Why I chose Med El. Finally a candidate!

[SarahDunlap]

Hi, all! I found this forum through hearingtracker.com and am so happy I stumbled on it. I look forward to reading about your hearing journeys and what I can expect as I move closer to surgery (July 1st) and then finally, activation day! (~4 wks)

Why I chose Med El and my story-

I am 41 years old, female, athletic, but also have some brain injury which may or may not have something to do with the severe to profound hearing loss that I experience in both ears. My right ear is moderate to severe, drops into profound at the highest frequencies, while my left just recently dropped into profound range with 0% word recognition.  I have been learning about CI's since 2019, first with Cochlear Americas. I had some great initial support from them but I still was pretty far away from candidacy (even though everyone working in CI field took one look at my audiogram and said I should be a candidate!) 

I was still getting help from HA's so I stayed the course but relocated my work to a warehouse type space and had to move to a more directional HA, which for me was the Phonak Marvel. This helped to not pick up sounds from above and all around me which made speech in noise a little easier. My hearing stayed the same for about a year or two and then suddenly and dramatically dropped mostly on my left side, but my right dropped some as well.  

Around this time, I was emailed by some random person who told me about Advanced Bionics and who I could maybe get a second opinion from in Pittsburgh. Just by initiating contact with AB, I felt like they were grooming me to get on board with their brand because I'm already a Phonak Marvel user and take advantage of the Roger Pen. I thought that this "connectivity" was the most important thing because I do stream a lot on my phone and want both ears to be exposed to the same noises in hopes I can make a better recovery w/my better ear in the mix. BUT, I felt like I was being sold, and I'm in sales too so I know what it looks like when a product gets "pushed." There may be many happy AB and CochlearA recipients, but nobody took the time the way Med El did in addressing each of my concerns. They described in detail w/and audiologist the many facets that the Med El implant can interpret sounds better than all the others.

The ability to simply participate in life is all I want again. I'm so exciting to get this done, I've already gotten my meningitis vaccine (Prevnar 20, one and done) and have chosen Med El, bright white on the Sonnet and black on the Rhondo. I can't wait to have some hardware on my head so I don't have to tell everyone first thing that I can't hear them! My HA's are nearly invisible. At least I hope it helps with that! Self advocacy is crucial when you suffer from an invisible disability like hearing loss, but it's also quite exhausting by the end of the day. 

I wanted to pop on this site to introduce myself. I'm looking forward to being a part of the Med El community and do wholly trust that my surgeon and support team have my best interest at heart. My activation probably won't be until the first week of August.  

One thing I might want to ask here is that I do live alone (w/one cat) and while I will have someone staying with me for my surgery, I know he won't be able to stay indefinitely. For those of you who have at least one implant already, did any of you do it on your own without much extra help from friends/family? I'm going to need the support but just not sure how vital it is a few days or a week after surgery? I plan on going back to work asap (also work alone). How detrimental is all this alone time just after surgery? If at all? I do prefer my alone time but with an implant in the head and all I wonder if I should have some company for a bit longer?

 

[Mary Beth]

@SarahDunlap

congratulations on a surgery and activation date!!  And welcome to HearPeers.  We are a friendly group so feel free to ask questions and share your journey.  Wishing you the best.

Which CI center are you using?  I go to New York Eye & Ear in NYC.

We have a monthly GoogleMeet with automatic captions so if you wish to join in, just reply in the post about the June 2022 GoogleMeet.

I took one week off of work for each CI surgery.  My recoveries were easy.

It is helpful to have someone for the first couple of days if possible.

 

[Andrew42]

@SarahDunlapWelcome to the Forum. You will find lots of help and opinions here.

My thoughts of company after surgery are as follows:

1. My surgery, (October 21) took place about 30 miles from my home. I spent two nights in hospital, one prior to and one post surgery. I was driven to the hospital but getting there by public transport from my home is very easy, (and preferable: who wants a car in a city centre?) and that is how I go to all of my follow up meetings. However, coming back from surgery was much more pleasant with a car and driver; (my wife).

