Jump to content

violinmemories

Members
  • Content Count

    19
  • Joined

  • Last visited

About violinmemories

  • Rank
    Newbie
  • Birthday 04/06/1978

Profile Info

  • Search Profile
    User of a hearing implant
  • Implanted
    Yes
  • Implant Period
    Under 1 year
  • Implant Type
    Cochlear Implant
  • Hearing Loss Type
    Sensorineural
  • Cause of Hearing Loss
    Unknown / Prefer not to say
  • Pre/post lingual Hearing Loss
    Post lingual Hearing Loss
  • Sudden/Progressive Hearing Loss
    Progressive Hearing Loss
  • Uni/bilateral Implant
    Unilateral implant
  • Country
    United States
  1. Walter: Welcome to Med-El site. I am so sorry that you are having such a difficult time with the implants and I don't blame you for being terrified and scared about getting a Med-El. I was just implanted with a Med-El March 5th and I will be activated March 27th (Wednesday). I'm not a musician but my late father was a professional violinist for over 50 years! I grew up listening to classical music, going to his concerts and hearing his students on Monday nights as well as the quartets that would gather at our house, I loved nothing more than music and when my own hearing started failing I felt fortunate enough to still be able to hear the violins. Now I can't hear them or classical music and I'm counting down the days and months until I can hear them again. Ironically, my hearing go worse around the time that my dad passed away from Esophageal Cancer 7 years ago. I miss hearing any violin playing and I miss hearing classical music (because it is the music I grew up with). But I am looking forward to hearing music again someday! I hope you are able to find someone to take your case and make others aware of what happened. My thoughts and prayers are with you. Meredith
  2. Thanks Sid and Matt for the replies. I am so excited about the whole process. Gonna be exciting to see what actually happens at the activation and what I do hear. Some background on my hearing loss, I was born with SSHL and got my 1st pair of hearing aids when I was 6 years old. I was adopted from Bogota, Colombia when I was 2, my hearing loss wasn't discovered until my kindergarten screening. With the hearing aids my hearing had always remained steady, the audiogram never changed in either direction until I reached High School. At that point I went from wearing in the ear hearing aids to needing the more powerful behind the ear hearing aids. I made it through high school and it wasn't until I was in college that suddenly my hearing changed in that my left ear which was more dominant suddenly took a nose dive and my right ear became more dominant. May 2012 I tried to see if a more powerful hearing aid would work for the left ear, it did nothing but amplify noise and sounds to the point I was getting frustrated and getting headaches (ironically I was at the HLAA convention in Providence Rhode Island) and it hit me that the hearing aid was worthless. Good thing the hotel room windows didn't open, I was ready to chuck the new aid out the window. What was even more apparent was that others that were there knew what was going on and could tell that the aid wasn't working for me (didn't find this out till later). Lucky for me it was still under the 90 day trial period so I got my money back when I got home! At this point I stopped wearing the old left hearing aid because it did nothing for me. It's sitting in my room in a Dry n Store box waiting for me to donate back to the HA audiologist! I scheduled my CI Evaluation and was told I was a candidate BUT the surgeon and/or hospital I went to didn't want to do the surgery on me!! They kept pushing me to have it done locally, that the surgeon I saw knew the local surgeon. So after discussing the whole visit with my mom, we decided to look at the local surgeon. I made an appointment to see him, he scheduled me to have the CI Evaluation at the local CI Center he uses. My appointment with them was really amazing and this time I passed (failed) with flying colors (4 years ago I had an evaluation and I din't meet the criteria). My audiogram was 28% right ear, 12% left ear and with the hearing aids 51%!! I didn't even get pass the words to the sentences - that is how bad my scores were. I was essentially hearing NOTHING in my left ear. Mom and I sat down after the test to find out that I made it through and audiologically qualified! Now it was time to see my surgeon in January 2013. I saw him and got the call about 1 week later that I was scheduled for surgery March 5th!!! I have a VP shunt on the right side of my head and because of that I cannot get a CI on the right side (apparently the shunt tubing is exactly where the CI would be). Also due to issues with anesthesia this last time I have made the choice to never go through another elective surgery. The risks with Anesthesia is too high for me now. I was born with a rare form of dwarfism (Morquio Syndrome) and with that comes issues relating to orthodpedcs and anesthesia (which becomes more difficult as a person gets older). So activation is Wednesday!!!! I'm excited so excited and I will post how it goes!!! Mere
  3. It's me again...Mere, I'm not sure what I am feeling at this moment. Excited? for sure, nervous? you bet, concerned? yup. I had my surgery two weeks ago, I'm healed up (had post op last week), I'm about as prepared for whatever happens next week at my activation. I guess I'm more nervous because I am the first adult in the state of Delaware to have a Med-El implanted. Though my surgeon has worked with a different brand before and has implanted children in the state, he's never implanted an adult with Med-El, the local adult hospital has worked with the other brand and I'm assuming the adult audiologist has worked with the other brand as well. They have never worked with Med-El, I'm sure it's all going to work out but I guess it's the fear of the unknown of how the activation is going to go, someone from Med-El came in to train her or work with her on the equipment back in January when I saw her last. But I'm wondering if the programs vary much between all the brands much or will she know how to program/map me right. So I guess I feel a little on edge about the whole thing. Don't get me wrong, I know the surgeon and trust his skills. Matter of fact before my hearing got so bad, I did volunteer work in his practice while ago and so I know he knows his stuff (he was named Top ENT for the State of Delaware back in the late 90's), he had done a previous ear surgery on me 13 years ago, so he knows me and my needs. I'm just looking for reassurance as to what to expect at the activation next Wednesday so I am not totally shocked or surprised by stuff. Will my mom be able to come back with me for the activation? Is the activation similar to having a normal hearing test (like in a booth with headphones on)? Will the audiologist go over all the equipment with me when I am there, so I'm not wondering later "what in the world does this cord do or that piece do", do I get a guide book or sheet explaining what the pieces are (cheat sheet)? Will my area Med-El rep be there to work with my audi in the beginning since it will be her first time working the equipment? I've got it in my head that my audi is gonna be stuck and not know what to do (silly I guess). After all she wouldn't be an audi working with CIs if she didn't have some training. Sometimes it just helps to voice everything out in the open to alleviate concerns and nervousness. Thanks for listening and any input you can provide. Mere
  4. violinmemories

