SStone Posted June 22, 2021 Report Share Posted June 22, 2021 Hello! My name is Stephanie and I am a parent of a 6 1/2 yo born with SSD due to ANSD (Auditory Neuropathy Spectrum Disorder). My son is supposed to have his surgery next Monday, the 28th. My husband and I have been on and off the fence about having this procedure done. Right now we're heavily leaning for it, but we're worried that he will not learn to "hear" and understand the context of speech, and no one can give us any answers. All we hear is "he may learn to understand speech if he is a good user of his processor." I understand that EVERYONE is different and their journeys are different, but I'm wondering if there are any other parents of kiddos like ours that has ANSD and a CI? If so, what are/were you experiences thus far? ANY info or advice is much appreciated!!!! I am a 1st grade teacher as well, so ANYTHING I/we can do to better help him and prepare him for school will be a plus as well! THANK YOU ALL IN ADVANCE!! 🤗 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted June 22, 2021 HearPeers Heroes Report Share Posted June 22, 2021 @SStone welcome to HearPeers! Have you reached out to your regional Med-El US consumer engagement manager yet? You may find that very helpful. I do not have any personal experience with ANSD and CIs but will be happy to discuss how to help your son learn to listen with his CI after activation. Wishing your son the very best. Quote Link to comment Share on other sites More sharing options...
SStone Posted June 22, 2021 Author Report Share Posted June 22, 2021 Thank you so much for your reply! We have done a Zoom meeting with someone from Med-El. She was very helpful with info about the CI, it just seems that there isn’t much or any data for the ANSD side. We’re hoping this will help him with much hard work and patience. Thank you again, and we look forward to reading more helpful hints for CIs as we go along this journey! Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted June 22, 2021 HearPeers Heroes Report Share Posted June 22, 2021 @SStone I’m sure you have probably seen this https://pubmed.ncbi.nlm.nih.gov/22284837/ Quote Link to comment Share on other sites More sharing options...
SStone Posted June 22, 2021 Author Report Share Posted June 22, 2021 We have seen this article, but thank you so much for researching and helping us!!! 🤗 Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted June 25, 2021 HearPeers Heroes Report Share Posted June 25, 2021 @SStone I am sending you a private HP mail message. Go to the top menu and select the envelope to view it in a moment. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted July 18, 2021 HearPeers Heroes Report Share Posted July 18, 2021 @SStone https://blog.medel.pro/auditory-neuropathy-spectrum-disorder-ansd-cochlear-implantation-in-children/ Quote Link to comment Share on other sites More sharing options...
SStone Posted July 18, 2021 Author Report Share Posted July 18, 2021 Thank you, MaryBeth!!! 🙂 Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
Sarwar kashem Posted July 26, 2021 Report Share Posted July 26, 2021 Thanks a lot Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
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