I have a son and daughter that have been diagnosed with a Chiari and syringomyelia. My 17yo has low lying tonsils at 3mm. They are testing my other children and it is suspected they have eds as well. I pass the many things on the eds criteria so I went to a neurologist in the same clinic as my kids. (Their doctor only works in pediatrics.) She didn’t listen to anything i had to say. She told me EDS was just a lifestyle change. She did order a head mri for headaches but she won’t do anything farther despitemy family history. But I told her about the 24/7 ringing in my ears that was driving me crazy and I keep having these muscle twitches. First it was just my eyelid. Then I’d get them in my thigh. Then my butt. Then my arms and now my cheek. I notice them when I’m sitting or laying still. They happen frequently and every single day. She told me it isn’t a symptom of chiari or syringomyelia. Am I being iver paranoid? She said chiari isn’t hereditary that she knows of. I’m going to send a message to the kids doctor to see if he can recommend someone. He does take things more seriously.
That sounds like an excellent idea, to see if your pediatric specialist can recommend someone. Even if everything that she said is correct, it sounds like she is not the doctor that you would ideally keep saying. And while she’s technically correct, that EDS is something that can be managed, but not cured, it’s the wording. By the way, we also have an EDS support group here. I’ve seen a few people in both groups, Here’s the link to the EDS group. https://www.ehlersdanlossyndromesupport.org/
Sharon from ModSupport
Hello, been awhile since I been on here but ask about “Myoclonus”. I have the same twitching but in my case I suffer from partial complex seizures. The seizures is what led into finding my chairi. I have anywhere from 5-10 on a good day. I’ve kinda gotten use to it, but at times they hurt. Hopefully this helps.
Also don’t let anyone tell you what’s going on is not part of chiari. I work for Delta assisting Shepherd Center patients and I’ve meet some of the best dr’s out there worldwide. I went there after my surgery but everyone has said they’re still learning.