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Shaun

NEWLY IMPLANTED

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Hi all - my name is Shaun. I’m a 56 yr old, progressive bilateral loss, severe tinnitus, at around 20% recognition before implant, right side implant with flex 24 on 1/21. Going with the Rondo 2 processor. 

Thought it might nice to get some other perspective first hand. Thoughts, tips, reflections - I’m just trying to come to grips with the change.

thanks

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Hi @Shaun - I'm similar to you, my hearing loss has been getting progressively worse all my life.  I received my first implant last April and went from 19% recognition to 89%.

I had the second ear implanted in October and am still working through aural rehab on that.

I'll be interested to hear how your activation goes - when I received my Rondo2s, we just transferred the Sonnet maps.  The sound is fine, but the Rondo2 is MUCH MUCH louder.  You will have a different experience since you will have your initial map based on what you hear in the Rondo2.

But in general, just be patient.  This is a process.  It's quite rare to have good sound quality at activation.  You may be able to understand words but it's not going to sound good.  Work on your rehab - use the apps available (there is a spot in the forum here listing them), listen to captioned TV, listen to audiobooks and read along.  If you use your CI at work it will help a lot, just talking to people helps train your brain.  You'll get there!  It's a fascinating process and a wonderful result for most of us.

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Thanks Mary - I wore hearing aides for about 6-7 years prior so I’m still using my left one to mitigate what appears to be complete loss on the implant side. It’s disconserting how sudden deafness of one side can throw you off. Even the little bit that I had.

The vertigo is pretty bad and I’m having some pst-surgical drainage from my right nostril when I stand up. All to be expected I guess. 

I work at a cancer hospital so I can’t go back until I’m functional so as not to be a liability. I have some concerns about functioning efficiently at work and hope that all will work out.

thanks again and best of luck on the rehab

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@Shaun

Congratulations on your CI.  You are about to start an incredible journey.  I wish you the best!

You may want to talk to your CI surgeon about your vertigo and drainage.  Always best to let the doctor know these things.

Rondo 2 is a sleek processor.

Everyone’s CI journey is unique and we all experience different hearing at activation.  But activation is only our starting points and in no way refelects how we will hear with our CI.  I started off with static and beeps o;my right side and quiet marimba on my left side.  Smile.  And I hear wonderfully with my CIs.  Aural rehab helped me a lot.  I agree with @Mary Featherston.  Check out our topic on rehab for great suggestions.

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Congratulations on your CI you are going to embark on an interesting journey. I can’t give you any advice on Rondo I have the Sonnets.I am bilateral. I had my first operation in Oct 2016 and the second March 2018. Every operation is different I had no problems with either one pice of cake.As far as the vertigo goes you should get in touch with your CI center and I am sure a medical person will guide you.

Aural rehab is very important every successful CI patient will tell how important. This is an excellent forum check regularly and let us know how you are doing and if you have any questions we are here to help. I don’t know what part of the country you live but go to MedEL Facebook to find when and where there is a Medel meet up or mingle or you can call Med El and they can get you in. Touch with aMEDEL Customer Rep these are very informative.I go to everyone 

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Hi Monte and Dave,I'm a recent implantee,unilateral,left side. Jan15th. l chose med el..l envy you folks who were candidates for bi lateral CI ! Im still hoping that in the future something will allow me to try CI in my rt,ear! Good luck to you both.My processor hasn't been turned on yet,but l see Dr.Pillsbury at UNC in Chapel Hill,N.C. this coming Monday for my post-op check.

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congratulations 🎉🎊 best of luck you are about to embark on a new journey.This will take time and patience,Audio rehab is very important.Keepus in the loop as to your rehab and let us know how you are doing and if there any questions don’t hesitate to ask.

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Check in with MEDEL to see if and there’s any Mingle or Meet up in your area,they are very helpful and informative I go to them all the time.

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7 hours ago, Dave in Pittsburgh said:

Check in with MEDEL to see if and there’s any Mingle or Meet up in your area,they are very helpful and informative I go to them all the time.

What is the easiest way to contact med-el about this? I've been meaning to see if there's a Perth group. I'm not on Facebook.

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I see that you are in Australia since you are not on Facebook book as I am not I would call MEDEL or if you know your local MED EL customer engagement Rep and know their email they will send a  notice when one is being held in you area.The MEDEL customer service person at the 800 number may be a starting point.

If you received a red binder there may be an customer service person at MED EL to email directly .Happy hunting if I can be of any help just let me know.We all are in this together.

Please let me know your outcome 

 

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@Kylie

There is a website for Med-El Australia too.

https://www.medel.com/au/contact

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Hi Shaun! I get my first surgery on Monday Feb 5th for my right ear. How was your surgery? Have you been activated yet? How did it go? I'm curious how your experience has been since you are just a couple weeks ahead of me.

 

Cheers,

Monte

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Hi @Monte

I’ll be two weeks implanted on Monday. Not turned on until the 20th, with acoustic mapping a week later. I’ve had my first follow up with the surgeon, he seemed pleased with everything so far.

