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Mary Beth

October, November, December 2019 surgery/activation

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Anyone with surgery or activation in Oct, Nov or Dec want to share your dates and progress with us so we can root you on?

@Rick H

@dkritter

@Tutz67

@MaryGP

@Eugene Vahlkamp

 

I feel like I am missing people.  Please let me know if I accidentally missed you and I apologize in advance.

 

How about sharing your surgery/activation date......first CI or second?......processors you chose....and anything else you wish to share with us.

Wishing you all the very best!

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Hi Mary Beth and all,

Thanks for checking in.  I am very lucky to live 30 minutes from Wake Forest Baptist, and 1.5 hours from UNC Chapel Hill.  So, I am looking into both of them for my surgery and rehab.  I had a consult on 10/3 at WFB.   The program for adult CI is small.  There is 1 surgeon who does it - and she is amazing.  Trained at House (where CI was invented).  This is the same place I have been going to for my initial diagnosis and all my audiologist appointments.  Pros - love my audiologist (we already had mutual friends), love the surgeon, feel really comfortable there.  And, it is small enough they work with you on a case by case basis.  They were not surprised at all when I took out my CROS hearing aids because the fatigue increase was unbearable. 

Cons - they don't seem to have an "established" adult CI "program" - they do them, and they have rehab, but it is small enough they do it on a case by case basis.  They did not have much experience with the life altering fatigue I have been dealing with (Highly challenging listening environment at work).

I have a consult with UNC-CH 11/4.  Haven't met them yet. So, there is only so much I can say here:  Pros - they have a large (5 surgeon team), established program.  the surgeon I am seeing is highly reputable.  Even my surgeon at WFB commented on what a good reputation he has. The work done to get Med-el approved for SSD (my diagnosis) was done at UNC-CH in concert with Med-el whose USA headquarters is 5 minutes away.  I have an open house appointment with Taylor at Med El on the same day.  Lets put it this way, I researched this stuff for 2 months and then I found the UNC CH portal where all my research was in a single place and took 5 minutes to evaluate.  The information Taylor sent me from Med-el was created by the research audiologist at UNC.  It is entirely possible they know things like clockwork that WFB hasn't experienced yet. 

Cons - they are 1.5 hours away.  thats a lot of travel for rehab - OK, I know I am spoiled and there are peeps out there who travel 6+ hours.  But, its a consideration none the less.  Probably a little less personal - as the program is so large. 

Overall - from the scans and the experience/capability of the surgeons - its probably a wash.  It comes down to the after care program.

I think the implant is going to be the same either way.  Synchrony 2 and Sonnet 2.  With my listening environment at work I understand the sonnet will be better than the Rondo.  And, I don't care if people see it.  For me, its better that they do - so If I don't hear them they don't think I am being a snob.  haha..

Any input would be appreciated.  On one hand, I feel like it is a pretty big and important decision.  On the other hand - they are both highly respected research hospitals - so maybe I am  making too much of it.

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@MaryGP

Taylor Sands is super!  I met her at a Med-El workshop in 2016.  Very wonderful person.

We need the surgeon to be fabulous on surgery day.  We need our CI audiologist to be fabulous for our lifetime.  😊 

It is very helpful to be paired with a CI audiologist who is a great match for you.  I would never hear as well as I do without the awesome skills of my CI audiologist.  She listens to everything I report to her.  She is amazing.

In the beginning, we have a lot of appointments.  After things stabilize, we only go twice a year unless there is a problem.

Most adults do the aural rehab independently.  There are many free apps, websites, activities, etc.  Have I tagged you  on my favorite aural rehab activities yet?

It is an exciting, life changing journey.  Everyone’s journey is unique.  Keep a listening journal.  I am still entering WOW moments in my listening journal 4.5 years post activation.  It is amazing.

Wishing you the best.

