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What to expect from a Nervous Nelly


twinelm
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So I had SSNHL loss, approved for CI, surgery date set for August 27th and I researched the three options, picked Med-El, found this forum, and am just waiting now...tick...tick...

I am really excited at the prospect of hearing again but...

How did you feel when you woke up after surgery? I am going home that day and really wondering about pain, dizziness, etc. How long did the yuck feeling last before feeling somewhat normal again....and waiting....this time for the processor. I am really committed to doing as much hard work as I can to get my hearing back in my left ear, though the right is in just as bad shape also (had two SSNHL episodes, 3 years apart) and so will definitely be getting another CI in the right ear once the left is better.

Any information I can get will help as I am mildly terrified of the surgery and the idea of having my skull drilled. I really am a Nervous Nelly about hospitals and doctors!

Thanks in advance.

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I just received my implant about eight months ago and my surgery was early in the morning and I was around noon cooking myself a late breakfast. Although there was itchiness, sore throat, and some pain it truly wasn’t anything compared to living without hearing and suffering from quite debilitating tinnitus. I believe I was working again within four or five days which in all honesty might have been a little too fast but was fine. I’m not trying to say it was a walk through the park but they did such a great job and I truly felt like I was in great hands and that really reassured me. And now I simply can’t imagine my life without my implant. Good luck and keep us posted and keep asking questions it is really a supportive group of folks here

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@twinelm

Congratulations on your upcoming CI surgery.  I found the surgery to be very easy.  I was not in pain.  I hope you are as fortunate.

Which processor did you choose?

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I personally was very lucky. I only experienced pain on the side of the head from the incision.  I didn't have any dizziness or anything like that.  The pain does subside after a couple of days but the pain meds helped really well to be more comfortable.  I'm excited for you! There are some great YouTube videos online (if you can handle it) that show how the surgery is prepped etc.   It's very uneventful except they do scrape some skin layers off for "seating" the implant.  

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So @Dennisjbr thank you for the insight. I had already made up my mind to do the pain meds which I normally never take. Just having tough time with the whole head drilling thing. Normally not scared of anything but this has me a bit spooked. I am excited because trying to work as an assistant director of planning and development for a booming Texas city with all of the meetings, negotiations, etc not being able to hear is horrific. Not to mention the toll on my psyche always being excluded and in a world of my own socially. Ugh! So ready to have a path toward working at some level of normalcy!

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@twinelm I hear that about the planning and boomtown.  Be careful what you wish for!  You will be hearing a LOT more than with the hearing aids for sure, so be sure to gradually increase your usage.  It does take some time for you and your brain to acclimate/adjust.  

Don't worry about the pain meds. Again I took them for almost a week, and they helped immensely!

Again, I'm not a professional but this is what the surgery would look like.  From the video below, there really isn't any "drilling" all the way through except for the implant seating.  They use your existing ear canal go insert the electrodes through your cochlea.  

i hope this video gives some comfort!  

 

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Also, @twinelm, This video was really helpful when many people asked me how implants work. The illustrations in the video are priceless!  

 

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1 hour ago, Mary Beth said:

@twinelm

Congratulations on your upcoming CI surgery.  I found the surgery to be very easy.  I was not in pain.  I hope you are as fortunate.

Which processor did you choose?

Thrilled to hear that anecdote. My hospital is a two processor hospital so the Rondo3 and Synchrony2. I had done my research on the three company choices and came up with Med el because it seemed the implants (sorry my terminology isn’t the best) were thinner(I am a small person), maybe a tidge  more flexible, and that was what I was really choosing as the rest is constantly being improved. I wanted an off the ear option because my ears externally are small and most sunglasses annoy me so I wanted that option. I liked the two signal switching (sorry don’t know the exact terms) as that seemed to offer me the best shot at being able to function at a high level at work AND music is, or should I say was, very important to me and I would love to have it back.

I wasn’t sure if I was going to get steered to another company but imagine my surprise when the sweet audiologist who had been so compassionate at my hearing struggles upon hearing my choice, immediately passed me to her colleague on staff who is “the Med-el expert”! Turns out my surgeon had come to our great hospital system from Philly where Med-el was done a lot and in the past couple of years the percentage had shot up with this audiologist being well versed (and seemed to prefer it even since I had made my choice already(. He said he works hard to get music back for his patients.

I am OVER THE MOON. I knew it was very important to have a choice  of implants my surgeon would be well versed on and was willing to go to Cochlear if I had to for that reason. 
it was very unsettling to have to make such a choice. I mean when someone gets a hip replacement they don’t choose which company’s product the surgeon uses!!

