Melissa Posted January 10, 2020 Report Share Posted January 10, 2020 Hello, I am new here. My 10 year old son, who has a mixed loss and has worn hearing aids since he was 3 months old, is now a candidate for CI. In the past year, his speech discrimination/ word recognition scores have declined, although his audiogram has stayed pretty much the same. He started life with a moderately-severe to severe loss and now has a severe to profound loss. He has been mainstreamed since Kindergarten and is in 4th grade. He uses the Roger Inspiro at school (his aids have an integrated receiver), which is essential. His audiologist feels we should not "wait for him to fail," but pursue implants now. Our surgeon believes in doing 1 ear at a time, and we are probably looking at a late Spring surgery. So, he would be bi-modal for a while I am nervous about this transition, since I know hearing with HA and CIs is different. Also, unlike many people with implants I have spoke with (or people with severe to profound loss), my son has done extremely well with his aid. He can hear birds, water down a drain, thunder (sometimes); but really struggles to hear certain high pitched and soft sounds, and in any kind of noise. We have narrowed our choice down to Med EL and Cochlear. Like everything else in life, I realize nothing is perfect and wish I could I take things from each company and combine them. My family is a bit worried that Med El is a private company; what happens when the founders die? The thinking is that Cochlear, with the biggest market share, would be less likely to disappear and leave recipients in the lurch (not saying Med El would, it's just a risk to consider with any smaller private company.) I'd love to hear people's experiences with their implants, especially those who have used hearing aids and then switched. Thanks for reading! Melissa V (in Florida) Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted January 10, 2020 HearPeers Heroes Report Share Posted January 10, 2020 @Melissa Have you seen this yet? https://blog.medel.pro/bimodal-hearing-cochlear-implant/ @MED-EL Moderator Are you able to comment on Melissa’s concerns about the long term future of Med-El ? Med-El has a long record of commitment to our hearing. They are the only FDA approved brand that will custom design an electrode array for people with especially complicated cochleas. I believe @Jdashiell posted about a custom tool that was designed by Med-El for one of his surgeries if I am not mistaken. If you look at the Med-El website and click on their timeline you will read about how they stepped in to help people implanted with a hearing device by another company that was no longer supported. I was never concerned that Med-El would not ensure I could hear. There is so much info to sort through when choosing brands. I remember feeling very overwhelmed too. It was helpful for me to research future possibilities with the processing/electrode capabilities of the three companies. I also read about recalls. Music was important to me. I read about music experiences from CI users. In the end, I had to make a choice. I have no regrets. Listening is so easy now. We converse from separate floors. These CIs are so much better than hearing aids. In so many ways. I wish your son the very best no matter which brand you choose. Have you had an opportunity to meet some CI users in person? If you are interested, reach out to Med-El US and ask to be put in touch with the Consumer Engagement Manager for your region. My first side was implanted in Feb 2015 and activated in March. By mid-summer I was so ready to implant my second side. I do not miss hearing aids at all. Melissa 1 Quote Link to comment Share on other sites More sharing options...