2. Once home, my recovery was quick and pretty much painless so having someone around was pleasant but not necessary.

3. Post activation is a different story. It is very helpful to have voices to listen to even if you don't understand everything they say. You mention that you want to go back to work but that you work alone so if you live alone and work alone you won't have the voices to listen to and that you can ask to repeat what they said. That's a pity and it may slow down the speed of your adapting to the CI.

To cut a long story short, had I to choose, I would prefer company post activation to post surgery. 

Good luck with your journey.

[SarahDunlap]

Oh excellent feedback! Thank you! I am concerned about not being exposed to enough conversation / spoken words post activation but I'm hoping that I can make up for that with a lot of podcasts, audio books, and Netflix hopefully! But then am I going to run through batteries like crazy?  Cute story about public transportation to and from appointments and I know I will have company after surgery but I don't know that I will have company post activation. This may change the way I approach rehab if the more naturally spoken words, the better, post activation. My partner wants to be here after surgery (stuck in a long distance conundrum for now) but maybe I'll opt for more time in August. I really wish I knew my activation date! Thank you much for writing! You've helped without overloading me with clinical jargin. 🙏

[Nexus]

Hi Sarah, it's Fred from HearingTracker.    Congrats! 

[Jimit]

Hi @SarahDunlap, I was just looking around to get prepared for my surgery scheduled on 30th and bumped on your post. Just curious to know how it all went, if you find this message and have some time please share your experience. I assume you might not have activated the impant yet as you mentioned but I am just looking for the advice on pre and post surgery. 

Thanks in advance.  

[SarahDunlap]

Hi Jimit! Wishing you luck for your procedure!

Aside from increased nerves leading up to the surgery, I would say everything went well. I had the surgery on 7/1 and had a whole team of handsome doctors walking in and introducing themselves before I was put under. Got to the hospital at 5am and was on my way home by 12:30! I woke up in a lot of discomfort and pain but I have some contraindications for the anasthesia medicine. The same day I had a lot of pressure from the dressing and was in pain but not too terrible. I took the cap off my ear before I even got through the first night although you're supposed to leave it on for the first full day.

Second day I was feeling pretty great. Not a lot of pain. My partner and I even went out on the town and had a night out (furries were in town-couldn't miss that!).

Then the next few days I felt more pressure/pain. Had very little dizziness, but discomfort was pretty high because I tend to do too much (physically.) I was back to normal living and work in one week, but I think I would have been better off taking ten days off rather than seven. My work requires physical strength so I started back too soon.

Anyway, mostly pain-free, except for some nagging headaches. My surgeon said he didn't think headaches were from the surgery, but it was bc it would only happen if I lifted too heavy or did too much. They've since ceased. 

Then! On top of all that, I had a small issue at the incision and maybe it was my fault for how much I was doing, but I had a small collection of blood and fluid, almost like a blood blister right behind my ear right around two weeks. That was gross and popped-drained for two days & am taking antibiotics for it so it doesn't get infected.

I think once this small bit heals I'll be ready for activation.

My tinnitus didn't get worse and I didn't have dizziness. Most people say little to no pain, but I did have a lot of pain and pressure. Just like everything though, it passed. I hope yours goes smoothly! I'm sure it will, just follow the directions and I'm sure it will go smoothly.

 

[Mary Beth]

@SarahDunlap

When is your activation?

[Jimit]

Thank you so much for sharing your experience @SarahDunlap it will surely helps.

I have planned for 15 days of rest already after the surgery which seems too long hearing your story 😛 but better to have a buffer just in case.

Glad to hear you are recovering well. Looking forward to hear the activation story. Take care.

[Dianna]

Hi sarah, i love to hear activation stories....good or bad! Also sorry you had pain and headaches. I think 10 days is good, my activation was 14 days, and would have suggested days off for checking out equipment and wow moments!

[SarahDunlap]

On 7/18/2022 at 10:35 AM, Mary Beth said:

@SarahDunlap

When is your activation?

