Cochlear Implant Patients.

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HHIssues said:
zebadee,

A CI would probably also help you to maintain your speech, probably more so than any hearing aids would at this point.
Click to expand...
Not always.
I remember Bear who was a post-lingual deaf woman who lost her hearing as a teen who used to post here. She said she heard better with HAs than with CI.
 
HHIssues said:
zebadee,

A CI would probably also help you to maintain your speech, probably more so than any hearing aids would at this point.
Click to expand...

My speech has been the one thing that has been normal. Other than my knowledge of computers and games! :)
 
zebadee2010 said:
My speech has been the one thing that has been normal. Other than my knowledge of computers and games! :)
Click to expand...

Yes - however we're actaully talking about maintaining your speech.

When you aren't able to naturally hear your voice for a period of time you begin to have subtle changes in how you pronounce words - changes that you are completely unaware of because you can't hear the subtleties.


It will become very important for you to practice reading aloud a lot ,everyday. Also have some people you trust monitor any changes in how you pronounce things.
(you might also consider volunteering at reading program where teens/adults read aloud to children/young adults etc at a library, hospital, school etc)
 
zebadee2010

I know that you may not be ready to accept this yet - or to understand the value of this yet but I'm going to give you a link for a company called SonicAlert. They make all sorts of things for people who are Hoh and deaf (including those with CIs). They are one of the major companies that makes visual signallers such as I'd mentioned before. I recommend SonicAlert because they have excellent customer service and their stuff lasts forever (I've had my system for 15years)

There are a number of household sounds which were easy to distinguish when you were hearing - that are going to be much less obvious with the CI and there are going to be some times that you aren't going to be wearing the CI and you'll need to be able to know what sounds are going on in your house (now, and especially once you're living on your own)

If it makes you feel any better - I have one side that is completely totally deaf, and the other side that is Hoh (with my hearing aid I can basically HEAR at a normal level, but I still don't UNDERSTAND sounds the same way I would if I had natural hearing). I use visual and tactile signallers all over my home so that I KNOW that I'll be aware when the phone rings, doorbell dings, when the alarm clock goes off, or there's a fire in the other room etc.

People with CIs DO need these type of devices - unless you really want to have someone treat you like a 3year old for the rest of you life? (get you up each morning etc)


I'd recommend getting a basic starter kit (Alarm Clock that has a "receiver" built in), door and phone signaller - SonicAlert calls it their Combination Signaling System

This system will cover all the basic things you need, and can be added to later. The devices simply plug into any electrically wall outlet and are are powered and connected to each other by the wall voltage.

It might also be a good idea to get the built-in-strobe signaller which you can plug into any electrical outlet, such as the bathroom etc to know that something is happening (good for when taking a shower etc)


In my bedroom I have a 150watt lightbulb that I've mounted on the wall - it's just a mountable socket (the correct one to handle the 150watt bulb) and then the cord runs down the wall to a nearby electric outlet. The Lightbulb is a standard (not the new compact flor.) and it's plugged into a receiver. The lightbulb will flash (1 flash be sec about) whenever one of the devices are "triggered" - ie someone rings the doorbell, the phone rings etc.

The Alarmclock also has a "bed shaker" - for when you are sleeping. It gives you the option to flash the light (a lamp etc you plug in), shake the bed (it's strong- you won't miss it), or do both... that way you don;t have to worry about not "seeing" the lights when you are sleeping (most deaf people get really good at detecting subtle light changes and vibrations)

The one thing you'll want to do is plug the devices into a surge protecting power-bar/multi adaptor (you can get the ones that plug into the entire outlet and then give you 6 outlets instead of 2). This will prevent any electrically surges from accidentally triggering the devices ... something that is more of a issue in apts and older homes.


If you have any questions about these signallers - please feel free to ask - I'd be happy to help you navigate your way though this and help you become as independent as you want to be :)


DO NOT feel that using these type of devices is a "crutch" - they are just devices that are made to be perfect for those with anything other than naturally perfect hearing. Just like the CI will help you interpret the sounds around you, these visual signallers will help you interpret the sounds in your life. In fact having the visually signallers will HELP you learn what specific things sound like because it will clearly state (the pattern of the flashing light) WHAT you are hearing - ie the phone versus the doorbell etc.




