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About lilygirl630

  • Rank
  • Birthday 06/30/1981

Profile Info

  • Search Profile
    User of a hearing implant
  • Implanted
  • Implant Period
    Under 1 year
  • Implant Type
    Cochlear Implant
  • Hearing Loss Type
  • Cause of Hearing Loss
  • Pre/post lingual Hearing Loss
    Pre lingual Hearing Loss
  • Sudden/Progressive Hearing Loss
    Progressive Hearing Loss
  • Uni/bilateral Implant
    Unilateral implant
  • Country
    United States
  1. I am supposed to get a replacement coil on Friday (hopefully) and I need to take the magnet off my current coil and put it on the new coil. I was told by my audiologist that the instructions for how to do this are in the manual, but I am not at home and don't have my manual with me. Can anyone share the portion of the manual with me that shows how to do this? If you could scan it and e-mail it to me or if you have a link to an online copy, that would be GREATLY appreciated! Thanks!!!
  2. Congratulations! There is a lot that I can't answer in your original post, and I'm sorry about that! About the background noise, that can still be an issue, but it's going to be very individual. And it may take a while to get where you will be, depending on hearing history, etc. I am 7 weeks post activation today and I can tell a difference between my hearing aid and my implant in loud situations. The implant sounds better than the hearing aid, not quite as loud and overwhelming, but I still hear a lot of background noise. I do hope this improves, but after speaking to several people, I understand that it may or it may not. I will also say that when I met with the surgeon, I had hoped to schedule the surgery at that time, but was unable to. We had to wait for insurance approval before I could do so, which came 2-3 weeks later. So, unless you already have approval, just be prepared when you meet the surgeon that you may have to wait for a short time before you can schedule the appointment. I got mine done at a popular center and was still able to get a surgery appointment just 2 months after finding out about insurance approval. I then had to wait 3 weeks to be activated. It's a long journey that I've just started, but so far I have no regrets! Best of luck!
  3. Hi! I'm a teacher of the deaf and hard of hearing. I see so many kids come to me and get implants and are unsuccessful. I believe that a deaf and hard of hearing child can be successful either with or without an implant, but when choosing an implant, the younger the better! So, that said, I'm glad you didn't decide to wait! Does your son have 1 implant or 2? It's GREAT that he is already responding to sounds and babbling more!!! As far as the therapy goes, 1 time a week is not bad for such a young age, but it really depends on what you are doing at home. The more you do at home, the more successful your son will be. I think it's enough for now, if you are doing your part at home. As far as preschool goes, YES! I am a huge believer in preschool, no matter what challenges a child may or may not have. Look in your area and see what is available. Usually public school systems offer services. My system that I work for has preschool available for students when they turn 3. This my classroom, actually. But we sim-com, so we sign and speak. There are pluses and minuses to this mode of communication, and I can go more in depth if you want me to. You will need to just research what is available where you are and what you want for his future! But, he is already making great progress!!
  4. It's true, you really can't make a wrong decision. I've known people with all 3 brands who have been quite successful. The most important part is the rehab. I teach students who are deaf and hard of hearing and please please hear me when I say this: CIs are NOT cures! They can be wonderful and give your child sound, but you still have to work with them and make the follow up appointments for mapping and practice at home and get them the therapy and services they need. Most of my students' parents don't seem to understand that. I don't say this to scare you, only so you know what is most important for your son! And no 2 people have the exact same experiences, so there is no telling when your son will hit his milestones. I am very newly implanted and activated (1 week post activation), so I'm a little limited on the advice I can give you. I can tell you that the reason why I choose Med-El was partly to do with a wider dynamic range (less sound compression) and a longer electrode array that is also more flexible and therefore would allow for more hearing preservation (since I did have some residual hearing, which was saved). I also had the opportunity to speak with someone who had been implanted with Cochlear and had to have those explanted for medical reasons and was reimplanted with Med-El. She felt that the sound quality was better with Med-El than with Cochlear. I had been leaning towards Med-El for the first few reasons and was convinced by this woman's testimony and rare experience. Some people say to look at the processor and choose by the processor features, which I would have picked Cochlear if I had done that. However, I believe Med-El will catch up to Cochlear and Advanced Bionics by coming out with a more water resistant or even water proof processor at some time in the near future. If they don't, they will have a LOT of very unhappy customers! I couldn't bring myself to do this, because while a more water resistant processor would have been great (Cochlear), I was more concerned with the previously listed internal features. Cochlear has a newer implant that has a longer electrode array that's more flexible, but I was told that it is half banded, meaning the electrodes are only in half the array and it was unknown yet how this affected sound quality, etc. I wasn't willing to take that chance and I had to make a decision, so I went with Med-El. I am 1 week post-activation and I am understanding words when I talk with people, if I have visual cues, like signs or lip reading. I can understand words in closed sets without visual cues in a quiet setting. The sound quality is still tinny and robotic, but I've been told that will go away. I had a very easy recovery from the surgery. My taste buds were minimally affected and getting better, though the metallic taste has not completely gone away. But foods taste better now, so I can deal with this if it never completely goes away. My students have come back from their surgeries pretty much completely unaffected by any of the above. They are kids and they recover and deal with things so much better than adults! I will also tell you, they all have Cochlear. We had one student, several years ago, with Med-El. She has since graduated and is a very successful adult. I'm not saying it's because of Med-El. Rather, it's probably more likely that she had the proper follow up care and rehabilitation. Good luck with your decision and let me know if there is anything else I can help you with!
