HearPeers Heroes Cara Mia Posted March 12, 2017 HearPeers Heroes Report Share Posted March 12, 2017 Yes, I got two Med El synchrony implants with Sonnet processors. Implanted my R dead ear in February 2016. Then, when I understand that this completely work for my I decided to implant my left ear with some residual hearing. Have never regretted my both decissions. Mary Beth and Julesrdh 2 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 12, 2017 HearPeers Heroes Report Share Posted March 12, 2017 I will give you two links to my story. https://blog.medel.com/why-a-teacher-of-the-deaf-chose-a-med-el-cochlear-implant/ https://blog.medel.com/bilateral-cochlear-implants-mary-beths-story/ This way you will also know what I look like in case you attend that workshop. If you do, please introduce yourself to me. I would be happy to answer any questions about my journey. Julesrdh, Sherri and pjandcompany 3 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 12, 2017 HearPeers Heroes Report Share Posted March 12, 2017 Workshop info April 1st NYC http://www.handsonhearing.com/index.php/features/workshop-locations/92-new-york-ny Julesrdh 1 Quote Link to comment Share on other sites More sharing options...
Julesrdh Posted March 12, 2017 Author Report Share Posted March 12, 2017 Thank you so much for the links. I am going to sign up and def introduce myself.:) Thank you both for the wonderful encouragement ! Cara Mia and Mary Beth 2 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 12, 2017 HearPeers Heroes Report Share Posted March 12, 2017 Awesome! Let me know which session you register for and I will look for you for sure. Julesrdh 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 12, 2017 HearPeers Heroes Report Share Posted March 12, 2017 Were you able to get spots in the workshop? Julesrdh 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted March 12, 2017 HearPeers Heroes Report Share Posted March 12, 2017 Interesting... Present thoughts of professionals are to implant the ear which has deafened latest, and then try the other way around.Before this era, it was different but scientists understood that the atrophy of the cochlear nerve is crucial for the success of the rehabilitation so it us better to start with better ear inspite of other reasons.Sent from my EVA-L09 using Tapatalk Julesrdh 1 Quote Link to comment Share on other sites More sharing options...
Julesrdh Posted March 12, 2017 Author Report Share Posted March 12, 2017 I work every other Saturday, of course I am working that Saturday. I am going to work tomorrow and going to see if I can switch schedule. I'll definately let you know if I go! Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
Julesrdh Posted March 12, 2017 Author Report Share Posted March 12, 2017 Ivana ...Dr did say other ear would do much better with implant. I am hoping for the best and was looking for a positive story to help make my decision easy. Quote Link to comment Share on other sites More sharing options...
Julesrdh Posted March 16, 2017 Author Report Share Posted March 16, 2017 I cant get off on April 1 .. I will definately be looking forward to the next one. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 16, 2017 HearPeers Heroes Report Share Posted March 16, 2017 No problem. Quote Link to comment Share on other sites More sharing options...
Sherri Posted March 16, 2017 Report Share Posted March 16, 2017 Mary Beth!! I am so thankful I joined this group! I had not read your story before!!! Thank you for sharing yours and mine!! You have had quite a journey. What a great encouragement you are to so many. I do hope we can meet face to face one day. Mary Beth, Julesrdh and Cara Mia 3 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 16, 2017 HearPeers Heroes Report Share Posted March 16, 2017 Sherri, Thanks. We all have interesting pasts that have brought us to this amazing technology. I continue to be amazed each time I read another person's story. I sure do hope we meet in person one day too my friend. We really need a Med-El gathering. It would be so much fun! (International, of course) Cara Mia, Sherri and Julesrdh 3 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted March 19, 2017 HearPeers Heroes Report Share Posted March 19, 2017 Jules i started losing my hearing in my left ear in my early 20's. That ear was profound within a few years. Right around the same time I started losing in my right. It stayed borderline severe until I was 44 when it went completely. This may sound strange but I consider my worse ear better than my good ear. Ok so that made no sense. I tend to use my "bad" ear to talk on the phone or if somebody is whispering to me, more than I do the other. Both ears test pretty equally. the brain is pretty amazing. I'm believing that things will work out. Let us know how the surgery goes Julesrdh 1 Quote Link to comment Share on other sites More sharing options...
Julesrdh Posted March 21, 2017 Author Report Share Posted March 21, 2017 Thank you for sharing with me Adam. Everyone's journey gives me so much hope. I will keep you all posted. Quote Link to comment Share on other sites More sharing options...
