Hi Everyone!I am so glad to have found this site.I think it may have saved my life.My background is I'm 45 with meniere's disease(which I havent seen mentioned in CI forum)I got sick when I was 23 in my right ear wont bore you with all medical but had 2 surgeries(right ear) got it under control after a few years.I was able to have a real life working ect.for 6 yrs.got married had my son then got it in my other ear.somewhere along the way I lost my hearing in my right ear but got by fine with my left.After a few surgeries in that ear it went down but still got by .everyone knew what ear to talk into ect.Then last winter I got sick best to everyones guess a virus lodged itself in my ear and was killing the nerve.I have such terrible tinnitus in both ears i didnt pay attention to it when it started really roaring.Long story short(too late haha)I had shots in my eardrum, steroids finally end of July 06 I got my POWERFUL new hearing aid.Did ok considering not much hearing left.My days of phone calls and large crowds were over but at least one on one I was good.Well not anymore I got sick this Jan. Couldnt hear,fluid behind eardrum,drain with needle then tube(still in I think.)Everthing sounds munchkin and Donald duck for me.No more music sounds.Dr says time for a CI. Well I freaked!!!Started crying right there in his office.He was shocked.I was always a trooper,never even got numb before shots.Thank god for Vicodin.Anyway came home went on search and the most hideous picture came up.I cried raged and mourned my hearing loss.Now seeing it as things might be ok thanks to you guys...maybe even better than before.Couple of questions if I may.I read the hole in skull is the size of this O. is that true? I was freaking thinking huge skull bone removal.2...How much dizziness did any of you have after surgery? 3..was the pain bad?And 4 i am reading the book Hear Again this adjusting of dials or whatever evertime you go out ,are you constantly fiddling with this thing? I am so sick of the up and down wheel and channels on my hearing aid..it never ends.Well.that about it .Going to ENT wed.Guess I'll tell him I'm game.Whats the time period start to finish? 2months of shots? then surgery then mapping.3months maybe?Only ask because my husband is home and I'm telling not to start a new job until I'm up on my feet so to speak.Thank you in advance to any help you can give me.
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R2D2
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Hi and welcome!
I've had my CI since last June and have been really pleased with it. Like you, I had terrible tinnitus before I started due to my sudden hearing loss but the CI has improved it by about 50-60%. I have a Cochlear Freedom and there are no dials - it's similar to a hearing aid, you have an on/off and volume button and a sensitivity button. That's it. You wear it behind the ear like you would a hearing aid and there is a magnet/coil which connects magnetically to the implant inside tissue/skin outside of the skull.
They don't drill a hole in your skull, but rather a tiny hole in a small bone near the ear. They only make a sort of well in your skull so that the implant can lie there and not be dislodged but no holes or pieces of skull being removed!
Believe it or not it's microsurgery.
There is an excellent visual slide show by the FDA which shows you what happens step by step. Lemme see if I can find the link for you.
I've had my CI since last June and have been really pleased with it. Like you, I had terrible tinnitus before I started due to my sudden hearing loss but the CI has improved it by about 50-60%. I have a Cochlear Freedom and there are no dials - it's similar to a hearing aid, you have an on/off and volume button and a sensitivity button. That's it. You wear it behind the ear like you would a hearing aid and there is a magnet/coil which connects magnetically to the implant inside tissue/skin outside of the skull.
They don't drill a hole in your skull, but rather a tiny hole in a small bone near the ear. They only make a sort of well in your skull so that the implant can lie there and not be dislodged but no holes or pieces of skull being removed!
Believe it or not it's microsurgery.There is an excellent visual slide show by the FDA which shows you what happens step by step. Lemme see if I can find the link for you.
R2D2
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If you go here Cochlear Implants
and then click on the image on the left you will find the step by step slide show. It's really informative.
and then click on the image on the left you will find the step by step slide show. It's really informative.
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here and enjoy AD! 
sr171soars
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Welcome aboard! Interesting story.
Along with what R2D2 has said and provided that link, it really isn't a big deal...er we Cyborgs ought to know
To help answer your questions, look for and read the older threads. Lots of info in them to help you out.