Activation is Monday, August 1st!

I wish I would have requested more time off. Sadly, I will have one day and then it’s back to work for me the very next day. This week has been especially difficult for some reason, having bad hearing days and finding a bit more frustration than usual. 
I’ll keep ya’all posted when I get switched On. I’ll start with Rondo 3 for first two weeks, then they introduce Sonnet 2 to the mix. Appreciate the support on this page! Thank you all! Good luck to those ready to start their journey!

[Jimit]

Thanks @SarahDunlap, I am just couple of days away to surgery 30th July. Have a mixed feeling. Hoping for the best but planning for the worst. 🙂Will wait to hear about activation day. Keep posting.

[Mary Beth]

@SarahDunlap

Wishing you the best at activation on August 1st!  Remember it is just your starting point.  It gets so much better.  Looking forward to following your journey.

[Mary Beth]

@Jimit

Wishing you the best for surgery on July 30th.  It’s almost here.

[Dianna]

7 hours ago, Jimit said:

Thanks @SarahDunlap, I am just couple of days away to surgery 30th July. Have a mixed feeling. Hoping for the best but planning for the worst. 🙂Will wait to hear about activation day. Keep posting.

Hey jimit! Your day is approaching! Yay!

I made sure i had favorite drinks and snacks ready for when i got home. I would say the first 24 hours i tried to rest and sleep, mostly in a recliner. I took the pain meds on time throughout the day and night, which helped me sleep. I think the excitement building up prior to surg helped also!

I will do it again, if i need to. Wasnt as scary as i thought!

Take care and let us know how you are doing

 

[Dianna]

10 hours ago, SarahDunlap said:

Activation is Monday, August 1st!

I wish I would have requested more time off. Sadly, I will have one day and then it’s back to work for me the very next day. This week has been especially difficult for some reason, having bad hearing days and finding a bit more frustration than usual. 
I’ll keep ya’all posted when I get switched On. I’ll start with Rondo 3 for first two weeks, then they introduce Sonnet 2 to the mix. Appreciate the support on this page! Thank you all! Good luck to those ready to start their journey!

Yay, almost here! I dont think i slept much day before activation, i was soooo excited! As each electrode was turned on i actually ducked! It was kind of like those old dolby movie intro, it was amazing to me! I felt like i was in a star wars or star trek movie. Lucky for me i could hear words, alien words but words. I was so entertained by all the sounds, most electrical to start. Im a huge star wars fan so it was fun and not detrimental to me.

I cant wait to hear your story! Enjoy!

[Enegra]

11 hours ago, SarahDunlap said:

Activation is Monday, August 1st!
I wish I would have requested more time off. Sadly, I will have one day and then it’s back to work for me the very next day. This week has been especially difficult for some reason, having bad hearing days and finding a bit more frustration than usual. 
 

Good luck on your activation day!

Hopefully you will get some enthusiasm from the newly found sounds, that ought to help you coping with the return to work!

 

8 hours ago, Jimit said:

 I am just couple of days away to surgery 30th July. Have a mixed feeling. Hoping for the best but planning for the worst. 🙂

Fingers crossed that it goes all fine! Serious complications are really rare nowadays. I hope it doesn't sound wrong coming from me...

[SarahDunlap]

11 hours ago, Jimit said:

Thanks @SarahDunlap, I am just couple of days away to surgery 30th July. Have a mixed feeling. Hoping for the best but planning for the worst. 🙂Will wait to hear about activation day. Keep posting.

You got this! I know I was heavy on the forums before surgery. Nobody in my immediate family or friends could understand the anxiety/excitement that was bubbling up inside of me, so it really helped to have those few people understand and support me going into surgery. On the morning of, I think you will feel relief. Just a few days before though, is quite nerve-racking. Some people suggest having comfort food and cozy digs to return to, and I do think that is quite helpful. Will you have someone close to you with you for at least the day of surgery and the day after? 

