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Jewel

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Hello. In 2012 I did a hearing test in the US and was advised that I need two CIs. That came as a shock. I started losing my hearing following a head injury in 1999. Got my first HA in 2009. I have been able to survive with one HA since. However I can't hear over the phone. I also have recruitment hearing. Right now I have a problem hearing if the AC in the room is loud. Would I have that problem if I have a CI? Do any of you attend large meetings, say with 20 people around a table and are you able to make out what's being said in the meeting? I am also curious as to how much it will cost for a CI plus the tests and the subsequent rehabilitation. Where I live the insurance company will not stand any of the costs for a CI so I'm here trying to figure out the costs and whether I will be able to afford it. It would mean a lot of air travel to get tested etc. 

Also did you lose your residual hearing in your implanted ear? 

Does the internal component give you headaches? 

 

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Hi @Jewel and welcome!

 

I had progressive hearing loss beginning at age 13.  By the time I was 50, one side was completely deaf and the other side wore a powerful hearing aid but had problems with loud sounds which made it very hard to function.  

I do attend meetings and hear fine now with my CIs.  There are assistive tech devices that work with our CIs that can help a lot in those situations too.

Even though my health insurance did not cover hearing aids at all, it did cover all of the tests and the CI surgeries.  CIs Fall under a different category than hearing aids for health insurance.  Thank goodness!  Be sure to ask your CI center to check things out with your insurance company.  Med El USA also has regional reps who help with insurance so you can  contact Med El and ask to be put in touch with your regional rep.

I hear fine on the phone with my CIs.  Aural rehab helped me a lot.  Check out our rehab topic for lots of great tips from many of us.

 

I did not have any hearing in my right side when it was implanted so there was absolutely no hearing to lose.  My left side had some hearing but the loss was progressive so we did not aim to preserve it.  We implanted a long array (flex 28j.  My surgery required drilling through the cochlea to insert the array and I did lose my residual hearing.  Others have had their arrays inserted through the round window in minimally invasive ways and retained residual hearing.  There are no guarantees about that.

 

The internal units do not give me headaches, ever.

 

Feel free to ask more questions.  We are a friendly bunch.  Welcome.

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Thanks Mary Beth. 

I will check whether there is a MedEl rep responsible for my country. 

I guess I also need to go to an audiologist in the US and redo my hearing test and then find a CI clinic in S Florida. 

I wish someone could give me guidance on the cost of the CI though. 

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Jewel,

 

Here is a link to the HearLife center in the Bahamas.  They may be able to give you info on cost.

http://www.hearlifeclinic.com/bs

 

I am going to tag our Med El admin, @leighf, so that she can help you get the info you need.

In the US, the insurance companies vary in the amount the CI surgery costs.  It is a complicated system and it is not possible to tell you a definite cost as it varies from one CI center to another.

 

I wish you the best on your journey and I hope you stick around HearPeers.

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Hi Jewel welcome!

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Hi @Jewel, thank you for reaching out to the HearPeers community, and it's great to hear you are considering getting an implant and joining the MED-EL Family. I have sent you a private message with various information to help support you, including contact details to put you in touch with your local MED-EL Representative. As Mary Beth said, please don't hesitate to reach out to the HearPeers community - we are all here for you during this important decision-making time! 

Kind regards,

Leigh

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Thanks guys! @leighf

@Mary Beth

@Kara of Canada

Sorry I was offline all week. I just met with an ENT surgeon locally. He said he has done a few CI surgeries; the last one being three years ago! I don't know if I ought to take a chance and use him or go to the US. Of course going to the US would be far more expensive since my local insurance won't cover it at all. Any thoughts? 

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On 11/6/2017 at 6:11 AM, leighf said:

Hi @Jewel, thank you for reaching out to the HearPeers community, and it's great to hear you are considering getting an implant and joining the MED-EL Family. I have sent you a private message with various information to help support you, including contact details to put you in touch with your local MED-EL Representative. As Mary Beth said, please don't hesitate to reach out to the HearPeers community - we are all here for you during this important decision-making time! 

Kind regards,

Leigh

Hi @leighf. I don't see any message in my inbox. Please resend. 

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@Jewel

 

I tend to be a cautious person with medical procedures.  I chose to drive 5 hours away in order to go to a large, prestigious CI center even though there were several other options closer to my home.  I realize a 5 hour drive does not compare at all with what you are facing.  My insurance also covered my CIs.

Wishing you the best with whichever option you choose.

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12 minutes ago, Mary Beth said:

@Jewel

 

I tend to be a cautious person with medical procedures.  I chose to drive 5 hours away in order to go to a large, prestigious CI center even though there were several other options closer to my home.  I realize a 5 hour drive does not compare at all with what you are facing.  My insurance also covered my CIs.

Wishing you the best with whichever option you choose

@Mary Beth

Thanks. You make some good points. I just need to get as much info as I can and then count the cost. 

Does anyone know any good CI surgeons in S. Florida? 

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I also would be very cautious about who and where. But you do whatever you need to do to be comfortable with your decision. You could look at the clinic finder on the Med el website. It maybe a place to start. Check drs ratings and go from there. Everyone has unique anatomy as well so a well versed surgeon is always best. 

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@Jewel  I think @Jdashiell , @hadron and @KittKatz may know names of well respected CI surgeons in Florida.