1. As R2D2 said, the "hole" is small and just enought to let them do their thing (i.e., get the implant in).
2. I was hardly dizzy at all. In cases where Meniere's disease is involved, they take that into account when discussing CIs with the individuals.
3. The pain wasn't bad either. The first night and next day I did need some pain killer to keep it down but nothing after that.
4. As R2d2 already stated, there is just two buttons to push to set up the settings.
5. The amount of time from the consultation and approval to actually getting a CI all depends on various factors. I suppose one could get it done in about a 1 1/2 month to 2 month window if everything goes one's way.
SteveESP52
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Menieres and CI's
First off, I'm glad you found this site. Having Menieres, you may also know about Menieres.org.
If you go to that site, look up cindy4baskets and I know there is one more person there with a CI, possibly pardonme, if she is not the one, she probably knows who it is. The forum crashed several months ago and I think many there got new names. I had to re-apply myself but have not posted much. They were the ones I started reading about when my hearing went down hill and started considering a CI.
Menieres Tinnitus and Dizziness or a loss of balance come hand in hand. I hope you don't have the vertigo attacks as well. I don't know what my percentage of balance is that is left but it is not what it use to be. After CI surgery, my balance was off for a good 2 weeks then slowly got back to normal at about 3.5 weeks. I can say that within a week, I was back driving. Was it safe??? I don't know, there are a lot of other crazy people out there taking lots more risks than I would ever think about. The CI surgery itself was not that bad. Sore for several days. Ear ache type pain off and on for a couple weeks. This is probably more of the electrode array being placed in the cochlea and having to heal. Being able to hear clearly far outweighs all the pain, stress, anxiety and just not being able to hear over the tinnitus. The tinnitus in my implanted ear is gone. It does still remain in my non implanted ear though so it still is annoying but again being able to hear clear speech is so nice.
As far as programming the CI, I can say it is so much better than any hearing aid I have worn. Since you have heard before, it should work fairly well. I've been told that I was hearing at 3 weeks where some hear at 6 months so I was extremely fortunate. Some of this may be due to the first 3 weeks, I listened to XM, CD's or just recorded radio as much as I possibly could using the personal audio cable. I wanted to stimulate the nerves as much as I possibly could. Also, listening to familiar music, I knew what it was suppose to sound like so I kept listening to it until it sounded right. This did require some retraining in how I listen to noise though. I can say I just love the CI and the many features it has. Auto sensitivity for me is just the best. I also love the Telecoil because it makes no difference where I can talk on the phone. On a couple programs, I have the microphone amplification set to 0 while others I have it at 1:3 where the telecoil is 3X louder than the mic input. There have been times my wife has handed me the phone to talk to the person on the other end instead of the normal process of me giving her the phone and acting as a relay for me.
What ever you decide, make sure it is what you want and what you can live with. Being tied to batteries or your audiologists office may be to much for some. Everything is a trade off though. Best of luck in your decision.
If you have any questions, feel free to PM me.
Steve
First off, I'm glad you found this site. Having Menieres, you may also know about Menieres.org.
If you go to that site, look up cindy4baskets and I know there is one more person there with a CI, possibly pardonme, if she is not the one, she probably knows who it is. The forum crashed several months ago and I think many there got new names. I had to re-apply myself but have not posted much. They were the ones I started reading about when my hearing went down hill and started considering a CI.
Menieres Tinnitus and Dizziness or a loss of balance come hand in hand. I hope you don't have the vertigo attacks as well. I don't know what my percentage of balance is that is left but it is not what it use to be. After CI surgery, my balance was off for a good 2 weeks then slowly got back to normal at about 3.5 weeks. I can say that within a week, I was back driving. Was it safe??? I don't know, there are a lot of other crazy people out there taking lots more risks than I would ever think about. The CI surgery itself was not that bad. Sore for several days. Ear ache type pain off and on for a couple weeks. This is probably more of the electrode array being placed in the cochlea and having to heal. Being able to hear clearly far outweighs all the pain, stress, anxiety and just not being able to hear over the tinnitus. The tinnitus in my implanted ear is gone. It does still remain in my non implanted ear though so it still is annoying but again being able to hear clear speech is so nice.
