Hello im new to AllDeaf and would like some feedback

DizzyDon62

DizzyDon62

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Hello as you know im new here and also not all that long being deaf since april my last ear surgery. My doctor says he wants to give me a cochlear implant and I received an information kit in the mail and the make he likes to use is made by Med-EL. What I would like to know is how good they are and if any of you have them and are you happy with them. I find this hard im just so confused right now im going for the implant because of my kids but I will always be deaf no matter what. Learning lip reading is hard but gets better each day and the finger spelling sur helps but I find my friends give up truing to talk to me now and ignore me. Sorry for the vent but I would like to know about the implant Don
 
Welcome! :)

Sorry to hear that you lost your hearing as a result of a surgical accident. The good thing is that people like you who have a good history of hearing, tend to do pretty well with cochlear implants.

There are a couple of posters here who have Med-El implants and they seem very happy with them. Did you ask your doctor why he was particularly recommending them for you? The other available brands are Advanced Bionics and Cochlear.

If you have any other questions feel free to ask. I remember how confused I felt when my hearing loss suddenly increased to the point that I needed a CI.
 
Hmm... you said, "doctor wants".

It should be what YOU want, not what the doctor wants.
 
VamPyroX said:
Hmm... you said, "doctor wants".

It should be what YOU want, not what the doctor wants.
Click to expand...

i concur. that doctor should be fired or censured for imposing his or her zealous belief upon you, don.
 
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Hmm... you said, "doctor wants".

It should be what YOU want, not what the doctor wants.
Click to expand...

So Right!! Agreed!!
Take your time and think about what you want!

This has to be a difficult time for you.
 
Thankyou for your input

I did forget to mention I have Bilateral Meniere's Disease and had a labyrinthectomy done on my right ear in feb 05 that cured the vertigo and in april this yr I sac decompression surgery on my left it was 3 days later the last of my hearing went and there was very little left my hearing aid was not doing very much at all and I knew the risk going into the surgery the plus side of the surgery is I retired my walker after5 yrs no more vertigo I have adapte to not hearing well since 2002 with the fluctuating hearing loss this diseas has taken alot out of me even put me on disability but life goes on just the same as my going deaf its not the end of the world im learning lip reading even find it funny when you see someone swear lol so again thankyou all for your input Don
 
It sounds like you have a good attitude Don - I'm glad that the surgery has helped the vertigo a lot. Lipreading skills are very valuable and will continue to be valuable even if you decide to get a cochlear implant. Not everyone can develop this skill later in life so you are fortunate!

I think the other posters were concerned from the way you wrote your first post that your doctor wants for you to have a cochlear implant against your wishes. Is it something that you want to do for yourself?
 
About the implant

My doctor felt so bad for my hearing loss and suggested the implant and I thought it would be a good idea as I have not seen 3 out of my 4 kids in 7 years since my exwife put them in foster care. Its a long story wont go there but im so close to getting them back and the thing is they don't know much about me right now other than they want to be with me. I know there is nothing to say that the implant will give me my hearing back but I feel its worth taking a chance for my kids they have no clue there father is even deaf. The only thing that they where told is that I was to sick to look after them back then and sad to say it was the truth. Even with the implant im still apart of a whole new world that I have been preparing myself for now since I had the labyrinthectomy on my right ear in 05. I use some ASL at home but I found lipreading more practical outside the home , shopping , banking , seeing friends that sort of thing. I really do understand your concearns and thankyou for them this is a big decission to make and another surgeryy on my left ear but I feel I need to take the chance thanks so much Don
 
VamPyroX said:
Hmm... you said, "doctor wants".

It should be what YOU want, not what the doctor wants.
Click to expand...

Ditto that as we only know our bodies as well those kind of doctors are money beggers... sorry for being blunt... I would go for second opinion... What if you did follow the doctor's order then the next thing you'll regret it... IT YOUR HEALTH not your DOCTOR's grr...
 
Canuckian_Chick said:
Ditto that as we only know our bodies as well those kind of doctors are money beggers... sorry for being blunt... I would go for second opinion... What if you did follow the doctor's order then the next thing you'll regret it... IT YOUR HEALTH not your DOCTOR's grr...
Click to expand...

I think we can calm down now. Dizzydon clarified that his doctor suggested it, rather than ordered it and that the CI is something that he would like for himself.

Also, I think the doctor who suggested it may not be the actual CI doctor but rather was the doctor who did the vertigo surgery that resulted in the hearing loss as a side effect. If I was a doctor and did some surgery that resulted in a side effect such as further loss of hearing I would feel bad too.

Let's get on with supporting Dizzydon rather than attacking the doctor who we don't even know.

Dizzydon, good on you for looking around for more information. If you want to get a second opinion with another doctor or CI clinic then do that.

You can find information about other brands:-
Advanced Bionics:BionicEar.com International Home Page - Advanced Bionics Cochlear Implants

Cochlear Cochlear, innovator of the Nucleus Freedom cochlear hearing implant system
 
Thanks R2D2

Thanyou for those 2 sites both Bionic Ear and Nucleus Freedom both are offered by the Cochlear Team at my hospital so I emailed them to send me there information kits on both. The 2 sites tell you what hospitals in your Province uses them I was supprised how much information there was to read.I think im alot more well informed as to what products are availible to me at my hospital now I can't wait to see what kind of information package they put together for me. The information package I received about the Med-EL impant had a DVD showing the surgery aswell as a few booklets on there products lots of information. So thankyou again R2D2 for the 2 sites

Don
 
Hello, and welcome to AllDeaf, Don.....may I ask how old you are? Wishing nothing but the best for you.....
 
