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maryella7 (@maryella7)

Klippel Feil Syndrome: Ear molds and getting a good fit

Hearing Loss | Last Active: Mar 31, 2020 | Replies (30)

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@imallears

@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

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Replies to "@maryella7 Hi Mary, I am also a Mary and have never heard of this syndrome ...."

Hi Mary,
Thanks for reaching out. It seems like you have some common sense ideas about keeping up with ear mold fittings. It would never have occurred to me to get a new fitting every few years. My hearing loss is in the moderate to severe range, so the open fit with vents would not work I believe. I am working with a hearing aid dispenser, HearInc., primarily because I have purchased aids from them before. The BTE will either be Oticon or Resound. Leaning toward Resound. This time I did not test a Phonak. Phonak Marvel is supposed to be the latest and greatest.
Now for my left side where I have Atresia, I am a candidate for BAHA. I found a renowned outfit the Lippy Group in Warren, Ohio. Everything was moving along until the advent of COVID-19. Despite the new waiting time – I haven't received word – I am real excited about the Oticon Ponto BAHA because the simulation was such a success. Thoughts, comments welcome. I haven’t found a syndrome support group yet. Years ago, I think I found a European group and lost track of the information. Have a good weekend, Mary

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