Cochlear Implants

Angelsmom: Reading the story about your mom just makes me want to cry. It's sad when tinnitus becomes so bothersome that it's the only thing you can concentrate on.

Has your mother ever been seen an ENT? I know some people have been helped to a greater or lesser degree by medication to help ease or reduce tinnitus. I'm sure an ENT would know more about this and could suggest further treatment based on your mother's symptoms.

I'm not a doctor, but I wonder if the dizziness your mother is experiencing might be associated with Meniere's?

Just trying to throw out some ideas in the hopes that one of them helps! :)
 
Thank you! Yes she has seen one. I suggested the Menieres to them, but I am not sure if they ever brought it to the attention of the ENT. I need to ask them. I've been doing lousy myself and have not been able to devote the time I need to with them. I'll ask my Dad tomorrow and see if they ever got an answer. Do you have that too??
 
Angelsmom: No, I don't have Meniere's. My deafness was caused by a combination of prematurity/low birth weight (from a disease called retinopathy of prematurity), antibiotics given to me as a child for ear infections, years of untreated allergies/blocked Eustachian tubes and progressive sensorineural hearing loss.

Several of my friends have Meniere's and it's not fun. One person I know experiences vertigo and nausea. Another friend of mine experiences fluctuations in her hearing which can be difficult to predict and treat. She doesn't wear hearing aids, but when her Meniere's acts up, she has what equates to a mild hearing loss.

I really do hope that you're able to find the answers you need to help your mother. ((((Hugs))))

In the meantime, asking your mother's ENT about Meniere's is a good place to start. I'd be interested in knowing what you find out tomorrow. Good luck!! :)
 
Hi everyone,I'm new to these forums.I'Ve got partial hearing in 1 ear which keeps deteriorating and zero hearing in the other which has just been implanted with ci 3 weeks ago and i hve just started using speech processor.I get tinnitus 24/7 for most of my life. My first impression of c.i is it will make it worse as when i was first switched on i just had crazy levels of tinnitus that pretty much smothered any sound i was getting.It's now turned down afair bit from that level and i still get ringing but it seems to go away until i come across loud noise.I guess i'm at the begining and it should get better with time,right?
 
Mc Gusto: Yes, it will. :)

You and I have had our CIs for the same period of time. (My activation was January 18th). I experienced a good deal of tinnitus following my CI surgery. My tinnitus alternated between a high pitched beep, ocean wave and roaring freight train. Just when I became used to one sound, it would change to something else. At 2 1/2 weeks post-op my tinnitus quieted down considerably to where I was only hearing a mild ocean wave sound.

Ever since my CI was activated, I no longer experience tinnitus except when my speech processor is off.

I think the tinnitus you're describing is normal and should subside gradually. You may want to let your audiologist know about the tinnitus so that he/she can keep this in mind when you are given hearing and word/sentence discrimination tests at a later date. Some people with tinnitus report having difficulty separating their tinnitus from the tones or words they are hearing.

If this continues to be bothersome to you, perhaps your ENT can prescribe medication to help ease the tinnitus.

Good luck! :) If you'd like to chat more about CI experiences, etc. please feel free to PM me! :)
 
Well i can actually get a bit of sound out of my implant now 3 and a half weeks into mapping ,seems to go best with speech in quiet enviroments but it is pretty good with music too.I keep the volume down low ( 2 or 3) otherwise i get the ringing and my hearing is worse than if i didn't wear speech processor (i have some hearing in my other ear) .But yeah it's pretty good in combination with the hearing in my other ear ,both ears are missing out on different sounds but they kinda fill each others gaps . Almost forgot to say watching tv with captions is a good way to farmiliarize yourself with how words sound through the implant.
 
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Question on the mapping

Hello I guess u could call me a newbie here but I posted a question somewhere earlier ( I think it was in the introduce myself forum) but anyway.. let me get to the point. :)

I am scheduled to have a CI done in a couple of wks and I am just wondering if anyone out there has any suggestions/advice on the mapping and retraining of the hearing. Such as pitches, tones and maybe music.. I maybe jumping the gun here but just curious.

mrssmokeybiker
 
One of the most important pieces of advice I can give you is to go into the activation and mapping process with "high hopes and low expectation." In other words, do not go into your activation with the expectation that you will understand speech the moment your CI is turned on. Most people incorrectly assume that they should be able to understand speech right away and are severely dissappointed when they can't.

