C.I.: My Love and Hate Relationship with Cochlear Implant
From Tory:
Five years ago I was caught off guard when I underwent CI surgery and woke up with horrible vertigo, it was so severe that I had to stay overnight at the hospital. The next day my vertigo subsided somewhat and I finally got out of bed to the bathroom but I discovered I had completely lost my balance. I needed assistance. I had physical therapy and their goal was for me to go home. The first trip was comical cuz I felt as I was drunk especially trying to turn a corner and I made a very wide turn. The PT came back later to see if my balance improved and it somewhat did. I went home. I did not expect the turnout at all either. I had heard stories how my deaf friends who opted for CI did well after the surgery. The doctor suspects I was born hearing and had lost it as a tot. The reason why he said that was because most deaf people who were born deaf do not have balance to begin with but deaf adults who were born hearing have balance. If I had no balance at birth then I would do well after the surgery. I thought that was interesting. When the implant is inserted through the cochlear it destroys the follicles and balance is thrown off. If the follicles are destroyed in one ear and the other ear still has the balance, our brain notices the imbalance and the brain needs to compensate the loss of balance, in other words, regroup.
The reason why I opted for CI was because my high school friend who had gone through the surgery few months earlier. She raved how wonderful it was to be able to hear paper rustling, spoon falling to the floor, etc. I was disgusted that she would opt for CI. Her reasons were that she wanted to hear her children. I was so leery to the idea of CI. I thought she was crazy! But hearing how she could hear, I thought to myself “hey! I want to hear sounds too!!!” so I decided to go through the process. In order to be a candidate for CI surgery I had to wear hearing aids in both ears; undergo medical tests; go through psychological evaluation; and physical checkup.
My friend was so optimistic and she said she was just fine after the surgery. When I experienced adverse reaction to my CI surgery I contacted her and told her of my experience. She said “oh no! I went through the same experience as you did.” I did not appreciate her omission. My policy is to be 100% honest with other people who are curious about CI. I would NOT hold back valid information. Guess what? She stopped wearing her processors after a few years because she could not afford the repairs.
Few weeks after CI surgery, I went back to the center to be “jump started” (I’m being funny here… the proper word should be activated) and they started with minimal frequencies so I wouldn’t have a bad reaction. I was still experiencing mild vertigo and loss of balance. The next few months of adjustments, let’s just say that it took me a year to be appreciative of what CI could offer. I struggled with my severe balance issues for at least 5 months and mild vertigo finally subsided after 3 months. Even now once in a while I lose balance. I am petrified of going down long steps without holding onto a railing or step up on a stool to retrieve books from high up. I also cannot walk in the dark without assistance as I have no balance. Prior to CI I never experienced vertigo or balance loss.
So after a year I began to really enjoy hearing nature sounds. The first time I worked in my garden, I heard this sound over and over, it drove me nuts and I asked my son “what is that sound!?” He said, “birds.” I was amazed how loud birds can be!!! I began to learn to differentiate few bird sounds. I could hear dogs barking few doors down from inside of the house with TV on! Of course there were intolerable sounds such as: vacuum cleaner, ripping paper, cutting and wrapping paper for presents (at the time it was Christmas). Speech amazes me! I could hear sh, ch, s, f, all of the sounds I hadn’t heard before… I thought sooooooo cool! Hearing wind sounds so also cool. I went to the beach when the water was rough, the sound of crashing waves was too loud for me but when the waves are small and gentle, and it is a cool sound! I discovered while walking through slushy snow the result had its own sound and I started to play with the sounds by making baby steps through the snow (I’m sure people who see me like a little child would think I’m weird. I felt like a little kid learning sounds. Oh, I could go on and on with the sounds I never thought I could hear.
I was 43 when I had the surgery and four years later after my two kids left for college I decided to go back to Gallaudet to complete my BA. I had put that on hold while raising my kids and work full time. I decided not to wear my CI when I’m at Gallaudet. I am deaf and I want to be deaf at Gally there isn’t a point to hear sounds when I’m on campus.
