Post-Activation

[lakelomax1]

Hello all,

My name is Lake and I am 17 years old. I just had surgery a week and half ago and was implanted with a med-el electrode in my right cochlea. I do have EVA (enlarged vestibular aqueducts) which has caused my hearing to dwindle over the years. I am completely deaf in left ear and I have 20% understanding of sentences in right ear without lip reading, but with my recent loss of hearing we decided it was time for a cochlear implant. I am someone who is concerned about their looks, so I was very hesitant about it but I think I will okay with the looks of the OPUS 2 and RONDO. I was activated two days. The first day of activation was a nightmare with only hearing ringing noises and high pitched noises, but after a second mapping sessions which occurred today, I can understand a few words and hear noises I have never heard before. Being that I am very active in sports and very social, I would love to be back to school soon. I was just wondering what the feedback from everyone was on how long you think it would be until I could go back to school? I know it's a rough estimate, but I will go back when I can understand people well enough to get by like I did with my one hearing aid for 14 years. Thanks so much all!

[Sandy]

Hi Lake and welcome to HearPeers. Congratulations on your implant. Everyone is different and I guess all I can say is when you fell comfortable, would be when you go back to school. We talk about the 3 Ps - practice, patience and perseverance. I've found this to be an ongoing journey with new experiences everyday. One of the things I've learned recently is that it's best to put yourself in different hearing situations. As I live alone, I don't have the daily interaction with people so I have to make sure I go places where I meet, talk and listen to conversations. I make sure the tv is on, listen to music everyday and listen and read along with audio books. There are also lessons online with Med-el. I notice that if I don't have any sound around me, voices become distorted. But everyone reacts different and each mapping you have will improve your hearing. Keep asking questions, we will answer.

[lakelomax1]

Thank you so much, I will definitely put all of that to use. I have lots of important stuff happening in early February, so I really hope I can go back to school in 3 weeks. Do you think that is reasonable or completely out of the question? Also, any tips on how to deal with my self consciousness of how I look with the bulge on my head with the Rondo? Or to simply make it less noticeable?

[Matt]

 

Welcome to the forum Lake. I think you will be fine going back to school - those of us who work don't have the luxury of lots of time off so it was straight back into normal life. The different hearing situations you will experience at school will be quite good to work out what you might want adjusted at your next mapping. The one thing you might find is that you get more tired as your brain will be working overtime.

Be patient and enjoy!

 

As for this comment:

 

I am someone who is concerned about their looks,

Our resident male models Adam and John will be along shortly.

 

[Leblisa]

I went back to work 2 weeks after activation and did fine, so 2 weeks is my best guess.

[Ivana Marinac]

 

Thank you so much, I will definitely put all of that to use. I have lots of important stuff happening in early February, so I really hope I can go back to school in 3 weeks. Do you think that is reasonable or completely out of the question? Also, any tips on how to deal with my self consciousness of how I look with the bulge on my head with the Rondo? Or to simply make it less noticeable?

 

Hi Lake,

 

welcome to the hearpeers, at first - I am not CI user than BB (have also outer unit).

Reagrding your question I can not say that I am in the same position as you because I am not CI user but I have some certain issues where I can give you advice: the more confident you feel, the more open will be people who will get in contact with you. Your attitude will determine how other people will treat you: if you will feel this is not a big issue nor they will.

[Sandy]

Lake, you will probably find that people will be curious and ask lots of questions. Just remember that this is making your life much better. I've found that it is a good conversation piece and a means to make people aware of the strides that are being made towards a happy, productive life for people with disabilities. Take a look at your Rondo, it looks like R2D2! Remember, now YOU CAN HEAR! your friends will be happy for you and the rest don't matter. Let us know how it goes!

[jpl2ci]

Matt, thanks for the sterling introduction!

 

Hi Lake,

 

Welcome to cyborg hearing. I wear bilateral RONDOs and when riding my bike, wear bilateral OPUS2s. Your hearing will start to improve with the 3Ps always in the forefront of your mind.  Don't be afraid of taking the processors off when you feel overwhelmed.  Your brain is learning how to process sounds from ground zero. Analog vs. digital is an apt description.  Start a journal so you and your audi can best map you implant. the more information you can present, the better the results can be.

 

Also, the WOW factor of the RONDO can be a wonderful educational moment for other people. You can tell them, "you hear by air pressure while I hear by direct electrical stimulation." If you get the "deer in the headlights" look just tell them you now have a bionic ear. If offered Auditory Verbal Therapy (AVT), run to the appointment and take notes. Start talking with people you have known forever and have planned conversations, not "I don't want to get up and make my bed....", but rather talk about dinner, planned activities, etc.