As far as programming the CI, I can say it is so much better than any hearing aid I have worn. Since you have heard before, it should work fairly well. I've been told that I was hearing at 3 weeks where some hear at 6 months so I was extremely fortunate. Some of this may be due to the first 3 weeks, I listened to XM, CD's or just recorded radio as much as I possibly could using the personal audio cable. I wanted to stimulate the nerves as much as I possibly could. Also, listening to familiar music, I knew what it was suppose to sound like so I kept listening to it until it sounded right. This did require some retraining in how I listen to noise though. I can say I just love the CI and the many features it has. Auto sensitivity for me is just the best. I also love the Telecoil because it makes no difference where I can talk on the phone. On a couple programs, I have the microphone amplification set to 0 while others I have it at 1:3 where the telecoil is 3X louder than the mic input. There have been times my wife has handed me the phone to talk to the person on the other end instead of the normal process of me giving her the phone and acting as a relay for me.
What ever you decide, make sure it is what you want and what you can live with. Being tied to batteries or your audiologists office may be to much for some. Everything is a trade off though. Best of luck in your decision.
If you have any questions, feel free to PM me.
Steve
DevBaby
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The surgery wasnt that bad to me.. I didnt feel that much pain.. Only when i try to move my head i could feel some pain. About a week after, my side of my face was feeling like someone bruised me. lol. But now im feeling great!
I dont even get Tinnitus that much anymore..
Just like other said.. it is a lot better than hearing aids.
I love my CI! Maybe I will get it on my other side a year or few years later.
When i got CI, i remmy a lot of sound i heard b4. I was so happy to hear again!
I was born hoh around 60 to 65 db.. then i went up to 80 db 3 years ago. then 95 to 100 db a year ago.I tried hearing aids after that but it wasnt helping me out much..
Anyway.. Good luck in making the decision on getting a CI =)
I dont even get Tinnitus that much anymore..
Just like other said.. it is a lot better than hearing aids.
I love my CI! Maybe I will get it on my other side a year or few years later.
When i got CI, i remmy a lot of sound i heard b4. I was so happy to hear again!
I was born hoh around 60 to 65 db.. then i went up to 80 db 3 years ago. then 95 to 100 db a year ago.I tried hearing aids after that but it wasnt helping me out much..
Anyway.. Good luck in making the decision on getting a CI =)
deafmama78
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back from ent
Hi all.I want to thank everyone who wrote and welcomed me,Tweety i love that you live in a cage thats priceless
I had my dr. appointment last wed. and of course my hearing was up the best its been since i lost it.He says will they qualify you if one ear works with hearing aid? Wouldnt exactly call it working. Can still only hear with the hearing aid and NO background noise at all. Thats on my best days.Friday came and distortion back guessing at words.I'm not hearing again and its almost like losing it all over.:rl: Guess I should feel grateful for those couple days but its just a teaser. Anyway my ENT doesnt do CI's he's great on inner ear ,dizziness ect. He says the dizziness after CI surgery is a balance problem not vertigo. I despise vertigo!!! I used to get about 2 attacks per week usually lasting 4 hours or so, hugging the porcelain goddess and hanging on for dear life leaving me drained for a day or two. Not so much now, last vertigo attack was last summer. I'm not sure what balance problems are but think I may have that as it feels like exagerrated head movements at times.Example: bend down to tie shoe think im bending over 1 foot feels like 3 ,sometimes end up right down on my face if im not careful .Cant turn head to look at something so I turn whole body.It gives a Frankenstein appearance very stiff.My other problem is my ENT has already done surgery on that ear and when he did it he had to open up to get to inner ear so that bone has been cut into already.He's not sure were that will leave me with fitting in CI. If I cant get one I'll die.I cannot imagine spending the rest of my life in this limbo.I am very dissapponted in my family and friends as no one bothers with me.If they cant just pick up the phone it too much of a bother to e-mail or write. Ok enough pity party 
Steve ;Thanks for your letter yes i used to be a member of menieres coping.It was very nice but I like this format better as everthing goes to your e-mail. I was sick and forgot to shut it off came on 5 days later and had 1500 msgs. Not to me personally of course. When you're sick its alot to wade through so i quit. I Yes I think that listening to music might be good stimulation although music is my cross to bear. No american idol show for me this year.i have gotten a book from my library, Hear Again by Arlene Romoff who coincidentally also lives in NJ like me.She had her CI done by Ronald Hoffman in NYC who by chance happened to do my first sugery so I'm taking this as a good sign.She talks about using music directly plugged into CI with a walkman.interesting.She also uses a auxilary microphone when sitting at a table were many voices may run together because"she wants to hear the people in front of her not behind her ear" Do any of you use this mic? Deafmama maybe you can keep me posted as you go as I hope to be right behind you in procedure.Just waiting for baseball with my son to wind down as he doesnt drive yet.DEvbaby you sound like you are doing great with your CI thanks for writing.