It's okay if you can't make sense of anything you hear -- or if you don't like the sound of what you're hearing! (My CI audiologist told me that I'd probably hate my CI during the first few days after my activation.) Some people report voices sounding like Donald Duck, Mickey Mouse on helium or Darth Vader. You may or not experience the same thing. I didn't. For me, voices sounded metallic and extremely high pitched.

The process of listening with a CI takes time and must be done in small baby steps. Before you can walk, you must crawl. The same is true with a CI. Before you can understand speech, your brain needs to adjust to a new way of hearing. Most likely you will hear high frequencies that you've never heard before or haven't heard in a very long time.

When your CI is activated, you will set what is known as T and C levels. T (threshold) levels are the softest sounds you can hear. C (comfort) levels are the loudest sounds you can hear without experiencing discomfort. The two of them together create what is known as a dynamic range -- the area between the softest and loudest sounds you can hear. During your initial mappings, your dynamic range will be very limited. However, with each mapping, your dynamic range increases allowing you to hear more sounds with your CI.

Back to T and C levels: These are set by listening to a series of 3 beeps. When setting the T levels, you will tell your audiologist the point at which you can barely hear a beep. This will be done for all of the electrodes in your CI. When setting C levels, you will also listen to a series of 3 beeps, but tell your audiologist when they are loud -- but not loud enough to cause discomfort. C levels are difficult for many people to set appropriately. For example, at my activation, I felt rather than heard a majority of pitches. This was due to the fact that I haven't heard these frequencies in a very long time (10 years). If this happens to you, don't be alarmed. With subsequent mappings, your brain will begin to make sense of what it is hearing and you will hear these frequencies instead of feeling them as a vibration. My CI has been activated for a little over a month and I no longer "feel" high frequencies -- I hear them.

I hope I haven't overwhelmed you with alot of information. :) If you have any other questions or would like to ask me questions about my own experiences, please feel free.

By the way, what CI have you chosen? I have the Nucleus 24C with 3G BTE speech processor.

Good luck! :)
 
Hear Again, you said it all for me!

I also have Nucleus 24 with a 3G BTE.

SmokeyBiker, I was activated last June. My audiologist says it will take up to a year to find that perfect sound/setting so you will have to go through several mappings before you can find your ideal one.

Good luck!
 
Hi Meg!

Are you able to understand speech or use the phone?

I started understanding a few words 2 weeks post activation. Unfortunately I lost all of that discrimination after my second mapping because my C levels were set too high. :(

However, at my one month evaluation, my audiologist put an older map on my 3G and my speech discrimination returned. My test results for pure tone, single words, sentences in noise and sentences in quiet showed the following percentages:

20-30 dB across all frequencies (except for 35 dB at 6000 Hz)
26% for single words
67% for sentences in quiet
39% for sentences in noise

I still have some difficulty understanding unfamiliar voices, but I know that will come in time. :)

Two of the most exciting CI moments I've had thus far were hearing the rain and using a cell phone (both for the first time in 10 years).

It has been an amazing journey so far! :)
 
Question on Mapping

Hear Again and Meg:

Thanks for the input.. no it is not overwhelming.. I just wanted to bascially know what to expect as far as mapping.. I do not have very high expections at all. I have been HA'd all of my life and all of sudden about two years ago my hearing starting worsening to the point that HA's did not help me and this went on for about 2 years. Then last summer all of sudden it started again and I was like "OH NO not again" and eventually I realized my hearing was not getting any better so I finally decided to go see the dr that specializes in this type of surgery/deafness. I was thinking before all of this happened with my hearing that why go to surgery if I still can use HA's but now that HA's dont work for me at all anymore, I realized I was at that point to where either I be totally deaf or go for it to see if can hear again. So I chose to go for it since I really don't have anything to lose anyway and hopefully LOTS to gain :)

To answer Hear Again's question to what implant I am going with is HiResolution™ Bionic Ear System. I do get a bit confused when I talk about the names of the implants :Oops: But I do know I chose the one with rechargble batteries. I admit when Dr told me I was a candiate for the CI, I was a bit upset bec I am not crazy about surgery so it took me a while to come around and finally decided. I did talk to a few ppl that I knew that have CI's and all have been positive about it.

mrssmokeybiker
 
mrssmokeybiker: Congratulations on your decision to get a CI! The hardest part is now behind you. :)

I can relate to your reaction after being told that you were a CI candidate. During my CI evaluation I became a little emotional after my testing was completed because it was then that I realized how poor my hearing really was. My audiologist was very understanding and told me not to worry because that's what she was trying to determine.

