Activated today!! So many questions..

[lizjlong]

Hello!

Not sure if anybody can be of assistance but I have bilateral sensioneural hearing loss. I had my surgery (right ear, worse ear) on April 12. Today my implant was activated. I was told by my audiologist to NOT wear my left hearing aid for as much as possible so that my brain get start getting "used" to hearing with the implant. That being said, i'm hearing very little. The implanted ear (i'm wearing the Rondo 2) has been programmed with 4 maps. I was told to "change" the maps every 48 hrs and see which is most comfortable. Right now, I'm underwhelmed but I kind of expected that. I  desperately want to hear everything "in stereo" again. Right now it is very low volume, tinny, and dull. I am "anxious" to start any rehab activities that will help me. Also, has anybody felt that the Rondo 2 will fly off very easily? I know that there is a clip and my magnet is a 3 right now because my incision scar is relatively new.  I tried to sit on the couch and put my head back to rest and I feel like it's going to fall off   Also, when pressed against a pillow , it squeals a bit... Back to work tomorrow, and I will be trying not to put the left hearing aid in, which is going to be a challenge. But i'm determined to make this work!! 

If anybody (new or old activations) has any pointers/advice for rehab, getting comfortable with wearing the processor and the challenge of having one hearing aid and one implant. I would be very grateful.

Thank you!

Liz Long

[Mary Beth]

Yay!  Congratulations @lizjlong!

Which CI center do you use?  I go to NYEE in NYC.

Rondo 2 may stay in place better after your internal swelling subsides a bit.  In the meantime, you can use Med-El GripWear to help it stay in place better.

As far as knocking it off against pillows or headrests.....you will get better about positioning your head in time.  Is your Rondo 2 located near your ear or closer to the back of your head?

Each CI audiologist has different rules we must follow after activation.  My CI audiologist said the CI had to be on all waking hours and I could use my other HA as needed as long as I spent several hours every day with the CI alone.  So I wore my CI and HA at work and spent the remaining time CI only in the early days.  I increased my CI only time each week.

I will tag you in some threads about aural rehab.  I worked on aural rehab a lot every day and it helped me tremendously.

Wishing you the best!

[Mary Beth]

@lizjlong

follow this link and then scroll down to see Rondo 2 fixation options, including GripWear 

https://www.medel.com/hearing-solutions/accessories/fixations

[Mary Featherston]

@lizjlong I did the same - implanted right ear first and continued to wear my hearing aid in the left.  My audiologist wanted me to leave it out as much as possible but understood that I had to be able to hear at work.

However - you may be amazed at how fast you stop caring whether you wear the hearing aid or not.  My CI ear surpassed the hearing aid ear quite quickly!  Good luck!

[lizjlong]

Thank you Mary Beth and Mary!

I go to an audiologist here in Orlando. Not a CI center. I know that everyone's initial activation is different. Mine was underwhelming to be honest. But I knew i wasn't going to walk out of there on the first day and be able to hear clearly out of my implanted ear. And having the left hearing aid out made it that much more underwhelming.. My brain needs time to "re-learn" how to hear again with just the implant.

But I'm very hopeful!!

[Mary Beth]

@lizjlong

Hopeful is terrific!  Keep us posted!

[Watersail]

@lizjlong

This is exciting to read. I get activated end of next week, so reading about your activation experience definitely helps me understand what to expect and how to go about improving my hearing. I look forward to reading more about your post-activation experiences and all the hints/tips that you have.

[lizjlong]

Hi Watersail,

You're welcome. I will do my best to keep up to date on here. It's a whirlwind for sure. 

Thank you for reaching out and let us know about YOUR activation as well!!

[Jewel]

Hi @lizjlong

Congrats on your activation. 

Don't worry most of us have underwhelming activations.

I too have sensorineural hearing loss in both ears and qualify for CIs in both ears. I only did one ear though. So since activation all I have used is my CI. I have Sonnet and Rondo2. 

I started out with the Sonnet. I believe I started to make out a bit of what others were saying on the second day. The key is to immerse yourself in sound. Try some rehab apps on your tablet. Read aloud to yourself even if you can't make out what is being said. Turn on the TV with captions. Listen to some music while driving in the car. It may all sound like gibberish for days or weeks but eventually your brain will sort things out. 

To give you an idea, on activation day my audi had to use an app to communicate with me cos I couldn't make out anything she was saying. Fast forward to my next appointment the week after.... I didn't need her to use the app. I could make out what she was saying. Of course all of us progress at different paces, but the point is follow your audi's instructions and try some of the HP suggestions and you may be amazed at how things improve. 

Please keep us posted. 

[lizjlong]

Thank you Jewel. I have done most of what you advised above. And yes, it's day 3 and i'm doing a little better. I am following my audiologist's instructions. She has given me 4 maps on both processors (Sonnet and Rondo 2). I am to change the map every 48 hours. i'm on map 2 right now. The purpose is to see where i'm most comfortable at in regards to volume. Clarity is still elusive but again it's day 3!! I do have a question for you, since you  have bilateral loss as well. I did have the "worse" ear (right) done first, so as you can imagine i'm missing that left hearing aid to hear clearer.  Is it your intention to eventually have your other ear implanted? It was (maybe still is) mine. But as far as a timetable, I don't know. My concern is  that i'm not stimulating my left "better" ear right now. I assume my audiologist will eventually tell me i can wear the processor and the hearing aid. She must have a reason for now not to wear the hearing aid, like you said, the brain needs to figure out how to "hear" with just the processor. 

So very nice to talk with other CI recipients that "get" it!!

