elsewhere and do 5,6 or even 7 differnt procedures on as many people. It is also a drain on the finances of the hospital because of the operating room being tied up for so long.
CI implantation is not profitable for a DR.
 
I am of the same opinion actually - I don't rely on private practitioners since they go along with the flow of every-changing technology. By profession they maybe ENT surgeons, but when I first approached them for a hearing aid, I was given the most expensive hearing aid available, and yet it didnt help me in the long run. After visiting this same ENT for another hearing aid, he tells me that he no longer sells hearing aids, and always advises his patients on getting a CI since it is the latest technology. But, can all his patients benefit from CI? I dont think so, but he is now only in the CI field, and of course that means he is hell bent on making $$$ only, and nothing else. Also tells me that I need to go for rehab post surgery in Australia since it is not good enough here!!

I don't know whether to trust these private ENT doctors that much, but I prefer going to a bigger hospital or to a reputed doctor where previous recipients of implants have had a good experience at.
 
hugoboss84 said:
I am of the same opinion actually - I don't rely on private practitioners since they go along with the flow of every-changing technology. By profession they maybe ENT surgeons, but when I first approached them for a hearing aid, I was given the most expensive hearing aid available, and yet it didnt help me in the long run. After visiting this same ENT for another hearing aid, he tells me that he no longer sells hearing aids, and always advises his patients on getting a CI since it is the latest technology. But, can all his patients benefit from CI? I dont think so, but he is now only in the CI field, and of course that means he is hell bent on making $$$ only, and nothing else. Also tells me that I need to go for rehab post surgery in Australia since it is not good enough here!!

I don't know whether to trust these private ENT doctors that much, but I prefer going to a bigger hospital or to a reputed doctor where previous recipients of implants have had a good experience at.
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John Hopkins University here in MD has a highly reputable CI center. Maybe u can contact JH?
 
Lillys dad said:
Liebeling, Ha users and CI users require different things mecically speaking. That is why they are treated differently. The only things they have in common are the fact they they are used on deaf/hoh people, and they help the users hear.

Also, Let me see if I understood your post correctly about doctors. Are you saying that the doctors main concern is money, not patients? If that is your opinion, I suggest you check your facts. Actually, most doctors lose money when dealing with CI. It is not a profitable medical field. They do it because thy can help people. Do they make pretty good money? Oh yeah! But it is not as profitable as you may think. As I said, do your research, and you will see. I knwo of a few ENT surgeons that have gotten out of the CI field, due to financial reasons. Look at it this way, a surgeon makes his money in the operating room right? The average CI surgery takes anywhere from 4-5 hours. That is for one procedure. In that time, if the DR. wanted only money, he could go elsewhere and do 5,6 or even 7 differnt procedures on as many people. It is also a drain on the finances of the hospital because of the operating room being tied up for so long.
CI implantation is not profitable for a DR.
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I have question for you...

What kind of HA that your daughter is used to wear before CI surgery? analog or digital?
 
I grew up HOH and wore HA in both ears until the age of 7 where my right went deaf. I was in hearing schools and taught to lip read and oral speech therapy. I was never taught ASL. Then last October, I lost all my hearing in my left ear. Sure it was a big blow to me, but I coped and accepted it. I left my college and went back home. I decided that its time for me to learn sign language even though I'm pretty good at lip reading. My parents, ( mostly my mother) wants me to get checked out to see if I can get a CI. I don't even know its right for me. I do know its right for HER, because she just wants her baby ( me) to hear and not suffer. Being deaf doesn't make me suffer, I'm better now than I was before. I've talked o many people about their opinion about CI many say its not worth it. My mother is worried that I will lose my skills and ability to speak over time since I am now deaf. I think that its absurd!

I don't even know if I'm a good candidate for a CI. How do you even know? By the way the appointment with the ENT is today. I'm nervous as hell!

I remember I had met an ENT 6 years ago. The was routine checkup since I had to switch ENTs ( mine retired). This new doctor told me I have good nerve function than hes ever seen and that he's surprised that I do so well on my HA. Then he turns around and say that I'm a great candidate for a CI. I was offended. I haven't seen THAT doctor since.
 
