flipside Q about the CI!

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sirena rossa

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ok, so i have been doing research on the cochlear implant since I am considering getting one (it won't be for a while! haha, but I am beginning to research process now at least...) and I've been told about all the pros and the positive things, and good experiences. And call me a cynic, but i know there has to be negatives to it. But I am having a hard time finding those stats. So like i said, i know the good. so gimme the bad & the ugly, haha. And i don't mean "oh yeah there's a chance of the magnet falling out of ur skull and floating into ur foot". Or like the VERY slim chance that the side of my face could be paralyzed, or something.
Give me the realistic stories here, please. And if its ur own personal experience(s), even better.

What it comes down to is, i feel like i still need convincing to get a CI. And, I am wondering if there are people out there who got the CI and they're like "hmmm yeah, i could have done without the cochlear implant, and been perfectly fine sticking with my hearing aids".
 
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I figure you'll get some response on this thread but I'm not sure you'll get what you are looking for.

To qualify for a CI, a potential candidates hearing has to be pretty bad. I know the qualifications are getting a little more lax with the success of the CI's and how people are able to improve to the degree they do today.

I was probably on the bubble to qualify but due to my very fast hearing loss progression, I was able to become a candidate and get one. I used my hearing aid for about a week after activation but after that, the CI was so much more consistent and the clarity was better for me and I stopped using my aid.

I have been told that I am not the typical reciepent in that I was able to adapt to the CI very quickly but I also was hearing for almost 35 years before I had any significant hearing loss in my remaining good ear. My bad ear had a 100+ db loss overnight about 15 years earlier which is the ear I chose to have my first implant put in.

As far as difficulty, Noisy situations can still be difficult to understand what people are saying but a hearing aid is about the same. Replacement components are more expensive if something breaks, batteries are a little more difficult to obtain so a CI patient has to plan a little more so they don't run out of supplies. For CI users with at least Cochlear, microphone filters need to be changed since they absorb body moisture or rain and may affect how the Microphones hear sounds. I go through one every 2 months on average unless I get stuck in a storm without an umbrella.

For both hearing aid users and CI reciepients, they both have to have periodic programming visits if they feel they are having a difficult time hearing.

Filter through the different postings. This is where I did some of my reading when I was making my decision. I also read some postings on Menieres.org since that was where I was spending most of my time prior to my hearing getting as bad as it got.

Good luck in your search.
Steve
 
Cons? you are right, there aren't many of them though we all seem to have a love/hate relationship with our CI's from time to time. My cons? Since the processor is larger than a ha, it sometimes feels awkward and heavy. I had to learn to be careful where I leaned my head (leaned against a cupboard at work one day with a metal hinge, needless to say, the magnet left my head and went to the hinge). If you brush or comb your hair a lot, get used to not doing so, or you will often knock off the magnet. I am not normally a hat/scarf wearer in cold weather, but have had to start wearing one as the cold can drain the battery faster. Oh, and I bought a "rain bonnet" so if I forget an umbrella, I won't get the processor wet. You will always have a bump on your head and sometimes sleeping on it can cause a twinge, though that may be a short term thing.
Yes, you mentioned nerve damage, and it can happen. They cut a nerve on purpose with me so that I didn't end up with a metallic taste in my mouth but the surrounding nerves picked up the slack and after almost three months, the Novocaine feeling has gone away.
I think you will find, for the most part, the cons are all minor and the ability to hear outweighs them all. JMHO
 
I would say, the MRI thing is a problem. Also, there can be complications with the skin between the implant and the magnet.
 
faire_jour said:
I would say, the MRI thing is a problem. Also, there can be complications with the skin between the implant and the magnet.
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I know that with nucleus they can use a lower powered MRI, and I think some of the other brands have that option as well. Does that hold true for AB? As for the magnet/skin issue, isn't that if the magnet is too powerful? My audi told me that if the magnet was too strong there could be a loss of blood flow in the skin under it which could cause the skin cells to die.
 
etalton said:
I know that with nucleus they can use a lower powered MRI, and I think some of the other brands have that option as well. Does that hold true for AB? As for the magnet/skin issue, isn't that if the magnet is too powerful? My audi told me that if the magnet was too strong there could be a loss of blood flow in the skin under it which could cause the skin cells to die.
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You can have an MRI, but you have to have the magnet removed.

