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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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@maryella7

Hi Colleen, For me, KFS has presented in the following ways: Situs Inversus (internal organs are reversed); Scoliosis – again reversed (left not right); two missing neck vertebrae; slight cleft palate, small jaw; myopia; blephritis (sp?); microtia; and, maybe stunted growth. The situs inversus since it wasn’t treated may have led to a twisted or flattened diaphragm. I have bronchiectasis which is monitored by lung function tests and year-round meds and inhalers I take on an as-needed basis. It would be nice to hear from those members you mention. Thanks! Mary

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Replies to "Hi Colleen, For me, KFS has presented in the following ways: Situs Inversus (internal organs are..."

This is very interesting. I have what is known as mirror movement in my hands. I can actually use both hands to write my name and if you put the 2 papers together they match up: one hand is writing backward the left while the right is writing normal!!! They always said it was from Klippel Feil. Fortunately, I can control my hands and arms from simultaneously moving however not when I was more intricately tested for my brain tumor. Both hands just did the same thing. This surprised the neurosurgeons until they looked into the many anomalies that accompany Klippel Feil syndrome!

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