Busterdogrl said:
I grew up HOH and wore HA in both ears until the age of 7 where my right went deaf. I was in hearing schools and taught to lip read and oral speech therapy. I was never taught ASL. Then last October, I lost all my hearing in my left ear. Sure it was a big blow to me, but I coped and accepted it. I left my college and went back home. I decided that its time for me to learn sign language even though I'm pretty good at lip reading. My parents, ( mostly my mother) wants me to get checked out to see if I can get a CI. I don't even know its right for me. I do know its right for HER, because she just wants her baby ( me) to hear and not suffer. Being deaf doesn't make me suffer, I'm better now than I was before. I've talked o many people about their opinion about CI many say its not worth it. My mother is worried that I will lose my skills and ability to speak over time since I am now deaf. I think that its absurd!

I don't even know if I'm a good candidate for a CI. How do you even know? By the way the appointment with the ENT is today. I'm nervous as hell!

I remember I had met an ENT 6 years ago. The was routine checkup since I had to switch ENTs ( mine retired). This new doctor told me I have good nerve function than hes ever seen and that he's surprised that I do so well on my HA. Then he turns around and say that I'm a great candidate for a CI. I was offended. I haven't seen THAT doctor since.
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Not surprised about your mom. I see that with so many hearing parents of deaf children. Their first concern is for their children to be able to speak and hear or lipread .

I was born profoundly deaf and was taught the same way as u. I still can speak good but my lipreading skills have declined since learning ASL. It could be cuz I don't interact with non signers much anymore or because iam burnt out from it since I spent the first 28 years of my life working hard at lipreading everyone. Who knows?

I doubt your speech skills will decline if u still use them to communicate with your family. My family still doesn't know ASL so I still have to revert back to my old skills to communicate with them.
 
shel90 said:
Not surprised about your mom. I see that with so many hearing parents of deaf children. Their first concern is for their children to be able to speak and hear or lipread .

I was born profoundly deaf and was taught the same way as u. I still can speak good but my lipreading skills have declined since learning ASL. It could be cuz I don't interact with non signers much anymore or because iam burnt out from it since I spent the first 28 years of my life working hard at lipreading everyone. Who knows?

I doubt your speech skills will decline if u still use them to communicate with your family. My family still doesn't know ASL so I still have to revert back to my old skills to communicate with them.
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I still haven't learned ASL, and my lipreading is declining. It is because my mom passed away and everyone is too lazy repeat themselves so they avoid me, or I am too lazy to communicate to visit anyone right now. My family don't mind if I visit them, but I think for them, visiting me is a chore to them Whenever they are in town, they always say, "well I will visit her another time".I don't blame them because I feel the same way. I feel that communicating is a hassle or a chores, like doing dishes. I don't get any joy out of it.

Rather you learn ASL or not, your speechreading is bound to fail anyhow, especially when you no longer in school where you focus on it everyday. After school and being by yourself day in and out...lipreading is no good. Jobs do help though.
 
Pacman, Lilly used a Widex digital in each ear. I forgot the model number, but they were pretty powerful HAs.
 
Lillys dad said:
Pacman, Lilly used a Widex digital in each ear. I forgot the model number, but they were pretty powerful HAs.
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Oh, I got it.

It sounds that digital HA looks like analog HA and sounds are goes to blow in ear, that not powerful so enough for profoundly deaf people then CI is #1 better technology than HA (both of analog and digital).
 
I have a question, can you swim with CIs? Can they get wet? I am HOH (85%) and I'm thinking of looking into this. I do miss bird, cricket and frog sounds....
 
nightcrickets said:
I still haven't learned ASL, and my lipreading is declining. It is because my mom passed away and everyone is too lazy repeat themselves so they avoid me, or I am too lazy to communicate to visit anyone right now. My family don't mind if I visit them, but I think for them, visiting me is a chore to them Whenever they are in town, they always say, "well I will visit her another time".I don't blame them because I feel the same way. I feel that communicating is a hassle or a chores, like doing dishes. I don't get any joy out of it.

