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[Armybrat05]

Hi,

My name is Shelby, I'm a college student, well I've got one more year left till my Bachelors. My mom discovered my hearing loss at the age of 4, as it was pogreesive instead of sudden it didn't cause alot of panic. I got hearing aids and have worn them for 19 years and at first I did great with them because I could hear just enough with them, plus I became skilled at lip reading, but as the years passed my hearing gets worse, and sometimes I think my lip reading skill does too but not sure. 2 summers ago I finally found out my reason for being deaf- Ushers. And that started me on my CI journey, I have been resistant to them for many many years for different reasons, but finally talked myself into getting one and I was implanted last Thurs- July 28th. My recovery seems to be going up and down, its a little confusing to me so I may have a few questions if there is someone I can talk t about the recovery and activation process? I'm glad this website is here, its good to have a community to talk to.

 

Shelby

 

[Mary Beth]

Welcome Shelby!

You can ask any questions you have about recovery or activation or anything else you want right here and people will do their best to answer.

[Armybrat05]

Hi,

Ok, Thank you! I am a little concerned about my recovery process. When I first woke up everything was awful, I even fell back to sleep, got sick and all that but after leaving the hospital things seemed to get better, no getting sick, but ofc still on the pain meds. I still haven't gotten sick since but I have had nausea off and on even if I've taken a nausea pill, didn't know if you all had any input as to what could be causing this? I also have gotten pains from inside my ear like sharp pains and not sure if that is normal or not. Its been four days and usually swelling is down by then, I don't really feel any swelling around the incision area but I do in my neck on the right side (implanted side) closer to my jaw, and the area right below my ear (kinda at the base of the incision/where the jaw meets near the ear) normal? I seemed to have one or two good days after my surgery day then things kinda went downhill, I keep waking up either dizzy/lightheaded/disoriented, or with a headache and sometimes with nausea, I'm just kinda shocked by the change from doing good cconsidering to not doing so good, it seems to improve at times or later in the day which is weird. I am of course still on pain meds but trying to take them only as needed. I also have this kind of tightness feeling on my right side and not sure if that is normal as well, it almost feels as if everything is being 'lifted up' and tight on my head? Last but not least- the implant itself can't move inside the head, like move locations, correct?

Sorry my ?s and sentences are all over the place, I'm normally better at writing than this but for now just kinda typing as things come to mind. I have had surgery where I've been implanted with something before (not a CI and not on the head) and I did fine with those wasn't very concerned with those but with this CI implant surgery, I almost feel like I'm tooo concerned, guess it must be the fact that its on my head so its competly different.

Thanks for any help

Shelby

[Kara of Canada]

Hi I responded to an earlier post. Sorry! Welcome!! I'm not a doctor so I can't say why these things are happening to you. But from what I have heard from others that some people have a hard time for a while after activation. I had some serious complications in my surgery so I had pain on the side of my face as well down to my jaw. For about 21 days after surgery then I was able to stop the pain meds. Swelling can take up to six months to go down so don't stress about it too much. If you are rally concerned contact your surgeon they will be able to answer those questions. Some people experience vertigo unsteady balance and nausea so that's all I can add!! Keep us posted!!

[Armybrat05]

Hi,

Thanks Kara, I haven't had activation yet, but I did finally get ahold of my team and asked some questions and they said unforunately it was all normal part of healing process from surgery. So Guess I just need to tough it out a little longer. :/

[Mary Beth]

It's great that you contacted your CI team. I sure hope you feel better soon!

[mcnarym1]

Hi,

My name is Shelby, I'm a college student, well I've got one more year left till my Bachelors. My mom discovered my hearing loss at the age of 4, as it was pogreesive instead of sudden it didn't cause alot of panic. I got hearing aids and have worn them for 19 years and at first I did great with them because I could hear just enough with them, plus I became skilled at lip reading, but as the years passed my hearing gets worse, and sometimes I think my lip reading skill does too but not sure. 2 summers ago I finally found out my reason for being deaf- Ushers. And that started me on my CI journey, I have been resistant to them for many many years for different reasons, but finally talked myself into getting one and I was implanted last Thurs- July 28th. My recovery seems to be going up and down, its a little confusing to me so I may have a few questions if there is someone I can talk t about the recovery and activation process? I'm glad this website is here, its good to have a community to talk to.

