Hi everyone. Just joined this group hoping to continue my research into Chiari and hopefully be able to gather enough information to advocate for myself.
Last week I was admitted to hospital with new onset numbness, tingling and loss of strength in my legs and arms. They ran a bunch of tests including a lumbar puncture and MRI. When I was discharged from the hospital they told me the cause of my symptoms were undetermined and to follow up with my family doctor and have him refer me to a rheumatologist. The symptoms lessened but I’ve still got numbness and loss of strength in my feet (unable to drive and do much) and ongoing variable tingling in my legs and arms. I also wound up with a severe lumbar puncture headache (or so they say is the cause of it) that doesn’t want to go away.
They gave me a discharge summary that detailed the MRI findings and to my surprise it said a Chiari Malformation as well as a syrinx. So I started researching and while scary, I’m also relieved in a way that there is something wrong.
For years I’ve suffered from pain, horrible headaches and severe fatigue. I was followed by a rheumatologist off and on as it was assumed to be an autoimmune condition despite blood tests being negative for Lupus (which is what they treated me for since 14…I’m now 31). It’s been 2.5 years since I last saw one though.
I saw my family doctor today to follow-up and he was great. He was concerned with the findings as well and was perplexed why I was never seen by a neurosurgeon while in hospital (apparently I’ve also got a small aneurysm that was not included in the MRI summary given to me that). He is going to send a referral to a neurosurgeon but it’ll likely be months until I can get in (Canadian health care system ). In the meantime he’s going to send me back to a rheumatologist just to rule out things.
And for my part I’m going to keep researching and learning from all your experiences. Thanks for welcoming me into the Chiari world. I think being here will help me navigate the journey.