MattK91 Posted March 10, 2019 Report Share Posted March 10, 2019 Hello everyone, I am a father of a daughter who was born (at the time) with severe/profound hearing loss after the Hospital and follow check up tests with an ENT specialist. She is currently 17 months. She has a hearing aid on the right (she can hear 0-25 dB with it and 65 without) as of recent tests and she was implanted in November on the left side. She suffers from a malformation of her inner ear so the cochleas only make about 1-1.5 turns instead of the typical 2. We had some complications, post (and worry) surgery with swelling and then RSV and an ear infection shortly after being implanted so we kept the aid and the her hearing device off until about January. She had fairly severe swelling but the doctor was not concerned as she showed no other signs of infection. Most recently we began noticing right where her CI is, she began to develop some soft redness. Also, the scar area that goes down her ear where they made the incision is slightly more red than it was even when she had a lot of swelling from the virus's she was fighting. I feel as though the redness has become more inflamed and has spread a little bit. I'm obviously worried about meningitis as she is now at a permanent risk having the CI. We took her in when we first noticed the redness and the Doctor advised to collect her mucus in a specimen cup but we could not gather and adequate amount to test for spinal fluid (she had quite a bit of watery leakage from her nostril at the time). The leakage has since cleared up but as I stated before, it seems as though the redness is getting more prevalent. Also, when I feel around the area - I feel some spots of what seem like her skull or bone protruding a bit. She doesn't seem to be bothered when I touch the area but I've been trying not to touch it as much as I can and it's also hard to tell with her because she's been teething and hitting a growth spurt I believe. Does anyone have some insight that might provide useful other than what the Doctor has given us yet and also some information that might point to what this recent cause of inflammation and redness could be and maybe to clear some of our worry. We're going go to schedule a follow up visit but the Doctor has stated he does not want to puncture the area to try and drain any fluid that might be in there because of the increased risk of infection. I've attached some photos for reference! Sorry for the long post. Thanks everyone! Quote Link to comment Share on other sites More sharing options...
MattK91 Posted March 10, 2019 Author Report Share Posted March 10, 2019 Edit: Please note the magnet does not make contact with the area in question. It sits slightly up and to the right of the implant itself. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 10, 2019 HearPeers Heroes Report Share Posted March 10, 2019 Hi @MattK91 I wish your daughter the very best with her CI. We are not doctors. That looks very sore to me and I would suggest contacting her CI team. They usually have someone on call. Maybe there is a way for you to show the doctor on call these photos? Please let us know how things go. I am hoping for a quick solution for your daughter. Quote Link to comment Share on other sites More sharing options...
MattK91 Posted March 10, 2019 Author Report Share Posted March 10, 2019 2 minutes ago, Mary Beth said: Hi @MattK91 I wish your daughter the very best with her CI. We are not doctors. That looks very sore to me and I would suggest contacting her CI team. They usually have someone on call. Maybe there is a way for you to show the doctor on call these photos? Please let us know how things go. I am hoping for a quick solution for your daughter. Thank you for the regards! We have contacted the Doctor once when the swelling and redness began and he only mentioned that all we really could do is test for spinal fluid. He did not seem too concerned at the time. We are scheduling another visit soon! Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 10, 2019 HearPeers Heroes Report Share Posted March 10, 2019 Good luck @MattK91. That looks very sore. I hope her CI team can resolve it quickly. Quote Link to comment Share on other sites More sharing options...
MED-EL Moderator Posted March 11, 2019 Report Share Posted March 11, 2019 Hi @MattK91, we've sent you a private message about this. Kind regards, Verena Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
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