Another thing you will likely want to look into is a VCO (voice Carry Over) telephone. This is a phone that allows you to speak to the person on the other end, and their words are then typed out so that you can easily read and understand what is being said. You use a VCO phone and call through a Relay operator (711 in Canada and USA) who will translate the other person's speech into text for you.


You can also place calls using IM on a phone or cell - using relay as well. Basically it's like using IM to make a phone call - there is a "Relay operator", a person who acts as a "voice to text" and "text to voice" translator. You type what you want to say, the Relay Operator speaks it to the person you are calling, then when the person replies back the Relay Operator will type if for you to read.

Phone communication is something that is often the MOST difficult - there are LOTS of CO people who can understand speech WELL face to face, but not at all over the phone.
I'd recommend looking into VCO phones as well as learning about the various "Relay Services" that are available via computer and cell phone.

If you live in the USA here are some of the websites that offer IP relay (you place your call from within their website) or IM relay (you use MSN/YAHOO/AIM etc to place a call connecting to a specific "buddy"/contact)
http://www.ip-relay.com/
https://www.sprintip.com/
http://www.purple.us/purple/ (look for the "IP relay")



If I can help walk you through ANY of this - please feel free to PM me privately, or post here.



These devices will help you be the independent person that you want to be - don't let pride stop you from using something that could help you.


P.S. I don't work for, nor am I connected to Sonic Alert in any way ... I just REALLY REALLY LOVE THEIR PRODUCTS!!!
 
Anij said:
zebadee2010

I know that you may not be ready to accept this yet - or to understand the value of this yet but I'm going to give you a link for a company called SonicAlert. They make all sorts of things for people who are Hoh and deaf (including those with CIs). They are one of the major companies that makes visual signallers such as I'd mentioned before. I recommend SonicAlert because they have excellent customer service and their stuff lasts forever (I've had my system for 15years)

There are a number of household sounds which were easy to distinguish when you were hearing - that are going to be much less obvious with the CI and there are going to be some times that you aren't going to be wearing the CI and you'll need to be able to know what sounds are going on in your house (now, and especially once you're living on your own)

If it makes you feel any better - I have one side that is completely totally deaf, and the other side that is Hoh (with my hearing aid I can basically HEAR at a normal level, but I still don't UNDERSTAND sounds the same way I would if I had natural hearing). I use visual and tactile signallers all over my home so that I KNOW that I'll be aware when the phone rings, doorbell dings, when the alarm clock goes off, or there's a fire in the other room etc.

People with CIs DO need these type of devices - unless you really want to have someone treat you like a 3year old for the rest of you life? (get you up each morning etc)


I'd recommend getting a basic starter kit (Alarm Clock that has a "receiver" built in), door and phone signaller - SonicAlert calls it their Combination Signaling System

This system will cover all the basic things you need, and can be added to later. The devices simply plug into any electrically wall outlet and are are powered and connected to each other by the wall voltage.

It might also be a good idea to get the built-in-strobe signaller which you can plug into any electrical outlet, such as the bathroom etc to know that something is happening (good for when taking a shower etc)


In my bedroom I have a 150watt lightbulb that I've mounted on the wall - it's just a mountable socket (the correct one to handle the 150watt bulb) and then the cord runs down the wall to a nearby electric outlet. The Lightbulb is a standard (not the new compact flor.) and it's plugged into a receiver. The lightbulb will flash (1 flash be sec about) whenever one of the devices are "triggered" - ie someone rings the doorbell, the phone rings etc.

The Alarmclock also has a "bed shaker" - for when you are sleeping. It gives you the option to flash the light (a lamp etc you plug in), shake the bed (it's strong- you won't miss it), or do both... that way you don;t have to worry about not "seeing" the lights when you are sleeping (most deaf people get really good at detecting subtle light changes and vibrations)

The one thing you'll want to do is plug the devices into a surge protecting power-bar/multi adaptor (you can get the ones that plug into the entire outlet and then give you 6 outlets instead of 2). This will prevent any electrically surges from accidentally triggering the devices ... something that is more of a issue in apts and older homes.


If you have any questions about these signallers - please feel free to ask - I'd be happy to help you navigate your way though this and help you become as independent as you want to be :)


DO NOT feel that using these type of devices is a "crutch" - they are just devices that are made to be perfect for those with anything other than naturally perfect hearing. Just like the CI will help you interpret the sounds around you, these visual signallers will help you interpret the sounds in your life. In fact having the visually signallers will HELP you learn what specific things sound like because it will clearly state (the pattern of the flashing light) WHAT you are hearing - ie the phone versus the doorbell etc.




