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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,
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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Replies to "@maryella7 Hi, Earmolds shrink over time. Molds also stretch out the ear canal over time too...."

I like your DIY approach and your audi’s cooperation with your requests. I am learning here. Tubing and vibration can affect Sound quality? I will inquire about a tone hook and look it up for myself. And I did receive a confirmation today on my BAHA insurance request. It has been approved. I am stoked! Thanks for your help and information, Mary

This is extremely interesting to me!! I was told that I had abnormally small ear canals due the the Klippel Feil; but due to a recent ( I think but now am wondering) brain tumor and radiation, I have a great deal of ear wax coming especially from my right ear ( this may be because it is the side I lay on most. It seemed to have worsened after radiation. Where are you getting the tubing and how was it diagnosed?

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