MCL Posted November 25, 2018 Report Share Posted November 25, 2018 Hi Everyone, I joined this group as I’m in the referral process of getting a CI. My hearing was perfect up until I developed mononucleosis in June 2015. From then on I developed tinnitus, bilateral vestibular loss and pretty rapidly progressive hearing loss. My hearing used to improve with steroids, but the steroids have lost their impact now. I’m complete deaf in the left ear since May 2018 and now have severe-profound hearing in my right ear until 1000Hz and then it goes to nothing. I have a Phonak Naida UP, but it just allows me to hear sounds now, not speech. I am an ER nurse on medical leave due to my rapid hearing loss. I also have three boys: 9, 5, & 3 years old who know how to take advantage of Mommy’s hearing loss. So far no fires, but they have made some smoothies and eaten a large amount of marshmallows, all because I was in the other room and they knew I couldn’t hear! In Vancouver, we can choose between MedEL and Cochlear. I am hoping to partake in the Johns Hopkins Vestibular Implant Trial, which is like a cochlear implant that also threads the semicircular canals in hopes of restoring vestibular function. They happen to be using MedEL, which is further persuading me towards choosing MedEL. I also like that the phonak roger pen and hopefully select can be used with the processors, although that part seems very confusing on the Medel website. Looking forward to learning more about MedEL. Cheers! Natalie Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted November 25, 2018 HearPeers Heroes Report Share Posted November 25, 2018 Welcome @NurseNavyNat (Canada)! First of all I must tell you that we LOVE Vancouver! So beautiful. Such a great walking city. I am sorry to hear of your hearing loss progression. I had progressive hearing loss too starting at age 13. Not a fun ride at all. All of the Med-El processors (Rondo 2, Sonnet, Rondo, OPUS2) work with the Phonak Roger System. We can most definitely use the Roger Select transmitter. I LOVE that new transmitter. It is so much better than the Roger Pen in my opinion. We just need to match the correct Roger receivers to the processor. Rondo 2 uses the Roger MyLink neckloop receiver the easiest Sonnet uses Roger 21 integrated battery cover receiver the easiest, can also use Roger X set to the CI setting for Sonnet plugged into the Sonnet FM battery cover, can also use the Roger MyLink neckloop receiver So no problem at all with easily using Roger Select. The Johns Hopkins Vestibular implant trial sounds very very interesting. Is it a multicenter trial or would you have to go there for surgery? My Med-El CIs have brought such wonderful (and easy) listening back to my life. I haven’t heard this well nor this easily in decades. They are amazing. I benefitted from lots of aural rehab. When you are ready, check out our topic on REHAB for everyone’s suggestions. I wish you the best! MCL 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Featherston Posted November 25, 2018 HearPeers Heroes Report Share Posted November 25, 2018 Hello @NurseNavyNat (Canada) - welcome! And as Mary Beth says, yes, absolutely, Roger pen and Roger Select work with Med-El. I got them in my kits, though I don't know what you'll get in Vancouver. I was only implanted this year so I haven't achieved the sound clarity yet that Mary Beth has but I'm working on it. 🙂 Best of luck in your journey! MCL 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Jewel Posted November 25, 2018 HearPeers Heroes Report Share Posted November 25, 2018 Hey there @NurseNavyNat (Canada). Welcome to Hear Peers! Sorry that you have been losing your hearing so rapidly. I started losing mine after university and then it took me 10 years to accept that I was losing my hearing and a couple more years to face the fact that cochlear implants were my only hope. It's commendable that you're being so proactive in searching for a solution to your hearing loss. I hope you get through with the clinical trial. Do you plan to do one or both ears? Roger Pen has been very helpful when I attend large meetings around a table and I have heard that the Select is far better. I use a Med-El Sonnet. Since your hearing loss has been pretty recent you may very well bounce back very quickly after you're activated. I don't think you can go wrong with Med-El. Please keep us posted about your journey. Wishing you all the best. MCL 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Megan L. Posted November 26, 2018 HearPeers Heroes Report Share Posted November 26, 2018 Welcome to the group @NurseNavyNat (Canada)!! I got my CI done at Johns Hopkins 😁 it’s been 2 years. It’s been a crazy ride and I hear the best I ever have! I lost a good amount of hearing due to childhood illness. I highly recommend Johns Hopkins their otolaryngology Department. Are you working with any doctors yet? Also, I have the Roger 21 and it’s a wonderful compact assistive listening device. However, it does drain faster than normal the battery due to it being so powerful. I have no complaints about my Med El CI 😁 I’m reminded everyday how well I chose when I listen to music and it sounds amazing!! You'll have to keep us updated on your journey! Best wishes! MCL, Mary Beth and Jewel 2 1 Quote Link to comment Share on other sites More sharing options...