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Yep, activation tomorrow 10/14/19, 2:30 in the afternoon central time. it's been a pretty quick 3 weeks from the surgery but these last two days have dragged. Can't wait to see what happens.

Left ear lost all hearing 3/14/19 in two hours while out for a hike,  year before 5/28/18 most hearing in right ear overnight, but do have a hearing aid right ear that's somewhat functional.  I feel like I've been living with half a brain - exhausting to say the least.

Hoping once activated and into my rehab - my head will feel balanced.

I'll be activated with the Rondo2 tomorrow and have the Sonnet as well but need to keep that in the package to turn in for Sonnet2 upgrade this fall.

Updates forthcoming

 

DK

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Hi everyone & thanks for checking in Mary Beth! 

Yes I had my surgery a little over a week ago (October 4th) but I just didn’t post anything yet as it was so uneventful! That is, not much to report, so I figured I would post after my activation. I have to admit this was one of the best surgeries I’ve ever been through. Everything was pretty much what I expected or less! My surgeon Dr Trac Duong , & the surgical staff at Overlake in Bellevue were fantastic! 

The surgery was just over 3 hours & they implanted a Medel Synchrony with flex 28 electrode array. All electrodes got inserted & the doctor turned it on during surgery to make sure it worked. I went home that day & was surprised at how little pain or discomfort I experienced. The hardest thing was the plastic piece over my ear for 2 days riding on my ear lobe! Lol. I took all my pain meds & antibiotics as instructed but really the pain was never more than a 2 out of 10. I had a little pain in my ear when chewing at first but that went away before I finished my first meal! The other things were pretty much all the normal things we read about with this surgery.  A little discomfort in my throat from  the breathing tube that went away the next day & my sense of taste was gone on half my tongue which is getting better also. The good news is now my cooking is only half as bad! Just kidding! As expected there  was some numbing on my implanted side & I expected My tinnitus to increase which it hasn’t at all. In fact the only difference I noticed  is since shortly after surgery it has changed to a constant  oscillating ringing which is slowly going away. At first I thought I might have retained  some residual hearing as I didn’t  notice any difference in my hearing right after surgery but as the swelling kicked in the hearing went away in that ear so time will tell when the swelling goes completely away. I didn’t really notice how deaf I am since the surgery until a few days ago when I took one of my cars to the store. I’ve always been a car nut & people at work know me as the guy with the nice cars. But with my hearing loss I’m a little reluctant to drive them as they draw so much attention! When I came out of the store there where already 3 people waiting to talk to me. Even after telling them I had ear surgery a week ago & couldn’t hear them, they still kept asking questions. I felt really stupid having to asking them 2 & 3 times to repeat themselves. I guess until I’m activated I’m going to have a hard time understanding people! Oh well again expected that also!

the only other thing I was surprised about was the level of vertigo was almost nothing until 2 days ago I had one strong episode that was so bad it made me sick & lost my dinner ! & when I got sick I heard like a wind chime going off in my implanted ear that changed to a loud ringing that lasted about 30 seconds. The doctor said it was nothing to worry about & I should take my nausea meds. I don’t know what brought that one episode on but other than that I’ve had almost no dizziness or nausea at all. So over all I’m very happy with the way this surgery has been.

They did move my activation up to October 29th, so I’m really looking forward to getting my Rondo2 & Sonnet2. If activation goes even half as good as this experience I will be happy as can be! 

Thanks & wishing everyone the best on the journey!

I’ll post again after activation!

Rick H

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@dkritter best of luck to you tomorrow! 

Your not alone!  I know the feeling when you loss your hearing you feel like you loss part of your brain as well! 

It all starts getting coming back to you tomorrow!! 

Good luck!

Rick H

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Hi Everyone - so happy to read these success stories and happy to add another one .   I had my first CI surgery on October 4, I was soo anxious heading into the theatre but the wonderful Dr Chawla and his team at St Andrews, South Australia,  had me relaxed in minutes.  One minute they are talking about holidaying in my happy place, New Zealand, and the next I am waking up and feeling fine, tired but fine!  I do think the tiredness was self inflicted however from not sleeping the night before! 