Unfortunately, the stress of taking two classes with my classmates being same age as my own kids, work full-time, family illness, etc. caused clusters of vertigo episodes. From January until April I experienced 12 serious horrible episodes and between the episodes my right ear had tinnitis. I had medical tests to see what was going on. The doctor prescribed steroids and that was the end of vertigo episodes. With the symptoms I had mimicked symptoms of Meniere disease but the Dr. could not give me a definite diagnosis – one symptom shows a gradual hearing loss but with my deafness how can they know if I lost more hearing while I am scored at 95 DB in my right ear? The dr. emphasized that my malaise had nothing to do with the implant in my left ear. The dr. stressed that in order to reduce the likely chance of relapse I should quit caffeine, chocolate, alcohol (especially red wine), and salt. This diet works for patients with Meniere disease and migraine headaches.
Eventually both processors malfunctioned. I did not renew my warranty (which was ignorant on my part) and they cost 500 bucks each to repair. I cannot afford it. So back into my silent world and I love it (sometimes depending on a situation I don’t like it). When I was wearing CI all day and I get home remove the processor so I can have a quiet evening. I grew up with one hearing aid until when my children were little I stopped wearing hearing aid because my kids were so noisy and I would tell them “shh shhh” constantly and I realized that was silly and just turn the hearing aid off! So I did and ended up not hearing sounds for quite many years until I decided to get a CI. So for me being immersed into silence is not the end of the world, I still can function very well. I still communicate with my coworkers orally and I read lips very well. Of course I miss hearing sounds. Ironically the sounds I heard through CI are imprinted in my memory. I suppose that’s how late deafened adults feel, they remember sounds (correct me if I’m wrong). If it wasn’t for the CI I would never be able to understand hearing people and why sound is so important. I feel being able to hear is a blessing.
One disadvantage and unfortunate lack of communication I learned from the center that I had been without sounds for a year and this means I have to start all over again from the beginning. If I had known that I would have found means to pay for the repairs. I really do not have time to go for adjustments being in school and working full-time is hectic enough. There is a new model which is water resistant and that is what I need! In the summer time I sweat when I go for walks and the processor get wet and break. I am in the process of trying to obtain my insurance’s approval they would cover the new CI. Like I mentioned I do not have much time. The problem is that the CI company wants payment up front and the insurance says to file a claim and I would eventually be reimbursed. Who has 7,000.00 up front? I am aware that some people would say “but, I would think that CI is important to function in a hearing community.” I have already stated before that I have spent MANY years in silence, raised my two hearing kids alone, work full time with no problems (I read lips and communicate with hearing people, drive just like hearing people, etc.). I rely on interpreters for our meetings with or without CI.
Do I regret CI? Yes or no. I loved hearing sounds but I hated how sick I became after the surgery. If I had known it would be that bad I would NOT have CI surgery. Because of my vertigo episodes a year ago under doctor’s orders I quit caffeine, wine, chocolate and salt and reduce stress. I LOVE coffee and chocolate! I do see a difference… when I cheat I do not feel good, I have tinnitus. My body developed sensitivity to the “bad” stuff.
*sigh*
Even though I try to have a positive attitude and with the CI experience I now understand why sounds are so important to hearing people especially their deaf babies. My theory is that life is about learning new experiences. I still feel CI surgery is very risky and scary especially for deaf babies. I loved reading Cochlear Dad’s posts about his child with CI and ASL. I think it is so wonderful that a hearing parent is willing to provide several options for his child. I am envious when I see hearing parents using sign language with a deaf child. I am also envious of deaf families with ASL. I obviously grew up in a hearing family without any exposure to sign language.
Please don’t get me wrong, as I am not perfect, I did have many periods of frustrations, misunderstandings, depression, loneliness, etc. as a child, teenager, and young adult. I still suffer from the years of deprivation of ASL being raised in a hearing environment in my hearing family and my schools. When I was in 6th grade where I was the only deaf kid, I was forced to give oral reports (remember, I had no interpreters). I hated every minute of it. None of my classmates understood me and I am standing in front of them mortified and fear of them making fun of me. Today I am extremely nervous standing in front of deaf students.
As I said, I cannot dwell on my upbringing, it’s in the past and I try to remain positive. But hey, if it wasn’t for the CI I wouldn’t have a better understanding of hearing people, right? Or even if it wasn’t for my deafness who would I be? Being Deaf is who I am and no one will take that away from me.
Tory
Commentary:. A little information on Tory’s background. She grew up orally, not having learned sign language until she became a young adult.
I recall that her experiences with the vertigo and balance problems were severe the first year. The scary part…. her surgeon is one of the top notch surgeons in the country, just like Erick’s. Hers was taken in 2003, and Erick’s 1997. This is worrisome. However, she loves hearing sounds, even though she struggles with vertigo.