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@twinelm

I remember that feeling very well.  So strange to choose the implant brand.

It’s great that you will have a Rondo 3 and Sonnet 2.  Over time, you will learn which one you prefer.  They will both sound great.

I go to NYEE in NYC and they are a two processor center as well.  We are very lucky.

Which CI Center do you go to?

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18 minutes ago, Dennisjbr said:

@twinelm I hear that about the planning and boomtown.  Be careful what you wish for!  You will be hearing a LOT more than with the hearing aids for sure, so be sure to gradually increase your usage.  It does take some time for you and your brain to acclimate/adjust.  

Don't worry about the pain meds. Again I took them for almost a week, and they helped immensely!

Again, I'm not a professional but this is what the surgery would look like.  From the video below, there really isn't any "drilling" all the way through except for the implant seating.  They use your existing ear canal go insert the electrodes through your cochlea.  

i hope this video gives some comfort!  

 

Wow this was very helpful, THANK YOU! I have never had hearing aids because with  my hearing loss distortion is severe. I can hear a little and lip read. For 3 years my left ear was at about 50-60 percent while the right was maybe 15-20 percent and I was struggling but functional. Knew that CI was an option but wasn’t desperate enough to look at it. Then On May15th my better left ear began a steady crash all day so that by bedtime it was nearly 0. I could no longer hear myself talk. Freaked, spent the night in the ER, got tested for stroke etc, but I knew what it was because same thing had happened in 2018. With steroids and 4 steroid injections into the ear the left seemed to respond but as soon as I came off steroids (that I had a horrid reaction to —hypomania) it decreased to be somewhat worse than the right ear (which had remained exactly the same since the sudden loss in 2018)

I will have the right one done as soon as I  can master the left since it is so bad. I am able to barely make out a cellphone conversation with the right ear with speaker option on. In person I lip read and can guess content from context. 
I go home exhausted every night though. It is truly terrible to try and function with as many meetings as we have. My staff  is really good to help me to but I can’t wait for this to be over!

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12 minutes ago, Mary Beth said:

@twinelm

I remember that feeling very well.  So strange to choose the implant brand.

It’s great that you will have a Rondo 3 and Sonnet 2.  Over time, you will learn which one you prefer.  They will both sound great.

I go to NYEE in NYC and they are a two processor center as well.  We are very lucky.

Which CI Center do you go to?

Baylor Scott and White is based in my city of Temple so I feel very lucky!

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41 minutes ago, Dennisjbr said:

Also, @twinelm, This video was really helpful when many people asked me how implants work. The illustrations in the video are priceless!  

 

This was great, too ! Thank you, Dennis. Sent to my three adult kids!

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Hi @TexOkie, for me, once it was approved by insurance, it was a matter of scheduling, and I think Stanford was about 6 weeks out or so? Depends on how busy the ORs were.  Also now with COVID restrictions etc, it may take longer but again depends on each provider.

 

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@twinelmI just found an updated video on how implants work with a mention/focus on Synchrony 2, but really the content is 99% the same.  Anyway here it is!

 

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WARNING: This video is not for everyone!  If anyone can stomach what a real-life surgery looks like, here you go.  It's only 5 minutes long, and the objects obviously look much larger than what they really are.  They are a lot smaller and it looks like this implant is actually a Synchrony implant from what I can see. Fascinating!  Also, keep in mind this video is from 2015.  This is the same year I got mine, and I imagine that procedures have improved since then.

https://www.youtube.com/watch?v=YwdnBqXu53w&t=136s&ab_channel=NucleusMedicalMedia

 

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@TexOkie

My first CI surgery was done the same month due to a cancellation in the surgery schedule.

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7 hours ago, Eric in Tulsa said:

From the time you were approved, how long was it before the surgery?

i have about a month wait because of surgeon scheduling.

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15 hours ago, Jared Charney said:

I just received my implant about eight months ago and my surgery was early in the morning and I was around noon cooking myself a late breakfast. Although there was itchiness, sore throat, and some pain it truly wasn’t anything compared to living without hearing and suffering from quite debilitating tinnitus. I believe I was working again within four or five days which in all honesty might have been a little too fast but was fine. I’m not trying to say it was a walk through the park but they did such a great job and I truly felt like I was in great hands and that really reassured me. And now I simply can’t imagine my life without my implant. Good luck and keep us posted and keep asking questions it is really a supportive group of folks here

Very helpful, Jared. I had to cancel a two and a half week dog show road trip that was scheduled right after surgery because I felt I needed to "baby" myself, have lots of sick leave too so this is very encouraging!  They are rescheduling my "turn on" date due to having the other audiologist on board, so hoping it is  closer to the 3 week mark.