I have had next to no pain, no discomfort and very little dizziness - day 4 was the worst, I did have waves of nausea and the 'spins' but not too bad, going down steps was definitely the worst for that.  My taste has been a little off, only on the left side, my mouth feels like it is coated with some drying agent, I am always thirsty and yet water does not taste like water, it tastes like it is coated  and not actually touching my mouth, weird I know!   Only other thing that is 'wrong' is toothpaste - it burns something chronic on the left side, rest of the mouth is ok so I am just presuming it is some kind of nerve tingle.  I had my post op follow up on 11 October and Dr Chawla was super pleased with the healing and how the op went, according to the Medel rep that was in surgery with me - it was 'textbook' - so now I just wait for activation on 21 October.

My tinnitus though has been really weird, initially on waking it was gone - I had silence which was just beautiful. Slowly though, it has returned, but it is really different, I don't understand it because it now has electronic sounding beeps, like the noises the traffic lights make when waiting to cross.  It sounds like I can electronically hear my pulse - bip, bip, bip ….. etc.    and if I bend down and straighten up, it is like a 'whoosh' noise.  I don't understand it at all, but it is what it is and if I am going mad - at least no one else can hear it!!      Perhaps I am activated already and just waiting for the speaker to be attached to translate al the bips and bops and whooshes!!     The other day I put my headphone into my troubled side to listen to some tinnitus therapy nature sounds and was pleased to hear trickling water if I turned it to max - that is great because it means I still have some residual hearing in the treated side.     I am really excited for October 21 and feeling so blessed to have had such an amazing Dr and support crew around me.    Huge thanks to you Mary Beth, I really appreciate all your support over recent months and I look forward to updating you all on my next adventure - 'When the Voices return'  - Wishing you all a day filled with sunshine and happiness x

 

 

 

 

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okay so i've had tinnitus for at least 3 decades - we live with each other and both know where we stand- however since my last hearing loss 3-14-19 I've had a bit of different tinnitus one of which is phantom music - at least something I can't recognize (before that is was xmas music Ugh). But I look at new tinnitus as a joy, something new - my normal is constant one tone, now i hear new tinnitus - its refreshing (ironically) but its new and welcome.

 

with my new implant  3 weeks old, on occasion I get super , I mean super loud T in my implant ear (not activated yet) that is so loud it's unbelievable.  as i said - any new noises up stairs are more than welcome. 

DK

 

 

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@dkritter & @Tutz67 yes I definitely notice  that tinnitus has changed since the surgery,  I noticed the same things as well beeps & rings like I have already been activated. Whenever I burp I hear a beep like something electronic & the  oscillating ringing that came on shortly after surgery has pretty much been constant but at times gets much quieter but when I really listen for it it’s still there but faint. Im only guessing of course but I’m thinking it could be that the electrodes are in the cochlea & with the swelling from the surgery & any change in pressure could be slightly pushing the electrodes against the nerve cells which we interpret as sounds, that would explain why I heard the Wind chimes & loud ringing when I got sick, & the beeps when I burp. The oscillating could be my pulse. It’s really strange . I’ve had this ringing for 20 years also but it has  definitely changed since surgery! It will be interesting to see how it changes as the swelling goes away & after activation! At any rate I could be way off but it sounds possible especially since we are all experiencing the same things.

Rick H

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Such an exciting time on HearPeers!  Wishing you all the very best.  Hoping the bad vertigo episode and the pulsatile tinnitus all go away.  

Keep us posted.  Just jump in and tell us about your journeys.  We are here.

 

buckle up.  It’s a fabulous, crazy, life changing ride.

Wishing you all the best!

