Activated 7 years ago today

[Mary Beth]

Seven years ago today we activated my first cochlear implant in my right ear which had not processed any sound at all for the previous 24 years.  It was a difficult ear to implant due to ossification and scarring from advanced otosclerosis and several previous ear surgeries.  The round window was blocked so my surgeon had to drill through my cochlea.  Then the path was still blocked and more drilling was needed.  The prognosis before surgery for restoring hearing in my right ear was guarded.  At best it was expected that the hearing in my right ear with a cochlear implant would make speech reading easier for me.  The ability to hear and understand speech without any visual cues was not likely.  I almost did not go through with the surgery.  I am so glad that I chose to take a leap of faith.  So so very glad.  At activation one month later, I heard static and beeps.  I was thrilled to hear static and beeps in an ear that had not heard anything for 24 years.  A few hours later the first words arrived.  We were in awe!  Every single day I woke up excited to see what new WOW moments awaited.  My right ear is an amazing CI ear!  It loves speech, music, nature, phone calls, audiobooks, crazy group game nights, gentle purring.  I am grateful for this gift of hearing every single day.  So very thankful to everyone who has helped me on my CI journey.  Taking the leap of faith and beating the odds.  So grateful.
 

Thank you @MED-EL Moderator

[Prudence]

@Mary BethTotally blown away by reading your journey. Never say never. Feeling much more reassured with this new CI journey of mine too. If and when things get interesting in the next few months post first activation, I will remember your story and keep on working hard. You’ve given me so much hope and something to look forward to. You are truly a miracle, for all the obstacles you’ve been through. Strong looks great on you!
Congratulations on your 7th year hearing anniversary!

 

[Mary Beth]

@Pru

thank you so much for your kind words!  Looking forward to following your CI journey!

[MED-EL Moderator]

Dear @Mary Beth,

thanks so much for sharing and for all the help you constantly give to other CI candidates and users ❤️ 

 

[Mary Beth]

@MED-EL Moderator

It’s my pleasure 

[Kerri M]

Your story has brought tears to my eyes.  I also have advanced otosclerosis which has claimed my hearing on the right side. My CI surgery is scheduled for April 29th.  I am both scared and excited.  Your story is an inspiration to persevere with the challenge ahead. Is sound natural as you remember?  Thanks for sharing.

 

[Mary Beth]

@Kerri M

Thank you.  Wishing you the very best on your journey!  Which processor are you choosing?

Yes everything sounds very natural now.  Even better than I remembered it.  Smile.  But it takes time.  Aural rehab helped me a lot.  Check out our aural rehab topic.

This video is where I shared my CI journey in case you are interested.

 

[Kerri M]

Thanks so much for sharing.   I live in Canada and my otolaryngologist recommended the Med-EL CI.  I didn’t do well on my vestibular testing. My doctor said Med-EL is the only brand he’d use on me given my tests results.  Post surgery dizziness is a real worry for me.   I guess the Med-EL electrode array is stiffer allowing for more surgical  control.  I’m going try the Rondo processor.  There is too much going on behind my ears with glasses, hearing aids and masks.  If there are issues with the Rondo I have a window of time to switch to the synchrony.  Any experience with the Rondo? Does the Rondo fall off easily?  

[Kerri M]

Sorry typo.. can switch to the sonnet

[Andrew42]

@Kerri M. I am just over four months into activation of a Rondo 3. My hair is kept reasonably long and I have it cut only about once every five months. My Rondo is attached by a small clip to my hair. In the past months I have learned the following for what it is worth:

1. First thing in the morning I do not attach the clip because I take my Rondo on and off depending what I am doing while getting up, washing, shaving etc. It is so easy to attach and detach that I do it frequently. I like hearing the sounds around me.

2. Adding and subtracting garments over the head tends to dislodge my Rondo so I simply remove it prior. That's why I don't use the clip until everything is fixed.

3. Swinging a jacket over my shoulder can have the same effect.

4. I started out on a magnet strength four and now have a two. My Rondo never falls off unless something mechanical hits it.

5. I spend a lot of my time over a mile high so hats, jackets etc are normal. I have learned to be careful putting things on and taking them off.

6. Sitting in a dentist chair having your teeth cleaned is not really compatible with wearing a Rondo. I know from experience.

