Hi everyone my 13yr old daughter was diagnosed with Chiari 1 8mm descend this week after a year of severe dizziness, fatigue more recently severe neck pain, back pain and arm, face, leg pain, pressure behind her eyes, hearing loss that comes and goes, ringing in the ears. Like everyone i have been doing extensive research because i need to have as much information i can as we move forward to fight this. Its crazy how all the pieces are coming together now, my daughter has been complaining about back pain since she was about 6 of course we did the pediatrician, orthopaedic but nothing came of it now it makes sense. I have a few questions if anyone can answer it would be greatly appreciated.
My daughter gets pain that comes on in the blink of an eye, last night she was laughing and asking to go for ice cream one minute the next she was in my bed crying in pain from her back, she has a hard time describing the pain and i feel so helpless is there anything at these times i could do for her to help ease the pain? What causes this severe pain and why does it come out of nowhere?
My daughter has always been so flexable and what we always called double jointed now i know its called hypermobility, she can bend her fingers all the way back, twist her arm to crazy angles. She also has flat feet and a small palate which is requiring all sorts of orthodontic work. I know this can be some how related to Chiari but looking for some more information.
She has chronic croop which always surprises the Dr.s since this usually goes away when they are little. This year was terrible she got the croup cough at least 7xs lasting 2-3 days at a time. Could the croop be a symptom? Does this cause you to get sick more often?
We have an appointment with a neurosurgeon on June 9th who takes a special interest in Chiari 1. We live in NJ so i was wondering if anyone was close and have any recommendations for Dr.s. There is also a Chiari Center in NY but I have seen they have centers in other states, has anyone ever been to one?
Thank you all for taking the time to read this.
Denise