Hi all.I want to thank everyone who wrote and welcomed me,Tweety i love that you live in a cage thats priceless
I had my dr. appointment last wed. and of course my hearing was up the best its been since i lost it.He says will they qualify you if one ear works with hearing aid? Wouldnt exactly call it working. Can still only hear with the hearing aid and NO background noise at all. Thats on my best days.Friday came and distortion back guessing at words.I'm not hearing again and its almost like losing it all over.:rl: Guess I should feel grateful for those couple days but its just a teaser. Anyway my ENT doesnt do CI's he's great on inner ear ,dizziness ect. He says the dizziness after CI surgery is a balance problem not vertigo. I despise vertigo!!! I used to get about 2 attacks per week usually lasting 4 hours or so, hugging the porcelain goddess and hanging on for dear life leaving me drained for a day or two. Not so much now, last vertigo attack was last summer. I'm not sure what balance problems are but think I may have that as it feels like exagerrated head movements at times.Example: bend down to tie shoe think im bending over 1 foot feels like 3 ,sometimes end up right down on my face if im not careful .Cant turn head to look at something so I turn whole body.It gives a Frankenstein appearance very stiff.My other problem is my ENT has already done surgery on that ear and when he did it he had to open up to get to inner ear so that bone has been cut into already.He's not sure were that will leave me with fitting in CI. If I cant get one I'll die.I cannot imagine spending the rest of my life in this limbo.I am very dissapponted in my family and friends as no one bothers with me.If they cant just pick up the phone it too much of a bother to e-mail or write. Ok enough pity party Steve ;Thanks for your letter yes i used to be a member of menieres coping.It was very nice but I like this format better as everthing goes to your e-mail. I was sick and forgot to shut it off came on 5 days later and had 1500 msgs. Not to me personally of course. When you're sick its alot to wade through so i quit. I Yes I think that listening to music might be good stimulation although music is my cross to bear. No american idol show for me this year.i have gotten a book from my library, Hear Again by Arlene Romoff who coincidentally also lives in NJ like me.She had her CI done by Ronald Hoffman in NYC who by chance happened to do my first sugery so I'm taking this as a good sign.She talks about using music directly plugged into CI with a walkman.interesting.She also uses a auxilary microphone when sitting at a table were many voices may run together because"she wants to hear the people in front of her not behind her ear" Do any of you use this mic? Deafmama maybe you can keep me posted as you go as I hope to be right behind you in procedure.Just waiting for baseball with my son to wind down as he doesnt drive yet.DEvbaby you sound like you are doing great with your CI thanks for writing.deafmama78
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? Deafmama maybe you can keep me posted as you go as I hope to be right behind you in procedure.Just waiting for baseball with my son to wind down as he doesnt drive yet.DEvbaby you sound like you are doing great with your CI thanks for writing.[/QUOTE]!
Tami, I will defintely be keeping you & the rest of the group here updated on my journey! I am extremely excited, yet anxious! Tmr will be 5 wks til surgery & then 8-9 wks til activation day!!! Wooohooooo!!! Or is it more lke 'eeekkkK!!!" lol!!
Please know I will be here to support you in whatever route you go thru and will be here for you every step of the way as I will be just a lil bit ahead of you!
Tami, I will defintely be keeping you & the rest of the group here updated on my journey! I am extremely excited, yet anxious! Tmr will be 5 wks til surgery & then 8-9 wks til activation day!!! Wooohooooo!!! Or is it more lke 'eeekkkK!!!" lol!!