It’s my impression when vertigo and balance problems do happen, they are usually mild and temporary. But anytime one has surgery, it does have its risks and complications, even though they are infrequent. Unfortunately, for Tory, it wasn’t mild nor temporary. She continues to struggle with this complication. : /
I thought it is interesting that she has reservations about deaf babies/toddlers receiving cochlear implants. Incidentally she wasn’t the first Deaf person with cochlear implants to express the same reservations. Hmm, I need to ask other Deaf people with cochlear implant that question. MZ
PS. Tory added this for further clarification: About 3 weeks after my surgery I made myself walk around the block so I could get back to work. I hated being so immobilized and I am independent so I worked at retaining my balance. I had planned on working two weeks after surgery but no such luck. I thought I would try to take the metro as I thought i was in no shape to drive … so I decided to take a trip to my office and discovered it was exhausting trying to walk in a straight line instead of all over the place. I was not ready to go to work, I thought another week but it snowed big time! I realized I could not walk in the snow as it would hamper my trip to work via metro. I asked my son to go with me in the car and see if I could drive and discovered it was so much better to drive than try walking in a straight line. I finally went back to work a month after the surgery and worked part time next three weeks. I did not have self-confidence at all. I realized I had a hard time walking in the streets with cars passing, people passing; everytime they pass i go off balance so I joined a gym to help me with my balance issues
From Tory:
Five years ago I was caught off guard when I underwent CI surgery and woke up with horrible vertigo, it was so severe that I had to stay overnight at the hospital. The next day my vertigo subsided somewhat and I finally got out of bed to the bathroom but I discovered I had completely lost my balance. I needed assistance. I had physical therapy and their goal was for me to go home. The first trip was comical cuz I felt as I was drunk especially trying to turn a corner and I made a very wide turn. The PT came back later to see if my balance improved and it somewhat did. I went home. I did not expect the turnout at all either. I had heard stories how my deaf friends who opted for CI did well after the surgery. The doctor suspects I was born hearing and had lost it as a tot. The reason why he said that was because most deaf people who were born deaf do not have balance to begin with but deaf adults who were born hearing have balance. If I had no balance at birth then I would do well after the surgery. I thought that was interesting. When the implant is inserted through the cochlear it destroys the follicles and balance is thrown off. If the follicles are destroyed in one ear and the other ear still has the balance, our brain notices the imbalance and the brain needs to compensate the loss of balance, in other words, regroup.
The reason why I opted for CI was because my high school friend who had gone through the surgery few months earlier. She raved how wonderful it was to be able to hear paper rustling, spoon falling to the floor, etc. I was disgusted that she would opt for CI. Her reasons were that she wanted to hear her children. I was so leery to the idea of CI. I thought she was crazy! But hearing how she could hear, I thought to myself “hey! I want to hear sounds too!!!” so I decided to go through the process. In order to be a candidate for CI surgery I had to wear hearing aids in both ears; undergo medical tests; go through psychological evaluation; and physical checkup.
My friend was so optimistic and she said she was just fine after the surgery. When I experienced adverse reaction to my CI surgery I contacted her and told her of my experience. She said “oh no! I went through the same experience as you did.” I did not appreciate her omission. My policy is to be 100% honest with other people who are curious about CI. I would NOT hold back valid information. Guess what? She stopped wearing her processors after a few years because she could not afford the repairs.
Few weeks after CI surgery, I went back to the center to be “jump started” (I’m being funny here… the proper word should be activated) and they started with minimal frequencies so I wouldn’t have a bad reaction. I was still experiencing mild vertigo and loss of balance. The next few months of adjustments, let’s just say that it took me a year to be appreciative of what CI could offer. I struggled with my severe balance issues for at least 5 months and mild vertigo finally subsided after 3 months. Even now once in a while I lose balance. I am petrified of going down long steps without holding onto a railing or step up on a stool to retrieve books from high up. I also cannot walk in the dark without assistance as I have no balance. Prior to CI I never experienced vertigo or balance loss.