 

Shelby

So I tried replying to this post earlier I guess something was wrong but anyway hi! I've grown up with a hearing aid in my right ear due to hearing loss as a child from radiation due to cancer. Recently, just this past February, I woke up and thought I was completely deaf, I got an auto immune inner ear disease that progressed so rapidly that I had no other choice but to get a CI in my left ear. I was JUST activated about a month ago and I can totally relate to some of your concerns. I was able to connect with someone from MedEL and she answered literally every question I threw at her and it helped me out a bunch. She made me less worried after the surgery and before the activation. As far as getting sick after the surgery that's actually a fairly common thing because the surgery can at first, affect your balance and everything. I was in pain after surgery only for a few days but Johns Hopkins told me even if you feel a little sharp pain around the incision area, take meds to stop it before it gets worse. That'll get better over time, I have had my CI activated for a month and I still get pains near the incision site. It's all due to swelling which can take around 6 months to fully decrease. I've had the same thought as to whether or not the implant inside can move, no it can't lol. It is a little weird though when you go to put your outer processor on, I can hear/feel the magnet attach to the internal processor in my head. The recovery period can be a little tough but believe me it is all worth it once you get activated! I am hearing 90% normal and only like 10% robotic/electronic and that's about a month out. I hear things I've never even heard before too. I still lip read out of habit but at first after the activation you will too cuz everything sounds robotic. Hope this helps you! 

[Ivana Marinac]

Yeap - that sharp pain is because of surgery: you have to have in your mind fact that you were at surgery and that recovery period is something what you should properly go through.

Regarding hte dizziness, there could be several reasons, as an effect of the operation as well as the consequences of the implantation of the electrode which is trauma for your ear. But - do not make final decisions so early in the race. It will be better - you just need longer recovery period.

[Armybrat05]

Ivana- I am aware that I went through surgery, and I am aware that your incision/excision can hurt and that your head can be tender, tinnitus, and balance problems, but I did not realize that your ear canal could hurt too, but yes I was told it is normal.

I have not made any final decisions, I am still motivated to get activated I was just concern that some things are normal and that I don't need to go to hospital because, I am different, I have health issues (nothing that prevented me getting a CI luckily) and I tend to react different from most people when it comes to medical stuff, so I just wanted to make sure

[Armybrat05]

So I tried replying to this post earlier I guess something was wrong but anyway hi! I've grown up with a hearing aid in my right ear due to hearing loss as a child from radiation due to cancer. Recently, just this past February, I woke up and thought I was completely deaf, I got an auto immune inner ear disease that progressed so rapidly that I had no other choice but to get a CI in my left ear. I was JUST activated about a month ago and I can totally relate to some of your concerns. I was able to connect with someone from MedEL and she answered literally every question I threw at her and it helped me out a bunch. She made me less worried after the surgery and before the activation. As far as getting sick after the surgery that's actually a fairly common thing because the surgery can at first, affect your balance and everything. I was in pain after surgery only for a few days but Johns Hopkins told me even if you feel a little sharp pain around the incision area, take meds to stop it before it gets worse. That'll get better over time, I have had my CI activated for a month and I still get pains near the incision site. It's all due to swelling which can take around 6 months to fully decrease. I've had the same thought as to whether or not the implant inside can move, no it can't lol. It is a little weird though when you go to put your outer processor on, I can hear/feel the magnet attach to the internal processor in my head. The recovery period can be a little tough but believe me it is all worth it once you get activated! I am hearing 90% normal and only like 10% robotic/electronic and that's about a month out. I hear things I've never even heard before too. I still lip read out of habit but at first after the activation you will too cuz everything sounds robotic. Hope this helps you! 

 

Hi!

It is nice to meet you, thanks for being there to answer questions and explaining things and your story, I have so far gotten all my questions answer but the journey isn't done yet so maybe more will pop up later. Sounds like your CI journey is going well! Thank you for your story it does help some. I also had cancer, mind if I ask what kind of cancer you had?

[mcnarym1]

Hi!