DizzyDon62 said:
My doctor felt so bad for my hearing loss and suggested the implant and I thought it would be a good idea as I have not seen 3 out of my 4 kids in 7 years since my exwife put them in foster care. Its a long story wont go there but im so close to getting them back and the thing is they don't know much about me right now other than they want to be with me. I know there is nothing to say that the implant will give me my hearing back but I feel its worth taking a chance for my kids they have no clue there father is even deaf. The only thing that they where told is that I was to sick to look after them back then and sad to say it was the truth. Even with the implant im still apart of a whole new world that I have been preparing myself for now since I had the labyrinthectomy on my right ear in 05. I use some ASL at home but I found lipreading more practical outside the home , shopping , banking , seeing friends that sort of thing. I really do understand your concearns and thankyou for them this is a big decission to make and another surgeryy on my left ear but I feel I need to take the chance thanks so much Don
Click to expand...

I sympathize with all that you are going through, Don, and I understand that this is a hard time for you. Please take your time and make sure that this is something you want. If you decide to go ahead with the implant because it is something you want, then I wish you well. But with CI or without CI, you will still be deaf, and this is something that will need to be explained to your children. I doubt that it will have any effect on how they feel about you. You are their father, and they love you no matter your hearing status.

Living with a deaf parent could provide a benefit to your children, as well. Seeing what it means to be deaf from an intimate perspective like that very often makes kids much more empathetic to other people and all other handicaps, and they become more tolerant, understanding, and kind.
Right now, your focus needs to be on how the implant would affect your life. Your children will be fine either way. The most important thing for your children is that you love them, not whether you can hear.
 
DizzyDon62 said:
Thanyou for those 2 sites both Bionic Ear and Nucleus Freedom both are offered by the Cochlear Team at my hospital so I emailed them to send me there information kits on both.
Don
Click to expand...

Not a problem :) You're fortunate to have a choice of all 3 brands at your hospital - not all places offer that. It's a hard choice as they are all pretty good. We are mostly Nucleus on this board but have been getting more AB and Med-EL users in recent months.

Also, best wishes with getting the custody of the children. It must have been a very difficult time for you having the vertigo, decreasing hearing and that as well on top of it all.
 
jillio said:
But with CI or without CI, you will still be deaf, and this is something that will need to be explained to your children. I doubt that it will have any effect on how they feel about you. You are their father, and they love you no matter your hearing status.
Click to expand...

Actually, when I read Don's words I didn't think he was worried about what the kids thought. I assumed that he was more worried about the authorities who decide the welfare of his children and the practical aspects of parenting, such as being able to hear them when they were calling for help from the back yard for example.
 
I heard back from the CI Team

Well I received an email back from the CI Program and there response as to why they only sent the information on the Med-EL implant is due to the fact I have Meniere's Disease and still have tinnitus. They have more success using this implant with Meniere's patients but they still sent out the other info in the mail and will explain the differance to me when we meet. Thanks to you guys im better informed and I feel much better now I know the reason why I only received information on the Med-EL. So thanks to all and thanyou so much R2D2 Don
 
DizzyDon62 said:
Well I received an email back from the CI Program and there response as to why they only sent the information on the Med-EL implant is due to the fact I have Meniere's Disease and still have tinnitus. They have more success using this implant with Meniere's patients but they still sent out the other info in the mail and will explain the differance to me when we meet. Thanks to you guys im better informed and I feel much better now I know the reason why I only received information on the Med-EL. So thanks to all and thanyou so much R2D2 Don
Click to expand...

Wow that's interesting about their noticing different results with the Med-El for Menieres. I would make a list of all the other questions that you have to ask at the next meeting you have with them too. I think the more in control and empowered you feel about the whole process, the happier you will feel about your choices.

Also, I had very bad tinnitus too before I received my cochlear implant and it has improved dramatically over a period of a year. There was a recent study that found that about 70% of people had an improvement in their tinnitus after cochlear implantation. So no guarantees but certainly a chance of it happening!
 
Hi Don I just joined AD. I have no experience of cochlear implant, but wish you all the best. Your children will love you regardless... DeafboyOne
 
Mt choice in CIs

Well R2D2 I will be going in with alot of questions about the 3 brands my tinnitus is 24/7 in both ears and sometimes goes multi tone. The other thing with meniere's you get a feeling of preassure or fullness in the ears I tell you this disease drives you nuts im just happy the vertigo is gone for now cause that was almost 24/7. For those who don't know what vertigo is think of your worst hangover and then get on a winding twisting rollercoaster for a few hours cause my attacks could last up to 18 hours. R2D2 I have so many questions alreay to ask the implant team I want to know what my odds are of hearing again and if all this will be worth it. Thanks again Don
 
R2D2 said:
Actually, when I read Don's words I didn't think he was worried about what the kids thought. I assumed that he was more worried about the authorities who decide the welfare of his children and the practical aspects of parenting, such as being able to hear them when they were calling for help from the back yard for example.
Click to expand...

I guess Don will have to clarify that. He said semed like it would be worth it for his kids because they don't have any idea their dad is deaf. Looks like we simply read it two different ways.
 
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