Large Vestibular Aqueduct Syndrome LVAS, also known as Enlarged Vestibular Aqueduct (EVA) is. This is what Sean has and unfortunately causes several issues with hearing. Hearing fluctuates (day to day, hour to hour), hearing is progressive, and any bumps to the head, ear infections, or changes in barometric pressure can cause a drop in hearing. I guess we can say that it's been a blessing that Sean's hearing has been wiped out, requiring him to get CI's now. In addition to hearing loss, LVAS/EVA causes vestibular issues...balance, vertigo, and tinnitus. Another part of this RARE
Thanks to technology I have been in contact with a NC family who's daughter also has LVAS/EVA (Enlarged Vestibular Aqueduct Syndrome). We met online through the LVAS/EVA support group. Sarah is the same age as Sean and is doing very well with her hearing aids. It's been great having another mom to talk with who totally gets the frustration of having a child with hearing loss, due to LVAS/EVA. While in Greensboro, NC at our family reunion, we had the pleasure of meeting face to face and boy were Sarah and Sean awfully cute together! LOL!
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