[SarahDunlap]

3 hours ago, Dianna said:

Yay, almost here! I dont think i slept much day before activation, i was soooo excited! As each electrode was turned on i actually ducked! It was kind of like those old dolby movie intro, it was amazing to me! I felt like i was in a star wars or star trek movie. Lucky for me i could hear words, alien words but words. I was so entertained by all the sounds, most electrical to start. Im a huge star wars fan so it was fun and not detrimental to me.

I cant wait to hear your story! Enjoy!

Your story is motivating for me at least! I didn't know if I would really hear much on day one as my CI lady says it may be weeks or months before I have words. If I have alien words at all, I will be so pleased! If I have anything, I will be pleased. 

I'm sure she's just keeping my expectations low, but I have a feeling it will be quite emotional to have any life at all on my left side assuming all is well with the implant and electrodes are in place. That's pretty cute that you were ducking when the sounds came on! Appreciate your extremely optimistic story!

[Jimit]

40 minutes ago, SarahDunlap said:

You got this! I know I was heavy on the forums before surgery. Nobody in my immediate family or friends could understand the anxiety/excitement that was bubbling up inside of me, so it really helped to have those few people understand and support me going into surgery. On the morning of, I think you will feel relief. Just a few days before though, is quite nerve-racking. Some people suggest having comfort food and cozy digs to return to, and I do think that is quite helpful. Will you have someone close to you with you for at least the day of surgery and the day after? 

Thanks Sarah, Yeah I have plenty of people around to take care. And surely, talking to people of this forum helped a lot to understand how things will unfold before and after a surgery. I have been visualising it in detail but there will be surprises for sure. 😛

[Dianna]

Haha, yes i read a few things about day after but i wasnt in any forums. It happened kind of quick because my insurance was changing end of month, i only waited about 10 days. I joined hearpeers a few days before surgery, then researched in that forum for some specific things. 

I had studied research papers a LOT. So yes i had fears but the excitement kept me rolling. I showed pictures and stuff with my family and they were excited for me.

Being in hearpeers was best at that time. Since then the forums have been helpful cuz i know whats being discussed now!

One of my nieces was my hospital ride and companion surgery day, on activation day my older sister went with me (had to get special permission covid rules) we had to drive by my niece so i could make fun of her voice, she bawled like a baby!

Yes i am optimistic, 65 yo and felt sooo left out. I had just moved a long way, had a job where my boss ridiculed my hearing. I was so frustratd with my hearing i made myself do it all on my own. Yeah some dinners and get togethers are not perfect but much better than pre implant. And i worked very hard on rehab.

All the research papers i read had percentages of folks with success from rehabbing, so i rehabbed on my laptop with angel sounds and 2 others on my phone. Instead of my usual play game i rehabbed. I used spotify as much as i could stand it...it was so dissapointing, but it got better slowly. I had plenty of time, no job, no kids, i just listened. Much more fortunate than folks with jobs and kids. And i live in a house with 3 roomies very supportive. On surgery day they made little beds, places i could rest when i got home i had 3 choices to sit and a little bed on the couch with a giant candy bar on the pillow! ( my room is upstairs and had to stay downstairs 2 days)

It may be disappointing at first because using ha is immediate, ci is not.

Keep the faith! We are here for you!

 

[Jimit]

Hey @Mary Beth, @SarahDunlap, @Dianna just exciting to share its done. 

I even managed to share the whole story here. 😃

https://forum.hearpeers.com/topic/11190-just-implnted/?do=findComment&comment=52122

Thanks you all for the great support.

[Mary Beth]

Looking forward to following your CI journey @Jimit

[SarahDunlap]

No amount of reading could have prepared me for the experience of being "activated!" This is totally out of this world! Just wanted to let y'all know that everything is working as it should. No rockstar activation or anything. I guess it's good to keep your expectations nice and low for the first few weeks/months. This makes sense to me now. Happy I'm getting started! 

[Mary Beth]

@SarahDunlap

My activations were  static and beeps and marimba.  😂 

The only thing that matters is you have started on your CI journey.  I look forward to following your journey.  Wishing you the very best.