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MaryGP

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Everything posted by MaryGP

  1. Hi Mary Beth and all, Thanks for checking in. I am very lucky to live 30 minutes from Wake Forest Baptist, and 1.5 hours from UNC Chapel Hill. So, I am looking into both of them for my surgery and rehab. I had a consult on 10/3 at WFB. The program for adult CI is small. There is 1 surgeon who does it - and she is amazing. Trained at House (where CI was invented). This is the same place I have been going to for my initial diagnosis and all my audiologist appointments. Pros - love my audiologist (we already had mutual friends), love the surgeon, feel really comfortable there. And, it is small enough they work with you on a case by case basis. They were not surprised at all when I took out my CROS hearing aids because the fatigue increase was unbearable. Cons - they don't seem to have an "established" adult CI "program" - they do them, and they have rehab, but it is small enough they do it on a case by case basis. They did not have much experience with the life altering fatigue I have been dealing with (Highly challenging listening environment at work). I have a consult with UNC-CH 11/4. Haven't met them yet. So, there is only so much I can say here: Pros - they have a large (5 surgeon team), established program. the surgeon I am seeing is highly reputable. Even my surgeon at WFB commented on what a good reputation he has. The work done to get Med-el approved for SSD (my diagnosis) was done at UNC-CH in concert with Med-el whose USA headquarters is 5 minutes away. I have an open house appointment with Taylor at Med El on the same day. Lets put it this way, I researched this stuff for 2 months and then I found the UNC CH portal where all my research was in a single place and took 5 minutes to evaluate. The information Taylor sent me from Med-el was created by the research audiologist at UNC. It is entirely possible they know things like clockwork that WFB hasn't experienced yet. Cons - they are 1.5 hours away. thats a lot of travel for rehab - OK, I know I am spoiled and there are peeps out there who travel 6+ hours. But, its a consideration none the less. Probably a little less personal - as the program is so large. Overall - from the scans and the experience/capability of the surgeons - its probably a wash. It comes down to the after care program. I think the implant is going to be the same either way. Synchrony 2 and Sonnet 2. With my listening environment at work I understand the sonnet will be better than the Rondo. And, I don't care if people see it. For me, its better that they do - so If I don't hear them they don't think I am being a snob. haha.. Any input would be appreciated. On one hand, I feel like it is a pretty big and important decision. On the other hand - they are both highly respected research hospitals - so maybe I am making too much of it.
  2. Kylie, Thanks for the information. It sounds like CI is working very well for you! Such good news for you and your family. I have been a little overwhelmed at the level of rehab necessary to make this successful. It is encouraging that you are getting results with only 20 minutes a day. I am so tired at the end of the work day (mentally tired - from work+straining to hear), that I am concerned about my ability to be successful. I don't know how you do it with kids!!!! :). I can definitely commit to 20 minutes. Hope you have a great week. Thanks again!
  3. @Mary Beth WOW - Gosh, why can't these things happen when we are in our 20's and energetic?. Pushing 50 is not the time for this type of endurance challenge (whats the emoji for nervous laugh?)😁 Yes, please tag me on your plan. I don't want to re-invent the wheel. I don't currently have an ipad, but if that is better for training than a PC, I am not opposed to buying one. If I decide to do this, I will completely commit and not spare anything that will help success. I am in Greensboro NC. Which is closer to Wake Forest Baptist Hospital (research and teaching). I am currently going there but not opposed to changing locations to UNC - I am going to have my evaluation with my Dr in October. She seems quite bright but is young. However, i don't have the complications that you did. My MRI test showed an "unremarkable cerebellum" which my family and colleagues (especially employees) have enjoyed immensely. My CT scan was also normal. One of my colleagues at work, his wife also has had meniere's since she was relatively young. It is my understanding that is quite rare. Anyway, she goes to UNC, so I could ask them for a Dr suggestion. She still uses a BAHA - and has not done a CI. BTW - I have emailed medel. Its a holiday so I don't expect to hear back from them immediately. You are loads of help, I can't tell you how much I appreciate it!
  4. @Mary Beth!!! What an amazing video! Thank you for making and sharing it. It was very encouraging, and I am so happy for you that you have had such a great result. It is also great to hear that you don't hear robots, but people. And, that you can hear emotional changes in voices, and music :). So a more practical question. How did you manage all the rehab and work? I am so tired after straining to hear all day, the thought of coming home and doing rehab for 2 hours sounds like a significant challenge of endurance. There is no way I would get the surgery without committing complete to rehab. I'm an engineer, and we don't do things without thinking through it and planning for all the ramifications. So, did you take time off work? Did you just power through it? Did you have a rehab plan going in? if so, can you share? Sorry, I may be "geeking out" a bit now... Next thing you know, I will build a rehab spreadsheet.... It sounds like your spouse was really helpful. I live alone, but i think I could manage the training using videos and Angel sound. I am currently downloading Angel Sound so that I may get a preview of what rehab looks like. Thanks again.
  5. @Mary Beth Thanks for replying back. I will take your advice on emailing medel. The more research I have done on this, the more concerned I am. What I have read is that the implant is most effective at reducing tinnitis (which I have very little of) and least effective in hearing conversation over loud background noise - which is my biggest issue due to my job. Oh, and sound localization. That is very frustrating - especially when auditing equipment use.... But, I have an appointment with a surgeon on 10/3 for an evaluation. So, I will ask her a lot of questions also. Sorry I didn't respond back earlier. I have spent the past few weeks trying to make the CROS hearing aid work and have been utterly exhausted. (I am annoying my self right now b/c that sounded so whiny). Anyway, it actually reduces my ability to hear my employees in the lab (think loud ventilation noise being piped directly into your good ear). But, I am going to keep at it for at least another 2 weeks. One doesn't get a hole drilled in one's head, without an honest try of the hearing aids. How do you do with conversation competing with loud back ground noises. My job has background noise a little less loud than a crowded bar. But similar. Are you able to make out conversation? What about tonal changes in conversation? Are you able to accurately read other's emotions? I have always been very empathetic. That is not a sense I would be willing to loose for better hearing. Thanks for your time - and I hope you have a nice holiday tomorrow. Mary
  6. Hello all, I just lost my hearing in one ear, suddenly 3 months ago. I went to bed hearing, and I awakened profoundly deaf in my left ear. I have been fitted with a CROS hearing aid, but am interested in CI. Especially, now that it is approved by FDA and I may be able to get insurance to pay. I am a positive person (well, lets say that I am grossly optimistic) so at first, I thought, this isn't that big of a deal. I haven't loss my independence. I am not stuck in a wheel chair on unable to drive (THank God!). But, as time progresses I am really effected by the back ground noise and its invasion on conversations, my inability to pick up words in multiperson conversations (did people always talk over eachother like that?) and the exhaustion at the end of the day after working so hard to hear every one at work. You see, I am a manager in a chemical plant laboratory. The ventilation is necessary and very loud. I am constantly straining just to hear my employees. Oh, and then there is music. Which is now just flat and noisy. My audiologist thinks I am a good candidate for CI because I just lost my hearing. I would love to write/speak with someone who has been through the same thing. Anyone out there? Peace, Mary
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