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I've run out of P's


Heywayne
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Recap:  Meniere's wiped out last good ear in March, Repeated steroids failed to recover permanent hearing and the Cochlear implant was the only option to re-enter the hearing world..  Implanted on July 17th, activated on August 1st with the Rondo and the Sonnet.  It's been nearly 4 months of chasing the proverbial carrot on a stick. I still cannot watch TV other than CC and that is stressful on scripted shows and damn near impossible on live shows of any type. Music is nothing but thumping for the most part with no detection of words or melodies. I've had the processors replaced on both the Rondo and the Sonnet and the Quattro because of suspected malfunctions.  I've had a second surgery to repair a hole in the eardrum after the initial implant, cause uncertain.  My audi has tried tweaking the program at least 6 times so far and it will sound better in her office at the time but usually deteriorates by the time I get home. Usually I have at least one other program setting to try 

Present: I'm only somewhat "hearing functional" in a quiet, one-on-one setting. At least my wife and I can communicate without the portable white boards we used during the total deaf stage. Multiples of people, or any recreational or shopping environment pretty much puts me on the sidelines of life. Communicating with doctor's offices, commercial businesses, servers, cashiers or clerks is way too challenging way too often.  Sometimes I just nod and hope I get what I wanted.  The sounds that I hear in any setting vary on a hour to hour basis, to being muddled, echoed (sometimes booming), raspy, tinny, and sometimes almost usable. I never know which unsavory characteristic(s) is/are going to rear it's ugly head on rising or after lunch or after supper or just reading or working/playing on the computers.  Extended exposure to family or friends gatherings wears me down physically and mentally and dramatically deteriorates the clarity of the sounds associated with the event. The audi has "suggested" that maybe the Meniere's is at the root of the problem but no suggestions as to what to do about it.  Her advice from our last visit was to keep doing the exercises from the paper handouts she provided which seem way to easy and unproductive for my current challenges.

Another challenge is kitchen noises.  When my wife is doing anything in the kitchen, it sounds like she's doing a total demolition with crowbars and jackhammers. It is so painful at times that I remove my processor until the destruction is complete.  This may be what they call "recruitment" or "hyperacusis".  I experienced some of this prior to the Meniere's and subsequent implant but nowhere near the decibel level that it is now.

And finally, just to complement the frustrations of the hearing problems, I hear this "ghost" sound with or without the processors like someone singing or chanting.  I describe it as Tennessee Ernie Ford attempting to sing opera.  

Conclusion: I don't think some of the issues I'm having are usual and customary and I'm not seeing any real progress on addressing them and I'm losing my patience, perseverance, and urge to practice. Anyone out there have any similar complaints or suggestions???

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Hi Heywayne, thank you for reaching out to the community on HearPeers. I'm sorry to hear you're going through a tough time  the rehabilitation process can be full of anticipation and learning curves. I strongly recommend speaking with your local MED-EL Representative for further support and assistance. I have sent you a private message with their contact details.

Additionally, you might be interested in checking out the MED-EL Blog which offers different tips and tricks for hearing rehabilitation, and shares experiences of other recipients.  Yelena, (aka HearPeers user Cara Mia) recently shared her tips on helpful resources for building listening skills: http://www.medel.com/blog/the-best-cochlear-implant-rehabilitation-listening-resources/

One tip from Yelena is the Speech Comprehension Training System. You can practice your listening skills in different environments by listening to the speech and entering what you think you heard. As your skills improve, the background noise level gets louder.  http://www.sensesynergy.com/readmyquips

Hope this helps!

Kind regards, Leigh

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  • HearPeers Heroes

Hey Wayne! We all have our ups and downs. I know that you are frustrated and P'd-off. But remember results from an implant is not always what we expect. I sure hope things in the future improve for you. Please keep in close contact with your Audi  he/she is the best tool for us to help with our journey. Take care . 

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  • 2 months later...
  • HearPeers Heroes

Heywayne,

i really am hoping things have improved since your last post. Meniers can be a pain in the neck for sure.  I remember that the high pitches almost hurt. Taking dishes out of the dishwasher was terrible and putting the silverware away was almost unbearable. We ended up turning off electrode #12 (high pitches) for a little while. Once things were more settled, we turned 12 back on but at a low setting and gradually turned it it up. 

You have some months under your belt by this time. I hope you followed Leigh's advice. If still having issues, I would take VERY detailed notes of what things sound like, the environment you are in..high ceilings, all metal, echo, tin sounding, male female ect. This can really help nail down a good map. If things have not really improved, maybe request a Medel rep to attend a mapping to try and sort things out. 

I am hoping by the posting of this message that things are much better. Please let us know

Adam

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