    Rondo?

    I'm not sure about the Rondo at all. I was actually asked if I wanted it instead of the BTE as a backup since my activation is right around the time Rondo will be coming out worldwide. My audi only showed me a picture (actually it looked more like a fax) of what the Rondo would look like. I am not sure about it and she couldn't answer any of my initial questions about the Rondo other than it takes batteries which are not rechargeable. I have been using hearing aids since I was 6 years old, my ears have adapted to having something hanging around them (be it the hearing aids or my glasses) that I see no point in getting the Rondo at this point. I too don't want to be the first in line to get it, I would like to see the test results and hear from others on what works and what doesn't. I'm sure there are going to be some kinks that need to be ironed out but I don't want to be the "tester". I will be the first adult Med-El user in my state, kids have had med-el but at the Children's Hospital. So this is going to be all new to me, the adult audiologist and the adult hospital. Mere
  5. Adam: At this point I'm not sure what it it's called. I suddenly (well over a period of months) developed migraine like headaches, was on different migraine meds, had suddenly left side paralysis with no cause found, my optic nerves in both eyes were being affected and one Sunday I actually lost my vision! Went to see the eye doctor who noticed something off so they sent me to see a eye specialist. This guy noticed blood behind the eyes and had me see another specialist. January 2012 I went to see this guy at his office in another state, and he saw me and admitted me to the hospital right away. I wasn't showing anything on the CT scans, so they didn't know what it was..but a spinal tap showed my pressure to be sky high...the next day I had a shunt put in...almost immediately my eyes cleared up, my migraines were gone, no more left side paralysis. So to be honest I'm not sure what the reason for the shunt but I know it saved my life. Mere
  6. It's been 10 days sine my surgery! Hard to imagine 10 days out. I am doing very well. I had little to no swelling (kinda hard to figure out considering my ear is numb from the surgery). I was expecting to have a lopsided head when I looked in the mirror but I don't, even my mom stated your head looks normal. My brother came home and said "I can't see the scar or where it was shaved. My sister is here spending a few weeks with us along with my 17 month old nephew (a bundle of energy). I had my post op appointment this past Wednesday and everything is going like clock work. My ear is healed, I'm not dizzy, just off balanced a little (when I get up from a position too fast). My activation is March 27th so it will soon be here!!! Compared to other surgeries I've had in the past (orthopedic) this was a piece of cake, and compared to the shunt surgery I had last year, there is no comparison..last year I was in major pain for almost a month and it took about 2 months for the scar to completely heal. I'm slowly getting stuff together for my activation, just ordered a journal and pens. Of course I don't know what is included in the box of magic I'm getting so it could already have those things in it, just wanna be prepared. My energy level is back on track for the most part - and than after spending 10 minutes chasing after my nephew and telling him 'No, put that down or come here" my energy level is zip, nada, zero! Mere
  7. On Tuesday, March 5th I underwent surgery on my left ear for a CI! I did have some issues which made the surgery longer than what I was expecting (3 hours). One of the issues for me was intubation, it took longer for the anesthesiologist to intubate me due to my small airway and skeletal dysplasia. Also my body was not still during the drilling and that made it a little more difficult for the surgeon using the microscope. I was kept overnight to monitor my breathing and I came home Wednesday. I am still taking it easy, today was the first day I was able to shower and believe me the water felt so good. So far no swelling around the site, I have an appetite but still eating soft foods as my tongue is still sore. Throat is getting better though. I have a post op appointment on Wednesday March 13th. Slowly recovering and able to move around, no dizziness but I have the tinnitus and it is starting to go away slowly. Anyways, just wanted to share the good news with everyone. Oh the surgeon got all the electrodes in the ear!! Activation is March 27th at 9am. Mere
  8. Annie: I don't have my CI yet, but from what I've heard from others it takes time. You might have not had hearing in the implanted ear for only 3 months but I still think it's going to take time for the brain to decipher what it heard before and what is going on now. Meaning the way the brain hears with the CI is by passing the inner ear and stimulating the auditory nerve itself. With a hearing aid all the sounds are amplified and goes through the inner ear. I guess it depends on how each individual person does, the amount of time that is being devoted to auditory therapy (on your own or with an audiologist) and even how many mapping sessions you've done. I wouldn't give up, it will get better over time. Just right now your implant is needing a little one on one attention. Mere I get my CI in one week (March 5th)!!
  9. Maybe you could start a walk in Alaska!!! I know they do them in the lower 48. I would suggest contacting HLAA or the Walk4Hearing contact and find out how to get a walk in Alaska. I've been to Alaska and it's a beautiful state. Lots of hiking trails and wonderful history and people. Meredith
  10. Personally I have never made it to a Walk for Hearing event, but having said that I know a ton of people that have gone. They absolutely love it, I live in Delaware and happen to know of people from NJ that go to the Philadelphia, PA walk. It's an all day event and entire families and work groups attend. I've seen videos of past events and all sorts of people go from little kids all the way up to grandparents. It's a huge event and likely the different chapters or areas are covered by the media. It's a great way to get people to understand and notice how many people across the board are affected by hearing loss/deafness. Mere
  11. Annie: I have heard from other CI users that a head cold can affect how well a person can hear with a CI, I'm guessing anything that alters the status f your brain (temporarily) can impact how well a CI does. But that is just my thought. Even though Fairbanks has little humidity, it's always a good idea to use the box to clean the CI from dust and dirt every night. Mere
  12. violinmemories

