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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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Hi; thank you for inviting me into the conversation. I have no odontiod process ( the bony pin like structure that sits on the 2nd vertebra and allows the first cervical to rotate. This caused severe pain and numbness (and could have easily caused death) before they screwed C2 up through C1. Other cervical vertebrae were abnormal, malformed or fused requiring 7 spinal surgeries. I had abnormal cervical ribs which caused a painful thoracic outlet syndrome (removing these were the only surgeries that alleviate pain) for which I am thankful. I have what is called a wandering p wave in my heart. I'm wondering if anyone else has this or other heart problems?? It causes tachycardia and a very high pulse at times. I also have abnormal shaped kidneys that I am thankful are not bothering me. I was recently diagnosed with an inoperable brain tumor in the right cavernous sinus surrounding the carotid artery and sitting on the optic nerve ( they do not believe this has anything to do with the Klippel Feil) however I was diagnosed with Klippel Feil at 25 and am now 53. My heart condition is worsening and I wonder if anyone else's is due to age? And my doctors have diagnosed ankylosing spondylitis now due to age and the advanced Klippel Feil which comes with an autoimmune component. Does anyone else have this. Interesting reading about people's ear issues. I was told I had abnormally narrow ear canal due to the Klippel feil but after radiation for my brain tumor I feel like I I literally have to sleep double pillow cases! It seems my right ear is constantly oozing. Sorry to be so gross but I don't know if that is an issue from radiation or Klippel Feil. It has been a journey that's for sure
One other thing that I wanted to ask especially in light of the coronavirus: with each surgery and I've had 10 total I had to be intubated awake because I have no range of motion. I have to wear a medical alert bracelet to warn the medical community that I cannot tilt my head at all. Do you have anything like that??
Thank you and so much love for you all! Stay safe out there and thank you again for including me!!
Julie Arcand

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Replies to "Hi; thank you for inviting me into the conversation. I have no odontiod process ( the..."

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

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