25 comments

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  Mercy

  1 year ago

  I know that stomach-twisting sensation that comes with wanting something in spite of yourself, and the please please please refrain that gets stuck in your head. "Sucks" is an understatement. But here's to hope and floating with the current. I'll be singing the "please" refrain for you getting what you want.
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  Becky McCray

  1 year ago

  This takes my breath away. We'll all be hoping with you!
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  Connie Reece

  1 year ago

  Chel, this is amazing! I'm so excited for you, and I'll be on pins and needles until you hear back from Envoy. **saying prayers**
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  Jeff Sass

  1 year ago

  Thanks for sharing. Needless to say I will be adding my hopes for you as well!
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  Kara

  1 year ago

  A tweet from Connie directed me to your beautifully written post. Hope takes courage and I admire yours. Thank you for sharing and I have added your hopes to my day's prayers.
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  Phillip

  1 year ago

  Chel! I'm so *with hope* for you! Saying prayers that all the right things happen, and Lord willing, someday you'll really be able to hear what a complete goofball I am in all the textures of sound on the podcast :)
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  Kate

  1 year ago

  What a wonderful thing to be hoping for! Am sending you hopeful thoughts from rainy Vancouver!
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  Thomas

  1 year ago

  Wow! I'm holding my breath just reading this! I do hope it all comes together for you. (My niece was born profoundly deaf, but with an implant can now hear moderately well. Implants are amazing.)
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  Hooeyspewer

  1 year ago

  Waiting does suck. Hope your wait isn't too painful. I truly hope that everything will work out for you. *fingers crossed* :)
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  Lori

  1 year ago

  Oh Chel! I really hope it all works out! That would be just fabulous!
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  Tim Siedell

  1 year ago

  Wow. I hope it works out for you. Best wishes and good luck.
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  Lauren-diva65

  1 year ago

  Oh Chel, I'm so hoping you get the answer your looking for. How brave to share your story like this. I'll keep you in my thoughts.
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  Scott Monty

  1 year ago

  Wow. I never knew. I hope this works out really well for you, Chel. I'll likely be sharing my own hearing loss story at some point soon myself - very similar to yours, but no implant at this point. Ain't technology grand?
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  Cathryn Hrudicka

  1 year ago

  Chel, your post is very moving, and from our phone conversations, I would not have known you had any hearing loss. You are very brave, and you give hope to other people who are waiting and hoping for anything. My best thoughts, cheers and prayers are with you for this to work out.
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  Dale Cruse

  1 year ago

  We're all excited for you! Good luck!
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  Kim

  1 year ago

  Keeping lots of hope for you girl! I will be waiting anxiously with you!
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  chelpixie

  1 year ago

  Thank you for all of your heartfelt comments, hopes and prayers. I'm being a bit more patient than I thought I'd be considering. I'm sure I'll hear more today or I hope rather.
  
  Scott, technology is a miraculous thing. I called my mom to tell her as well. I don't think either of us believed that there would ever be anything like this! It could do so much for my life that I'm so in between feeling excited about the possibilities and scared for not being able to turn the sound off! I didn't know that you suffered from hearing loss as well.
  
  Cathryn, most often on the phone I hear better without my aids to be honest. I'm very cautious about where I speak on the phone, I keep the volume levels pretty high and wing it.
  
  Mostly my issues occur in crowded rooms during conversation both with and without my aids. In a room with a couple of people and no background noise I do fine but better with the aids, obviously.
  
  One thing that's bugged me forever is that I can't hear my music on my iPod normally. I turn the sound up and I'm damanging my hearing further. Being able to listen to that normally would make me EXTREMELY happy.
  
  Another is that after loud environments (bars) or after concerts, voices sound very warbly. Very distorted sound through a mic. Hence the reason I'm so quiet usually after hearing Matthew play!
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  julien

  1 year ago

  thanks for this... and keep us updated dude. my hearing isn't getting any better and i really need to start thinking about stuff longterm so any info is great.
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  Chris Wallace

  1 year ago

  Hi,
  
  My name is Chris and I am going to have the Esteem
  implant on June 19th, 2008 by Dr. Kraus in N.C.. I
  was wondering if you qualified or had the surgery?
  Let me know how your experience went. I enjoyed
  reading your aticle about hou you found out about the
  Esteem trial. I felt the same way.
  