    OPUS 2XS

    Just for everyone's information, I was able to try both batteries on the demo, the 2 button and the rechargable. The rechargable and the 3 button battery size are the same. For people with issues with the neck or turning the head - I found the rechargable size to be a little to long for me, however I am getting both sizes (2 button and rechargeable). I personally felt better with the 2 button size but got the rechargable for when I am traveling and as back up (can't tell you how many times I've gone crazy trying to find hearing aid batteries in my house). But thought I'd share my insight for those that need it. Also, you can test out all the sizes at the intial audiology appointment (which I strongly recommend doing)! Meredith
  13. Here's the link: http://www.cochlearimplanthelp.com/ Mere
  14. Here is a website that covers ALL three brands of CI out there. There are no adds, no brand bashing. Just lots of information from determining CI Candidacy, choosing a brand, surgery, waiting after surgery and rehabilitation. http://cochlearimplanthelp.com/ It has a wealth of information...hope this helps others!! Mere
  15. As you know I'm getting Med-El on March 5th, my activation date is March 27th. Over the past few weeks I have been slowly getting stuff together, I know I have time to get the rehab stuff together, but I wanted to start a file now for after my activation; reason being that I want to make sure I am prepared and I will know exactly where my information is, so I am not hunting around for exercises and support. Can someone tell me if you get information on rehabilitation at the activation or is this something I do on my own time? I will be the first adult in my state to be implanted with a Med-El, my surgeon has done children at the local hospital but just recently the adult hospital approved the purchase of Med-El, they currently do Cochlear America. While this is really exciting, right now it's a little scary for me as I'm guessing it's going to be a trial and error as to what works and what doesn't. Or am I just inviting problems and seeing things where there really aren't. Anyways, can some of you tell me what helped you after the activation to train the brain better? Is there a specific type of music I should start out listening to (Classical, Jazz, Hip Hop, etc..), telephone numbers to practice with (of course with time). Any help will be greatly appreciated. Mere
×
×
  • Create New...