Problems with load roaring sound and raspiness to voices

[KathyD]

My name is Kathleen Dufresne.  I received my implants in 2013 in the right ear, and in 2015 in the left ear.  For the first few years after receiving them my hearing was awesome.  I loved them.  But about two years ago I started experiencing a load roaring sound in my head that was soft when I first got up or when I was in a quiet place, but this roar  would increase to an unbearable level when things like the TV, running water, and other things were turned on.  Along with that , I have had a raspy sound to my voices and others voices that is very nerve racking.  It sounds like everyone is talking into a fan that is running.   Both the roar and the raspy are constant.  I have been to my audiologist and met with MedEl representives several times and have had my devices adjusted, but nothing seems to help.   If anyone of you have ever experienced either of these things, please let me know if you have found out what causes this and how it can be remedied.  I sometimes feel like taking my ads off permanently it is so depressing to have this stuff going on.  Please help me if you can.  I would  greatly appreciate it.  Thank you.

[Mary Beth]

Hi Kathleen, @KathyD

Wow that must be so frustrating.  2013 and 2015......are you still using your activation processors or have you upgraded processors?  OPUS 2, Rondo 1, Sonnet 1?  Have you replaced your processors and coils to be sure they are working correctly?

Does this roar that increases in loudness in some environments also happen if you don’t put on your processors or only with your processors on?  

I wish I had a solution for you.  If it was me, I would go to a very large CI center for a second opinion.

Obviously something is going on because this was not your experience for the first few years.  I am sorry this is happening to you.

[Mary Beth]

@KathyD

Has your CI surgeon ordered a CT scan to see the position of your electrode arrays since you have been experiencing this problem?

[KathyD]

1 hour ago, Mary Beth said:

Hi Kathleen, @KathyD

Wow that must be so frustrating.  2013 and 2015......are you still using your activation processors or have you upgraded processors?  OPUS 2, Rondo 1, Sonnet 1?  Have you replaced your processors and coils to be sure they are working correctly?

Does this roar that increases in loudness in some environments also happen if you don’t put on your processors or only with your processors on?  

I wish I had a solution for you.  If it was me, I would go to a very large CI center for a second opinion.

Obviously something is going on because this was not your experience for the first few years.  I am sorry this is happening to you.

Hi Mary Beth,

Thank you so much for replying to my imput so fast.  I really appreciate that.  My activation processors were both OPUS 2.  I got a Rondo, but I wasn't happy with that one.  I did get an upgrade on my right side, which was my first implant, and that one was a Sonnet 1, I believe.  I know this sounds stupid, but I'm not sure the coils are.  I haven't been back to my doctor or audiologist for quite some time now.  I know I need to get back with them  to try to correct this problem.  I am going to try to make an appointment with my surgeon and ask about getting a CT scan, like you suggested.  Hopefully that will help discover what is causing this problem that I am having.  I will let you know as soon as I find out if there is something to be done to correct it.  Thank you so much for your suggestion.  I had not even thought of that.  

[Mary Beth]

Good luck Kathleen @KathyD!

Keep us posted.

[KathyD]

Thank you, Mary Beth!  And I will keep you posted.   I sent an email to my surgeon yesterday requesting an appointment.  If a CT Scan helps end this horrible noise I will forever be in your debt.  Thank you so much for caring. 💗

 

[Mary Beth]

@KathyD

I am so hoping your team finds an end to this problem for you.  Wishing you the very best!

[KathyD]

Hi Mary Beth.  I just wanted to let you know that I was able to get in touch with the surgeon that did my implants and she wants to talk to me about my problems.  She mentioned something about possibly getting someone to do some testing of my implants to see if they can locate any problems.  I don't have an appointment as yet, but hope to get one soon.  I'll keep you posted as to what I find out.  Thank you so much for caring.  Take care.

Kathleen

[Mary Beth]

@KathyD

Terrific news!  Thanks for the update.  Keep us posted.  I so hope they can fix this for you.

[KathyD]

Hi Mary Beth,

I just got a call from the hospital I got my CI's from.  I have been scheduled for a CT Scan tomorrow morning.  I am praying that they get some results that will help me with my problem.  Will keep you posted.  

Kathleen Dufresne

[Mary Beth]

@KathyD

That is great news Kathleen.  I hope this helps your team figure out the problem.

[KathyD]

I'm praying it will.

[Mary Beth]

Thinking of you @KathyD

[KathyD]

 

Hi Mary Beth!  Well, had the CT Scan today, and got an email from my audiologist telling me that she is working on getting a day when a rep would be available to do an integrity testing to check the internal devices of my implants.  

[Mary Beth]

@KathyD

I am glad things are moving forward for you.  I hope  your team and the rep figure this out for you soon.

[John Strother]

Hi Kathy D. 

You are not alone. Your comments sounded very familiar. Frustrating. 

I am following you to see what this does for you. I’m glad someone made some helpful suggestions for you.

I wish you well, and I certainly have empathy for you.

John S.

[KathyD]

Hi John.  Oh Wow!  I'm sorry that you also have the same problems that I am having with my implants.  Believe me I will definitely let you know how things turn our for me.  

Kathy Dufresne

[Mary Beth]

@KathyD

Have you been able to schedule the integrity testing yet?

[KathyD]

Hi Mary,

Yes, I have an appointment with my audiologist and a MedEl representative tomorrow.   I am hoping and praying that something can be done to end this horrible time I'm going through.  I will let you know how it turns out.

Kathy

[Mary Beth]

Thinking of you @KathyD and wishing you the best!

[KathyD]

Thank you so very much, Mary Beth!!💗

[Mary Beth]

Hoping your appt went well @KathyD!

[KathyD]

Hi Mary Beth

The CT Scan  they took didn't show anything wrong with the electrodes and they found nothing wrong with my CIs.  They did some reprogramming of my implants, so I'm trying to get use to that.  They seem pretty loud to me right now, so it just may take sometime to use to it.  I have an appointment coming up with the surgeon who did my implants.  Thank you for your prayers.

Kathy

[Michael Drury]

@KathyD

I to have had the same thing. I went and seen my audiologist booked in for more tunnings.

Let me tell you what I have learnt. I understand its frus8hard at times but with this technology it's very hard to get the same sound as what we use to have. But with the more tunnings with your audiologist and always keep them up to date when I mean upto date let them know asap with what sounds aren't right what is frustrating you so they can put it down on paper with a time of this happycause they can go plug you in and go back to see hwat it was. This is what I do with my audiologist.

And I'd it's to loud turn it down to what makes you comfortable then each day turn it up a bit more everyday so your brain can adjust.

This is what iv been doing since iv been activated at its only been 8months on my left side and over a year on my right.