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I just had to look at my Health app.  I had my surgery 5/27.  The cup they put on was the most annoying / painful-ish part of it all.  There was also a bit of mix up the day of surgery as I was told one time and intact had to be there two hours prior.  Post surgery (and the reason I double checked my health app) I was out and about walking to the pharmacy and such (another mix up) and it shows I did 3.7 miles that day.  So obviously was alright minus a few moments of like, vertigo/dizziness every now and then.  
 

Take your pain meds as needed, as well as the antibiotics if they prescribe it.  I’d say the CI surgery was easiest of the 3 or 4 types of surgeries I’ve had in my life.  Don’t get caught up reading random horror stories of the surgery.  It’s akin to whenever I take a flight someplace…there’s always a dang airplane crash type movie the night before without fail.  Just gotta ignore all that entirely and focus solely on yourself as well as all the possibilities you’re about to encounter once activated.  :)

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@twinelm I was implanted on my left side in August 2019 at UTSW Medical Center in Dallas. I experienced only minor discomfort at the incision site and did not take any pain meds, though they sent me home with the medications. It was discomfort not pain. At activation I was understanding speech from the audiologists before the session was over. Within three or four days I could carry on a normal conversation with my wife in a quite atmosphere. Between one and two weeks I completely understood audio books on my iPad. I had to hold the iPad speaker up at chest level but after the next mapping session I could lay the iPad on the table next to my chair and understand it well. I did have problems understanding some people on the phone. I think that my phone was going bad because when I got a new phone there was great improvement. I also had and still have a problem with the sound on the TV. I can understand it but it does not sound good so I use headphones to watch TV. The sound is perfect with the headphones. I started this journey with only 12% of my hearing, I now score 87 % on the word recognition test. Having this surgery was one of the best decisions I ever made. I forgot to mention I have Rondo 2 and Sonnet 2 processors. 

 

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Thank you! That is VERY encouraging!

Now another question, how long did it take before you were experiencing improvement? I know it is a lot of work to train the brain but I don’t know what to expect. Is improvement possible in the first month?

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@twinelm

I noticed improvements every single day after activation.  It was amazing!

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7 hours ago, John F said:

I just had to look at my Health app.  I had my surgery 5/27.  The cup they put on was the most annoying / painful-ish part of it all.  There was also a bit of mix up the day of surgery as I was told one time and intact had to be there two hours prior.  Post surgery (and the reason I double checked my health app) I was out and about walking to the pharmacy and such (another mix up) and it shows I did 3.7 miles that day.  So obviously was alright minus a few moments of like, vertigo/dizziness every now and then.  
 

Take your pain meds as needed, as well as the antibiotics if they prescribe it.  I’d say the CI surgery was easiest of the 3 or 4 types of surgeries I’ve had in my life.  Don’t get caught up reading random horror stories of the surgery.  It’s akin to whenever I take a flight someplace…there’s always a dang airplane crash type movie the night before without fail.  Just gotta ignore all that entirely and focus solely on yourself as well as all the possibilities you’re about to encounter once activated.  :)

Thank you, for your wisdom, John. How hard has it been to master how to hear with the CI? Was it difficult or frustrating?

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@twinelm there was constant improvement with each mapping. I was extremely lucky with my rehab I had very good results without a lot of hard work. I had used a FM receiver for Church Services for years, two weeks after my activation I attended Services and could understand the speaker just fine using only my Rondo2. I went to a support group monthly meeting until the pandemic shut it down. People would tell their experiences and there were several that were having extremely difficult times. There were others that like me had very few difficulties. There are no guarantees, everyone is different, but I will say that the number of successes far outnumber those people with extreme difficulties. Some people have to put forth more effort in their journey than I did but who knows, had I put more effort into it my TV and phone problems may have improved quicker and be at a much higher level at this point. My last mapping was in September 2020, I only had three mappings after activation due to the pandemic. My next appointment is September 2021. One CI center in Dallas requires all there patients to attend sessions with a speech therapist. They believe that this is very beneficial to rehab results. UTSW did not require it but recommended it if I were experiencing difficulties. With the successes that I was having, my audiologists said she did not think that I would need that therapy.

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