Life with a Cochlear Implant - Interview with Jill Rivoli and Lauren Deckard
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- čas přidán 15. 06. 2022
- Gael Hannan sits down with Jill Rivoli and Lauren Deckard to discuss their hearing loss journey, and what led them to pursue cochlear implants. They talk about their experience from before and after the initial activation, how long it took to begin recognizing sounds again, things they still struggle with and what advise they have for others who might be considering a cochlear implant.
Lauren Deckard is the founder and owner of Peak Mobility, a holistic healing center in New Jersey. During her final semester of college, Lauren unexpectedly lost her hearing and adapting took a toll on her physical and mental health while stuck in the corporate world. After being implanted with a Nucleus 7 device in her right ear, Lauren left the corporate world and started her own business in holistic healing, healing clients using the same methods she applied for her various ailments due to hearing loss.
Jill Rivoli was 9 years old when she first realized she couldn’t hear the same as everyone else. Over the next 40 years, her hearing would continue to decline, resulting in complete deafness in her right ear and profound loss in her left. Though she was fitted for hearing aids, it wasn’t until she was implanted with a cochlear implant that she was able to experience the hearing world again. Today, Jill is an assistant general manager at a historic Montana working cattle ranch. An avid hiker and horsewoman, Jill has been able to rediscover the sounds of nature-horses eating grass, crickets chirping, birds singing, water running in a stream-sounds she didn’t hear for decades.
Transcript available here: hearinghealthmatters.org/this...
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i am a total deaf individual since birth and went to deaf school and at the age of 20 i got my first implant. then 21 years later my implant broke i got it replaced and got one on the other side and became a bilateral cochlear implant user with Med El in 2023. Great Technology
How did you get it replaced?do they do the surgery again?
I suffered SSHL in my left ear in October of 2023. After much testing and, having to qualify, I am getting my CI in April of 2024. This video just justified that I have made the right decision to get a CI. I am a Nurse and it is almost impossible to perform my duties with SSHL, reactive tinnitus, and hyperacusis. I definitely connected with the participants. Feeling the same as them. I am praying that I will be able to go back to my nursing job after the surgery.
Thank you for this video!
I have been deaf in my left ear for about 10-12 years and wearing a hearing aid in my right,since 1995. My hearing loss is from a combination of working around military aircraft and head traumas. The VA suggested I might be a candidate for a CI. Well long story short my surgery date is 5 April
How is your CI working out.
I have been activated for one month, and I'm impressed with the CI. Before I got it, I really had a huge doubt, I just took the risk since I was close to deaf anyway
Thank You so much for this GREAT information, Today is exactly 6 months since my Cochlear implant procedure. I used the interview today as my Brain Training exercise but it was Great to also obtain the information from all 3 of you at the same time
Tremendous interview! Thank you! Going for my first eval for CI in a few weeks. This was extremely helpful!
This was great to help me understand more. My audiologist said it was like a robot in my ear but Minnie Mouse with Darth Vader for the first two weeks is not so bad. I thought it was forever. My hearing aid lets me hear noises but comprehending what is being said is almost nonexistent. Not knowing where the noise is coming from is very scary at times and I feel lost so much of the time. Thank you so much for all the information and now I know I’m not alone.
I couldn’t agree more - I’m deaf in my right ear - have no idea where the noise is coming from - I don’t know which door to go to when someone knocks at the door - very frustrating - been like this for 5 years now ~ they say get a cochlea implant - still thinking about it - 😎🇦🇺
Love it !!!Thank you so much to you all.Really encouraged by you guys .I started my hearing loss journey 5 years ago and today I’m surviving with my residual hearing on my right side (left one is gone) so as audiologist said you got nothing to lose (with the implant).So after this video I will go back where I left with the process.Again Great Video Thank You ,Thank You ,Thank You!!!
Thank you for providing a transcript!
of course :-) all episodes will include transcript
Thank you so much for all your life stories they were very helpful,as my implant is coming in 4 days.
Thank you, I just got activated a week ago. I have a single sided hearing loss with mild to medium loss in my other ear. So, I am bimodal. For me, the sound was like the Cylons out of the 1978 Battlestar Galactica television series. Very robotic and disharmonious. But, I was prepared for that and have done lots of rehab. So, it has improved significantly.
So how natural does your cochlear implant sound now? How long since cochlear surgery?
@@demonslayer1196 I had surgery in July 2022 and activation in August 2022. So, it’s been about 9 months since surgery and 8 months since activation. I have a 95% word recognition in my implanted ear. Sounds are very natural and balanced for me. Even music sounds normal. But, my audiologist says my results are in the top 1 one percent of her CI patients. Everyone will respond in their own way, just as with any other surgery.