  5. I have not personally tried it yet, as I haven't broken a sweat since I have been activated, but I spoke to another Med-El recipient who has bilateral implants and is an avid runner. She recommended Ear Gear, which I had with my hearing aids. I ordered some and have them on hand for when I get back into my workout routine. The website is gearforears.com. They are just covers for the implant that are supposed to help protect it from moisture damage. You would still have to employ the dry box, but they have helped my hearing aids last!
  6. I don't know what the plan is, but I was told by an audiologist who does CI mapping and who also has Med-El implants herself that Med-El has heard everyone's complaints and requests for more water-resistant and/or water-proof processors. I am really hoping this is true, but considering that Cochlear and Advanced Bionics currently have them beat in those areas, I can believe they would be researching it. I do hope that they can come up with something other than the aqua bag that Cochlear is developing. I think the aqua-bag could be a great temporary fix, but when it comes to the pool, I would rather have something like ABs water-proof processor. Maybe part of me wonders how the processor would stay on with the bag, especially if you have long hair like me.
  7. Yes, my taste is mostly back now. There is still a slightly bad taste, but it's very slight and totally manageable. I also have a slightly odd sensation on the right side of my tongue, but that, too, is fading. Before it felt like I had either burned my tongue or had a numbing shot in my mouth that was wearing off. I do have hope that this will fade, too, but even if it doesn't I could totally live with it. Have you had the surgery or are you thinking about it?
  8. I guess I just expected more of a separation of sound. When I was first activated, I could hear this constant noise, which was the a/c (there was no way to turn it off in the room) and when the audi spoke, I would not have known if I didn't see her lips moving. I have been playing around with the magnet, taking it off briefly and putting it back on because, though I know my residual hearing is really not that great, I have heard things and they have surprised me that I've heard them. I have been wearing my aid in my left ear some, partially because when I need to communicate with someone and understand them, I can't always read their lips, and partially because my audi said it might help my brain to normalize the sounds in my right ear faster. I'm trying to make it more time without the aid on than with it on, but it's nice to have it in my ear and when I hear something I don't recognize, all I have to do is turn the aid on and I can usually figure out what the sound is, hopefully helping my brain make connections. I must admit, though, it's blissful right now to take it off at night! the silence is golden and I'm usually exhausted. Not getting a nap in yesterday or today hasn't helped! Hopefully I'll get to the library on Monday to find out about audiobooks and the matching printed book. I'm noticing that the tv is getting easier and it helps tremendously when the speech matches up to the captions. Sometimes it seems like it is so close to being clear (not necessarily the sound quality I want, but almost understandable) that I take my magnet off to make sure I'm not hearing everything with my residual hearing. Though I know my residual hearing would not pick up the sounds I'm hearing with the CI, I still have to do it and I'm surprised when I realize I really am hearing it with my CI! Of course, without the captions, it would be all noise, but it's progress! Sometimes I find I'm able to go up to the next program setting, which is more volume, so that's exciting, too!
  9. randomthoughtsandruminations.wordpress.com I wrote a blog post about my activation day (which was today!!). All in all, it was successful (meaning, I didn't destroy the internal device in the 3 week recovery period, LOL), though I was a tad disappointed. I knew what to expect and I have kept my expectations low, but I won't lie, I did wish that I would have had more understanding of some sounds today. As it is, it's almost my bedtime and I haven't understood anything without a visual. I've just heard a lot of warbling and almost a chiming sound when noise is happening. I did hear my keys jingle, much like a cowbell and the ice clinking in the glass at the restaurant I went to for dinner was much more high pitched than I had heard it before. I go back in the morning at 8 am for more mapping. Hopefully I'll start seeing more progress during the weekend. I have already warned my mother that she will be practicing with me a lot this weekend! I plan to listen to a lot of children's books on tape/cd while reading the book and listening to a lot of environmental sounds. I will definitely be doing my part to get where I want to be! I can't believe how much stuff I got! I already am not a fan of the direct cable. I don't understand why they didn't give us a choice and let us get the cable that allows for only sound from my iPod to go through to my processor. Instead, I have a mixed cable that allows for sounds from my iPod AND environmental sounds. Maybe it won't matter if I find something else I prefer that will last through a workout. I think until I can start to enjoy music, I'll just be going without at that time. Today was also my post op appointment and all my restrictions were lifted! No more sleeping elevated, back to exercising, and I can shower and wash my hair normally again!
  10. My audiologist recommended I get one. I probably will, though I want to find something the is somewhat fashionable before I do.
  11. Wow, sounds like you are doing great! I also had my activation today, but still hear a lot of warbling and can't distinguish what sounds are, yet, I can understand some letters in an iPad app game and some words when I listen to a story that was read online, but other than that, I can't understand the noises. I go back in the morning, so hopefully I'll see more progress over the weekend! Congrats on the success!
  12. Awesome story! Thanks so much for sharing! It's very encouraging to hear a story of someone with quick success! I was implanted last week on Tuesday. I also chose Med-El because I liked their longer electrode, plus a few other reasons! I have my appointment for activation Oct 10 and can't wait! I'm nervous about and and trying to keep my expectations realistic, but it's hard. I don't want it to take forever to begin to understand speech! I lol'd at your comment about living as if it were the last 2 weeks of your life. I felt the same!
  13. Thanks! It's nice to have an idea of a time frame for what other people have experienced! I hope mine follows the same path! I've definitely ha a bit of change since the surgery, but it seems to have slowed down a bit now. But, remembering how things healed up from my knee surgery, that seems standard to have a slowing down period, where the changes aren't so noticeable.
  14. Does anyone who had this sensation after surgery remember how long it took for normalization? I had my surgery 6 days ago and was just wondering. I know there is a possibility that it may not go back to the way it was before surgery, but I'm really hoping it does!
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