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Frustrated CI user


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My name is Lucy and I am new to this blog. I am 57 years old and I have sudden hearing loss (right ear) in 2014. My doctors cannot find the cause of the hearing loss. I am also partially deaf (62% hearing with high frequency hearing loss) on my left ear. I initially used bi-cross hearing aid but this doesn't help at all; I can barely understand words and I cannot pick up conversations. Thus, I decided to have CI surgery last year on July 13 and my device was activated on August 17th. I am now a sonnet and rondo user that I interchangeably use.

I am writing in this blog to get feedback from Med El and all sonnet/rondo users because I am really frustrated with my CI. It's almost 8-months since my CI was activated but I still cannot understand words clearly. As soon as I put my processor, I hear whirring sound; I referred to it as miniature Cessna plane that had been accidentally implanted in my brain when I have my CI surgery. Does anybody have an experience like this? I live alone so my self therapy is the TV and using AngelSound; but nothing's helps to understand the words clearly because words are still very crackling and it sounds gibberish.

Louise from Med El adjusted my CI twice last year (never seen her again since then); my audiologist keeps tweaking and adjusting my CI but to no avail (3x this year). I NEED YOUR HELP!!!! Does any one out there had an experience like this? How long does it take before I can pick up clear words. My otologist said last week that I should have been able to hear clearer words by now! Dr. Hadley (otologist) said he will contact a Med El rep for me. Shouldn't my audiologist did this because I keep on telling her that words are still not clear? How does CI adjustment process normally go?

Coping from normally hearing everything around to suddenly turning off the sounds was very devastating. I was depressed and suicidal at one point and just now barely getting a grip of this new world of mine. My psychologist said I am not completely out of my depression yet. The last two years was a living hell that am I just starting to get away from. Please, I need your help how to deal with my hearing loss and regain the pleasure to hear as bit as normal as possible.

Lucy

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My name is Lucy and I am new to this blog. I am 57 years old and I have sudden hearing loss (right ear) in 2014. My doctors cannot find the cause of the hearing loss. I am also partially deaf (62% hearing with high frequency hearing loss) on my left ear. I initially used bi-cross hearing aid but this doesn't help at all; I can barely understand words and I cannot pick up conversations. Thus, I decided to have CI surgery last year on July 13 and my device was activated on August 17th. I am now a sonnet and rondo user that I interchangeably use.

I am writing in this blog to get feedback from Med El and all sonnet/rondo users because I am really frustrated with my CI. It's almost 8-months since my CI was activated but I still cannot understand words clearly. As soon as I put my processor, I hear whirring sound; I referred to it as miniature Cessna plane that had been accidentally implanted in my brain when I have my CI surgery. Does anybody have an experience like this? I live alone so my self therapy is the TV and using AngelSound; but nothing's helps to understand the words clearly because words are still very crackling and it sounds gibberish.

Louise from Med El adjusted my CI twice last year (never seen her again since then); my audiologist keeps tweaking and adjusting my CI but to no avail (3x this year). I NEED YOUR HELP!!!! Does any one out there had an experience like this? How long does it take before I can pick up clear words. My otologist said last week that I should have been able to hear clearer words by now! Dr. Hadley (otologist) said he will contact a Med El rep for me. Shouldn't my audiologist did this because I keep on telling her that words are still not clear? How does CI adjustment process normally go?

Coping from normally hearing everything around to suddenly turning off the sounds was very devastating. I was depressed and suicidal at one point and just now barely getting a grip of this new world of mine. My psychologist said I am not completely out of my depression yet. The last two years was a living hell that am I just starting to get away from. Please, I need your help how to deal with my hearing loss and regain the pleasure to hear as bit as normal as possible.

Lucy

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My name is Lucy and I am new to this blog. I am 57 years old and I have sudden hearing loss (right ear) in 2014. My doctors cannot find the cause of the hearing loss. I am also partially deaf (62% hearing with high frequency hearing loss) on my left ear. I initially used bi-cross hearing aid but this doesn't help at all; I can barely understand words and I cannot pick up conversations. Thus, I decided to have CI surgery last year on July 13 and my device was activated on August 17th. I am now a sonnet and rondo user that I interchangeably use.