So you are part frakin' toaster now? ;-)
@@curtisbme 😂
Same here with the loud cafes and restaurants and music etc. live bands are hard too.
Thank you for sharing!
Today my one month old son was diagnosed with deafness and this information has given me a lot of hope, thank you.
Lost hearing in both ears to Ménière’s disease, left first and right a few years later, fixing to get right one activated, left one took a while to get used to but it’s a lot better than not hearing anything
Thank you very much for this video and all your information. I got implanted a Cochlear Osia 2, left and right side, 3 months ago, but my doctor told already, in around 3 years I will need a CI because of problems understanding speech, like words and so on. Luckily all is covered by my health insurance. I started 40 years ago with hearing aids, 8 years ago with Baha 5, 2 years ago with Baha 6 and now Osia 2 from Cochlear. I appreciate the technology and I am thankful being allowed to hear. Thank you
How much is the cost of cochlear implant of osia 2
@@shoaiburrehman3196 I am very sorry for my late response but I was out of the country. In Germany the Osia Implant and the Osia 2 soundprozessor with the operation at the hospital cost around 12000 Euros (one side) activation included. Fully covered by health insurance.
I do not jave a hearing loss, I just wanyed to learn and understand! Thank you this was so interesting! The interwier was a really proffesjonal one.
I was activated on November 16, 2022 and am still working at recognizing the sounds I am hearing. Can you tell me what websites you used to help with that? You said one was like a game of "What's that sounds?"
im not sure if it works for the hearing people (19:03) but when there's a lot of wind I use my hand and make a bowl shape and cover my ear and it prevents wind from blowing onto my ear.
Do you think I will get my herring back on my ether side with my 2 ci
I just had my Cochlear Implant two weeks ago and I tested to see if the Kanso 2 would attach #4 magnet. Cannot feel any magnet pull. Cochlear representative said it takes several weeks for the swelling to go down. I do not feel any swelling. A paper click will not even stick. Has anyone experienced this?
Im very scared to get my surgery… will I hear music the same??? Ive basically lost all hearing, deaf in my right ear and profound loss in my left due to Ménière’s disease…but I can still hear some great tones associated with my favorite songs. Music saved my life, I would truly miss it. Thank you for this video.🤍
Wow Kelly! You sound so much like my situation. I just had cochlear implant 7 weeks ago in my right ear. Waiting for my activation. Wear hearing aid in left ear. I too am a HUGE music lover and have been totally without it for almost a year now. Have felt LOST! That is one thing I am very much hoping to get back along with being able to function as a human being again.
I also was told hearing loss was because of Menieres disease. I didn't want to do surgery, I just wanted my natural hearing back. But that wasn't going to be, so my only option was surgery. Surgery went great and I had no real pain. Unfortunately I am having balance issues from it, which not everyone will experience that. I'm working through that with exercises and hope to be back to normal soon.
Sorry, I can't tell you about listening to music again because I am also waiting very anxiously for that moment. I've needed music to fill a void in my life because I lost my husband of 43 yrs of marriage due to covid complications just about a month and a half before I lost my hearing. So losing two things very important in my life has had a huge impact.
I too was afraid of surgery because it was my very first at the age of 66. But, like I mentioned, I knew it was my only option. I hope to be able to update you on music. I have been reading about other people's success with music listening and I'm hoping to be one of them. Best of luck to you.
I think the first thing to keep in mind is that everyone’s recovery and rehab results will be unique to them. That being said, I am about a month after activation. For me, voices are normal and music has returned. A couple of things that I think influenced this outcome are my hearing loss was a little over a year ago, I had worn hearing aids for 15 years before and had built up some good habits, and I put in the rehab work.
The very best advice I have is if you have the implant develop good habits and put in the work on rehab. I wear my CI from the time I wake up until I go to bed. I average about 6.5 hours in active listening situations. This include the rehab practice sessions, streaming tv and CZcams, streaming music, going to stores, and going to restaurants. I suffered a stroke when I was 49 and learned the hard way the more effort I put into rehab, the more I got out. After a year and a half I fully recovered. That’s the exact same mindset I went into CI implantation with.
There are no guarantees in life. But, it’s a sure bet that things won’t improve if you don’t do anything. I wish you the best in your future.