It is nice to meet you, thanks for being there to answer questions and explaining things and your story, I have so far gotten all my questions answer but the journey isn't done yet so maybe more will pop up later. Sounds like your CI journey is going well! Thank you for your story it does help some. I also had cancer, mind if I ask what kind of cancer you had?

No problem! Since I'm newer with the CI implant I figured I can help you through it. I had all those nervous feelings and so many wuestions before I got the implant. When I was 5 I had a brain tumor wrapped around my cranial nerve. So that's where the hearing loss in my right ear came from, due to having to get so much radiation, it affected my right side the most. 

[Ivana Marinac]

Ivana- I am aware that I went through surgery, and I am aware that your incision/excision can hurt and that your head can be tender, tinnitus, and balance problems, but I did not realize that your ear canal could hurt too, but yes I was told it is normal.

I have not made any final decisions, I am still motivated to get activated I was just concern that some things are normal and that I don't need to go to hospital because, I am different, I have health issues (nothing that prevented me getting a CI luckily) and I tend to react different from most people when it comes to medical stuff, so I just wanted to make sure

 

I am an otorhinolaryngologist so I tried to answer you from the perspective of person who has seen a lot of implanted people before, during and after surgery.

 

Of course that your ear canal pain when drilling is done so close to it. 

Just trying to motivate you because it seems to me that you started to question the worth of implantation pretty early in your rehabilitation process...

[Armybrat05]

No problem! Since I'm newer with the CI implant I figured I can help you through it. I had all those nervous feelings and so many wuestions before I got the implant. When I was 5 I had a brain tumor wrapped around my cranial nerve. So that's where the hearing loss in my right ear came from, due to having to get so much radiation, it affected my right side the most. 

 

Yes . I also asked a lot of questions before the implant, but was only told some of the side effects as everyone reacts different its hard to point out all. But guidance from other people is good. I am glad that you survived your cancer! I had Leukemia it didn't affect my hearing because my hearing happed at four and cancer was after that but it also caused other problems for me or the chemo did anyway, my deafness is actually genetics- Ushers. I can't wait to be done with the recovery and  be activated! I'm excited to see how the CI does for me.

[Armybrat05]

I am an otorhinolaryngologist so I tried to answer you from the perspective of person who has seen a lot of implanted people before, during and after surgery.

 

Of course that your ear canal pain when drilling is done so close to it. 

Just trying to motivate you because it seems to me that you started to question the worth of implantation pretty early in your rehabilitation process...

 

Ok, Thank you for your otorhinolarygngologist point of view . I was not told that my ear canal was drilled to close it, I was only told about the incision behind the ear to place the arrays then another to place the implant, but thanks. it makes sense now why it hurts.

I am actually excited about my activation and rehab journey, and hoping that it does well for me. I just was focusing on questions about my recovery for now and the one question about my activation being painful (because I read something somewhere about it being painful to some but I didn't know whether to believe that or not, so that is why I asked here), I am not motivated about my recovery it is a pain but I know I will get through it, I will tough it out and I will be fine, but I am motivated about my activation and rehab. Sorry to make you think otherwise.

[Ivana Marinac]

Ok, Thank you for your otorhinolarygngologist point of view . I was not told that my ear canal was drilled to close it, I was only told about the incision behind the ear to place the arrays then another to place the implant, but thanks. it makes sense now why it hurts.

I am actually excited about my activation and rehab journey, and hoping that it does well for me. I just was focusing on questions about my recovery for now and the one question about my activation being painful (because I read something somewhere about it being painful to some but I didn't know whether to believe that or not, so that is why I asked here), I am not motivated about my recovery it is a pain but I know I will get through it, I will tough it out and I will be fine, but I am motivated about my activation and rehab. Sorry to make you think otherwise.

 

I just wanted to make a point that we are trying to write to all people here from the perspective which is familiar to us. Not from the perspective which we believe to know. That difference is an essence of sharing the experience between the implantees.

An ear surgery is one of the most complex at all although movie directors liked to put on that spot trauma or neurosurgeons mostly. The cochlear implantation is even more complex because not just that you really have to drill carefully and be absolutely certain where you are than you have to implant an electrode which is so sensitive - an extremely sensitive co-life has to be established between a living tissue and electronic equipment.

 

There are lots of information on the internet - I would not say that some of them are wrong than just some of them should be put in a perspective of various human characters. Some are more and some are less sensitive but hey - it's ok... Just a little bit reassurance and that's it.