 

This journey is a marathon, not a sprint and you will have successes and failures but I would not be where I am today without my first implant 3.5 years ago and my second implant 3 years ago.  Also, if given the opportunity to go bilateral, the learning curve is nowhere as difficult.

 

Congratulations and look forward to your next posts.

[lakelomax1]

Wow. Thank y'all so much. I definitely did not expect this type of feedback. I have taken your advice and started a journal so My audiologists can best determine my next mapping process. And I really appreciate the confidence tips. I definitely understand how that could not only affect me but also how people react towards me, so I am definitely going to work on my confidence. I'm sorry, but I have two more questions. What was your personal experiences with when you had your AHA moment when you could understand most things in general post activation? I can understand a few words here and there and recognize some sounds but that is about it. ALSO, I am very involved in PE and tennis, dodgeball, etc.... Any tips on how to keep the RONDO from flying off a lot besides just the simple hair clip that is attached to it?

Once again, thanks to all so much, I am really soaking in everything y'all are saying and I really appreciate it!

[Matt]

I had more WTF moments when I was discovering "new" sounds. Things like the indicators in the car, birds chirping and the fizz of a freshly poured glass of soda.

The AHA moments came gradually and probably took at least 3-4 weeks personally. The first week or two I was wondering if I had done the right thing as it was nothing like I expected but now it's so good.

Unless you're like Adam and me I assume you have a fair amount of hair? Just grow it long and be a hippy like John probably was.

[jpl2ci]

Lake, I strongly recommend not wearing the RONDO during strenuous physical activity without using this: http://www.medel.com/int/sports-headband.  if you wear the OPUS2 use this, with their tether: http://www.gearforears.com/ good luck!

[Ivana Marinac]

 

Wow. Thank y'all so much. I definitely did not expect this type of feedback.

I'm sorry, but I have two more questions. What was your personal experiences with when you had your AHA moment when you could understand most things in general post activation? I can understand a few words here and there and recognize some sounds but that is about it.

1. you're welcome: that's why we are here.

 

2. as I already said, I zm not CI user than BB user - I had a hearing aid so I could hear a bunch of sound, voices etc. I was used at human voice, but still - the WOW effect was unavoidable if I can say so. Astonished with upgraded possibilities.

[lakelomax1]

Thanks Mr. John, I am definitely going to be getting that headband for the RONDO and I don't think I will be wearing the OPUS much at all.

Ah I bet

[Sinker]

Lake, I applaud you for being so involved at school pre-CI.  It must have been difficult but you are obviously a strong person.  With your new CI, Your brain is working over-time and the more input you give it, the more it will learn to process and crave more.  There is a line however, that all CI users will say where noise it too much.  Fully hearing people experience it too, but not as bad as we with electronic hearing.  You will need to cut yourself a break in these places.  Try with the CI,  but at first you may need to go back to lip-reading for help.  Once you have several programs, your audi can give you one that will help in noise (the gym will be hard).  I find that using the remote (sensitivity decreased, volume increased) helps tremendously, unlike similar adjustments I had available with hearing aid.  However, it will take time.  Consider the CI journey a 2 yr process.  You will be SO much better in time, but you have some work to do to get there.  THe first 3 months after getting a CI is a critical period.  Your brain is in a malleable state because of the absolute change it has been thrown.  It will take a few months before your audi has you programmed at the final volume level, let alone being able to fine tune other programs for you.  The audi doesn't want to overload your auditory nerve which hasn't had much stimulation for a long time.  The journal is a perfect place to make notes of what's working & what's not.  A list of adjectives such as boomy, tinny, slurred, ping-y, etc. whatever you can write to describe your experience.  I was told to start listening to music from the 70's as it was recorded in mono (The Beatles) and would be better understood at first.  Use the T-coil setting for music with a good headset (or cool only-for-T-Coil use earhooks (Techear.com $50 approx.)) so you are only getting the audio from what you are listening to & no background noise.  I can use mine with the Rondo, but at first you may wish to use with the Opus 2 BTE.  I secure mine between my hair & Rondo with a headband AND the Rondo retaining strap to a hoop earring I had put in expressly for it.  I will get the Sport Band when it becomes available next month.  These things cost money but they are worth it!  I proudly show off my Rondo to complete strangers.  You'd be surprised at the awesome conversations I have had just by being bold & confident.  If your peers treat you weird because of it, they are not worth a second thought.  They will mature in time & see how dumb they were.  Walk the proud walk!  You are 1 of only 200,000 or so in the world sporting the latest computer attire.  Take pride and own it.