Another thing you will likely want to look into is a VCO (voice Carry Over) telephone. This is a phone that allows you to speak to the person on the other end, and their words are then typed out so that you can easily read and understand what is being said. You use a VCO phone and call through a Relay operator (711 in Canada and USA) who will translate the other person's speech into text for you.


You can also place calls using IM on a phone or cell - using relay as well. Basically it's like using IM to make a phone call - there is a "Relay operator", a person who acts as a "voice to text" and "text to voice" translator. You type what you want to say, the Relay Operator speaks it to the person you are calling, then when the person replies back the Relay Operator will type if for you to read.

Phone communication is something that is often the MOST difficult - there are LOTS of CO people who can understand speech WELL face to face, but not at all over the phone.
I'd recommend looking into VCO phones as well as learning about the various "Relay Services" that are available via computer and cell phone.

If you live in the USA here are some of the websites that offer IP relay (you place your call from within their website) or IM relay (you use MSN/YAHOO/AIM etc to place a call connecting to a specific "buddy"/contact)
IP-Relay: The Leading IP-Relay Service for Deaf and Hard of Hearing People
https://www.sprintip.com/
Purple Your Way! (look for the "IP relay")



If I can help walk you through ANY of this - please feel free to PM me privately, or post here.



These devices will help you be the independent person that you want to be - don't let pride stop you from using something that could help you.


P.S. I don't work for, nor am I connected to Sonic Alert in any way ... I just REALLY REALLY LOVE THEIR PRODUCTS!!!
Click to expand...

Thanks for all the advice. Went you first said visual fire detector i assumed that it would be pointless if i were asleep. But i wasn't away that it was a strobe light or something similar.

And i mist say i'm not being prideful. And after knowing more about these products some sound useful. I'm hoping i'll be able to talk on the phone but if not i'll keep these things in mind.

I do want to be independent. But I also don't want to have things in every room. I'll probably wear this Ci most of the time but when i'm not these things will / can be helpful.
 
Hey what part of NC are you in.... Are you getting your operation in NC... We might not be to far apart. I'm getting mine in Norfolk Virginia. I know alot of people who live right across the nc line usually come to va to get ther operations.
 
zebadee2010 said:
Thanks for all the advice. Went you first said visual fire detector i assumed that it would be pointless if i were asleep. But i wasn't away that it was a strobe light or something similar.

And i mist say i'm not being prideful. And after knowing more about these products some sound useful. I'm hoping i'll be able to talk on the phone but if not i'll keep these things in mind.

I do want to be independent. But I also don't want to have things in every room. I'll probably wear this Ci most of the time but when i'm not these things will / can be helpful.
Click to expand...

I'm glad that you are starting to at least consider these devices ... they really will make a HUGE HUGE difference in your life - remove a LOT of the stress from your "home life" (any time you spend at home).

I would gently urge you to at the very least - consider getting the SonicBoom Alarm clock (the one that has a receiver - model SB1000ss) now as it's the best Alarmclock hands-down and it for sure is something you'll need now and for many many many years to come. You can order SonicAlert items directly from SonicAlert, but also through many Audiologists offices or local hearing centres.

Then SonicBoom SB1000ss will receive ("listen" to other sonic devices) so you'll be able to add on things like a phone flasher, doorbell signaller etc as you/need want.

Just so you know - the system isn't "visible" in every room - only YOU will know that it is in place. you just plug the unit into an electric outlet and then connect it to a lamp (some models will allow you to use that light for normal room lighting as well as signalling) then when the device is triggered (phone rings etc) the light flashes. I've had LOTS of people over that had no idea I had any special devices at all - unless the phone rang while they were over.

Please consider private messaging me if you have any questions that you would like to be discrete about. I didn't have any "special stuff" (visual signallers etc) growing up and it was MUCH harder than it had to be. Getting the signallers made a BIGGER difference in my life than my Hearing Aid in many ways - because visual signallers and amplified/VCO phones and TTYs truly allow me to RELAX in my house. I don't have to worry about "did I hear that right?" - "did I miss the doorbell?" -"was that the water running or did the phone ring?" ... all those questions that will be part of your daily life can be easily handled, all the stress of it can be erased with signallers etc. They are truly amazing :)
 
Zebadee,

Good Luck next week, I hope everything goes well. Just remember it will take time for your brain to learn to make sense of the sounds you will get with the implant. Just be patient.