  Best regards - Chris
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  chelpixie

  1 year ago

  Chris,
  
  Thank you for your comment. I'm glad that someone who is having the implants has commented and I wish you luck with process. I'd be interested in hearing how it goes for you.
  
  I found out last week that I actually didn't qualify due to my word discrimination percentage. I'm a little disappointed by this but realizing that it's only a matter of time before it's available to the majority of people. The cost is alarming and I'm concerned how it will be treated by insurance.
  
  I did blog about the results last week and also will be sharing more thoughts on my situation but also some thoughts about how I'm feeling lately in social situations.
  
  Please feel free to contact me via email at chel (at) chelpixie (dot) com.
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  Mandy

  1 year ago

  Hi Chel,
  
  I am so sorry you did not initially qualify for the Envoy Esteem implant. Don't give up hope just yet. I was in the program in 2005, but I was forced to drop out two days before surgery thanks to testing very poorly on my baseline speech discrimination testing. I was truly devastated.
  
  Since then, the requirements have changed and the trials allow lower sd scores, so after a phone call two days ago, I found that I am once again up for surgery, in mid June. I am cautiously optimistic, and I am so excited that people with sensorineural hearing loss will one day have this advanced technology available to them. This includes my own children, who are also HoH. Don't give up just yet!
  
  By the way, I noticed the last comment, from Chris, mentions that he will be having surgery the day after I am scheduled to do so, by the same doctor. Since his email address is hidden, would it be possible for you to put him in touch with me? It would be most appreciated!
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  chelpixie

  1 year ago

  Hi Mandy,
  
  Thanks. I'm not thrilled by the outcome but can certainly handle it until things change. I'm still hopeful that the requirements will keep changing and that as the testing moves forward will put me in the category of them calling me in.
  
  Thanks for sharing your story and encouragement.
  
  I'll email Chris and see if he's okay with me sharing his address and give him yours. Hope the two of you can connect. :)
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  Mandy

  1 year ago

  Hi Chel! I wanted to say thank you for putting me in touch with Chris, he and I both went on to have successful surgeries, and we even met a couple of times during our stay.
  
  If you don't mind my asking, do you know what your speech discrimination scores were? The reason I ask is because of the latest information I obtained. While Envoy requires sd scores of 60% and above, they allowed 8 to 10 people with scores between 40 and 60% to be tested (I was one of these). If the results are promising, it's very possible that Envoy will accept more patients for a full study within that category. Those with scores below 40% qualify for the cochlear implant. While some people are wary of the cochlear implant's bulky outer components, I found out that Envoy will soon begin clinical trials for a fully implantable cochlear implant!
  
  I just wanted to pass this on to you, because I know firsthand how devastating it is to get your hopes up, only to find out you don't qualify. I listed my LiveJournal link where I keep a full account of my experience as a patient, if anyone would like to see the pictures and learn more.
  
  Take care, Chel, and have faith that one day, when the time is right, your day will come!
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  Mandy

  1 year ago

  Whoops, not sure if I forgot to add the link, sorry! :D
  http://alreadygone78.livejournal.com/
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  Michelle / chepixie

  1 year ago

  Mandy,
  
  Congratulations to both you and Chris for successful surgeries. I'm happy that writing this had a chance to bring together something wonderful. It's great to hear the news that all is well and you look to be healing fast.
  
  My test was for the fully implantable implant. I'm not sure if they had different qualifications, but it looks as if yours was as well from the photos?
  
  My speech discrimination for my left ear was between 60-40% but they were firm that they could not accept me unless my scores were better. I wonder if that's because there was a high demand in our area? I will have to call the clinic and ask and see where they are on testing candidates.
  
  By no means am I finished trying to get them to accept me but it seems as it's going to be a bit more difficult than I imagined it would be to make it happen.
  
  I can only say that I know the future holds many changes and do not thing of this as my last chance to have the surgery.
  
  As I'm reading your journal I'm realizing I'm not sure how I would feel only have one ear implanted either. Much to think about.
  
  Thanks for letting me know and keep me posted!
  
  Chel
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