Marga Posted August 9, 2015 Report Share Posted August 9, 2015 Hello, I am totally new to this forum. I dont have an IC yet, but probably it will happen this year. I have hearing loss since i am 20 years old. I have been deaf for almost three years, but after two surgeries I got a little bit of hearing back. I am 51 year and live in the USA but originally I am from the Netherlands. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 9, 2015 HearPeers Heroes Report Share Posted August 9, 2015 Welcome Marga, I received my first CI in February. I love it. Feel free to ask any questions and someone will jump in and answer. Mary Beth Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted August 9, 2015 HearPeers Heroes Report Share Posted August 9, 2015 Welcome to hearpeers Marga I have 2 CI and have had them for almost 4 years. Please feel free to ask as many questions as you want. I would be glad to share anything about my hearing journey Adam Quote Link to comment Share on other sites More sharing options...
Marga Posted August 9, 2015 Author Report Share Posted August 9, 2015 Thanks so much for welcoming Mary Beth and Adam. Probably I will have a lot of questions. I am so glad to read so many positive stories. Marga Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted August 9, 2015 HearPeers Heroes Report Share Posted August 9, 2015 Ask away We look forward to getting to know you Quote Link to comment Share on other sites More sharing options...
Marga Posted August 9, 2015 Author Report Share Posted August 9, 2015 On this moment I dont have so much to tell. Next week I have a appointment with the hearing doctor. I hope that everything will go soomtly and well. Also with the insurence company. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted August 9, 2015 HearPeers Heroes Report Share Posted August 9, 2015 Is this appointment your CI evaluation or have you already know you are a candidate? Quote Link to comment Share on other sites More sharing options...
Marga Posted August 9, 2015 Author Report Share Posted August 9, 2015 This appointment is for the evaluation. I already had done the hearingtest: right ear 24% and left ear 30%. What will happen next? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 9, 2015 HearPeers Heroes Report Share Posted August 9, 2015 Marga, Every center has their own way. At my center it went like this: Appt with CI ENT MRI long audiological assessment to qualify for CI Appt with CI ENT to discuss results and surgery audiological appt to discuss processor options Vaccines Surgery Quote Link to comment Share on other sites More sharing options...
Marga Posted August 9, 2015 Author Report Share Posted August 9, 2015 Thanks Mary Beth, I will have more information afther I have spoken to the doctor this week. By the way, what do you mean with: app with CI ENT? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 9, 2015 HearPeers Heroes Report Share Posted August 9, 2015 Sorry appointment with my cochlear implant ear, nose and throat doctor Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted August 10, 2015 HearPeers Heroes Report Share Posted August 10, 2015 Mine was similar. I had an appointment with my audiologist after a dramatic drop in my hearing ear. I had to go see my ENT/ surgeon that afternoon. He put me on high dose of steroids for 1 week in hopes of some hearing coming back. Went back to see ENT. No improvement in hearing so we scheduled the CI evaluation for 2months later in January. Testing lasted all day. Mainly hearing. They already had plenty of Recent MRIs and CT scans so I did not have to worry about that. They talk to you to make sure you will put in the work after you get activated and also want to make sure your expectations are not too high. Some require vaccination, mine did not. Once you are deemed a viable candidate, they will talk to you about the process and the implants that are available. They will get them out so you can see them hold them ask questions. You don't have to make a decision right then as far as what company. They will discuss a possible surgery date. Usually the surgery is outpatient. You will get there in the morning, have the surgery and usually leave that afternoon with a pressure bandage on your ear. This usually comes off the next day. Some clinics keep it on a little longer. I also ENT the night in the hospital. They wanted to keep an eye on me because I have a rough medical history. Activation when they turn on the il ant is usually 2 to 4 weeks after surgery. They made me wait 6. Quote Link to comment Share on other sites More sharing options...