Melissa Posted January 10, 2020 Author Report Share Posted January 10, 2020 Thanks for your insights. I did read the bimodal paper, and shared it with the audiologist, who agreed. Music is very important to my son, too, and I have heard many people.say they enjoy the sound with Med El. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted January 10, 2020 HearPeers Heroes Report Share Posted January 10, 2020 It sure would be a lot easier for all of us if there was some kind of crystal ball we could gaze into and see our lives post implant & adjustment to the CI! Smile 😊 Trust whatever decision you make. Embrace it and enjoy the journey. Life with CIs is amazing! @Melissa Jdashiell and Melissa 2 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted January 12, 2020 HearPeers Heroes Report Share Posted January 12, 2020 @Melissa Check this out and scroll down to Med-El’s promise https://www.medel.com/en-us/hearing-solutions/cochlear-implants/reliability Melissa 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Featherston Posted January 12, 2020 HearPeers Heroes Report Share Posted January 12, 2020 On 1/9/2020 at 8:05 PM, Mary Beth said: It sure would be a lot easier for all of us if there was some kind of crystal ball we could gaze into and see our lives post implant & adjustment to the CI! Smile 😊 Trust whatever decision you make. Embrace it and enjoy the journey. Life with CIs is amazing! @Melissa This. I had no idea how much of an impact this would have, but it's been astounding. When we first started discussing this, I was worried about coverage (I shouldn't have, my company provides excellent medical) and my husband suggested that if insurance didn't cover it, I should do it anyway and we'd find a way to pay for it. I looked at him like he was crazy, but now? Not, knowing what I know, I'd take out a second mortgage if I had to in order to get CIs. Mary Beth and Melissa 2 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Jdashiell Posted January 30, 2020 HearPeers Heroes Report Share Posted January 30, 2020 On 1/9/2020 at 8:38 PM, Melissa said: Hello, I am new here. My 10 year old son, who has a mixed loss and has worn hearing aids since he was 3 months old, is now a candidate for CI. In the past year, his speech discrimination/ word recognition scores have declined, although his audiogram has stayed pretty much the same. He started life with a moderately-severe to severe loss and now has a severe to profound loss. He has been mainstreamed since Kindergarten and is in 4th grade. He uses the Roger Inspiro at school (his aids have an integrated receiver), which is essential. His audiologist feels we should not "wait for him to fail," but pursue implants now. Our surgeon believes in doing 1 ear at a time, and we are probably looking at a late Spring surgery. So, he would be bi-modal for a while I am nervous about this transition, since I know hearing with HA and CIs is different. Also, unlike many people with implants I have spoke with (or people with severe to profound loss), my son has done extremely well with his aid. He can hear birds, water down a drain, thunder (sometimes); but really struggles to hear certain high pitched and soft sounds, and in any kind of noise. We have narrowed our choice down to Med EL and Cochlear. Like everything else in life, I realize nothing is perfect and wish I could I take things from each company and combine them. My family is a bit worried that Med El is a private company; what happens when the founders die? The thinking is that Cochlear, with the biggest market share, would be less likely to disappear and leave recipients in the lurch (not saying Med El would, it's just a risk to consider with any smaller private company.) I'd love to hear people's experiences with their implants, especially those who have used hearing aids and then switched. Thanks for reading! Melissa V (in Florida) I have no doubt the MedEl will be around long after the founders pass away. Its a bigger organization than that. I wore HAs for over 20 years as my hearing loss progressively got worse, year by year. It got to the point that my speech recognition scores were below 50%, So I became a CI candidate. I received my first (right) implant in March 2016, activation in April 2016, and wore a HA in left. I had to make adjustments to volume and Telecoil switching on two devices, but I am a tech-guy so no problem. That year was eye opening for me in my ability to hear. So much so I told my ENT I wanted the left side implanted ASAP, and we began the process again. Due to internal problems, I had to be implanted 3 times to get the left side implanted correctly on March 2018, activation in April. I cannot express well enough my decision to get bilateral CIs. My hearing loss will be with me for a lifetime, but thankfully with CIs, that journey is so much better. I cannot imagine life without CIs Although I know that all 3 companies make good products and people are happy with their decisions to to go with each one, I chose MedEl over the other companies for several reasons. 1. I found the technology of the implants AND the processors to be far superior to CA and AB. You will find little information available on CA and AB websites on their implants. The implant is extremely important considerations it is with you for a minimum of ten years (possibly a lifetime), Also the implant is MRI friendly due the magnet that the processor attaches to. No surgery is required prior to an MRI. I believe the longer, straighter implant is good because the technology fits well with my belief system. Take a look at MedEl technology page in the website where they discuss Triformance (https://www.medel.com/en-us/hearing-solutions/cochlear-implants/hear-the-difference/triformance) No other CI company offers that. The other CI companies are much more vague in that area. 2. The telecoil was important to me, and still is. I use several assisted listening devices, a couple of which require the telecoil. The Finetuner that comes with each Processor kit has the telecoil buttons build in as a main buttons. CA requires a menu to get to telecoil feature. 3. MedEl growth over the years is incredible and the advancement in technologies and products that answer many types of hearing loss is impressive. Overall MedEl is a terrific choice. Joe Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.