Another assistive device you might consider it made by a company called Life Tone Technologies. It combines an alarm clock with bed shaker as well as a sensor that picks up the tones of a smoke alarm. If the smoke alarm goes off, the bed shaker will activate. I have also used Sonic Alert Alarm Clocks and they are great!

Good Luck and keep us posted!
 
Deb1hd said:
Hey what part of NC are you in.... Are you getting your operation in NC... We might not be to far apart. I'm getting mine in Norfolk Virginia. I know alot of people who live right across the nc line usually come to va to get ther operations.
Click to expand...

We are getting the surgery done in Raleigh, NC. Seems to be one of the better places in NC to get it done.

And thanks for all the good luck wishes, i'm just hoping that i feel not that much pain afterwards..And i really hope my ears dont ring
 
Zebadee,

Don't worry about the pain. They keep you pretty doped up with local numbing. If your surgery goes anything like mine. I had pretty bad ringing in my right ear before surgery. The night after the surgery the ringing was pretty loud but did settle down ( due to the invasion of your cochlea). I could not feel pretty much any pain just some discomfort and drainage feeling going on inside the ear.I could not feel my right side of head for about a week. I also experienced mild loss in taste for about 3 weeks. My surgeon cut directly behind my ear there was no shaving of any hair at all for me. My advise to you is try to relax as much as u can because I freaked out bad this was my first surgery ever and I was pretty nervous and all was for naught. You should get a bunch of DVD's and books to help give you something to do while you heal up. There is to be absolutely no bending over for awhile so rest as much as you can. I was given 30 pain pills for my recovery I think I only used like 10 total and I did not take them for pain, Mainly took them to help me sleep due to having trouble getting comfortable sleeping on one side till I healed up. I am looking forward to reading more from you after your surgery and seeing how you progress with the implant. Good luck and keep us posted.
 
Anij said:
Yes - however we're actaully talking about maintaining your speech.

When you aren't able to naturally hear your voice for a period of time you begin to have subtle changes in how you pronounce words - changes that you are completely unaware of because you can't hear the subtleties.


It will become very important for you to practice reading aloud a lot ,everyday. Also have some people you trust monitor any changes in how you pronounce things.
(you might also consider volunteering at reading program where teens/adults read aloud to children/young adults etc at a library, hospital, school etc)
Click to expand...
Yes, I've been told by some late deafened CI users that their speech did deteriorate a bit over the course of time when wearing HA's only for it to get better again once they started wearing the CI.
 
Deaffy said:
Zebadee,

Don't worry about the pain. They keep you pretty doped up with local numbing. If your surgery goes anything like mine. I had pretty bad ringing in my right ear before surgery. The night after the surgery the ringing was pretty loud but did settle down ( due to the invasion of your cochlea). I could not feel pretty much any pain just some discomfort and drainage feeling going on inside the ear.I could not feel my right side of head for about a week. I also experienced mild loss in taste for about 3 weeks. My surgeon cut directly behind my ear there was no shaving of any hair at all for me. My advise to you is try to relax as much as u can because I freaked out bad this was my first surgery ever and I was pretty nervous and all was for naught. You should get a bunch of DVD's and books to help give you something to do while you heal up. There is to be absolutely no bending over for awhile so rest as much as you can. I was given 30 pain pills for my recovery I think I only used like 10 total and I did not take them for pain, Mainly took them to help me sleep due to having trouble getting comfortable sleeping on one side till I healed up. I am looking forward to reading more from you after your surgery and seeing how you progress with the implant. Good luck and keep us posted.
Click to expand...

I'm not so much worried about the surgery exactly. More worried about going in and getting that initial IV for the anesthesia and also any pain that may develop after surgery. I've also watched the surgery on youtube as mentioned before and they cut behind the ear on that as well but as i have long hair they will probably shave just a bit of hair.

Recovery, I think i'm going to do lots of reading during that first week, hopefully not longer than that.

And i will definitely try and keep you guys posted on whats going on and how well i'm progressing. If all goes well, there won't be much to tell but i highly doubt thats the case! lol
 
LOL! yeah when they put the IV's in pre-op I couldn't look and said to my parent's. " Should we just walk out now I am scared I am making the wrong decision" My dad told me to be still and shut up lol.. I got really scared when I seen on the screen that they were also performing a mastoidectomy ( sp). I was never aware that was going to happen. But when I woke up from surgery I was amazed that there was no pain or any dizzyness whatsoever. Some people experience some issue's with the anesthesia. I was just really tired for about a week and a half and felt drunkish when I would walk. By far the worst part of the entire process for me was the waiting to be activated. While I was waiting I would read forum's and wrote some poetry and just really vegged out watching the tube.
 