pjandcompany Posted June 27, 2017 Report Share Posted June 27, 2017 On 3/9/2017 at 10:58 AM, Mary Beth said: It's good that your daughter heard out of that ear before becoming deaf on that side. I had a progressive loss which went from normal hearing to profound deafness over many years. Then that side was not able to be helped with even the most powerful hearing aids. So it remained deaf and unaided for 24 years before receiving a Cochlear Implant. It is an amazing ear now. I did a lot of aural rehab daily. And I got lucky that my auditory nerve and brain responded so well. I have had a sudden profound loss, 35 years unaided. The audi told me to be realistic that I probably will only gain sound perception, but no speech. When you say "it is an amazing ear now" are you saying you have good sound or good speech perception? I am trying to be realistic as well as optimistic as I proceed with my CI surgery. I just read your stories and am more encouraged than ever....thank you for sharing! Mary Beth and Julesrdh 2 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted June 28, 2017 HearPeers Heroes Report Share Posted June 28, 2017 Hi, Prior to the surgery on my right side, which was my first CI and had no hearing at all for 24 years, I was counseled to have realistic expectations based on the length of time of no hearing and the condition of my cochlea. It was anticipated that it would help me with speechreading but that it would not have speech understanding by listening alone. Thankfulky that was not the case. My right CI can hear on any phone, listen to audiobooks without any text, listen to podcasts, TV, car radio, people speaking even from another room. That is what I mean by amazing. It is so wonderful that after 6 months I stopped using the other HA and functioned just fine in life with my right CI. Then I was implanted on the left side at 8 months and life being bilateral is terrific! I spent a lot of time and energy focused on aural rehab with my right side and thankfully it responded well to it. I also work with an awesome audiologist who created great MAPs. Obviously my right CI is not what typically happens when long standing deaf ears are implanted or I would not have been counseled to have such low expectations. But our CIs can amaze us. Mine do everyday. Wishing you the best. Julesrdh and pjandcompany 2 Quote Link to comment Share on other sites More sharing options...
Julia Posted October 4, 2017 Report Share Posted October 4, 2017 Dear, All. I'm craving to get more information about Cochlear implant surgery. My little daughter is 2 now and she doesn't hear , deaf. Now I'm in tough position to make up my mind do or not to do. Please begging you to give me all details regarding this issue . 1. No one give any guarantees ? 2 What will be after surgery and during ? No one knows.. 3 How often do I have to I fix implant? 4 How does kids feels after all? 5 For how long this implant will work duration.. What if facial nerve will be detected.. please advise me, thank you. Quote Link to comment Share on other sites More sharing options...
Julia Posted October 4, 2017 Report Share Posted October 4, 2017 Thank you so much for your reply and suggestions. But I have few more questions . As for now i have 3 kids and my ex doesn't support us. And I live in place where is no such surgeons and clinics that means I have to find such money for surgery and post surgery process but it will take time and money as well. So what shall I do, because each time I have to travel 4 times a year etc.. Some problems with implant or processor again expenses and I have 2 more kids left at home. My point it will never ends after surgery?!! And the other point is its easier to explain to an adult how to behave after surgery and not easy to explain to kid age of 2! Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted October 4, 2017 HearPeers Heroes Report Share Posted October 4, 2017 Hi @Julia Deciding on whether or not to have your child who is deaf receive a cochlear implant is a big decision. I am sorry that you do not live closer to cochlear implant resources. The need for auditory verbal therapy after receiving a cochlear implant is something to consider. Are there therapists skilled in working with children with cochlear implants nearby? Each CI center follows a different schedule for the first year but most centers then go to every 6 months for kids unless there is a problem. Check into warranties and how you will obtain service or replacement parts if needed. Getting a cochlear implant does require quite a commitment on the part of parents or adult users. It is not a quick fix. I am very thankful for this technology. Getting CIs has been a terrific decision for me. I wish your daughter the best. As far as guarantees......I was not given any guarantee prior to either surgery. Julesrdh 1 Quote Link to comment Share on other sites More sharing options...
suzcohen Posted October 6, 2017 Report Share Posted October 6, 2017 My 15-year old son was born with a progressive hearing loss and was profoundly deaf by age one. We did decide cochlear implants were the right choice for our family, and he received his first implant at age 1 and second at age 4.5. Ideally, we would have implanted both sides when he was one (because it's ideal to get sound to their brains while their neural pathways are forming to interpret and make speech and oral language meaningful), but surgeons wouldn't bilaterally implant children back then. It was most gratifying to hear my teenage son share with me this year that he is so grateful that we went this route. He's an outgoing, talkative, positive kid, who plays high school basketball and lacrosse, and is able to independently navigate communication. We even let him fly home from a camp for the oral deaf by himself this year....and he was beyond proud of himself for being responsible enough to do that. While there are no guarantees, I've never met a deaf person with a cochlear implant who regrets their decision to implant. Even if your child had an unusual experience and wasn't able to access speech, the chance to hear environmental sounds (ie. know when a fire truck is coming) allows your child the independence to walk to the park alone when age appropriate. Most kids do very well with them, particularly if they work hard at aural rehab as Mary Beth mentioned. It will be important to find support for him to hear and access sounds.....many "birth to three" programs in states can connect you with a program for "oral deaf" children, which might allow you meet other families who've been in your position. I know that when my husband and I met a teen with CIs, when we were making our decision to implant our infant, it brought clarity to us. We wanted our child to be able to speak and talk to adults like this eloquent teenager did with us....we wanted to give our child the gift of sound, speech, communication and independence and his cochlear implants and lots of aural rehab have enabled that. Best of luck as you explore your options for your child. I hope you are able to connect with some local families and meet their children with CIs and see if it's the direction you want to fight for your 2-year daughter. Take Care, Suzanne hadron, Julesrdh, Mary Beth and 1 other 4 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted October 6, 2017 HearPeers Heroes Report Share Posted October 6, 2017 @suzcohen! Terrific to see you here! Thanks. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted October 6, 2017 HearPeers Heroes Report Share Posted October 6, 2017 @Julia, check out @suzcohen's post above. It's great to have parents on the forum too. Quote Link to comment Share on other sites More sharing options...
suzcohen Posted October 6, 2017 Report Share Posted October 6, 2017 Hi Mary Beth! I made it! Always great to see you too. Now I just have to figure how to navigate around! Take Care, Suzanne Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
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