I am writing in this blog to get feedback from Med El and all sonnet/rondo users because I am really frustrated with my CI. It's almost 8-months since my CI was activated but I still cannot understand words clearly. As soon as I put my processor, I hear whirring sound; I referred to it as miniature Cessna plane that had been accidentally implanted in my brain when I have my CI surgery. Does anybody have an experience like this? I live alone so my self therapy is the TV and using AngelSound; but nothing's helps to understand the words clearly because words are still very crackling and it sounds gibberish.

Louise from Med El adjusted my CI twice last year (never seen her again since then); my audiologist keeps tweaking and adjusting my CI but to no avail (3x this year). I NEED YOUR HELP!!!! Does any one out there had an experience like this? How long does it take before I can pick up clear words. My otologist said last week that I should have been able to hear clearer words by now! Dr. Hadley (otologist) said he will contact a Med El rep for me. Shouldn't my audiologist did this because I keep on telling her that words are still not clear? How does CI adjustment process normally go?

Coping from normally hearing everything around to suddenly turning off the sounds was very devastating. I was depressed and suicidal at one point and just now barely getting a grip of this new world of mine. My psychologist said I am not completely out of my depression yet. The last two years was a living hell that am I just starting to get away from. Please, I need your help how to deal with my hearing loss and regain the pleasure to hear as bit as normal as possible.

Lucy

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Hi Lucy, I am 63 years old and had the MED-EL SYNCHRONY Cochlear Implant System done Feb 22nd this year and activated March 23/16. I have worn Starkey blue tooth hearing aids for 25 years, my hearing depleted in my right ear to 5% total ablity and my left ear (I still were a starkey in that ear) 15% of a normal persons hearing. So my problems were not sudden but since the age in my late 30 years of age I amitted I had a problem. Rondo is the unit I ware all the time (there special of supplying both ended in August 2015) They did loan me a Sonnet for the first two months because I had the strongest magnet in the Rondo but had problems keeping it place which has improved almost daily. Sorry for long story but I have experinced everything you have and will explain now. MedEL had a rep in my surgery while the operation took place and she attended two of my appointments. I have had 9 total appointments since the March surgery. 3 with my Surgeon and 6 with my Audiologist and MedEL Rep has been in each meeting also and I have two more scheduled with same this month & again in July. But I can call anytime if things are getting better.

1) Understanding words, everyone sounded like Donald Duck to me and good not notice tones from anyone and the back round was as loud as the word after two adjustments I was hearing more tones to idea the person talking and the back round noise was becoming less. One of the things Mary ( Audiologist ) had me start doing was read out to myself daily without my hearing aid in my left ear so the implant had to focus 100% on my voice which has made a big difference for me.

2) TV, Radio, Phone & Music I gave up on those items compleaty till middle of April for the simple reason I understood nothing and the back round noise was louder than the words. what I have done since then is increase the volume of my left hearing aid using bluetooth and lowering my Rondo using my fine turner and CC on the tv which seems to improving daily now.

3) One thing I have done Lucy is not use any assecroies that came with the entire kit including the free Angle sound unit they sent me after activation. My reasoning behind this is simple, My brain with the CI implant has to learn electronic sounds that it has never heard before so trying all the other things in the kit besides the fine turner (P.S. I don't use the Fine turner for anything other than volume control on stage one) to me would frustrait me. I am not a patience person, My employees would all say its perfect or you are in trouble. I researched all three companies for many hours and reason I picked this company is their conmitment for improvement and be able to update existing products. I live in lower Michigan and my Hearing aid Doctor said you need this surgery seeing she could do no more but the same person sent me to WMU and they evaluated me and offered all three companies doing this plus 3 different surgerns and when I selected the RONDO system Mary said wonderful but she will make sure MedEL reps are with her every step because your and my system are brand new on the market and she wanted all there support. Hope this helps Lucy and if you have any questions on any items I am happy to let you know how I am doing. My wife of 45 years is just happy I hear most of what she says these days. Good Luck and yes the RONDO Forum is a little slow because not many people are on the system you & I are.

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  • HearPeers Heroes

Hello Lucy and welcome!

I'm so sorry your hearing journey has been so frustrating for you. If I was in your place I would be looking for help too.

I had a progressive hearing loss and was implanted in my right ear (which had been completely deaf for 24 years with no auditory input) in February 2015 and implanted in my left ear in October 2015. Although neither ear understood speech at activation, I have met with great success after many MAPpings and lots of auditory training. It sounds like you have had lots of MAPpings and have been working on auditory training as well.