Marga Posted August 10, 2015 Author Report Share Posted August 10, 2015 Thanks for all the information. The audiologist told me the same story. He already showed me the implants. I am not sure if I will get the MRI since I don't know exactly what kind of prothese I have right now in both of my ears.(surgery otosclerosis) My expectations are not too high, but after reading your stories I have a better idea. How much better is your hearing right now? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 10, 2015 HearPeers Heroes Report Share Posted August 10, 2015 Marga, My hearing went from profound with a 0% speech discrimination word score to 60% at my 3 month evaluation. The change is huge. I can hear very with my CI. However, at activation all I heard were beeps and static. So having low expectations for turn on day is very important. I went in hoping to hear 12 distinct beeps- one for each electrode pair. Then I started training my ear- which is really allowing your auditory nerve to settle in to the stimulation and training your brain to understand the sounds. I also had otosclerosis and several failed stapendectomy surgeries in that ear in the past. Wishing you much success. Mary Beth Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted August 10, 2015 HearPeers Heroes Report Share Posted August 10, 2015 Marga, the hearing in my left ear dropped to profound level 95 dB after 5 surgeries due to a perilymph fistula. Then in 2009 I had to have a labrynthectomy in that ear. It destroyed every bit of residual hearing I had left. My right ear was more of a gradual loss but after the sudden loss in 2010 I really could hear sounds. I really just felt the bone vibrating because she had it so high. I went almost a year completely silent. One of the last tests I had in the booth my single word or phonemes scored 87%. I'll take that over zero any day. The really neat thing about it was that I was still made tiny improvements even 2 years later. I had read that usually after a year, whatever you have is gonna be it. That isn't always the case. Early on all I did was practice constantly. My goal for after activation was that if they could help me be not so exhausted at the end of the day from lip reading, it was a win. Both activations were totally different. After the first one, friends and family sounded the most normal. Echo sounding or real tiny. Others sounded like cartoon characters but there were a lot of people, especially if I met you for the first time just sounded like white noise or static on your TV. I remember hearing birds for the first time the afternoon of my first activation. I was standing under a tree, nobody else around except for a bunch of birds in the tree. It sounded like a big buzz like when flies would fly into those electric fly killers when we were young. I finally realized that buzzing was birds. My first thought was, man that sounds annoying. My second thought was HOLY COW! I haven't heard a bird chirp in almost 10 years. Now birds sound exactly as I remembered them. Music and the phone took the longest for me. That was very frustrating. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 10, 2015 HearPeers Heroes Report Share Posted August 10, 2015 I agree with Adam. People say that you improve over the first year but many people report on-going improvements after that point. Quote Link to comment Share on other sites More sharing options...
Marga Posted August 10, 2015 Author Report Share Posted August 10, 2015 It's nice to read your story: Mary Beth and Adam. I see a lot of recognition in it. Me too Adam, in the end of the day, I am tired of listening and reading lips. What went wrong with the stapendectomy surgeries Mary Beth? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 10, 2015 HearPeers Heroes Report Share Posted August 10, 2015 Perilymph fistulas twice, then developed Menieres Disease in that ear. Here's a link to my story: http://www.medel.com/blog/why-a-teacher-of-the-deaf-chose-a-med-el-cochlear-implant/ Quote Link to comment Share on other sites More sharing options...
Marga Posted August 10, 2015 Author Report Share Posted August 10, 2015 Mary Beth: the link does not work. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 10, 2015 HearPeers Heroes Report Share Posted August 10, 2015 Marga: I'm not sure how to fix that link but if you do an Internet search for MedEl guest blog My story is "Teacher of the Deaf Chooses MedEl " Quote Link to comment Share on other sites More sharing options...
Marga Posted August 10, 2015 Author Report Share Posted August 10, 2015 I have found your story Mary Beth, thanks for sharing this:) Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 10, 2015 HearPeers Heroes Report Share Posted August 10, 2015 You are welcome Margo. Is your story similar? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted August 10, 2015 HearPeers Heroes Report Share Posted August 10, 2015 Hello Marga - salutation from the old continent I am from Croatia - I do not wear CI but you are in competent and skillful hands of my colleagues. P.S.: Link is ok - my browser opens it very easily. Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted August 10, 2015 HearPeers Heroes Report Share Posted August 10, 2015 Yep Mary Beth is a super star! Quote Link to comment Share on other sites More sharing options...
Marga Posted August 10, 2015 Author Report Share Posted August 10, 2015 Thanks for your welcoming Ivana. Mary Beth: my story is similar at some points. I will tell you my story later, I have to find the right words. English, is my second language, I am better in talking than writing:) I agree with you Adam, Mary Beth is a super star. It's not always easy to deal with hearing problems, when you are in your teens it is even harder I think. Quote Link to comment Share on other sites More sharing options...
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