Klippel Feil Syndrome: Ear molds and getting a good fit

Posted by maryella7 @maryella7, Mar 26, 2020

Hi Everyone, I have an ear canal that points up and back and for that reason ear mold fittings can be very trying. For me, the Worst part of purchasing a new hearing aid-which I am doing now-is the ear mold fitting. I guess I’m writing this to feel less alone. I have never met someone with my issue. It is due to a syndrome called Klippel-Feil or Goldenhar depending on the given medical professional’s pronouncement. Give me a shout out. It would really help me out. Thanks, Mary

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Anyone know of recommendations for more information on Klippel Feil Syndrome? None of the Doctors know about it. I was not even diagnosed until I was hurt in an accident and when they did the CT scan they noticed the vertebrae were fused. I played high-school football and rugby in college. Now if they would have known I would not have made it past the physical.

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@olneyrich

Anyone know of recommendations for more information on Klippel Feil Syndrome? None of the Doctors know about it. I was not even diagnosed until I was hurt in an accident and when they did the CT scan they noticed the vertebrae were fused. I played high-school football and rugby in college. Now if they would have known I would not have made it past the physical.

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This is an unusual syndrome. Please share more about how it relates to your hearing loss.

From Google:
Klippel–Feil syndrome (KFS), also known as cervical vertebral fusion syndrome, is a rare congenital condition characterized by the abnormal fusion of any two of the seven bones in the neck (cervical vertebrae). It results in a limited ability to move the neck and shortness of the neck, resulting in the appearance of a low hairline.

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