[Mary Beth]

@lizjlong

I had my worse ear implanted first (it was a long standing completely deaf ear that had not processed any sound for 24 years, but had heard prior to that).

My bimodal (1 CI and 1 HA) journey went like dancing partners....

early weeks my HA side led and my CI side was happy to follow

before long there was a tug of war in my brain between my HA and my CI, both wanting to lead the dance

then my CI won out and became the dance leader with my HA happy to follow

by 5 months my HA was a distraction, like carrying around my own noise maker and I stopped wearing it

at 8 months I received my second CI

Life is wonderful with bilateral CIs!

[lizjlong]

Thank you MaryBeth, that was very enlightening!!

[Mary Beth]

@lizjlong

Did you receive a Roger Select or Roger Pen plus a Roger MyLink neckloop in your activation Rondo 2 kit?

[Jewel]

@lizjlong

At my initial appointments the surgeon said he would do my worst ear. At the preop appointment I told him that I am self pay and I cannot afford to do both ears. So he decided I would have a better chance of success if I did my better ear. Note that I had been wearing a HA in my better ear since 2009 but I never wore it for say 100 hours in a month. I didn't get much benefit from HAs. In fact in 7 years I went through 4 HAs! I never wore a HA in my worst ear. 

I hear very well with just the one implanted ear. Rarely do I wish I was bilateral. If I lived in a country where insurance would fund the CI and upgrades then maybe I would do the second ear. But I'm happy with my one implanted side. 

[Mary Beth]

I am so happy things worked out so well for you @Jewel.

[Jewel]

Me too @Mary Beth.

Glad I took a leap of  faith and got the CI. 

[lizjlong]

Thank you for sharing your experiences MaryBeth and Jewel. It is so nice to chat with people who understand these questions and being hearing impaired in general. I was not diagnosed with hearing loss until i was 8 years old and my audiogram back then showed mild loss in both ears.  I did not want to wear the bte hearing aids, i was too self conscious. I went through ALL of school without wearing hearing aids at all. It was social suicide, i was bullied and picked on. But as I got older I met the right people and the friends that I still have today. Like Dr. Seuss says... Those who matter,don't mind, and those that mind, don't matter.. When I was 19 and met my ex husband, he insisted that I see an ENT and get evaluated. From 19 yrs old till present i wore CIC hearing aids. In the beginning they helped. But my hearing loss was progresive and not wearing any stimulation during my school years accelerated my loss..Of course I knew this after the fact... Nobody in my family has hearing loss, I never had a friend or co-worker with hearing loss, My son, who is now 21, has no hearing loss. So i basically grew up around "hearing people" and it was rough. My  loved ones could understand and support me butwas never something that I could fully explain to them, how isolating and depressing it was. I have known for years now that my CIC aids were not enough and I have known about CI's also.  It took me until I was 50 to say enough. I wanted better, I wanted to hear the best I could possibly hear. 

@Jewel, I am humbled by your experience. I could never afford to self-pay. I am so grateful that my insurance covered mine . This really puts things in perspective...

[Mary Beth]

@lizjlong

By the time I started my CI process my world had shrunk so small.  I needed to speechread in one on one conversations.  I was exhausted every day.  I withdrew from social events.

These CIs are life changing.  My world is full of awesome sounds.  I love group events and join in the banter.

We understand.  We have been there.

 

[Mary Featherston]

@lizjlong your experience sounds remarkably like mine, except I started with hearing aids when I was fourteen.  My primary memory about that (other than being helped by the hearing aid, I liked having it) was that the audiologist, who was a crusty old fart, at my first appointment couldn't figure out what to call me - clearly my name couldn't be Mary when I was wearing corduroy jeans and a button-up shirt.

Sexist of him, no?  Mom set him right straight.  From there I had a succession of hearing aids that helped quite a lot at first - I got through college and my young adulthood without much angst.  But as my hearing got progressively worse, the hearing aids were unable to keep up with my loss.  What got me on the right path was my audiologist went out of network so I got a referral from my regular doctor.

Well.  The audiologist that he sent me to worked as a team with an ENT and after my hearing test they were both appalled that I hadn't already been evaluated for CIs.  Apparently my previous audiologist was just mailing it in.  So they gave me a referral to a CI audiologist and a surgeon who's an ENT and otoneurologist, and that was that.  I haven't looked back, my CIs are awesome.

[Melissa]

On 5/26/2019 at 1:15 PM, Mary Featherston said:

@lizjlong your experience sounds remarkably like mine, except I started with hearing aids when I was fourteen.  My primary memory about that (other than being helped by the hearing aid, I liked having it) was that the audiologist, who was a crusty old fart, at my first appointment couldn't figure out what to call me - clearly my name couldn't be Mary when I was wearing corduroy jeans and a button-up shirt.

Sexist of him, no?  Mom set him right straight.  From there I had a succession of hearing aids that helped quite a lot at first - I got through college and my young adulthood without much angst.  But as my hearing got progressively worse, the hearing aids were unable to keep up with my loss.  What got me on the right path was my audiologist went out of network so I got a referral from my regular doctor.

Well.  The audiologist that he sent me to worked as a team with an ENT and after my hearing test they were both appalled that I hadn't already been evaluated for CIs.  Apparently my previous audiologist was just mailing it in.  So they gave me a referral to a CI audiologist and a surgeon who's an ENT and otoneurologist, and that was that.  I haven't looked back, my CIs are awesome.

I am so glad to read this, since we are at the stage of looking for implants for my 10 year old, who has done well with hearing aids since he was 3 months old but whose loss has worsened. I really worried for him about the transition from HA to CI.