Personally - well, I have some tongue neuropathy and taste disturbance on the implant side. An unexpected biproduct I’m afraid. My surgeons response was less than promising when I asked him how long this could go on. He suggested that it was better than facial hemiparalysis, as the two nerves apparently were quite close in proximity (facial n.viii and ix ?). A point I could not argue with. Also, “complete” electrode insertion was achieved in spite of round window that was not “favorable,” a reference to the angle of the window. This made the procedure more difficult I guess and can sometimes portent greater loss of “usable” residual hearing in that ear (greater damage to the hair cells?). He seemed hopeful of some residual and possibly for the use of a hybrid. We’ll see...er......hear. All I know is it feels like the worst case of swimmers ear I’ve ever had with a confirmed middle ear full of fluids. Thank god for closed caption. 

I’ll admit that the short term isolation and discomfort have led me to wonder what I’ve gotten myself into. I continue to read stories of others who have been where I am now, for the sake of a little objectivity.  I’m not one for social media but have been compelled to reach out to others like the HP’s site for this reason. 

The good news is the bouts of vertigo and nausea have subsided significantly and the constant headache isn’t quite constant. The first week kind of sucked to be honest, but I’m feeling a lot better now. Thankfully my sense of balance seems intact. I’m a very active person and was forbidden from any physical activity for two weeks post procedure for obvious reasons. I’m sure once I can get some exercise I’ll feel better about the whole thing (1more day😬).  Hope this wasn’t TMI, just reporting it the way it is for me.

I wish you the best of all circumstances on the 5th. May your round window be “favorable”.

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Thanks Shaun. Sorry to "hear" about your issues. You "sound" like the type if guy who will fight through your problems and do what it takes. (I hadn't realized how many hearing related idioms we use. 😂 Anyway, I wish you a speedy recovery and best possible outcome. 

My right ear is 100% dead, so I've got nothing to lose. Surgery is in about 24 hours. 

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@Shaun

I am sorry your recovery was so difficult.  I am glad you are feeling much better.  The fun begins at activation.  It is just your starting point but so much changes so fast.

I LOL at your line.....”may your round window be favorable”!  

Neither of my round windows were “favorable” since my otosclerosis had ossified them. So my surgeons drilled through my cochleas to insert the electrode arrays. (Cochleostomy)

This was not a big surprise because of the way my cochleas looked on the pre-operative MRI images.

I did not have residual hearing that fell into the EAS guidelines prior to surgery so EAS was never an option for me.

I hope you find EAS helpful but if it doesn’t work for you, know that full CI input can provide amazing hearing- even for music. Everyone’s journey will be unique.  It is my belief that we will never know the best listening we can enjoy with our CIs until we train our brains.  Check out our topic called REHAB.

 

Keep sharing.  We are a friendly group.

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@Mary Beth wow, they had to drill into your cochlea?  I don't think I'd heard you say that before. 

@Shaun - please don't worry too much, it's far too early.  My residual hearing is gone since my second surgery (the first one was on an ear that was already long gone) and it occasionally freaks me out a bit that I can't hear at all without the processors.  But with them?  It's so much better than before.  I kept trying to cope for far, far longer than I should.  I wish I'd been implanted at least five years ago.  Feelings of weirdness about total deafness - yes.  Regret?  Not in the least.  I love this.   (And by the way, the anatomy in my ears was completely normal so there were no issues getting the electrode array in the cochlea.  Given how poor my hearing was for the last several years I suspect the cilia were fragile.)

Best of luck to you with activation!  Then, as Mary Beth says, the fun begins.  The first few weeks, things change a lot, and then you will find yourself able to hear.  And then over time the sound quality improves.  Get yourself some audiobooks, watch TV with the captions and the sound on, listen to music, use the apps.  Here it comes.  🙂

@Monte - tomorrow's your big day!  Good luck and if you have any issues with nausea when you receive general anesthesia, tell them that, they can counteract it.  I learned that one.  😄

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@Mary Featherston

yes cochleostomy on both sides 

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24 minutes ago, Mary Beth said:

@Mary Featherston

yes cochleostomy on both sides 

And clearly successful!  I love living in a time when science can restore our hearing like this.

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@Mary Featherston

It is so amazing!

I value data and scientific studies.  There are reasons they report best results with round window insertions, limited time of deafness in that ear, etc.

BUT I am proof that sometimes things turn out way better than science predicts.

Drilling required to insert the electrode array and further drilling required to access a path to insert the electrode in an ear that had not processed ANY sound at all for the past 24 years.  AMAZING listening results with my CI.

There are many people like me who end up with significantly better listening results than science would predict.  There is still a lot to learn about  CIs.

My friend, Sheila, is another person who has way better results than science would predict.  She shared her story at Med-El and was filmed.  I will post a link.

Amazing time to become deaf.  So very thankful to the people who came before us and helped researchers and engineers design such amazing technology.

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Wow, @Mary Beth - Sheila's is quite a story.

 

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@Mary Featherston

Yes @Sheila Vieira has a wonderful CI story and she is an amazing woman.  

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So, I didn't turn the sound on, @Mary Beth but it didn't look to me as though she was speaking English.  I took both Spanish and Portuguese but given @Sheila Vieira 's surname  I'll guess Portuguese?  

In any case yes, great story!

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Good guess!  Sheila does speak English very well  but her native language is Portuguese and she was filmed telling her CI story in Portuguese.

@Mary Featherston

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Hey Shaun, I just wanted to reach out. How is it going? Are you healing up ok?

Its been 48 hours for me since my surgery. So far so good. I'm off pain meds now, but it still hurts a bit. I figure some pain is a good thing. It will keep me from doing something stupid. I sure miss exercising! Just counting the days until activation now.

Anyway, hope things are going well.

Cheers,

Monte

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