6. I once had a malicious melanoma on one ear so it is smaller than my other. I wear glasses at times and have a hearing aid in the other ear. For these reasons not having another behind ear attachment is my preference. Wearing a covid mask was a real pain for me until I found a system where it could attach around my neck and not over my ears.

Summary:  I do not regret choosing a Rondo but I have had to learn adapt to its strengths and weaknesses versus a behind-the-ear solution.

[Mary Beth]

@Kerri M

I have Rondo and it only falls off if I do something that knocks it off.

Probably the main differences between Rondo 3 and Sonnet 2 are battery options and connectivity options.

We have a monthly GoogleMeet with live captions and are a very friendly group.  If you are interested in joining the May 1 meeting, just follow this link and reply.  We always have first time joiners.

 

[Hal in Maryland]

Hi @Mary Beth, I just viewed your Journey YouTube video. You present yourself so well and I am impressed by your progress despite your prior surgeries and otosclerosis.  I am inspired by your story.

My first wow moment was on the day of activation (1st CI), when I went to the Men's room and said to myself, "Oh, it make noise when you pee!" .  

I enjoy reading your posts.

Hal

[Dianna]

10 minutes ago, Hal in Maryland said:

Hi @Mary Beth, I just viewed your Journey YouTube video. You present yourself so well and I am impressed by your progress despite your prior surgeries and otosclerosis.  I am inspired by your story.

My first wow moment was on the day of activation (1st CI), when I went to the Men's room and said to myself, "Oh, it make noise when you pee!" .  

I enjoy reading your posts.

Hal

Hi hal, first flush (wow) congrats...sometimes the small stuff has the biggest reaction, right?

[Dianna]

By the way, gratz mary beth!

[Mary Beth]

Thanks for your kind words @Hal in Maryland.

One thing that strikes me as very odd indeed, and still does over 7 years later, is that people actually have conversations between bathroom stalls in public restrooms! I can not imagine a conversation that is so important.  Smile

[Dianna]

On 6/16/2022 at 10:29 AM, Mary Beth said:

Thanks for your kind words @Hal in Maryland.

One thing that strikes me as very odd indeed, and still does over 7 years later, is that people actually have conversations between bathroom stalls in public restrooms! I can not imagine a conversation that is so important.  Smile

I have had very important conversations such as "does your tp dispenser work"

Not making fun, i have had to say what to those folks previously.

[Hal in Maryland]

2 Questions for @Mary Beth: 

1. I saw in a post -- you reference "Rogers Tech". Where can I find out more about this alternative to Audio-Link?

2. Now, that my rechargeable batteries need swapping two + times each day, and that you have returned to disposal batteries--  Which Power-One batteries are best and where is a reasonably priced place to buy them?

I have sonnet-2  processors R/L

Thank you.

[Mary Beth]

@Hal in Maryland

Power One implant batteries 

I have been using them for years with my Sonnets and I just switch every other morning.  And never experience a dead battery.  (Batteries would last me a bit on day 3 but not enough to change my schedule)

 

If you tell me how you wish to use the Roger System, I can offer suggestions.

[Hal in Maryland]

Thank you @Mary Beth. 

I'll get back to you about Rogers System.

Hal

[Mary Beth]

@Hal in Maryland

check with your Med-El CSR about having your insurance cover these disposable batteries and being placed on the quarterly battery shipment plan with Med-El .  My insurance covers them.

If your insurance does not cover them, they are much less expensive to order through other online vendors.

[Hal in Maryland]

@Mary BethMy insurance is Medicare. I never considered claiming batteries. I have always paid for them myself. I will ask Med-El. Thank you.

[Mary Beth]

@Hal in Maryland

@Joan was successful with Medicare and Med-El battery shipment plan.  I hope you are as well.

[Hal in Maryland]

Thank you @Joan and @Mary Beth. I just sent an email to my MedEl rep. Hopefully, she will guide me to the Med-El battery shipment plan. 

Thank you.

[Joan]

@Hal in Maryland Talk to your customer service rep at Med-El. You should be able to set up ongoing periodic battery shipments that Med-El will automatically bill Medicare for. I haven’t needed batteries since I upgraded to Rondo 2s nearly three years ago, but for my five years with my Rondo 1s, I didn’t have any problems. Good luck!

[M Dodge]

Mary Beth, your story is amazing. I like the gentle purring comment.