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@MaryGP

hi Mary

Good luck on your upcoming decision. Sounds like you can’t go wrong with either one they both have some excellent pros. I know the feeling for travel, my center is about an hours drive but with rush hour traffic I always have to add an hour for safe measure for my appointments. But for me it’s worth it to go where I’m going to get the best outcome from my CI & the best care. One more thing you may want to consider when checking the places out I’ve heard that some centers are single processor centers & others are 2 processor centers meaning they can get you approved for 2 processors.  Wether that would be Sonnet2/Rondo2 or Sonnet2/Sonnet2, processors are expensive & having a back up if something happens to one is a major plus! If one of them is a single & the other is a two, it could be the decision maker! Just a thought!  Mine luckily was a 2 processor center. Check them out but I’m sure you’ll be great no matter what! My surgery was about 10 days ago & it was a cake walk! One of the best surgeries I’ve had, still waiting for activation. I’m just starting my journey but so far it has been great & I know the best is yet to come! 

Technology is a wonderful thing! You’ll do great!! Best of luck to you & take care! 

Rick H

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okay so i've had tinnitus for at least 3 decades - we live with each other and both know where we stand- however since my last hearing loss 3-14-19 I've had a bit of different tinnitus one of which is phantom music - at least something I can't recognize (before that is was xmas music Ugh). But I look at new tinnitus as a joy, something new - my normal is constant one tone, now i hear new tinnitus - its refreshing (ironically) but its new and welcome.

 

with my new implant  3 weeks old, on occasion I get super , I mean super loud T in my implant ear (not activated yet) that is so loud it's unbelievable.  as i said - any new noises up stairs are more than welcome. 

DK

 

Not really sure how this works but I got activated yesterday 10/14/19. interesting afternoon. First turn on - both audiologist sounded like Dora the Explorer in a fish tank. But after chatting through the sound level experiment  they kept sounding more an more natural (other than a high freq - tinsel sound) After 15 minutes both voices became more rich and natural. I'msure we've all been through the - baseball - cowboy- ice cream- protocol- I came away 100%.. What was interesting is that after a lull in the conversation - they both came back initially sounding like a fish in a bowl. So I guess there must be some muscle (i.e. brain) memory there that needs it to have it implanted!

On a down note - woke up the next day with the world spinning (not unusual but thought i was past that) not convinced it's not  related to over stimulation?? Reason for the delayed post.

 

Bottom line - super glade I did it. And as I said the the audio's maybe I'll be back for the other side - if this pans out like i think it will

 

 

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Some people end up with a BPPV episode or two after CI surgery.  Many find treatments from physical therapists helpful.  Check with your CI team first.

@dkritter

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@dkritter

sounds awesome DK

glad to hear it went so well for you! I’m about 2 weeks out for activation! Starting to get excited! Hopefully your spins will go away quickly. I think your probably right its most likely over stimulation! 

Take care & keep us posted! 

Rick H

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Hey @Tutz67!! Dr Chawla was also my surgeon, very professional, I'm very happy with his work!

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Hi everyone,

Sorry for the delayed post, but here's the update.  I have decided to go with UNC-Chapel Hill - Dr. Kevin Brown (Ok, I really want to call him Kevin Bacon, but you know, he's my surgeon).  Anyway, my surgery is Thursday December 5 (ie - 4 days from now).  I am nervous.  I hate nausea. I think I may be getting pre-nausea sympathy pains for myself haha.  

Also, I am vacillating between calling myself Jamie Summers the Bionic Woman, or a Cyborg (resistance is futile).  Anyone else deal with anxiety using humor???

Joking aside, I would appreciate your prayers for a good surgery and easy recovery.  Thank you all for your encouragement and generosity of information here.  It has made my journey so much easier.

I am still trying to decide to go with the med-el offer of 2 sonnets (as they will trade one up for the new update if I leave it in the package), or a Rondo and Sonnet -  not worrying about the upsale.  Any suggestions?

 

@Rick H - thanks for the advice - UNC is 2 processors - as noted above :).  