So after a year I began to really enjoy hearing nature sounds. The first time I worked in my garden, I heard this sound over and over, it drove me nuts and I asked my son “what is that sound!?” He said, “birds.” I was amazed how loud birds can be!!! I began to learn to differentiate few bird sounds. I could hear dogs barking few doors down from inside of the house with TV on! Of course there were intolerable sounds such as: vacuum cleaner, ripping paper, cutting and wrapping paper for presents (at the time it was Christmas). Speech amazes me! I could hear sh, ch, s, f, all of the sounds I hadn’t heard before… I thought sooooooo cool! Hearing wind sounds so also cool. I went to the beach when the water was rough, the sound of crashing waves was too loud for me but when the waves are small and gentle, and it is a cool sound! I discovered while walking through slushy snow the result had its own sound and I started to play with the sounds by making baby steps through the snow (I’m sure people who see me like a little child would think I’m weird. I felt like a little kid learning sounds. Oh, I could go on and on with the sounds I never thought I could hear.
I was 43 when I had the surgery and four years later after my two kids left for college I decided to go back to Gallaudet to complete my BA. I had put that on hold while raising my kids and work full time. I decided not to wear my CI when I’m at Gallaudet. I am deaf and I want to be deaf at Gally there isn’t a point to hear sounds when I’m on campus.
Unfortunately, the stress of taking two classes with my classmates being same age as my own kids, work full-time, family illness, etc. caused clusters of vertigo episodes. From January until April I experienced 12 serious horrible episodes and between the episodes my right ear had tinnitis. I had medical tests to see what was going on. The doctor prescribed steroids and that was the end of vertigo episodes. With the symptoms I had mimicked symptoms of Meniere disease but the Dr. could not give me a definite diagnosis – one symptom shows a gradual hearing loss but with my deafness how can they know if I lost more hearing while I am scored at 95 DB in my right ear? The dr. emphasized that my malaise had nothing to do with the implant in my left ear. The dr. stressed that in order to reduce the likely chance of relapse I should quit caffeine, chocolate, alcohol (especially red wine), and salt. This diet works for patients with Meniere disease and migraine headaches.
Eventually both processors malfunctioned. I did not renew my warranty (which was ignorant on my part) and they cost 500 bucks each to repair. I cannot afford it. So back into my silent world and I love it (sometimes depending on a situation I don’t like it). When I was wearing CI all day and I get home remove the processor so I can have a quiet evening. I grew up with one hearing aid until when my children were little I stopped wearing hearing aid because my kids were so noisy and I would tell them “shh shhh” constantly and I realized that was silly and just turn the hearing aid off! So I did and ended up not hearing sounds for quite many years until I decided to get a CI. So for me being immersed into silence is not the end of the world, I still can function very well. I still communicate with my coworkers orally and I read lips very well. Of course I miss hearing sounds. Ironically the sounds I heard through CI are imprinted in my memory. I suppose that’s how late deafened adults feel, they remember sounds (correct me if I’m wrong). If it wasn’t for the CI I would never be able to understand hearing people and why sound is so important. I feel being able to hear is a blessing.
One disadvantage and unfortunate lack of communication I learned from the center that I had been without sounds for a year and this means I have to start all over again from the beginning. If I had known that I would have found means to pay for the repairs. I really do not have time to go for adjustments being in school and working full-time is hectic enough. There is a new model which is water resistant and that is what I need! In the summer time I sweat when I go for walks and the processor get wet and break. I am in the process of trying to obtain my insurance’s approval they would cover the new CI. Like I mentioned I do not have much time. The problem is that the CI company wants payment up front and the insurance says to file a claim and I would eventually be reimbursed. Who has 7,000.00 up front? I am aware that some people would say “but, I would think that CI is important to function in a hearing community.” I have already stated before that I have spent MANY years in silence, raised my two hearing kids alone, work full time with no problems (I read lips and communicate with hearing people, drive just like hearing people, etc.). I rely on interpreters for our meetings with or without CI.
Do I regret CI? Yes or no. I loved hearing sounds but I hated how sick I became after the surgery. If I had known it would be that bad I would NOT have CI surgery. Because of my vertigo episodes a year ago under doctor’s orders I quit caffeine, wine, chocolate and salt and reduce stress. I LOVE coffee and chocolate! I do see a difference… when I cheat I do not feel good, I have tinnitus. My body developed sensitivity to the “bad” stuff.
*sigh*
Even though I try to have a positive attitude and with the CI experience I now understand why sounds are so important to hearing people especially their deaf babies. My theory is that life is about learning new experiences. I still feel CI surgery is very risky and scary especially for deaf babies. I loved reading Cochlear Dad’s posts about his child with CI and ASL. I think it is so wonderful that a hearing parent is willing to provide several options for his child. I am envious when I see hearing parents using sign language with a deaf child. I am also envious of deaf families with ASL. I obviously grew up in a hearing family without any exposure to sign language.