@@dianeburch3642 you are strong Diane in every way imaginable. Thank you for replying and taking the time to read what was going on with my hearing loss, and also for sharing your journey with me to give me insight and hope. I want you to know that you didn’t lose your husband, he is with you forever guiding you with purest form of love. Energy can never be destroyed.
Have u tinitus
Have you tinitus at right ear
Is this cochlear implant available for 30years adult
The biggest fear for me is that you loss all hearing, no matter how little you have, in the ear that gets the CI. It’s hard to know when to cut that tether.
Hola!! les escribo desde colombia soy sordo de nacimiento (padezco de hipoacusia bilateral profunda) ya voy para un año de ser implantado y 5 meses de la activación del procesador de audio (processor 7S) de la marca COCHLEAR al comienzo fue muy duro el post operatorio (5 días) luego recibir el procesador y su activación 3 meses después la verdad en mi apreciación personal me deja con esa sensación de que escucho con mucha interferencia ( como un radio con señal con interferencia) los ruidos potentes se escuchan bien los animales también pero las voces humanas en ocasiones son inelegibles o no se escuchan bien aca en mi país más exactamente en mi ciudad natal (Bucaramanga) el otologo me asegura que esto es un proceso largo que puede durar un año o un poco más para adaptarme a la audición con implante cochlear a veces me siento defraudado por esto teniendo en cuenta la avanzada tecnología y su alto costo y aunque voy a ser implantado en el oído derecho tengo muchas dudas de si operarme o no voy a esperar a que me hagan el 3er mapeo (en julio) y veremos como me siento y qué decisión tomó , gracias por este video y la información que nos dan para entender mejor cómo escuchamos nosotros los implantados alrededor del mundo deberíamos tener un grupo en whatsApp o Telegram !! o un canal en youtube !! ah les cuento que mi ingles es A2 y mas o menos les entiendo ! pero les escribo en español pues no soy muy buen en escribir en ingles aun !!
Me i'm planning to get a cochlear implant for my right ear because i don't have eardrum on my right ear due to infection..
How expensive is it to replace the processor when needed?
Insurance should cover the replacement when the device is at “end of life”. Typically every 5 years.
for a waterproof kit will cost you around $300
did the Cochlear Implant reduce Tinnitus? I have SNHL in left ear and a candidate and wanted to know if Cochlear implant will reduce or get rid of Tinnitus?
Yes, it helps my tinnitus tremendously. Before my cochlear implant surgery, my tinnitus was loud because I lost all my hearing in my left ear. After the surgery, I can barely hear my tinnitus during the day. But at night time, it’s more apparent since I have to remove my processor.
I’m still scared of getting this I have preexisting conditions so I’m
Just nervous
My mom is getting today and is very nervous I’m praying her and you and I hope all is well 🙏🏾
I love music to much even if i only beats
I can hear on my phone if it's on speaker, but not if it's through my ear. Phones in general are miserable.
This video made me type "voice of Minnie Mouse" in the search bar
Soooo does the Minnie mouse go away or do you just get used to it?
Hi, short answer? Yes. It’ll take time, and in my case, several repeat visits with my audiologist (for retuning). I probably had 90% comprehension after the first year, but it took 3-4 years before I got the best it’s going to get. I recommend listening to any and all the music you remember (over and over, it was a great “training” aide). I “switched on” in 2005, and it’s been life changing
I on my second implant the sound gets more normal in time
Anti cochlear people slways ssy the sound is not normal it isn't at first but it sounds normal pretty soon.. First time I had implant I took did weeks to hear birds
Rest assured the doeevh will sound normal soon
My situation is I had an advanced bionics speech processor which they stopped otoduces fo then gave me a horrible body worn one. Doni had operation to have advanced bionics marvel one but I had complications and it didn't fit. So they gave me a cochlear one
I was a bit upset when I found inhad been given a different one but I think it's going to be fine. It's much neater than the marvel one.was
Lauren has the itches!
Thanks for this but WE are waiting for hair cells REGENERATION in the inner ear. All our focus and energy should go on that, to restore full and natural hearing abilities, instead of CROS, BAHA, or cochlear implants, that are just substitute, and may prevent someone to benefit from hair cells regeneration in the future (it's the case for the cochlear implant).
So you’re saying that if a patient gets a cochlear implant, they will be unable to receive hair cell regeneration therapy after the implant? That’s my biggest question.
@@carols65 how many years for this ?
For most with, the cochlear implant, there is no clarity.
Holistic healing and she lost her hearing that tracks. So if you are not a doctor dont pretend to now what you are doing
you are missing nothing without rap music. there is some good poetry in it but the "music" is all the same