Klippel Feil Syndrome: Ear molds and getting a good fit

@julieannarcand
A PS to the above...there is another Mary @maryella7 ....that I believe you have me confused with. And I thought I was the only Mary ......😄
FL Mary

Hi Mary: I have the same problem. Tried several places but they just don't fit in
my ear canal. They just keep poping out. Cant participate in conversations as I cant hear what is being discussed. Mary Lou

Hi Mary; so good to hear from you. I was raised in upper Michigan by an alcoholic marine Corp father!! Work work work was the order of the day. It wasn't until I was married and had to have a c section with unknown complications giving birth. Thankfully, I gave birth at the University of Washington's medical school and they looked further into the complications and found the severity of the Klippel Feil. I was immediately put in a halo brace ( FULLY AWAKE!!!!!) and had multiplie surgeries! I'm actually in the text books as such a rare and severe case.

I truly am thankful that it was found later in life because there simply were no hospitals or physicians capable of doing the delicate surgery in the upper mid west and I had parents as you described that basically said I'll give you something to complain about!! So I just stopped complaining of the severe headaches and inability to move my neck in certain ways that caused what I can only describe as electrical pain. Now we know that having no odontoid was causing the electric type pain and any fall or car accident could have killed me immediately.

I have been through radiation for thr tumor however it has not shrunk at all. It is an atypical meningioma ( that is what they think as it is in such a difficult location that I cannot even get a biopsy). Normal meningiomas can be dangerous due to their location as mine is; however typically they grow very very slowly. If they grow so slowly they call them benign. Mine is growing faster than the typical meningioma but not so fast ( thankfully) that I still have some time before it invades the entire cavernous sinus and covers my carotid artery. There is a newly developed 3d surgical procedure that was approved in late 2019 that only 3 hospitals in the United states have the equipment. I have had my records sent to Pennsylvania but can do nothing until the coronavirus is completely over. It is difficult to live in pain all the time but I really try to look for positive things like my grandchildren ( I have 2 and absolutely adore them). Yes, I often cry myself to sleep because there are so many things that come with Klippel Feil and I've seen so many specialist who obviously want to be helpful but they simply don't know enough about Klippel Feil and the sequelae. My brain tumor went undiagnosed for so long because they thought 5he KFS was just getting so severe that it was turning into ankylosing spondylitis and that was causing the cluster headaches and swollen eye and right side of my face. So I do try to keep positive when I can!! Cry when I need to and take it day by day! Please tell me more about your upbringing...I spent 25 years in therapy. Yes, 25 for PTSD...but it truly was a blessing because I could not have coped with all of the surgeries if I had not had the support of therapy. Living with an abusive alchohol marine was probably way worse than any medical condition that I've been through! Much love and thought of kindness and strength to you! Your fellow warrior, julie

Hi Julie, Born and raised in Pennsylvania. I deal in dark humor, so I knew it was okay to laugh about your comment about your father versus your medical condition. I am a product of a father who conquered alcoholism after us five kids were out in the working world. I wouldn’t describe him as abusive. His drinking might have been hereditary. Both his father and grandfather were alcoholics. His father left the marriage when he was two so fortunately he didn’t pick up any nasty learned behaviors on how to mistreat children. Now for my mother who is still living. Mom is bipolar and Was prone to low lows and high highs. It was tough. There were times when one parent was up and the other was down. They remained faithful to each other and rode out the bad stuff. Sometimes mom committed herself to get away and be with like minded individuals and understanding helpers. Other times my mother’s family would encourage him to make her get help. Naturally it was hard to be heard in the family. When I would mention weird abnormalities to my mom, she would brush them off. I think I would benefit from therapy. I am easily manipulated. I don’t like confrontation. Which hospital in PA is it? Children are the best. I never married and snuck into a profession-public librarianship-that lets me see kids grow up and move on. Thank you for your kind words. Now I need a Viking name! Ha, ha, Mary

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

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

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!