Please don’t get me wrong, as I am not perfect, I did have many periods of frustrations, misunderstandings, depression, loneliness, etc. as a child, teenager, and young adult. I still suffer from the years of deprivation of ASL being raised in a hearing environment in my hearing family and my schools. When I was in 6th grade where I was the only deaf kid, I was forced to give oral reports (remember, I had no interpreters). I hated every minute of it. None of my classmates understood me and I am standing in front of them mortified and fear of them making fun of me. Today I am extremely nervous standing in front of deaf students.
As I said, I cannot dwell on my upbringing, it’s in the past and I try to remain positive. But hey, if it wasn’t for the CI I wouldn’t have a better understanding of hearing people, right? Or even if it wasn’t for my deafness who would I be? Being Deaf is who I am and no one will take that away from me.
Tory
Commentary:. A little information on Tory’s background. She grew up orally, not having learned sign language until she became a young adult.
I recall that her experiences with the vertigo and balance problems were severe the first year. The scary part…. her surgeon is one of the top notch surgeons in the country, just like Erick’s. Hers was taken in 2003, and Erick’s 1997. This is worrisome. However, she loves hearing sounds, even though she struggles with vertigo.
It’s my impression when vertigo and balance problems do happen, they are usually mild and temporary. But anytime one has surgery, it does have its risks and complications, even though they are infrequent. Unfortunately, for Tory, it wasn’t mild nor temporary. She continues to struggle with this complication. : /
I thought it is interesting that she has reservations about deaf babies/toddlers receiving cochlear implants. Incidentally she wasn’t the first Deaf person with cochlear implants to express the same reservations. Hmm, I need to ask other Deaf people with cochlear implant that question. MZ
PS. Tory added this for further clarification: About 3 weeks after my surgery I made myself walk around the block so I could get back to work. I hated being so immobilized and I am independent so I worked at retaining my balance. I had planned on working two weeks after surgery but no such luck. I thought I would try to take the metro as I thought i was in no shape to drive … so I decided to take a trip to my office and discovered it was exhausting trying to walk in a straight line instead of all over the place. I was not ready to go to work, I thought another week but it snowed big time! I realized I could not walk in the snow as it would hamper my trip to work via metro. I asked my son to go with me in the car and see if I could drive and discovered it was so much better to drive than try walking in a straight line. I finally went back to work a month after the surgery and worked part time next three weeks. I did not have self-confidence at all. I realized I had a hard time walking in the streets with cars passing, people passing; everytime they pass i go off balance so I joined a gym to help me with my balance issues
February 5th, 2008 at 2:45 pm
Oh, man, MZ; I thought (until the end) that you were talking about yourself! I think the revelation should be put at the top of the article.
February 5th, 2008 at 2:54 pm
Sorry for the confusion. I’ve added her name on the top. Thanks for the suggestion
I don’t have a cochlear implant and I don’t see the need for one. My position is neutral. The reason I’m showing more negative stories is due to a shortage of them, all buried under the carpet . A pro cochlear implant proponent insisted that there were no negative stories. Unfortunately we know too many cases that didn’t work well, mostly in 80′s and 90′s. This case was taken five years ago.. mixed results.
February 5th, 2008 at 3:01 pm
One thought tho…when babies get implanted they arent walking or just learned to walk probably has less chance of “losing balance” as adults do
February 5th, 2008 at 3:29 pm
Tory,
I found your story very informative and objective. Your life hasn’t been easy, but you are still open to any new experiences that may come your way…highly commendable:) Jodi
February 5th, 2008 at 3:38 pm
Thanks Jodi,
I believe in honesty when it comes to CI. Even when I have experienced with CI I still learn from hearing parents of CI babies as well.
I believe that ignorance makes people fearful .. I was ignorant prior to my CI chapter.
February 5th, 2008 at 3:47 pm
I don’t think it’s just ignorance alone that make Deaf people fearful.
From what I’ve gathered from my research, the Deaf teenagers and kids were ‘experimented’ (for the lack of better word) back in 80′s and 90′s. They were told that they will hear again and understand speech, etc. Back then, the doctors didn’t know the limitations of the brain and that the older kids will likely not understand speech. So these kids and their parents were misled what to expect from cochlear implants. Hence the anger of Deaf Community about the cochlear implants…..
The surgical procedures weren’t perfect back then, thus the higher rate of complications.
