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mcnarym1 last won the day on August 30 2016

mcnarym1 had the most liked content!

About mcnarym1

  • Rank
    Regular Contributor
  • Birthday 11/24/1992

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  • Search Profile
    User of a hearing implant
  • Implanted
  • Implant Period
    Under 1 year
  • Implant Type
    Cochlear Implant
  • Hearing Loss Type
  • Cause of Hearing Loss
    Auditory Neuropathy
  • Pre/post lingual Hearing Loss
    Pre lingual Hearing Loss
  • Sudden/Progressive Hearing Loss
    Sudden Hearing Loss
  • Uni/bilateral Implant
    Unilateral implant
  • Country
    United States

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  1. Hi there! I was just wanting to ask, has anyone ended up having to do vestibular rehabilitation due to getting the CI? My balance has always been off as I was sick as a kid. I've always relied on my left side to balance me, I lean to the left because I think it's center/etc. I got my CI in the left ear though and it hasn't been too bad, but I do feel nauseous a lot when I lay back or it just comes on suddenly. I'm a little nervous to start rehab but I'm definitely ready for it! I haven't ridden a bike in about 10 years so I'm looking forward to working to be able to do that again. Just curious if anyone else has vestibular issues? As far as sound, ok so hopefully this is a common thing or else I'm going crazy. So every now and then I'll be laying there with my CI out and hearing aid out, and I get this very odd quick almost buzzing sound in my head. It's usually only when I'm tired but it's a very quick buzz, almost like something is "speeding" around my head. I don't even know if that makes sense but does anyone experience something like that? When it does it, I go from being tired or with my eyes shut to being completely alert/awake. Should I mention this to my audi?
  2. I wouldn't be too worried honestly. It just takes time, even after awhile. At least the MedEl person I was talking to before my CI surgery told me that. I got activated in July and can already understand about 80% of things but it's those specific pitches that are so hard. I went to go see Wicked the musical last weekend and I could understand everything except when Glinda was singing popular, way too high pitched. That could be why your friend had issues, because it wasn't just a voice but the voice had to travel through the intercom and you have all those people in the airport making noises at various pitches too. I still have to watch the tv with captions on for the same reason, some pitches I just can't understand yet.
  3. My doctors gave me many things to help clan the area. I was given hydrogen peroxide to mix with saline solution (you don't need much at all but make it a 50/50 mix) then dip a q-tip in it and clean the area of the scar. Then after you do that I was also given essentially a neosporin or bacteria cream to prevent it from any germs/etc. You can pick all of this stuff up at any drug store if you weren't given anything.
  4. My audi never said anything about focusing on JUST the sounds and getting familiar with them? That's a little odd. I mean maybe like wait one more day to get used to some sounds but if you go to that link for MedEL, some of the games I think are just sound practice but it's more sentence practicing. I would practice that as well because it's the only way you may adapt to normal sounds faster. Some people do the hair shaving thing some don't. It's really your choice. I didn't shave the entire part and have a bald spot there, what I did was instead what you said. Shave under the normal length hair and only do the spot under directly where the magnet is. It isn't noticeable so don't worry. Although I did just buy Harry Potter skinit covers for my sonnet so it may be a little more noticeable. I'd just give it some time though. The first 2 weeks are the hardest, that's what both my Dr. and audi told me. You just have to let your brain get used to everything. They compared it to like walking outside into the sunlight with no sunglasses, it can be shocking at first. You may not feel any swelling, but there is some. That entire area gets pissed off because you're messing with so many different nerves. If you put your finger by the area where you're implanted, it should feel at least a little numb. I'm almost 2 months out and the swelling is still going down. I think that may be your biggest reason right now as to why you're having issues with the magnet. Even if it is the Sonnet. I started out using the sonnet because it has the behind the ear piece and i was worried about it constantly falling off. My audi told me it's very common for CI users that once they start with one processor, they normally stay with that one. I only got the Rondo so when I go to my family cottage in Michigan and we go boating/charter fishing, I don't ever have to worry about it getting wet. Sorry I tend to jump around on topics but what magnet strength do you currently have your processor on? I have it on 3 and if I go up to 4 I have to be really careful because it's very strong. This is another reason I shaved the area of the magnet because I had the same issue with it falling off due to my hair so when I shaved it there was a big difference. If you choose to, I wouldn't shave it just yet and wait maybe like a week because you do have the swelling.
  5. Great news! Everything you're going through is exactly what I did. I had 2 back to back appointments at Johns Hopkins, they said they do this because the first day is really just getting used to the CI and not too much mapping goes into it. Obviously they adjust volume on the first day but don't do much fine tuning. The volume of your CI changes like you said and it's the same for me. When I get mapping done everything seems loud for like an hour and then my brain accepts it at the correct volume. I finally just finished my mapping appointments that were like once a month but I remember thinking every time she cranked the volume I was like "Oh come on I just got used to this volume". I was told pretty much exactly what your audi told you. If you hear a sound, ask what it is if you don't know. I still do it, almost 2 months out of activation. What I actually did to help my self associate sounds, was go to Starbucks and color or work on my computer. Starbucks is always busy but I was able to recognize sounds like the blender/etc. One thing you can do though is go to MedEls website and find some information on resources to practice sentences/etc. http://www.medel.com/us/soundscape/ The magnet is an issue for me too! A lot of people say it's due to the strength but I asked my audi the other day and she said it could be the strength or if you have thicker hair it could be that too. Someone on here or the FaceBook group for MedEl users actually recommended this, I have my fiance shave the spot where the magnet is, every couple of weeks. This helps the magnet stay a lot easier because it's not trying to go through my hair, I also think it helps wiht clarity just a tiny bit. If you do go up a magnet strength to like 4, then yes you do need to monitor your skin because it's very strong and can affect the area a little bit. Which type of CI do you wear for now? I had htis problem with my Rondo not staying in, but my Sonnet works fine. I've never experienced the CI turning itself off but the only thing I can think of is the batteries last about 2-3 days. There is a warning beep that you'll at some point be able to hear, it's not too high pitched but if you're like me, the first time the batteries went out, I still wasn't able to hear in that range so I never hear the warning beep which tells you you basically have 5 minutes to replace the batteries before they die.
  6. Yes! So my story is a bit unique, everyone's is. I had cancer as a child and therefore have always had issues with hearing due to the amount of radiation I had to have. Hearing in my right ear has always been very low since the tumor was wrapped around my brainstem and affected mostly my right side. I have struggled very little on the left ear. I have had an auto immune inner ear disease before where I just wake up one day and can barely hear anything. It was able to be treated with meds for a week. In February of this year, I woke up one day and my hearing was gone in my left ear. I hated it because I had just gotten engaged in December and the auto immune disease kicked in 2 days before I started my new job. Long story short CI has saved my life. I am so thankful for it. In the 6 months I went with the autoimmune disease before getting surgery, I got severely depressed, gained a lot of weight, hated my life/everything. I even told my fiance he should leave because I was so miserable and he shouldn't have to deal with something like me. I got activated just a little over a month ago and already my life has changed entirely. I'm my weird dancing crazy singing self again and everyday is a new experience with sounds and music. I'm even hearing sounds I was never able to hear even before the auto immune disease! I just got the ok to put my hearing aid back in my right ear and that's even helped too. I know the auto immune disease is starting to attack my right ear but I'm taking that one day at a time. I'm so thankful for my doctors at Johns Hopkins and the CI I got. I'm actually even going to go see Wicked the musical next weekend!
  7. mcnarym1

