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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Hi Julie,
While it may not change the progression of COVID, I am looking forward to flipping the calendar to April. I pray that we see more stories of recovery than of morbidity in the next month.
I will do my best to keep my outlook on the present. I have a home. I have a dog. I have good insurance. I have food in the house. Enjoy your obligation free time. I am grateful that we are communicating and forging a bond.
Your fellow warrior, Mary

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Dear Mary; I'm grateful too!! I don't often love social media because I get stressed if I miss someone's birthday on Facebook or who knows the many things that stress me 🙂 but I truly enjoy communicating with you and I too feel a bond! Are you considered an essential worker? I'm fortunate to be considered permanently disabled ( well, I don't know how fortunate that is; but for now it is). Do you experience much pain with Klippel Feil? If so; how does it manifest? I still drive and am fortunate to have a very good relationship with my ex husband ( truly we only divorced because we both grew up in extremely dysfunctional families and just didn't know how to cope with life in general). But I have a car that has a back up camera and mirrors that blink or beeps when there is a car alongside of me. So I am very lucky there. It is raining here in the Pacific northwest as usual!! I'm waiting for a sunny day. Hope you are well and I am glad to have found you! Take good care out there, julie

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@julieannarcand

Dear Mary; I'm grateful too!! I don't often love social media because I get stressed if I miss someone's birthday on Facebook or who knows the many things that stress me 🙂 but I truly enjoy communicating with you and I too feel a bond! Are you considered an essential worker? I'm fortunate to be considered permanently disabled ( well, I don't know how fortunate that is; but for now it is). Do you experience much pain with Klippel Feil? If so; how does it manifest? I still drive and am fortunate to have a very good relationship with my ex husband ( truly we only divorced because we both grew up in extremely dysfunctional families and just didn't know how to cope with life in general). But I have a car that has a back up camera and mirrors that blink or beeps when there is a car alongside of me. So I am very lucky there. It is raining here in the Pacific northwest as usual!! I'm waiting for a sunny day. Hope you are well and I am glad to have found you! Take good care out there, julie

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I bought a new car in 2018 for the reasons you mentioned. My neck is both surgically fused and pretty much “autofused” where discs are collapsed. Some days I just couldn’t turn my head/neck to check before a lane change and it got scary. It is very nice to have such safety measures!

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Me too. Surgical ( 7 surgeries) and several from birth and malformed throughout!! 3 other surgeries for cervical rib removal and a subclavian artery birth issue tho related to Klippel feil. Very nice to have the car amenities as I cant turn my neck at all. I turn from the trunk but at 53 that is getting very sore too!! Be safe out there!!

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@julieannarcand

Dear Mary; I'm grateful too!! I don't often love social media because I get stressed if I miss someone's birthday on Facebook or who knows the many things that stress me 🙂 but I truly enjoy communicating with you and I too feel a bond! Are you considered an essential worker? I'm fortunate to be considered permanently disabled ( well, I don't know how fortunate that is; but for now it is). Do you experience much pain with Klippel Feil? If so; how does it manifest? I still drive and am fortunate to have a very good relationship with my ex husband ( truly we only divorced because we both grew up in extremely dysfunctional families and just didn't know how to cope with life in general). But I have a car that has a back up camera and mirrors that blink or beeps when there is a car alongside of me. So I am very lucky there. It is raining here in the Pacific northwest as usual!! I'm waiting for a sunny day. Hope you are well and I am glad to have found you! Take good care out there, julie

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Hi Julie, Good morning. Day to day, I’m well enough to go to work. I’m a librarian and Ohio libraries are still currently closed. Reading your earlier story, I now understand why my PCP (family doctor) just wants me to be well and never have to be on an operating table due to an illness or an accident. I posted to the moderator all of my KFS manifestations. Too groggy this morning to cut and paste. I’ll try to do that for you later. It’s cool that you can still count on your ex-husband for moral support. Cloudy here, Tree pollen count is high. Took Zyrtec last night which accounts for me “cloudiness.” Cheers, Mary

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@wisco50

I bought a new car in 2018 for the reasons you mentioned. My neck is both surgically fused and pretty much “autofused” where discs are collapsed. Some days I just couldn’t turn my head/neck to check before a lane change and it got scary. It is very nice to have such safety measures!

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Good for you, “Wisco50”. In high school, one of our juvenile pursuits was “cruising” up and down State St. in my hometown. Pretty sure boys thought I was stuck up when I wouldn’t turn their way to acknowledge them – ha. Mary

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