 

I have read so many posts today so I might confused you with someone else who wrote that she is not convinced whether this pain and dizziness was right for her... So I referred to that sentence and tried to relieve you. Just that

[Armybrat05]

Ivana: Got it!

I just thought that the orginal post from the person who started it wanted the parent/kid non-medical understanding, doesn't mean that medical perspectives can't be posted or that people can't post their own perspective, experience, opinion, or whatever, that was just my understanding, but understand what you're saying.

I agree with you that the complexity of a CI is downplayed, I have known this forever just by talking to clueless hearing people who think CI's are 'cool' as in a toy kind of way and not a useful but complex tool kind of way.

Ok about the internet

I understand about reading so many posts and getting confused I am trying to keep straight everything everyone says and who says it and it is not easy haha. I am trying to read up as much as I can about tips and rehab that people put on here to help me when I finally get my CI activated and its not easy to keep everything in mind.

[Armybrat05]

Got my schedule in the mail: and it says post op with my dr on the 19th which is 3 weeks from my surgery and not 1, also it doesn't give an end time, but then I go on the 30th and it doesn't say what for but it is 2 hours long. So from this information and what I have read on this website I am assuming that the 19th is just post op with dr and that the 30th is my activation day? I don't know if anyone else's schedule was similar to this or not.

Also I was wondering: I have read that you get a kit when you first get your CI and get it activated. I was wondering what all comes witht the kit? I have gotten both the rondo and the sonnet.

Thanks

Shelby

[mcnarym1]

Got my schedule in the mail: and it says post op with my dr on the 19th which is 3 weeks from my surgery and not 1, also it doesn't give an end time, but then I go on the 30th and it doesn't say what for but it is 2 hours long. So from this information and what I have read on this website I am assuming that the 19th is just post op with dr and that the 30th is my activation day? I don't know if anyone else's schedule was similar to this or not.

Also I was wondering: I have read that you get a kit when you first get your CI and get it activated. I was wondering what all comes witht the kit? I have gotten both the rondo and the sonnet.

Thanks

Shelby

Your appointment on the 30th is most likely another mapping appointment for your CI. When I got my surgery I waited 3 weeks and then got activated and that day they did some mapping obviously. You'll have two more mapping appointments shortly after that, each one being about 1.5-2 hours long. These are just adjustments to your CI like volume and stuff. Yes you get a kit when you get activated, it's literally like Christmas. I got both a sonnet and a Rondo as well and in my kit there's soooo much stuff, there's batteries beyond batteries, a dome for cleaning your ear piece at night, replacement parts like clips for your rondo or battery covers for your sonnet. You also get your clicker to control the noise volume and programs on your CI. It also has stuff to help you find auditory rehab lessons either online or somewhere. I can't remember off the top of my head what else is in the box, oh you get a kit that can hold both your rondo and sonnet at night when you take it off to go to bed or shower/etc. Hope this helps!

[Armybrat05]

This helps alot Thank you!

[Ms_D]

Hi! I was implanted with my second implant this past June.  I can tell you that I had to stay on the pain killers longer this time than last year when I had my right ear implanted.  For some reason, it was a bit more rough for me this time than last time.  After my first implant surgery, I only took 3 (maybe 4) pain killers.  This time, I had to take probably at least 8 to 10.  Everyone's healing process varies.  I was constantly having pain this time, and one night, it got so bad that I could not stay asleep because of the pain.  that was the "breaking point" for me - as in the next day, I was just about completely pain-free and was even able to do light housework.  I still have some pain every now and then (kind of like a sting or pinch), but it's decreasing as time goes by.  Make sure you discuss your pain with your doctors.  It might be that it's taking awhile for you to adjust.  Hang in there, and I hope it gets better for you!

[Armybrat05]

Update: had my post op Friday, sadly no activation- but that comes next week yay!

I have been pain free since Sunday august 7th when I stopped taking pain pills as well  (except sore to touch and pressure still,  know this will go away too).

Doctor said everything looked great and was healing nicely, that I was on track.

I am back to normal activities which is great.

