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Mary Beth

ADHEAR experiences

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@segoro72

This is where I will tag my friend with ADHEAR so it will be in the ADHEAR topic group.  Ok?

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4 minutes ago, Mary Beth said:

OK!

 

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I believe this is the right spot - Mary Beth!  This forum is new but my name is Nicole and I am an Adhear user - I just did my one month follow up

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Thank you @Nicole!

 

Meet @segoro72!

Will you share your ADHEAR experience  with us?

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My story 😉 I attended college to become a speech language pathologist.  My sophomore year if college during finals week I woke up unable to hear.  It was diagnosed as a cholesteatoma.  My ear was removed so they could get the tumor removed.  A year later a second cholesteatoma had formed and they removed it through the canal. Leaving me with a 40% loss in my right ear.  I compensated. I considered the Baja but did not want to risk the surgery.  Mary Beth kept me up on all the latest with Adhear knowing I would be a perfect candidate. I was able to do a meet and greet in VT with Med el and try it.  It brought me to tears.  I could hear out of my right ear immediately.  I didn’t have to turn my head, I didn’t have to read lips I could hear and localize sound. It had been 20 years.  After that I called my ENT and asked for an updated hearing exam and spoke with the audiologist.  She went through my options and of course I wanted Adhear.  She got preauthorization from my insurance and ordered the device.  I was fitted right before Christmas.  I wear it from the moment I get out of the shower until I go to sleep.  The stickers are lasting about 5 days.  I do take it off to excercise.  I share it with everyone and even keep stickers with me so people can try it.  Sticker placement is a bit tricky but if you have someone help you once you find your best spot its easy to peel off and reapply.   Old habits are hard to break but I’m learning to trust that I can now hear equally out of both sides.  I never realized I hug people on that side and that is the only time I get feedback when the device is pushed into me.  It’s a small price to pay.  Batteries are lasting about a week.  If you have any questions please ask.  I’m happy to share my experience 

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Thank you @Nicole!  I am so happy ADHEAR works so well for you.

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Thank you Nicole for sharing your experiences with us, particularly I. But I have some questions for you. So you remained 20 years without hearing aid? What has been your experiences during these 20 years? Have you known islolation? frustration in band life? Did you have some difficulties to continue your study (I hope you became a great speech language pathologist.). What changed in your life with your new hearing aid?

I ended up medical studies in my country, I am general practitioner. But I realized that better hearing was so important to me , that it became something of vital for me. That is why I do all to succeed to be in France, cause I know I could have a solution there, that I could not have I my country( that does not have more than 4 or 5 audiologist in all. And some them were unaware of bone conduction prothesis some years ago, when I exchanged with them. Now in my country, only classical prothesis are available: The famous intracana hearing aids) . Now I am doing a Master in Public health, to become biostatistician in a university of Paris. I am there since three month, and didn't still see a doctor for my hearing problems. But I hope soon.

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@segoro72

@Nicole is a terrific speech and language pathologist!  I work with her in our public school system.  Smile.

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@segoro72

My hearing story is complex but I did spend 24 years with total deafness in my right ear and progressive hearing loss in my left ear.  During that time my left ear always wore a hearing aid.

For awhile I used a BiCROS on my right ear which sent sounds from that side to my left side.

Then I stopped using the BiCROS and my right side just was a dead zone.  No ability to hear sounds from that side.

I used all of the strategies that you use everyday.  I positioned myself strategically at all times.

Now that I have two ears working again, each with its own CI, I am enjoying true binaural hearing.  It is fabulous.

 

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I am really happy for you 😊. I imagine how  could it be marvelous to refind binaural hearing (for someone who knew it😃), that i never knew in my life. Your story make me optimist. I am not expecting a perfect binaural hearing, just to could hear from both side, to enjoy the band life, to cease expensing more effort just to could hear, which tire my brain and could have drawbacks at long term.

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@segoro72

I hope you can find a way to test out ADHEAR in Paris.  Have you reached out to Med-El there yet?

@MED-EL Moderator Do you have a Med-El contact person in Paris who can arrange for an ADHEAR test?

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No I do not.

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@segoro72

I did go twenty years without a hearing aid as they were something my insurance would not cover and they would only make sounds louder which would have bothered me more than helped.  I didn’t realize until I wore the Adhear how much I was missing.  I coped and thought I did well but I missed out on a lot of sounds and conversations. I don’t believe it stopped me from doing well in life but it made situations difficult.  My close friends and family knew to stay on my left and were great when I ultimately did not hear them.  Restaurants and concerts were the worst.  Now they’re amazing as I can hear people on all sides. I researched and work with children who have hearing impairments and I’ve learned so much from Mary Beth. She’s my go to as she’s so knowledgeable and stays current on all things hearing. I hope you’re able to find a way to try Adhear I know you won’t be disappointed 

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On 1/26/2019 at 6:59 PM, Mary Beth said:

@segoro72

I hope you can find a way to test out ADHEAR in Paris.  Have you reached out to Med-El there yet?

