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Enlarged Vestibular Aqueduct (EVA)
My granddaughter was diagnosed with EVA five years ago and, as a result, has complete hearing loss in one ear and partial in the other. She has one cochlear and one hearing aid. We were told that with EVA she will most likely lose all hearing in the other ear as well. She has had two episodes of losing the hearing in the partial hearing ear but it came back eventually.We are braced for the complete loss, but I continue to pray she will at least keep the minimal hearing she has in one ear. She doesn’t seem to like the hearing the cochlear provides and relies on the hearing aid mostly. I’m curious if anyone has experienced this disease and if they lost ALL their hearing or kept some.
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Hi @rknee, I'm tagging fellow Hearing Loss members @contentandwell @joyces @nellyb @tonyinmi and @julieo4 on this discussion to see if they have experiences or thoughts to share about your granddaughter's hearing. You might also be interested in this related discussion:
- Parent of a deaf 4 year old https://connect.mayoclinic.org/discussion/enlarged-vestibular-aquaduct-eva/
May I ask how old your granddaughter is? How does she adapt to the hearing loss?
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1 Reaction@rknee I had to search for EVA to understand the condition. Thank goodness for YouTube videos. The only thing I can add is Don't give up on the cochlear implant. I've had hearing aids most of my life. My loss is severe to profound but I'm not a candidate for an implant yet. Most of my friends that have implants seem to hear better than me. They answer questions that I have not understood. Learning to hear with an implant takes time and improves with each mapping (the adjustments that the audiologist makes to the device).
Tony in Michigan
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3 ReactionsShe is doing great. We (her parents and grandparents) are trying to accept that she will eventually be completely deaf, but she has accepted it very well. Thanks for your support!
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4 ReactionsLike Tony, I encourage you to encourage your granddaughter to keep working with the cochlear implant. A great deal of language development takes place in the first 5 years of life. That affects reading and writing skills as well as speaking skills. Working with her in those areas now is extremely important. Strategies depend a lot on the age of the child.
How old is your granddaughter?
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3 ReactionsI'm sorry, @colleenyoung and @rknee My daughter had a mild-moderate hearing loss and started wearing hearing aids when she was four. Back then they didn't test infants for hearing loss. I really have no knowledge or input for the situation here. I, myself, am just about to have appointments to determine if I am eligible for a cochlear implant.
JK
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3 ReactionsShe is 9
I had just been diagnosed with EVA in both ears in my mid sixties. I had tested as having bilateral severe hearing loss since age 1 and was fitted with my first hearing aid at age 2. My main point is everyone’s EVA hearing loss journey is different. Mine went down gradually as I reached my fifties according to my hearing tests. I still have all tests from grade school and adulthood so I can compare them. I now qualify for cochlear implants for both sides as I am now severe profound. I plan to get a cochlear implant on the left side and wear my Oticon Exceed aid on the right. The MRI I took for the implant had shown that I have EVA which I had never known about. It cleared up a mystery why the ear infections at age 9 months damaged severely my ears at the same time. None of my ENT doctors had figured out the cause all these years. My mom now knows why and it was not anything that she could have prevented except removing my adenoids and tonsils at age 1. I think it relieved any doubts that she had not done enough to prevent the hearing loss. Hearing loss diagnosis was very different and difficult back in the fifties and sixties. I was mainstreamed from special classes for deaf and hard of hearing into hearing classes at age 8 wearing two aids and gaining my skills in lip reading and vocal words