It is not common for the Med-El CAMs (clinical account managers), who are audiologists who help our audiologists, to attend all of our mapping appointments. They will attend any time our audiologists request their assistance or any time that we, as users, request their assistance. Typically if the user wants the Med-El CAM at the appointment, the user lets their audiologist know that and the audiologist schedules the appointment with the CAM. As you can see from the previous post, the CAMs support our audiologists whenever they need that support.

I use Rondos and Sonnets. They sound different from each other to me. I'm curious if this annoying sound you are hearing happens the same way in both your Rondo and your Sonnet or does it sound different in each processor?

I have read on the Med El Cochlear Implant Discussion Group Facebook page (feel free to join that) of people who took a longer than typical time to comprehend speech. Maybe you will find some other users who can share their experiences with you in that group.

Acclimation to CIs requires MAPpings, time, aural rehab, and lots of patience.

I hope your journey gets easier soon. Wishing you the best.

Mary Beth

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Thank you both for your comments.

I have multiple MAPpings but it doesn't seem like nobody can find the right program. I do therapy reading to hear myself; at one point I sounded like a chipmunk, that got better. My voice now sounds like a droid going from a deep well. I have to use my fine tuner a lot in order to hear and understand others and filter noises as much as I can. I am getting more and more headaches lately due to the noises inside my head that I am trying my best to get used to.

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  • HearPeers Heroes

Headaches can be a sign that your map is too loud. You may want to lower your volume and communicate with your audiologist. Have you tried the CLIX app yet!

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  • HearPeers Heroes

Like Mary Beth said: a proper mapping shouldn't cause a headache.

 

Is there a possibility to change your audiologist? How experienced is your audiologist with cochlear implants?

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Hi Mary Beth,

The continuous whirring sound is what's giving me headache. My audiologist set up three programs; the 3rd set up makes it a bit soft but I will not be able to comprehend speeches even though the person is in front of me. Thus, I have to use my tuner to adjust my processor to be able to hear conversation. I've been doing this for the past two months and I am getting exhausted of the routine of switching programs during meetings and talking to people.

Hi Ivana,

My audiologist was recommended by my otologist when I got evaluated as candidate for cochlear implant. I trusted both my otologist and audiologist when I loss my hearing as my life was a total mess the past two years. If you know of an audiologist here in Honolulu that you can recommend and also an Med-El CAM here, I would really appreciate it.

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Hi Mary Beth,

The continuous whirring sound is what's giving me headache. My audiologist set up three programs; the 3rd set up makes it a bit soft but I will not be able to comprehend speeches even though the person is in front of me. Thus, I have to use my tuner to adjust my processor to be able to hear conversation. I've been doing this for the past two months and I am getting exhausted of the routine of switching programs during meetings and talking to people.

Hi Ivana,

My audiologist was recommended by my otologist when I got evaluated as candidate for cochlear implant. I trusted both my otologist and audiologist when I loss my hearing as my life was a total mess the past two years. If you know of an audiologist here in Honolulu that you can recommend and also an Med-El CAM here, I would really appreciate it.

 

Pardon me - I did not want to suspect, it was just a proposition. Neither man on Earth is the smartest and can solve all obstacles in his way.

 

Anyway, I am from Europe, so pardon me but I can not help you regarding this particular problem.:(

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Hi Lucy,

I'm sorry your map is giving you so much difficulty. I am able to remain in my primary map in all settings. Although I have maps designed for noisy settings and music, I find that I do not need to switch to them to enjoy music or hear in noisy settings. The goal is to create a map that works in many settings without the need for frequent Fine Tuner adjustments. I wish I had magic words that would solve your mapping problem. Try to jot down notes about each setting that you are in where you find yourself needing to adjust with the Fine Tuner. Then ask for a Med-El rep to attend your next mapping and bring the notes with you. Best of luck!

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My audiologist was recommended by my otologist when I got evaluated as candidate for cochlear implant. I trusted both my otologist and audiologist when I loss my hearing as my life was a total mess the past two years. If you know of an audiologist here in Honolulu that you can recommend and also an Med-El CAM here, I would really appreciate it.

Hi Lucy, I'll send you a private message with some contact info for our MED-EL representative for Honolulu!

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  • HearPeers Heroes

Erik,

 

There is one more - for locking up!

;)

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Thank you, Erik; and thank you all for your feedback.

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