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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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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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Replies to "Hi Mary, Thanks for reaching out. It seems like you have some common sense ideas about..."


Earmolds shrink over time. Molds also stretch out the ear canal over time too. I have 2 Phonaks Nadia’s. One of the best things my Audi did lately is to switch the regular hearing aid hooks to tone hooks. They look the same and both have filters. The sound quality was so dramatically improved I am still amazed. Everything sounded “normal” and I can understand so much better. Each brand of aid has its own hooks (of course) . Ask about tone hooks. I had never heard of them before. I have the greatest Audi in all my 40 plus years of wearing aids. My loss at this point is profound.

I should also mention that the size and strength of the tubing makes a difference too. I have extra thick tubing size 13 that does not vibrate as much as a thin tube. I do my own tubing and change my own hooks when I notice things are not the way they should be. My Audi supplies me with tubes and hooks and I have bought the tools to do the changes. I’ve acquired a lot of gizmos over time.

So….molds and fitting plus tubing and keeping those precious aids in a dry and store are important. For any ear wax that can get stuck in a tube I have a hand held bulb like blower that will blow it away ( remove the tube from the hook first. )
I heard about the Marvels also and was willing to trial them but am so happy with the way things are now that I will stay with the Nadia’s.
I’m not a BAHA candidate nor an open fit candidate. Bug them (gently) about the waiting time if possible. I know how exciting it can be. Let us know.

FL Mary

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