Deaf Community witnessed many of these ‘failure’ cases. Even today, some of the deaf kids with c.i.s end attending the deaf schools, but the c.i. advocates are still in denial about these ‘not successful’ cases. These denials are not productive in improving the relationship between the C.I. people and Deaf Community.
However, nowadays the doctors know the limitations of the brain and tell older deaf kids and adults their chances of understanding speech depend on their previous speech comprehension. If they did understand speech in the past, then they probably will again with their cochlear implants. But if they never understood speech in the first place, then their chances in speech comprehension are very poor.
February 5th, 2008 at 4:02 pm
It’s good information all the way through! Some are positive and some aren’t. Of course everyone knows, but we have to be sure that it has to be unfolded to everyone before they make a decision and be aware of the risks (it won’t happen to everyone).
I have a question and need your help to find an answer, please. Okay, if a person had to have their CI removed for some reason, will they lose their “nerves” in the back of their head? They won’t be able to use the hearing aids again after their CI removed because of losing some “nerves”? Know what I mean?
February 5th, 2008 at 4:14 pm
Yes, I know what you mean. No, they cannot use the hearing aid on the ear once again after the cochlear implant was removed. When the electrodes are inserted inside the cochlea, it destroys any remaining cochlear hair left… meaning its remaining hearing is permanently gone.
February 5th, 2008 at 4:23 pm
deb ann,
If the CI was inserted though cochlear the follicles are destroyed so you are right … hearing aid will not work if the implant was taken out. This is why i wanted CI in my “bad ear” rather than my “good ear” cuz if the implant does not work I still have my right ear to wear hearing aid.
hope that answer your question?
February 5th, 2008 at 4:35 pm
I, too, had the same experience growing up, except for giving speeches in front of a class (I rather loved it actually) and that I was raised with CI (implanted at three).
But I also have horrible balance and I am now wondering if a part of my imbalance is due to cochlear implant, and the other part being Usher’s syndrome.
February 5th, 2008 at 4:50 pm
Interesting!
I have an question for culturally deaf people with CI, when they grew up with hearing aids on both ears, they usually pick out the bad ear, I would have found it difficult to only wear one hearing aid on my good ear if CI failed. How does one hear with one side of their ear — as I grew up with hearing aids on both ears and I could not function on one hearing aid alone.
Thanks Tory for sharing your experience, I know it is not funny to experience dizziness and balance problems. I hope you will feel better very soon!
February 5th, 2008 at 5:00 pm
Tory,
I assume that the brand of your CI is Cochlear since you mentioned the new water resistant processor. You should know that Cochlear has now hired a company to handle filing insurance for their customers. You can order the new Freedom processor online, http://www.cochlearupgrade.com, and give your insurance information without paying a thing. All you need to do is get a letter of medical necessity from your doctor and fax it to them.
February 5th, 2008 at 5:13 pm
Rini,
Wow you were implanted at 3 and still suffer balance… few of my friends have said that they suffer from balance just because they are deaf…
I wouldnt know for sure why you suffer from balance.
Michelle, thanks! I wonder if it is generation thing, I would have benifited from wearing two hearing aids but I was born in 1959 and times were different…they didnt recommend I wear both, just two. later when i was in High School I tried wearing both and simply could not wear an aid in my left ear. I couldnt get used to the sound.
Melissa,
Wow! thanks for your information. I checked online. I will have to act and try what you said. I appreciate it!
February 5th, 2008 at 6:27 pm
I would like to clarify the residual hearing question. The newer implants are better able to save residual hearing, and many people are finding that they can continue to use their hearing aids after surgery. There is still a risk of losing the residual hearing, but it is way better than the older implants.
That is an important question to ask the doctor who would do the surgery.
February 5th, 2008 at 6:32 pm
As to insurance, it is important to keep the processor under warranty after the 3 year covered period is up. You can buy the warranty from the implant company. It is a lot cheaper than repairs.
When new processors become available, they will give you a trade-in value for your old processor. In our case, insurance paid for part of the upgrade, so after trade-in and insurance it cost about $2000.00 for our part of the new processor. Not chump change, but way better than full price. And BTW, it works much better than the 3G. Our daughter went from a 25 db loss to a 10 db loss, and had much better sound quality.
February 5th, 2008 at 6:59 pm
Oh just 3 year warranty, even though it is a major surgery with so much risks involved. My car is like 100,000 miles or 6 years or something like that. It just tells me that the cochelar manufacturers are not all that certain about the products they produce.