Still no taste on half of my tongue, I know that some people describe that they get a weird taste but I'm not even tasting anything at all, just feeling/texture and heat/cold no taste period not even a weird one. Doctor explained about the nerve and said everyone was different on when the taste buds come back, so here's to hoping mine comes back soon.

[Ivana Marinac]

On 20/08/2016 at 6:27 AM, Ms_D said:

Hi! I was implanted with my second implant this past June.  I can tell you that I had to stay on the pain killers longer this time than last year when I had my right ear implanted.  For some reason, it was a bit more rough for me this time than last time.  After my first implant surgery, I only took 3 (maybe 4) pain killers.  This time, I had to take probably at least 8 to 10.  Everyone's healing process varies.  I was constantly having pain this time, and one night, it got so bad that I could not stay asleep because of the pain.  that was the "breaking point" for me - as in the next day, I was just about completely pain-free and was even able to do light housework.  I still have some pain every now and then (kind of like a sting or pinch), but it's decreasing as time goes by.  Make sure you discuss your pain with your doctors.  It might be that it's taking awhile for you to adjust.  Hang in there, and I hope it gets better for you!

Good idea! - There is always good to discuss any possible detail you can think of - when the pain starts to decrease, it's definitely a good sign...

Sides can vary - and you can not be prepared for every situation. 

[Ivana Marinac]

23 hours ago, Armybrat05 said:

Update: had my post op Friday, sadly no activation- but that comes next week yay!

I have been pain free since Sunday august 7th when I stopped taking pain pills as well  (except sore to touch and pressure still,  know this will go away too).

Doctor said everything looked great and was healing nicely, that I was on track.

I am back to normal activities which is great.

Still no taste on half of my tongue, I know that some people describe that they get a weird taste but I'm not even tasting anything at all, just feeling/texture and heat/cold no taste period not even a weird one. Doctor explained about the nerve and said everyone was different on when the taste buds come back, so here's to hoping mine comes back soon.

Excellent update

Yes, returning of taste takes some time - mostly depends on the time needed for the resolution of the operated ear which can take month or two...

[Armybrat05]

Finally got activated 2 days ago, with another mapping yesterday! (back to back appointments). My brain accepted it and the implant worked! I am now able to 'hear' with it. Right now my audiologist says she's focused on volume and not clarity and understanding. Volume so far has not been any issues, it may take about an hour or so when I change programs to louder volumes but my brain eventually accepts it and settles down and it starts to sound 'normal' instead of 'loud'. Just so everyone knows I hear electrical sounds, not mechanical or anything like that but electrical is the best way I can describe it, with some deep 'bass' sounding type sounds for some of the lower pitch sounds like voices. I did a booth test on the 2nd day and with the implant (and sounds not words) I am hearing at a mild-moderate level of hearing which I have not heard at since elementary school. which is wonderful, we also discovered the 2nd day that I was hearing more middle to high pitches with not all of the lower pitches so this was adjusted. Maybe my next test when I go in will be better.

My audiologist is encouraging me with adjusting to volume, and encouraging me to ask what specific sounds are if I don't know so that my brain can learn to associate sounds with things. But she has not said anything about trying to do any training? especially training to help my brain understand words that it is picking up. So I guess my question here is do I wait till my next appt. (in about a week) to see if she gives the go ahead to do training then and just focus on volume and associating sounds for now, or should I go ahead and start training?

Also I have had a bit of a problem with getting my magnet to stay on- my audiologist seems to think it is magnet strength and will get me a more powerful magnet to try (but I have to monitor my skin). I was wondering however if it could be just because I just got it or because of my hair? (my audiologist seems to think its not my hair is not the problem) But I seem to find that it falls off because it either not connecting well because of the hair on the site or because of the hair surrounding it- pushing it off. So I just wanted to hear from some opinions on here.  Also have any of you experienced your CI turning itself off? (I have checked the battery and the batteries are fine and battery is on, but my CI was not picking up any sounds, so I turned the battery part off then back on and it was fine.) Thanks for any and all help!  

[Ivana Marinac]

Great update.

As people usually describe, everyone has some specificity how they felt for the first time and what they have heard.

Regarding your questions, you can start whenever you can. Although you won't understand words, it is good just to read and listen. Once, the brain will "click" and start understanding. Start with children books, something simple...