And yes, the skin thing is because of a too strong magnet. I was just attempting to explain some possible problems.
 
im scheduled to have the surgery in less than 3 weeks so ill be watching this thread too..

as far as the magnet my audiologist told me if i did ever need to have an mri the magnet could be removed by making a very small incision to take it out then after the mri a new, sterile magnet would just be put back in its place and closed up.
 
faire_jour said:
You can have an MRI, but you have to have the magnet removed.
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I just read that in my instruction manual. All my surgeon said was a low powered MRI was okay.

faire_jour said:
And yes, the skin thing is because of a too strong magnet. I was just attempting to explain some possible problems.
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Didn't mean to sound like I was attacking or arguing, still new to this and was just making sure it was the same problem my audi had told me about or something new.
 
For Cochlear and i think AB's Users, ET's right, it's up to 1.5 telstra Mri where we can use MRI without the need of removing magnet. But would need a pressure bandage round the head. Any telstra above 1.5 the magnet would need to be removed.

I have 2 different magnet as i use stronger ones when i am riding horses wearing hard hat or skiing wearing helmet as the weaker (normal for me) one can easily slip off. I have not experinced any problems with magents falling off or sticking to other metal objects. But do have to take my processor off when i brush my hair then wiggle the magnet back up under my hair if i have it in pony tail.
I don't mind, because hearing beautiful things outweighs the cons!
 
i also have 2 magnets. after losing 30 pounds last year due to illness, my audi switched me from a #2 magnet to a #1.

however, i still keep the #2 magnet for use when i go downhill skiing.
 
Well I will add my 2 cents..

I had an very early activation ( see signature ) and that had complications right from start..scar irritated , etc...The proccessor of Cochlear at least , is very heavy , and seeing that I can't find a wig tape shop anywhere , I just bought a babyworn cord and feel better..also I always was fixing my hair..but then I cut them really short..LOL!

As for the magnet strength..wow didn't knew that ( my magnet strength is a 4 , 2 falls too often , audie didn't have a 3 ) so most of the time is just screwed out a bit till I need a haircut so I tighten it!

my surgery had quite a few complications , but that was due to my LPB ( hereditary ) and some of my medicines affected also my general health..my stomach hurt from a medicine that was supposed to protect the stomach from the antibiotics..LOL! as soon as I stopped that med , I was perfectly fine , just tired.

Also the first 4 months , every time I wore my proccessor..I felt SOOOO tired...it drained my energy quick..it is like my body saying..woah! what's happening and scrambles around...after a while your body gets used to it , depending to your limits.I only recently became used to wearing it without affecting me so much!

Also my doctor forgot some stitches that were to be removed , but as I had a really thick mop of hair , couldn't find them exactly , and I started feeling them after 3 months when feeling started to return...they fell out on their own this past Saturday..LOL!

and I have to agree with above posters , costs are really bigger , and that one never expected it as I thought my insurance would cover it , but it wont, so I've brought down economically..

sometimes I feel like what's the deal...but then I have a hearing moment and take strength and go on....
 
Not sure if I can think of a lot of cons.
1. I don't get to spend my money on hearing aid batteries, since AB has recharagable batteries. I haven't bought a battery in 1 1/2 years. Also insurance pays 90% of the cost of replacement batteries.
2. Since my hair is longer, I don't get stared at and asked about my hearing aids. I sure do miss those comments.
3. Those MRI's I really miss them. If it gets to the point that I HAVE to have an MRI then I'll just get the magnets removed and go on. I have had X-rays, CT scans and other test with my CIs.
4. I miss those ear molds. Those itchy, sticky, wonderful molds. So after 27 years, my ears don't know how to adjust.
5. I miss asking more often "what did you say," "please repeat what you said." I have a hard time breaking that habit.
6. I miss not being able to listen to music, those songs are just easier to understand now. I finally hear the high frequency and complete sound.
7. Stress. I miss the stress involve in trying to hear when I couldn't hear. I miss faking hearing. The smiles and nodding when I didn't have a clue.