Rather you learn ASL or not, your speechreading is bound to fail anyhow, especially when you no longer in school where you focus on it everyday. After school and being by yourself day in and out...lipreading is no good. Jobs do help though.
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I'm sorry about your loss nightcrickets. I kind of understand what you're going through.
I am back at school in my hometown which has a big deaf community. I'm learning ASL. Although there are alot of hearing people in my class I communicate by lip reading and talking. I hope I would still have some lipreading skills when I'm old and grey.:fingersx:
 
cdaigle430 said:
I have a question, can you swim with CIs? Can they get wet? I am HOH (85%) and I'm thinking of looking into this. I do miss bird, cricket and frog sounds....
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You can't swim with the processor on you (the BTE part). Having said that and without the processor on, you can swim to your heart's content. Water has no impact on your implant itself.
 
Busterdogrl said:
I grew up HOH and wore HA in both ears until the age of 7 where my right went deaf. I was in hearing schools and taught to lip read and oral speech therapy. I was never taught ASL. Then last October, I lost all my hearing in my left ear. Sure it was a big blow to me, but I coped and accepted it. I left my college and went back home. I decided that its time for me to learn sign language even though I'm pretty good at lip reading. My parents, ( mostly my mother) wants me to get checked out to see if I can get a CI. I don't even know its right for me. I do know its right for HER, because she just wants her baby ( me) to hear and not suffer. Being deaf doesn't make me suffer, I'm better now than I was before. I've talked o many people about their opinion about CI many say its not worth it. My mother is worried that I will lose my skills and ability to speak over time since I am now deaf. I think that its absurd!

I don't even know if I'm a good candidate for a CI. How do you even know? By the way the appointment with the ENT is today. I'm nervous as hell!

I remember I had met an ENT 6 years ago. The was routine checkup since I had to switch ENTs ( mine retired). This new doctor told me I have good nerve function than hes ever seen and that he's surprised that I do so well on my HA. Then he turns around and say that I'm a great candidate for a CI. I was offended. I haven't seen THAT doctor since.
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It's possible to have it both ways - have a CI for when you need to hear and sign for when you want to communicate with your signing friends. We have people here who do both :) It's not an either/or decision.

No you don't lose your speech when you become very deaf but the actual sound of your speech can change if you can't hear it. I lost my hearing suddenly like you and I'm told that my speech did start to sound more slurred, which makes sense because you naturally moderate your speech by hearing it. If that's not important to you and there is no issue with people understanding you then this is not an issue.

I would ask your mother to give you some space if you feel she is putting too much pressure on you. Having a CI or not is a very personal decision and some people take years to arrive at a final decision. I'm really happy with my results but that's just me. I have so much more energy now as I was getting very tired from all the lipreading. However if you operate in a mainly signing environment then again this is not an issue.
 
Pacman, some profoundly deaf people get enough hearing with a hearing aid. But then again others do not. Lilly didnt get enough amplification from them, so, if she was ever going to develop the ability to hear, the CI was/is the best option.
 
Lillys dad said:
Pacman, some profoundly deaf people get enough hearing with a hearing aid. But then again others do not. Lilly didnt get enough amplification from them, so, if she was ever going to develop the ability to hear, the CI was/is the best option.
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Yup, I'm on same as your daughter, also I don't got good benefit with HA anymore.

I remember about you want upload an audio of Lilly's oral language, also you can upload an video on Youtube.com with audio support and its up to you to create own closed caption. You want do it or better wait until later and how is your Lilly's oral language?

I thought that toddlers with CI are much better to developing the new language than post-toddler, after 6 years old.

Edit* I'm sure that some people from this forum will help you to upload an video but I'm not on skill to do it.
 
I dont have video. just audio. I used the digital voice recorder that I got for work to cover my ass when people make false accusations against me.
Lilly has very good speech. I is rapidly catching up wit her hearing peers. We are always looking to improve expressive language. She actually understands language better than her haering peers. As far as her quality of speech is concerned, the unofficial test we use is if the general publiccan clearly understand her. Most of ther time they can, easily.
 
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