georgewes Posted March 15, 2019 Report Share Posted March 15, 2019 The failure that I experienced is very depressing and I need any advice or whatever information anyone can add that might be of help. https://cihorrorstory.com/ Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 16, 2019 HearPeers Heroes Report Share Posted March 16, 2019 @georgewes I am sorry your experience with your cochlear implant surgery and activation was so terrible. I am not sure which CI brand you have implanted but all CI brands have reps who we can contact for help. If you have not contacted your brand’s rep yet you may wish to do so. @Jdashiell has shared his experience here with complications from his second side’s CI surgery. In the end he found an experienced CI surgeon at a different CI center who reached out to Med-El to have a special item made to assist with his surgery. Going to a different CI surgeon may not be an option for you, but in case it is I mention Joe’s journey. Wishing you the best. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Jdashiell Posted March 16, 2019 HearPeers Heroes Report Share Posted March 16, 2019 Thanks @Mary Beth i hope my journey offers others a better outlook and improved performance. I recently met a woman who had a similar experience and switched ENT/surgeons and finally received success. The moral of the story is never give up! Joe Mary Beth and Mary Featherston 2 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 16, 2019 HearPeers Heroes Report Share Posted March 16, 2019 @Nikki has shared her experience here too and I am so happy that both @Nikki and @Jdashiell have ended up with great results. Jdashiell 1 Quote Link to comment Share on other sites More sharing options...
Hila Posted March 17, 2019 Report Share Posted March 17, 2019 @georgewes. Hi I've been through something very similar I know what you're talking about when I read roaring engine. This almost brings me to tears and there is a lot of anger associated with all this. My failed surgery was March 26 2016 but no one told me it failed. I had to go through almost a year of crappy hearing, magnetic fields noise in my head, headaches and trust me I know how depressing it can be. A friend here encouraged me to seek second opinion. My advice to you I don't know if it's ok to put a name of a surgeon but I ended up in the hands of the first surgeon who did medEl in the east coast of the United states. He has done many CI revision surgeries. Although the team didn't promise it can be better, he told me he can make it work the way it should and he certainly did. On January 14 2018 I was activated with my new CI. They turned it on and I could hear. Period. I could hear and recognize speech, music, everything is as good as can be. This surgeon said all the electrodes went in and he didn't have any problem inserting all of them and gave me imaging to take home with me frome surgery so I DO THINK the positioning of the electrodes is crucial for success and yes some surgeons do what other can't. Sorry but this is a backed up fact in my case. Despite my horror experience, mt second was a success and then it got to the point it was time ri decided about my other ear and I knew I'd only go with that surgeon I can trust and my left ear was activated short 4 or 5 months ago and I could understand speech right away on that one too. So now in have 2 CIs and my life is way better than it was before CIs and I actually am proud of my CIs and even like them which i couldn't say for my first one. Definitely don't give up. There's hope. It CAN get better. Mary Featherston, Jenni and Mary Beth 3 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 17, 2019 HearPeers Heroes Report Share Posted March 17, 2019 @Nikki Your CI journey had a most unfortunate start. I am sorry that happened to you. It makes me smile every time you mention how much you love your CIs now. And you are playing guitar! So cool! We need highly skilled CI surgeons who can deal with complicated cochleas. We also need a highly effective CI team when things are not going as expected. We need our CI team to investigate the issue, explain the situation to us, discuss options, reach out to Med-El surgical support & engineers when needed. This level of competency and support is not available in all CI centers. Unfortunately it is difficult to know this info prior to surgery. Hila 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Jdashiell Posted March 17, 2019 HearPeers Heroes Report Share Posted March 17, 2019 (edited) 5 hours ago, Nikki said: I DO THINK the positioning of the electrodes is crucial for success and yes some surgeons do what other can't. Absolutely true electrode positioning matters. Every cochlea is unique in size and shape. And there are also anatomical issues that can occur beyond the dimensions of the cochlea. MedEl has created an amazing array of implants to address size and shape and work with surgeons to create tools to aid implant surgery. @Nikki and I went through our initial CI surgeries together- me in Miami, Nikki in VA / NC. We communicated via email. My initial CI implant surgery (R) went fine and activation perfect. What I heard at first was robotic. Cartoon like for a week or two. But as I worked on it I began to hear clearly. nikki unfortunately did not have the same experience. One year after my first surgery I started my second CI surgery in March 2017. Surgeon said surgery went fine. Activation revealed 5 of 12 electrodes went in. Everyone was surprised sadly though. We decided to redo the surgery June 1. Again surgeon indicated ok. Activation revealed 6 of 12 electrodes went in cochlea. I was told I may have to live with this situation. I was shocked that this was it. Actually I was pissed off. I felt unhappy and decided to get another opinion. I went to the university of Miami which is a research and teaching center. I met with another surgeon whom I heard speak at conference on CIs i asked him to research my problem and he did so amazingly well my first meeting with him. End result in March 2018 my third surgery went well- quite well. My Dr. Told me during implant surgery he confirmed that all 12 electrodes were in! Happy 😃 happy happy!! Activation went fantastic having the bad implant in and wearing a processor on that side helped by preparing my brain to hear via CI, albeit poorly. I knew that what Nikki was experiencing. I think I can speak for her when I say stick with it, never give up on hearing again! get a second opinion. Edited March 17, 2019 by Jdashiell Jenni and Hila 2 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 17, 2019 HearPeers Heroes Report Share Posted March 17, 2019 And get imaging during (like my surgeons did) or after surgery to show actual placement of the electrode array. Med-El’s OTOPLAN preoperative planning for our surgeons should help with these issues. It takes your preoperative images, creates a 3-D version of your unique cochlea and helps the surgeon select the most appropriate electrode array for your individual cochlea. I saw OTOPLAN at Med-El Innsbruck and we looked at the 3-D version of a cochlea and the way OTOPLAN helps select the electrode array. Wild stuff! Amazing. Med-El also recently used their specialized robot for an individualized surgery! So amazing. Jdashiell and Jenni 2 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 17, 2019 HearPeers Heroes Report Share Posted March 17, 2019 Link to the robot HEARO https://blog.medel.pro/hearo-robotic-cochlear-implant-vedat-topsakal-paul-van-de-heyning/ Jdashiell 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 17, 2019 HearPeers Heroes Report Share Posted March 17, 2019 Link to OTOPLAN https://blog.medel.pro/individualized-cochlear-implants-paul-van-de-heyning/ Jdashiell 1 Quote Link to comment Share on other sites More sharing options...
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