@Mary Beth- thanks again for the encouragement and information.  You have been a god-send.

I am now going to get a glass of wine, in case it is a month before I can enjoy it again.... that would be a crying shame...  

Mary,  the bionic woman cyborg...

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@MaryGP

Hi Mary 

thats awesome that they are a 2 processor center! I don’t think you can go wrong with what ever you decide as far as 2 Sonnets or Rondo2/Sonnet2. The important thing is having a back up processor.  I’m still waiting for my Sonnet2 so All I have right now is my Rondo2 but I have to say I’m loving it!  The sound quality is great & I like that it charges overnight & lasts all day. It’s so small & discreet & at times I don’t even know I have it on. Also we wear safety glasses at work & it’s nice not having anything on my ear. All in all the Rondo2 is a great processor & though I don’t have any experience with the Sonnet2 yet it’s supposed to be even better! 

I was nervous before my surgery too, that’s pretty normal but don’t worry, you will do great! Not that I have had a ton of surgeries but I’ve had a few & this one was  by far the easiest one with greatest benefit!!

I’ve been activated for about one month now & I’m so impressed by how well the implant is working out. I expected everything to be so different but it’s not really. I could understand speech right away, & within 2 minutes could differentiate between my wife & audiologists voices & I was able to tell what songs were playing on the radio on the way home, though that was more difficult. I turned the closed captioning off on the TV right away & was surprised that I could watch TV the next day & hear perfectly what they were saying. I’ve had so many Wow moments in one month 😁!! The big one was actually being able join in the conversations at Thanksgiving with the relatives! My coworkers & family members say I’m like a different person!  Yesterday me & my wife watched the movie Bohemian Rapsody & I was just amazed at how well the music was coming acrossed. It was about a 8 out of 10 as far as how it used to sound! I couldn’t help but think how much I love this Medel implant & how I should’ve done this years ago! I’ve only had 2 mappings & I still have a long way to go but what a journey so far! 

so its normal to be nervous,  but get excited Mary because this is going to give you back your life!! It’s that life changing! I can’t wait to hear how well you do! 

I’m praying for you,  so best of luck to you & keep us posted! 

Rick H

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@Rick H

Rick - thanks so much for your prayers and encouragement.  Great advice on getting a Rondo and waiting for the Sonnet2.  I have to wear safety glasses also, so that plays a factor.  It is encouraging to hear the positive feedback!

Thanks again!!!

Mary

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@MaryGP

I will be thinking of you on Thursday and hoping things go as easily for you as they did for me.  You may want to tell the anesthesia team about your concerns of nausea.  I did and they dealt with it on the cocktail of meds they used.  Worked splendidly.

Tough decision..... can you choose one Rondo 2 and one Sonnet.  Get activated with the Rondo 2.  Leave the Sonnet unopened.  Trade the Sonnet for a Sonnet 2.  Then you will have one of each of the newest processors.  People here have done that.

 

I love Rondo for waterwear.  It is spectacular.

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On 12/1/2019 at 8:58 PM, MaryGP said:

Hi everyone,

Sorry for the delayed post, but here's the update.  I have decided to go with UNC-Chapel Hill - Dr. Kevin Brown (Ok, I really want to call him Kevin Bacon, but you know, he's my surgeon).  Anyway, my surgery is Thursday December 5 (ie - 4 days from now).  I am nervous.  I hate nausea. I think I may be getting pre-nausea sympathy pains for myself haha.  

Also, I am vacillating between calling myself Jamie Summers the Bionic Woman, or a Cyborg (resistance is futile).  Anyone else deal with anxiety using humor???

 

I have a CI-borg t-shirt!

ciborg.jpg

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8 hours ago, Mary Featherston said:

I have a CI-borg t-shirt!

 

Wow that is the best!!

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I love that shirt!!!!! @Mary Featherston

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@MaryGP it's on CafePress if you're in the US. 

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