Klippel Feil Syndrome: Ear molds and getting a good fit

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!

@julieannarcand
Good morning
I’ve gotten extra tubing from my Audi or ordered it online from places such as Westone or Oaktree. There are many online suppliers of hearing aid accessories and batteries and you can shop around for good prices. I’m not sure if you are asking me if how my hearing loss was diagnosed.

FL Mary

Hi Mary; I'm glad you are able to get the things you need for your hearing! But yes, I was wondering how you were diagnosed and does it relate to Klippel Feil? Stay safe out there!

Hi Julie, My neck rotation is okay turning right, very limited turning toward my scoliosis side. All that you have gone through as an adult gave me great pause. You have been through so much more than I have. I haven’t had medical intervention other than a palate surgery and eye surgery as an adult. My Childhood surgeries were the reconstructive kind on my right ear. I’m sure each family is different. My parents did what they could. My mother refused intervention on my spine. I used to getting racing pulses, but I forget what prompted them. My heart is positioned under my right ribcage. I had a gallbladder surgery scratched due to intubation difficulties. I used to wear a Medic Alert tag around my neck re the situs inversus. You have made me aware of the issue I share with you regarding range of motion. I should be more mindful. Every second counts. How often will you be monitored for the tumor? Is it shrinking? Thank you Julie for sharing your story and current trials with me. I am holding you in my heart. XO, Mary

Hi Julie, I was diagnosed by a spinal surgeon 10 or 15 years ago when I was in my forties.We didn’t get to the treatment plan part. I turned tail and ran. Too afraid to face the prospect of missing work, putting others out. I inherited a workaholic credo from my family. Work over self. Sad. I hope to put that behind me. Mary

@julieannarcand
Hi,
Sorry for the misunderstanding but I don’t have Klippel Feil. I was merely responding to the posts about hearing loss and problems fitting molds.

FL Mary

@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

@julieannarcand This Fl. Mary is a wine conesuer

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 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