When I was told that I was a CI candidate, I had mixed feelings. One part of me was delighted because that's what I was hoping for. Another part of me felt saddened because I knew my hearing loss was now at the point where nothing further could be done to improve it.

Like you, I kept putting off the idea of getting a CI because I thought I managed "okay" with HA's. Although I haven't had any speech discrimination in my left ear for the past 10 years, I could understand speech to a limited degree with my right ear using an FM system. 2-3 years ago when I lost that ability, I started using other alternative communication methods like sign language and captioning.

After having my hearing tested last year and being told that my loss was now in the profound range, I knew it was time to look into a CI.

I had alot of questions, but met others on various CI forums who shared their experiences and encouraged me every step of the way. In fact, I spent 6 months on one forum before I was implanted, so by the time I met with my surgeon to ask any last minute questions, I didn't have alot to discuss with him. LOL!

If I had to do it all over again, I would in a heartbeat!

Here's wishing you all the best for your surgery and beyond! :)
 
since dec 20 is my first appt for surgery.. its been postponed to feb 28.. now again postponed damn it!

the reason its been postponed is because CI surgery itself with everything in 1 year cost 100,000 and my insurance only covers $60,000.. good greif

I called Mayo clinic and they say its range is $55,000 to $64,000.. however thats only for CI, surgery, post op exams..

but for the U of M its $100,000 to $110,000 includes audiotherpy, so forth :pissed:
 
deafscuba: Man, that sucks!! I'd be pi$$ed too!! :(

I know what it's like to play the waiting game. It took me 4-5 months to complete my CI evaluation because of various delays and cancellations. My CI evaluation started in May, but I didn't have surgery until December. Two weeks before my surgery date, my insurance carrier sent a letter stating that they would deny coverage during the month of December. Fortunately, that turned out to be a clerical error. (They confused my records with someone else's.) Once that was straightened out, I had no problems getting coverage for surgery, additional mappings or A/V therapy.

Where are you located? Is the U of M (assuming that you're referring to the University of Michigan) the only CI center near you? Have you thought about going to the University of Wisconsin-Madison, the Medical College of Wisconsin in Milwaukee or the University of Chicago where the total cost may be considerably lower? As long as you're a CI candidate, you should be able to transfer your test results and medical records from one center to another without having to go through the evaluation process again.
 
Hear Again said:
deafscuba: Man, that sucks!! I'd be pi$$ed too!! :(

I know what it's like to play the waiting game. It took me 4-5 months to complete my CI evaluation because of various delays and cancellations. My CI evaluation started in May, but I didn't have surgery until December. Two weeks before my surgery date, my insurance carrier sent a letter stating that they would deny coverage during the month of December. Fortunately, that turned out to be a clerical error. (They confused my records with someone else's.) Once that was straightened out, I had no problems getting coverage for surgery, additional mappings or A/V therapy.

Where are you located? Is the U of M (assuming that you're referring to the University of Michigan) the only CI center near you? Have you thought about going to the University of Wisconsin-Madison, the Medical College of Wisconsin in Milwaukee or the University of Chicago where the total cost may be considerably lower? As long as you're a CI candidate, you should be able to transfer your test results and medical records from one center to another without having to go through the evaluation process again.
sorry its university of minnesota


and the MAYO is one of the best hosiptals in USA located in rochester, MN
 
Has the U of M discussed other payment options with you (such as using a secondary insurance provider -- if you have one)?
 
Hear Again said:
Has the U of M discussed other payment options with you (such as using a secondary insurance provider -- if you have one)?
they keep putting me on hold.. while they're looking for financial help.. which i'm been waiting for a month.

I only have 1 insurance.. under my employer. and the limit is $60,000 lifetime....
 
You know what i think would be great? Being able to map your speech processor yourself at home .
 
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