Please know I will be here to support you in whatever route you go thru and will be here for you every step of the way as I will be just a lil bit ahead of you!
Thanks for all the info.2x i wrote you guys and it dumped my reply.so im going to make this quick just in case 
Bearbaby,I guess lipreading is out same with sign language too hard and hope to get by with justCI.Shel,watch taking asprin so bad for tinnitus.Can you get a ci if you dont mind me asking? Deafmama,Yep,dont say I'm deaf to the hearing cuz they think im just messing with them.I wish.I too can hear loud husband and son both play drums and can hear them when i'm upstairs can go downstairs and not hear the(thank god)So you are 5 weeks away.WOW! are you in the process of getting meningitis shots? how do thay make you feel? So glad I have you to follow through process.Thanks!My husbands on my ass to start and I know I must,and will be glad when its allover.Need courage! Feel better! thanks for writing
Bearbaby,I guess lipreading is out same with sign language too hard and hope to get by with justCI.Shel,watch taking asprin so bad for tinnitus.Can you get a ci if you dont mind me asking? Deafmama,Yep,dont say I'm deaf to the hearing cuz they think im just messing with them.I wish.I too can hear loud husband and son both play drums and can hear them when i'm upstairs can go downstairs and not hear the(thank god)So you are 5 weeks away.WOW! are you in the process of getting meningitis shots? how do thay make you feel? So glad I have you to follow through process.Thanks!My husbands on my ass to start and I know I must,and will be glad when its allover.Need courage! Feel better! thanks for writing
Victorias mom
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Welcome!
Roadrunner
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Hello and welcome to Alldeaf! Hope you'll enjoy your stay here in AD!
Have a great day!
~RR
Have a great day!
~RR
Roadrunner
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Thanks Vickymom&Roadrunner I love it here.Everyone is so nice and very helpful.Cant tell you how much support has helped me!
Great!
Continue to enjoy your stay--
~RR
deafmama78
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So you are 5 weeks away.WOW! are you in the process of getting meningitis shots? how do thay make you feel? So glad I have you to follow through process.Thanks!My husbands on my ass to start and I know I must,and will be glad when its allover.Need courage! Feel better! thanks for writing[/QUOTE]
Yep, 5 more wks left for me. They didn't mention getting a Meningitis shot, or maybe they did? I'll have to ask my Husband in the morning. I totally forgot about that. :/
*To those who recently got their CI implanted, is it required for everyone to get the Meningitis shot, or only for babies & children?
Please just call today & make an appt to get your CI evaluation. It may takes weeks just to have the first appt anyways and it may take months to get your CI surgery. So, I urge you to start the process now. You'll have plenty time to make your decision once you find out if you're a candidate, as you won't be scheduled for surgery for another 6-8 wks at least. Plus you will have to get a Cat scan and have the pre-op interviews and all that stuff. There's nothing to be scared or nervous about, we're all here for you & we've all shared the same anxieties, concerns, worries, etc... we're here for you to talk to us & vent your frusturations whenever you need to. :]
Yep, 5 more wks left for me. They didn't mention getting a Meningitis shot, or maybe they did? I'll have to ask my Husband in the morning. I totally forgot about that. :/
*To those who recently got their CI implanted, is it required for everyone to get the Meningitis shot, or only for babies & children?
Please just call today & make an appt to get your CI evaluation. It may takes weeks just to have the first appt anyways and it may take months to get your CI surgery. So, I urge you to start the process now. You'll have plenty time to make your decision once you find out if you're a candidate, as you won't be scheduled for surgery for another 6-8 wks at least. Plus you will have to get a Cat scan and have the pre-op interviews and all that stuff. There's nothing to be scared or nervous about, we're all here for you & we've all shared the same anxieties, concerns, worries, etc... we're here for you to talk to us & vent your frusturations whenever you need to. :]
deafmama78
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PS- Please don't take it wrong, I'm not pushing you in any way, shape, or form. It's just my way of encouraging you. :] I support you in whatever decision you may take, even if you decide to not get the CI after being told you are a good candidate. CI isn't for everyone. :]