As you can tell my list was created in a silly way. I can't find a real con. I'm sure I can really come up with a few, but really it has given so much more than a hearing aid ever did. My only con is I would have done this 5 -10 years ago.
 
vallee said:
Not sure if I can think of a lot of cons.
1. I don't get to spend my money on hearing aid batteries, since AB has recharagable batteries. I haven't bought a battery in 1 1/2 years. Also insurance pays 90% of the cost of replacement batteries.
2. Since my hair is longer, I don't get stared at and asked about my hearing aids. I sure do miss those comments.
3. Those MRI's I really miss them. If it gets to the point that I HAVE to have an MRI then I'll just get the magnets removed and go on. I have had X-rays, CT scans and other test with my CIs.
4. I miss those ear molds. Those itchy, sticky, wonderful molds. So after 27 years, my ears don't know how to adjust.
5. I miss asking more often "what did you say," "please repeat what you said." I have a hard time breaking that habit.
6. I miss not being able to listen to music, those songs are just easier to understand now. I finally hear the high frequency and complete sound.
7. Stress. I miss the stress involve in trying to hear when I couldn't hear. I miss faking hearing. The smiles and nodding when I didn't have a clue.

As you can tell my list was created in a silly way. I can't find a real con. I'm sure I can really come up with a few, but really it has given so much more than a hearing aid ever did. My only con is I would have done this 5 -10 years ago.
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good post.
 
Here are some of my experiences:

1. Get a CI, you will definitely not regret it. Yes, there are some people in this world who cant benefit much from CI, but most do & just trust your medical team.
2. You will probably lose your residual hearing in your implanted ear. CI surgeries are improving rapidly and doctors all over the world are working on a technique to preserve residual hearing. In my case, I think it was preserved to some extent since I could even wear my hearing aid on my implanted ear. But obviously the results were not as good as the CI!! Just be aware, all residual hearing is lost 99% of the time.
3. You need to have "zero expectations" because CI does not work like magic overnight. It will reboot your hearing capabilities and take time for your brain to adjust to new frequencies. I can say that is beautiful since you get to hear new sounds again, but you need to be patient. The Con here is - it can be very hard to adjust especially if you have high expectations. The hardest part of CI is not the surgery, but the adjustment process post surgery.
4. You need to be extra careful about the way you walk, run, get involved in sports, etc. If you fall or you hit your head somewhere, it could possibly cause head trauma and possibly damage the implant. So just be careful.
5. Nerve damage is a possibility, and I think every CI recipient has to take the risk of surgery. Just make sure you approach a good CI surgeon who has done many surgeries and has had more experience. This should rid off your surgery fears!

6. Lastly, you need the courage. I am not kidding on this one, but there are many people I know who told me they didnt want to go through all this. You just need to be brave and courageous & you should be fine.

Good luck!!
 
hugoboss,

could you clarify what you mean about nerve damage being caused by ci surgery?
 
Well thats what they say, that the surgery does have some risks. And there is an extreme rare possibility of facial nerve damage. But those are all medical related risks that we cannot do anything about. I am sure every CI medical team knows about it, and they are extremely careful how they operate. I am sorry, I dont know of anyone who has experienced this, but I was, like any other CI recipient, made aware of the risks before surgery.
 
hugoboss84 said:
Well thats what they say, that the surgery does have some risks. And there is an extreme rare possibility of facial nerve damage. But those are all medical related risks that we cannot do anything about. I am sure every CI medical team knows about it, and they are extremely careful how they operate. I am sorry, I dont know of anyone who has experienced this, but I was, like any other CI recipient, made aware of the risks before surgery.
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oic. you're referring to facial nerve damage. i didn't know that. thanks for clarifying. :)
 
hugoboss84 said:
Well thats what they say, that the surgery does have some risks. And there is an extreme rare possibility of facial nerve damage. But those are all medical related risks that we cannot do anything about. I am sure every CI medical team knows about it, and they are extremely careful how they operate. I am sorry, I dont know of anyone who has experienced this, but I was, like any other CI recipient, made aware of the risks before surgery.
Click to expand...

Very true. And nine times out of ten, the risk is worth it. I still have a touch of that Novocaine feeling on my tongue and a bit of numbness on my scalp but I wouldn't trade that for my new ability to hear...not for anything. Besides, in my case, those feelings are going away over time..
 
speaking of numbness, i don't have any feeling on a small part of the right side of my head just above where the magnet sits even after 2 years post implantation. i also experience moderate to severe dizziness whenever i turn my head to the side. i don't mind though. the benefits of ci far outweigh the disadvantages.
 
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