Deaffy said:
LOL! yeah when they put the IV's in pre-op I couldn't look and said to my parent's. " Should we just walk out now I am scared I am making the wrong decision" My dad told me to be still and shut up lol.. I got really scared when I seen on the screen that they were also performing a mastoidectomy ( sp). I was never aware that was going to happen. But when I woke up from surgery I was amazed that there was no pain or any dizzyness whatsoever. Some people experience some issue's with the anesthesia. I was just really tired for about a week and a half and felt drunkish when I would walk. By far the worst part of the entire process for me was the waiting to be activated. While I was waiting I would read forum's and wrote some poetry and just really vegged out watching the tube.
Click to expand...

As i've said a few time before this isn't my first "surgery" I've have several picc lines put in. They always did anesthesia for that too. I really hate those IV's though. As soon as it was in i just assumed that they were running anesthesia then and felt tired but in fact they were only running saline.. lol

And i looked up the mastoidectomy and apparently that can be cause by inner ear infection, and is usually done to remove infection. May be something that happened before. And when you say you saw it on screen, I hope you mean before surgery?! lol, i would hate to see that during surgery!!
 
Deaffy said:
LOL! yeah when they put the IV's in pre-op I couldn't look and said to my parent's. " Should we just walk out now I am scared I am making the wrong decision" My dad told me to be still and shut up lol.. I got really scared when I seen on the screen that they were also performing a mastoidectomy ( sp). I was never aware that was going to happen. But when I woke up from surgery I was amazed that there was no pain or any dizzyness whatsoever. Some people experience some issue's with the anesthesia. I was just really tired for about a week and a half and felt drunkish when I would walk. By far the worst part of the entire process for me was the waiting to be activated. While I was waiting I would read forum's and wrote some poetry and just really vegged out watching the tube.
Click to expand...

Ditto, I didn't have saline or had the bag hanging above my head, the cannula were put in as soon i went into preparing room next to the OR. After the op, I had 2 lots of 50ml of anti bios pushed in, one during the afternoon and last one at bed time, the cannula was taken out the next morning. I had no pain at all, just tightness, sore throat and stiff neck. I felt really tired so napped every day which helped for 2 weeks. I had to waith 5 weeks for my activation day!
I didn't veg out much, I was driving again 3 days after (short distances) and had horses to look after!...
 
overthepond said:
Ditto, I didn't have saline or had the bag hanging above my head, the cannula were put in as soon i went into preparing room next to the OR. After the op, I had 2 lots of 50ml of anti bios pushed in, one during the afternoon and last one at bed time, the cannula was taken out the next morning. I had no pain at all, just tightness, sore throat and stiff neck. I felt really tired so napped every day which helped for 2 weeks. I had to waith 5 weeks for my activation day!
I didn't veg out much, I was driving again 3 days after (short distances) and had horses to look after!...
Click to expand...

I'm guessing that cannula is the technical term for IV.. lol.
I really don't like them either way, and i kinda freak out having things pumped into my blood stream but i have more or less gotten used to it with the picc line..

Not really scared of the anesthesia but don't like it either way.

But the again surgery wasn't meant to be fun!! lol :lol:
 
Sorry that I didn't explain it better. When I was in pre-op they were asking me questions and stuff and was on the computer inserting the information and on the computer screen I seen my name and " Cochlear Implant with mastoidectomy". I had no clue that I was having the mastoidectomy untill well the day of surgery. That scared me because I had not been informed that the procedure was needed. I assume that my surgeon seen the problem when I had my CT done. Either way surgery was a success.
 
Deaffy said:
Sorry that I didn't explain it better. When I was in pre-op they were asking me questions and stuff and was on the computer inserting the information and on the computer screen I seen my name and " Cochlear Implant with mastoidectomy". I had no clue that I was having the mastoidectomy untill well the day of surgery. That scared me because I had not been informed that the procedure was needed. I assume that my surgeon seen the problem when I had my CT done. Either way surgery was a success.
Click to expand...

Its always better to see a success than a failure!
 
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