@maryella7

Hi Mary,

I am also a Mary and have never heard of this syndrome . So I went online to learn something about it and learned that hearing loss is often a result of the syndrome. You do have an ear canal but the shape is making it difficult to fit molds. I am assuming the molds are a soft like acrylic material. Can I assume the outer ear is a normal shape? Who are you getting your aids from, an ENT practice , a private Audiologist or from an audiologist in a clinical setting.

I can imagine your discomfort and molds are so important for the best hearing options. I have had my molds adjusted over the years and I prefer them to reach as much into the canal as possible. The Audi I work with now has sent the last mold back numerous times to be redone until it was the best choice for me. I’ve had molds taken with and without the mouth open which changes the shape.

How much of a hearing loss do you have? The reason I ask is if an open fit molds would be an option or even an CI without molds . I have a friend who has a CI that doesn’t require a mold. I can’t imagine the labs that do the molds have too much experience with “unique” shapes of ear canals. I often wish I could go to the labs that make the molds and, after they do the initial mold, sit there with them and have them either buff certain areas for a better fit or explain face to face what the problem is. Wish they could actually see xrays of the inner ear in addition to have the prototype.

Are there any support groups online with this syndrome where you could connect with other people?

FL Mary