@MED-EL Moderator Do you have a Med-El contact person in Paris who can arrange for an ADHEAR test?

Hi @segoro72

Thanks for your interest in ADHEAR. You can contact our team in Paris using the details here: https://www.medel.com/fr/contact. They will be able to let you know about the options for testing ADHEAR. 

Kind regards, 

Mary

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Merci Med-el Moderator. Je les contaterai dès que possible

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On Saturday, January 26, 2019 at 9:57 PM, Nicole said:

@segoro72

I did go twenty years without a hearing aid as they were something my insurance would not cover and they would only make sounds louder which would have bothered me more than helped.  I didn’t realize until I wore the Adhear how much I was missing.  I coped and thought I did well but I missed out on a lot of sounds and conversations. I don’t believe it stopped me from doing well in life but it made situations difficult.  My close friends and family knew to stay on my left and were great when I ultimately did not hear them.  Restaurants and concerts were the worst.  Now they’re amazing as I can hear people on all sides. I researched and work with children who have hearing impairments and I’ve learned so much from Mary Beth. She’s my go to as she’s so knowledgeable and stays current on all things hearing. I hope you’re able to find a way to try Adhear I know you won’t be disappointed 

 

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Hi Nicole. Sorry for not responding quickly to your post. I had an exam, so was very busy. Your wonderful experience with your hearing aid make very optimist. Thanks one more time for your sharing. I have to see probably an ENT before to encounter an audiologists.

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On Monday, January 28, 2019 at 10:23 AM, MED-EL Moderator said:

Hi @segoro72

Thanks for your interest in ADHEAR. You can contact our team in Paris using the details here: https://www.medel.com/fr/contact. They will be able to let you know about the options for testing ADHEAR. 

Kind regards, 

Mary

 

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Hi MED-EL Moderator.

Sorry for responding to your post in French. I didn't realize I wrote in French until many days later(lol). It is a reflex I think.

Is it possible to meet ADHEAR team without meeting an ENT before? I am planning to meet an ENT the next week. My diagnosis of single sided deafness has been done in my country, not in France yet.

Best regards!!

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Hi @segoro72

Sorry, I didn't see your comment before because you didn't tag me - writing in French is no problem: we just use google translate! 

Since France has very strict rules about contacting and marketing products to customers, I am not sure if this is possible. Of course, you are always welcome to reach out to our team in France and ask. 

Your ENT should also be able to advise you on all your options too. As I said, France is very strict about marketing of medical devices like this so going through your ENT is the best option. 

Kind regards, 

Mary

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@Nicole do you know if your experience with immediately being able to hear well with ADHEAR is typical?  My cousin is trialing ADHEAR on Monday and I'm so excited for him.  He had tried for a BAHA before but his insurance refused to pay.  This, of course, made me angry - the guy's a teacher and they won't help him hear?

I'm optimistic that he'll find ADHEAR as helpful as you did!

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@Mary Featherston

Yes!  Your brother should get a great idea of how things sound with ADHEAR immediately.  Keep us posted!

@Nicole is on vacation.  She may not see this until she returns.

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8 hours ago, Mary Featherston said:

@Nicole do you know if your experience with immediately being able to hear well with ADHEAR is typical?  My cousin is trialing ADHEAR on Monday and I'm so excited for him.  He had tried for a BAHA before but his insurance refused to pay.  This, of course, made me angry - the guy's a teacher and they won't help him hear?

I'm optimistic that he'll find ADHEAR as helpful as you did!

@Mary Featherston I believe it would be typical.  Once the sticker is in place and the device is attached it was immediate.  Of course the sound is through bone so it was a little different at first but the longer it’s on the better.  I only notice a difference now when it’s noise with vibration (the signal light in the car, the phone ringing etc) I am so happy with the results.  My audiologists said that insurances are more likely to pay for Adhear because they’ve added the headband as an option for wearing on top of the sticker.  I still have not seen a bill and I’ve had the device since before Christmas.  We decided that no matter what it was worth it.  I believe the cost is around $2100. I hope your friend is able to try it and that it is covered for him as well.  

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Thanks, @Nicole.  That's quite affordable even if his insurance stiffs him again!

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