[Camille]

Hi Lake!  Very cool name by the way ;-)

 

I've been in conversations with a 17 year old girl who needs a CI and is hesitant.  Like you, she is active in school, sports and concerned about her looks.  I'd introduce y'all, but she lives in CA and you in TN :-(

 

As John mentioned, use "bionic" when people ask... it seems the easiest thing for people to understand and they think it's cool!

 

I applaud your adventure into the CI world, and understand your fears of being viewed different.  When I was in my late 20s I had a couple of guys not want to date me b/c of my hearing loss.  I finally got confident enough to not hide my hearing aids, and say, "this is who I am am.  Your loss if you aren't interested in me..."  Then I learned it was my gain not to have them in my life!

 

As everyone has said, the journey of hearing with a CI is just that...a journey.  My left ear was implanted July 2010; my right ear Jan. 15, 2014.  A month after my first activation I was only hearing as well as with my hearing aid so I was frustrated and angry; thought I'd made a huge mistake, but by the end of month 3, my CI ear was absolutely my "best" ear.  In fact, it had been years since I'd heard that well with a hearing aid.  About that time I flew "home" to visit my mother in Sweet Home Alabama.  Mom had been implanted in 1993.  I figured I'd hear so much better than her because I had the latest, greatest technology.   Well, I was wrong!  You see, her brain had been hearing via a CI for 17 years longer than my brain so she was hearing better than me.  By the end of the first year, and definitely by the end of the second year, I hear better than she does.  I continue to be amazed that hearing gets better over time and with new maps.  My journey continues when my right side is activated Feb. 14th.  I'm wondering if my learning curve will be shorter because my brain has been using a CI for 3.5 years or will it be similar to the first one??  Only time will tell...but I know I'll need to keep those 3Ps.

 

[Sandy]

Hi Lake, both Camille and Laura are absolutely right so I won't go on. I've found both plugging into music on my iPhone or iPad has helped as well. Also, YouTube was very easy to understand. Just a.couple of ideas. I was getting frustrated with audio books so my audiologist suggested starting with children's books. I get the hard cover book and the audio and read along. It's been a great help. Just keep remembering the 3Ps - patience, practice and perseverance.

[Miriam H]

Hi Lake! I don't know how I missed this post from a TEEN AGER!? I'm a mom to a 13 year old with 2 CI's. CI hearing has been part of her life for as long as she can remember, so she is a pro of telling people "what's on her ear" and doesn't at all seem bothered by it. So far we have only heard positive responses to this super bionic hearing, it's really high tech and "cool" considered by most actually.

She has longer hair and can easily "hide" the CI under it if she wants. She is attached to and uses the Opus rather than the Rondo.

 

I wish there were more teens here at HearPeers, I will definitely have my daughter write to you also.

 

 

Anyway, I just wanted to say hi and welcome to this great forum. I can see that one of our "pros" on here (John) already has taken great care of you and answered a lot of your questions! Good luck, the 3 P's will help you succeed with your new hearing. Keep us posted!

Miriam

[Proudcimom]

Hi Lake! Welcome to Medel and welcome to HearPeers! My son is 11 and he has bilateral implants. He wears his Rondos during the day and his Opus 2 processors during sports. He uses the #3 magnet strength with both Rondos. When he wears his Opus 2 processors, he wears Ear Gear to protect the processors from moisture. He also wears clear plastic tubing to connect the battery pack to the ear hook. This combination helps to keep his processors on his ears during sports.

 

He uses a loop system as well to connect to his iphone, ipad, 3DS, etc. I love that he has the loop, especially in the car on long trips. He can hear the music, but I can't. He has a personal FM system that he can use in class. However, he is in a private school with small classes in small classrooms. He hasn't needed the FM system, but it's there if he needs it. He recently received the headband to wear with the Rondos. He hasn't had the chance to wear it much, so the jury is still out.

 

I wish you the best with your implants. Please feel free to share your successes or your concerns!

[weimar]

Hi Lake and welcome to the forum! I'm happy to see that you're finding a wealth of information here and hope that you'll share your own experiences with us as well.  I understand what you mean about looks - I wear an Opus II and keep an EarGear sweatsock on it all the time to protect it from moisture. It makes the processor slightly larger and therefore more noticable but in today's "day and time," most people know what they're looking at and if not, they're not too shy about asking.  The EarGear also keeps the moisture at bay so that my CI doesn't get affected by sweat - which is perfect if you like sports.  Just remember that confidence is the biggest improvement a person can have - if someone asks about your CI, don't be embarassed to educate them about what it is and how it works.