    New Here

    OMG! I had an autoimmune inner ear disease too! My meds only worked for a week and it went bad from there. I was told a CI was the only option as well. I had the worst sounds/tinnitus in my head before I got activated too. I'm happy to answer whatever questions you might have! I have been activated now for about a month and a half.
  8. Like Kara said, there's really no way of knowing if it will develop. For me, I had it very bad before I had the surgery, due to sensorineural hearing loss. Once I got the surgery it got a little bit better but at that point I was so used to it. It may develop after surgery because you're messing with those nerves and if you make them "mad" then tinnitus can result. After my activation though, my tinnitus got SO much better. Today was the first day I was able to put my hearing aid back in my other ear and combined with the CI, I barely notice tinnitus. I hope you don't develop it if you don't have it already, but if you do get it from the surgery, stay calm! I can assure you that it will improve with the activation of the implant.
  9. Hi Tony! Sounds like you're off to a great start with the CI. Group settings are still hard for me and I'm a month into having the CI, that just takes time because your brain is trying to get used to voices at different pitches so when you're in a group setting, it's almost like speeding the process up and your brain isn't ready for that. I have a rondo as well but don't use it yet since it doesn't stay on well. It's like Ivana said, it's just because of the swelling. My doctors told me it can take awhile for the swelling to go fully away but as it goes down, the magnet will work better. I read a comment on here the other day as well that someone mentioned when they go to get a haircut they have their hairstylist shave that small area so the magnet on her CI can work better and you get more clarity in sound since it is a stronger connection and the magnets not trying to go through your hair. I'm definitely doing this next time I get a haircut!
  10. Just curious, it's probably a dumb question but how do you all listen to music? With headphones? I ask because I was implanted in my left ear so that made my left ear completely deaf, if I were to put headphones in that ear, I wouldn't hear a thing. Is there something that you can essentially hook to your processor to hear? Same thing goes for the phone. I can sort of make it out when talking to someone on speaker. My right ear is also been weak at hearing since I was younger so I can never understand anything clearly in that ear therefore my left one was the dominant ear for phone calls until I lost my hearing. Tips on what I can do?
  11. Just curious, it's probably a dumb question but how do you all listen to music? With headphones? I ask because I was implanted in my left ear so that made my left ear completely deaf, if I were to put headphones in that ear, I wouldn't hear a thing. Is there something that you can essentially hook to your processor to hear? Same thing goes for the phone. I can sort of make it out when talking to someone on speaker. My right ear is also been weak at hearing since I was younger so I can never understand anything clearly in that ear therefore my left one was the dominant ear for phone calls until I lost my hearing. Tips on what I can do?
  12. Your appointment on the 30th is most likely another mapping appointment for your CI. When I got my surgery I waited 3 weeks and then got activated and that day they did some mapping obviously. You'll have two more mapping appointments shortly after that, each one being about 1.5-2 hours long. These are just adjustments to your CI like volume and stuff. Yes you get a kit when you get activated, it's literally like Christmas. I got both a sonnet and a Rondo as well and in my kit there's soooo much stuff, there's batteries beyond batteries, a dome for cleaning your ear piece at night, replacement parts like clips for your rondo or battery covers for your sonnet. You also get your clicker to control the noise volume and programs on your CI. It also has stuff to help you find auditory rehab lessons either online or somewhere. I can't remember off the top of my head what else is in the box, oh you get a kit that can hold both your rondo and sonnet at night when you take it off to go to bed or shower/etc. Hope this helps!
  13. No problem! Since I'm newer with the CI implant I figured I can help you through it. I had all those nervous feelings and so many wuestions before I got the implant. When I was 5 I had a brain tumor wrapped around my cranial nerve. So that's where the hearing loss in my right ear came from, due to having to get so much radiation, it affected my right side the most.
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