February 5th, 2008 at 7:05 pm
The 3 year warranty is for the external processor.
February 5th, 2008 at 7:19 pm
“So much risks involved”, Jay?
3 years warranty – it’s just for the external processor.
For the internal implant, it’s lifetime warranty if it needs to be replaced.
February 5th, 2008 at 7:30 pm
I got information from Melissa who sent me the link so I will get in touch with them. The new procedure is now that the cochlear company hired people to work with the insurance. In other words, all I need is to get medical note from a dr and fax it to the company and they will work with my health insurance so i can finally get my processor. One problem is time as i work full time plus take 2 college classes so I will have to work that out somehow.
Also the 3 year warranty is what I should have gotten before it ran out. It was a mistake not to renew it. We learn from mistakes, right? Being sick took up too much time and with so many vertigo episodes in 4 months rendered me helpless until my family had enough and my mother called my primary doctor who recommended a local ENT so this way the ENT dr contacted my surgeon and got the ball rolling. It was that bad. Thank heavens, it is now under control.
A very small part in me is that i am fearful of wearing processor again, will it trigger another cluster of vertigo? Yet we need to think positive and not let that pull us down, right?
February 5th, 2008 at 7:44 pm
Tory, I admire the hell out of you. It is so scary dealing with this medical stuff. No way of knowing. I know people who got tinnitus cured from getting the CI. I know others who got tinnitus from the CI. No way to know ahead of time.
I wish I had a crystal ball to tell you how it will work out, but all I can do is offer support and prayers.
February 5th, 2008 at 8:19 pm
K.L.
Aww that’s sweet of you to say that. My heart is warm with your supporting words.
I know that my surgeon was dismayed when I woke up from the surgery. I’m sure he felt bad as like you said no way of knowing what wld happen and that’s why he suspected I was born hearing.
Anyway
Thank you for your support
February 5th, 2008 at 9:13 pm
Tory says: I realized I had a hard time walking in the streets with cars passing, people passing; everytime they pass i go off balance so I joined a gym to help me with my balance issues.”
I had the same experience. Everytime I looked at the left side whilst driving or looking at a person that was talking to me for more than 60 seconds or so, I would have an attack of veritgo. I had a bad auto accident on the New Jersey Turnpike because I kept my eye at the left side whilst driving. (Results: I have not been allowed to drive for life because of veritgo.
Not only that, but I also have to sleep on the right side for life. If I just so happen to roll to the left side and sleep for hours, I would be suffering veritgo for two whole weeks, staying in bed.
Two doctors at the Johns Hopkins University Hospital could find nothing wrong. It was I who diagnosed myself. Later, the doctor agreed with my self-diagnosis. The cause of vertigo is the imbalance of the fluid in the left ear.
So I went to NYLHH (New York League for the Hard-of-Hearing) to get myself biliteral hearing aids in 1979. No vertigo thereafter.
Tory, I have a question to ask you. If any hearing parent consults you in regard to cochlear implant for her child, what advice you would provide to her?
Thank you for sharing your story with us.
Pardon me if you see any error or typo. I am in the middle of watching Super Tuesday and commenting this.
February 5th, 2008 at 9:33 pm
I am a survivor of vertigo trips caused by viral inflammation. it practically kept me in bed for two days every week for three years of my life, the worst part when I started my Ph.d. taking classes and nursing my 6 mos to 3 yr old son during that time. That is why when I see or ever “hear” anything ever going into the inner ear, the real innermost of sanity, I shut my eyes and..think oh please I rather be d e a d..!
I learned that more surgeons are able to insert wire into the cochlear without damaging hair cells, the surgical skills have improved to some extent.
I WON’T take that chance with my son Noam, F%$#@*!KING h*** no way. His last audio test showed that at 12 mos, he responded to sounds at 80 db instead of 95 db tested when he was 6 mos old. I have friends at 80 db chatting endlessly on cellphone. His audiogram is from 80 db to slow drop to around 90′s so with digital..to be tested this Friday can show as much as around 45 db just enough for good laughs on cellphone.
There is a research showing that for many case, digital aids will do well enough so no need for re-surgeries, remapping, fighting with insurances, etc.
Tory, I do not want to tell that you made a poor judgment, it was hard to know how bad side effect could really rock you like this. I fully understand your desire for opportunities you could have enjoyed if it is not for real lousy vertigo problems. I thank you very much for sharing your truth with us. It is important that CI corporates be H O N E S T about medical risks, I do not believe their research saying at least 1% I think it is more than that.