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@Kara of Canada has a great suggestion also.  On the Med El website you can go to Clinic Finder and select a country and find CI centers that implant Med El implants.  Further on-line searching may provide more info on the various CI surgeons at those clinics.

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@Jewel how about Miami?

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19 minutes ago, hadron said:

@Jewel how about Miami?

@hadron

Miami is good. 

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1 hour ago, Mary Beth said:

@Kara of Canada has a great suggestion also.  On the Med El website you can go to Clinic Finder and select a country and find CI centers that implant Med El implants.  Further on-line searching may provide more info on the various CI surgeons at those clinics.

@Mary Beth

@Kara of Canada

Yeah I'm gonna check out the website. Thanks again! This forum is very is useful ?

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Yes the clinic finder is good.

University of Miami has a great CI program.

Drs. Angeli, Eshragi and Telischi are highly regarded CI surgeons.

Go to the link below to learn about the program. Click on Meet the faculty to see the surgeons.

http://otolaryngology.med.miami.edu/ear-institute/ear-institute-programs/cochlear-implant-program

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12 minutes ago, hadron said:

Yes the clinic finder is good.

University of Miami has a great CI program.

Drs. Angeli, Eshragi and Telischi are highly regarded CI surgeons.

Go to the link below to learn about the program. Click on Meet the faculty to see the surgeons.

http://otolaryngology.med.miami.edu/ear-institute/ear-institute-programs/cochlear-implant-program

Woo hoo! That's awesome! That would just be one plane for me! Thanks @hadron

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Okay since Thanksgiving and Christmas are coming up I guess I will go to the US early next year and get the ball rolling for the CI. 

But I still have some questions:

1. I found out today that both my ears have pretty much the same level of hearing loss. So if I get a CI and it takes me several months to make out speech how do I manage at work? How did you guys cope? I mean it seems like I would only be using a CI with no HA in the other ear. 

2. I was planning on doing some professional exams next year. CIA as in Certified Internal Auditor. Has a 40% pass rate. When I read you guys talking about aural rehab it appears that it is very intense. Does that mean that I'd be better off putting studying for these exams and just fully focus on the aural rehab until I reach an acceptable level with the CI? 

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Hi @Jewel

There is a lot of variety in the plan our CI audiologists have us follow after activation.  Some audiologists want new CI users to only use their CI, and not their HA, for the first few months.  Other audiologists want new CI users to dedicate a certain number of hours daily with only the CI and the rest of the time use both the new CI and HA.

 

My audiologist wanted at least 2 hours daily with only the CI and the rest of the time both CI and HA.  That worked wonderfully for me and I kept extending the time that I only wore the CI only by choice.

 

I worked full time and also kept working a part time job at night while I was doing daily aural rehab.  So it just all comes down to how many demands you have on your time.  It is an amazing journey and it does take a lot of time in the beginning.

 

Everyone’s journeys are so unique it is impossible to make accurate predictions on how someone’s journey will progress ahead of time.  That can be unsettling at first because it is difficult to know what is coming and how best to plan.  My CI journey was so exciting that doing aural rehab exercises everyday was very rewarding.  Things change every day at first and it just blew my mind.  I would wake up, put my CI on and wonder what new sounds I would hear that day.  I hope your CI journey is as rewarding.

 

Just one thought.....I had restrictions on flying after surgery.  You may want to ask your CI surgeon what your restrictions for flying will be since you will be flying in for the surgery perhaps.

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Thanks for the detailed response @Mary Beth! I sure will ask the surgeon about flying. Since I will staying in a hotel everytime I come up I hope I can fly out right after the post op visit with the surgeon.

Although I have audiograms done in Jamaica I guess I will have to do one in the US to officially start the process. I hope they can do all the other tests on my first trip instead of me having to be going back and forth to the US just to do tests. So I guess the first stop will be with an audi at Uhealth as recommended by @hadronand then I take it from there. I feel anxious and excited although I'm just starting the journey. 

My local audi had recommended CIs from as far back as 2013 and now it's 2017! Talk about denial on my part! 

 

 

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@Jewel

Large CI centers in the US often have past experience with clients from other countries flying in for treatment etc.  You may want to explain your situation and see if you can be scheduled for all of the needed tests and appts at the same time.  The tests vary a bit from CI center to CI center but tend to include.....

-appt with CI surgeon

-MRI and/or CT scan

-an in depth audiological assessment by a CI audiologist

-an appt with the CI audiologist to discuss CI brand, processor choice, color/accessories choices

Prior to surgery, routine tests and exams were required to that included blood work, physical exam, etc.  For me, these had to be done no more than one month before surgery.

If you discuss all of this ahead of time, your CI center may be able to schedule things for you to reduce the number of trips needed.

 

Good luck.

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Oh and there were vaccination requirements too.

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Vaccinations? Wow!

I see that I have to fully explain everything to the person making the appointment at Uhealth so I can accomplish a lot of things on the first trip! Hopefully they can also tell me how much these tests will cost ahead of time. Gonna try to go in December. Thanks again @Mary Beth

I don't know what I'd do without this forum. 

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I had to have two vaccinations.  Here is a link to the CDC recommendations for adults with cochlear implants.

 

https://www.cdc.gov/vaccines/vpd/mening/hcp/dis-cochlear-gen.html

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