Dave in Pittsburgh Posted November 27, 2018 Report Share Posted November 27, 2018 Welcome to HP this is a very informative site.We are Hear to help. I am a MEDEL CI patient in fact I am bilateral.I had mt first surgery a year a go and second surgery in March of 2018 .MEDEL customer service dept is tops very responsive toyour needs.It was a wise decision that I made. I have the the Roger 21 and love it. I have the Sonnet In fact our group is meating on Sat Sept 7 in Niagra Fall you can see it on HP heading reads MEDEL NORTH MEET UP we are planning to arrive on Fri evening September 6 leave Sun. We all have CI and on Sat evening 430-730 we are having a MEDEL REP in for show and tellThis is self pay you and yours are most welcome.Any question lets hear it I am Dave in Pittsburgh MCL and Megan L. 1 1 Quote Link to comment Share on other sites More sharing options...
MCL Posted November 27, 2018 Author Report Share Posted November 27, 2018 Thanks all!!:) I’m really glad to have found this group!! Definitely nervous about getting a CI, but it is good to know there are lots of people to bounce questions off of!!💛💛 Megan L., Mary Beth and Kara of Canada 3 Quote Link to comment Share on other sites More sharing options...
Dave in Pittsburgh Posted November 27, 2018 Report Share Posted November 27, 2018 I can well understand your feelings and nervousness ,the little bit of inconvenience you’ll experience will bring years a great hearing.I am so happy that I went bilateral I was asking the surgeon and audiologist well before I was even eligible for it MCL 1 Quote Link to comment Share on other sites More sharing options...
MCL Posted November 27, 2018 Author Report Share Posted November 27, 2018 Hi Dave, Yes, I definitely want to go bilateral. I will ask about it, but I think I’d have to probably pay out of pocket (about $45,000) for a second at a private clinic, but it’s probably cheaper than retraining to another career at this point. So, why not dive right in, right?🤷🏻♀️ N Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted November 27, 2018 HearPeers Heroes Report Share Posted November 27, 2018 @NurseNavyNat (Canada) A few people in Canada were able to receive a second CI, even though they are adults, by agreeing to participate in research at their CI center. MCL 1 Quote Link to comment Share on other sites More sharing options...
MCL Posted November 27, 2018 Author Report Share Posted November 27, 2018 9 minutes ago, Mary Beth said: @NurseNavyNat (Canada) A few people in Canada were able to receive a second CI, even though they are adults, by agreeing to participate in research at their CI center. THATis interesting and good to know!!! I will definitely add that to my list of things to ask!! Thank you!!:) Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
Dave in Pittsburgh Posted November 27, 2018 Report Share Posted November 27, 2018 Yea always ask your CI Clinic if any studies going on you always have to stat in touch with them MCL 1 Quote Link to comment Share on other sites More sharing options...
Dave in Pittsburgh Posted November 27, 2018 Report Share Posted November 27, 2018 I hit submit too soon a typo last part should read. Stay in touch with them MCL 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Matt Posted November 28, 2018 HearPeers Heroes Report Share Posted November 28, 2018 Hi Natalie, I'm another Vancouver fan - have been a few times and love it and the people. Good to see a fellow nurse on the forum as well. Matt MCL 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted November 28, 2018 HearPeers Heroes Report Share Posted November 28, 2018 Well hello @Matt! Been on any fun adventures lately? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Matt Posted November 28, 2018 HearPeers Heroes Report Share Posted November 28, 2018 5 minutes ago, Mary Beth said: Well hello @Matt! Been on any fun adventures lately? Hey Mary Beth, I was back in Europe this year and went to Bulgaria and Romania - both were great. I also dropped by the factory again but due to some mixed communication I missed meeting some of the team that built my implant. I'm heading back next year and plan to visit Sardinia and Corsica - and visit several bike events. Hope you are well? Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted November 28, 2018 HearPeers Heroes Report Share Posted November 28, 2018 I am well @Matt. It’s always great to see you here. Your travels sound so exciting! Enjoy! Matt 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Kara of Canada Posted December 11, 2018 HearPeers Heroes Report Share Posted December 11, 2018 On 11/26/2018 at 8:11 PM, NurseNavyNat (Canada) said: THATis interesting and good to know!!! I will definitely add that to my list of things to ask!! Thank you!!:) Yes that’s me. Since health care here is provincial you would have to go with that first for sure. Quote Link to comment Share on other sites More sharing options...
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