Anne Marie
February 5th, 2008 at 10:09 pm
Thanks, Tory, for sharing your CI experience with DR readers. I’m sorry to hear you still experience vertigo attacks.
Michele, it is possible to hear with just one hearing aid, provided one has enough residual hearing that, if aided, one can hear the human voice. The only problems would be trying to locate the source of the sound and less “stereo” quality. I know, I’ve worn only one aid as my other ear has been “zip” ever since when.
February 5th, 2008 at 11:46 pm
Thank you for giving me the answers! Be peace
February 6th, 2008 at 1:38 am
I got the implant in the 1980′s (was one of these “experiments”), suffered no adverse side effects (except headaches that happen if I suddenly turn on my implant after months of not using it), my parents were not misinformed, my speech and hearing levels paid off as a direct result of my implantation, hearing aids were proven not to work well on me. I was not a “failure”.
So why did I stop wearing implants? I transferred to a deaf high school. There, the deaf students, faculty and staff all got on my case about it, and as a result my self-esteem suffered greatly. I became ashamed of the CI. Unfortunately, I see similar movements happening throughout DeafRead.
February 6th, 2008 at 10:33 am
Jean Boucher,
I have a question to ask you. If any hearing parent consults you in regard to cochlear implant for her child, what advice you would provide to her?
I would be honest with the parent; pros and cons of CI. I would not omit any important information from anyone. Everyone should know the side effects of the surgery. I had a thought earlier that the surgery procedure probably has improved greatly and when a baby is implanted how would the dr know if the baby has lost balance if the baby has not yet walked or just started to walk? Thats a new thought for us to ponder. When adults go through the surgery, i suspect its much more invasive than a baby. I could be wrong.
The hearing parents, whether we like it or not, have rights to decide what to do with their babies. Please dont shoot me down LOL for saying that but it is true and I’m being honest.
By the way, wow you really experienced negative side effects, whew! It sounds pretty bad to me. Im sorry youre going through this.
February 7th, 2008 at 12:13 pm
Tory writes:
I agree with you. That is one of the reasons I am against aboutthe cochlea implantion in babies and toddlers before two of age. Babies are frustrated with their parents who do not know how to communicate with them in sign language. See Amy Cohen-Efron’s vlog, “The Greatest Irony,” (audio available).
February 7th, 2008 at 4:06 pm
Mishka,
I’m late checking back here…just wanted to let you know that Jordan did not lose his residual hearing after his ci surgery as evidenced in his audiogram. We were totally expecting him to lose it and it was a major concern for us, but we obviously went ahead with it anyway. Actually, the piece inserted in the cochlea is now swirled in the shape of the cochlea (in the Nucleus 24 and Freedom)so that it is easier for the surgeon to insert the wire with the electrodes in the cochlea without destroying the residual hearing. I have been hearing about a number of successful surgeries lately, the technology and surgeons are improving. We were very fortunate. Jodi
February 8th, 2008 at 11:24 am
Jodi,
I have N24 but I was told by my surgeon that I will lose my hearing permanently after the surgery. I am confused… i could ask my surgeon and see what he says. This is an interesting information. Ill get back to you once i hear from the dr.
Thanks!
February 10th, 2008 at 5:10 am
Tory,
I don’t know how to say all this stuff in English…ironies of life- our experience has been in Italian, but I guess the translation would be something like this…when you are re-tested for your audiometric exam without the ci, compare the results of the test with your prior results of the ear implanted. We decided to implant Jordan’s “worse ear” and with that ear before being implanted, he could hear sound at 105 decibels, this remained unaltered after the surgery. If you want to get in touch with me, you can email me at jodi@rallycaps.net Thanks again, Tory…Jodi btw. love that name!
March 13th, 2008 at 6:12 pm
Wow! I am glad I turned down the offer at the hearing aid center several times. I was born hearing but lost hearing while ongoing child abuses. My mom kept trying to find the cure on me TWICE then 3rd time, she tried again, the doctor told her I couldn’t have anymore ear operations. I grew up suffering headaches/migraines after wearing hearing aids then I learned that ear mold held air inside that caused infections so I am wearing on and off hearing aids today. I am glad I am deaf! I am glad I am wearing on and off hearing aids, but no fun spending on batteries! Thank you for your share of experiencing CI Whew! SC