- CASE FILE
I was misdiagnosed and treated for MS, when I really have a Chiari Malformation that is wreaking havoc on my body and affecting my life
ABOUT THIS CASE FILE
I was misdiagnosed with Multiple Sclerosis back in September of 2015 after several years of significant decline and no changes to my MRI images. My Chiari Malformation was brought to attention as an incidental finding on my first MRI at the age of 31. I was erroneously told for years that a Chiari Malformation does not cause any symptoms and is something that I do not need to be concerned about. I have a Chiari Malformation with 19mm tonsil herniation that is causing major issues with my body and in the process also damaging my spine with syrinx’s. My symptoms are all over the place as my condition is where the brain is literally falling out of my skull. Very little is actually known about this condition in the medical community unless you see a true Chiari Specialist in which there are only about ten in the whole country. I suffer from Skull crushing headaches at the back of my skull that include so much pressure that it’s like my eyeball is being pushed out of its socket, numbness in the entire body, chronic pain through out my body, issues with cognitive, function, weakness in entire body, can not tell temperature variations, can not regulate my temperature, subluxations in the joints, chronic fatigue, muscle spasticity, issues with bowel and bladder, heart rate fluctuations, issues with neck and shoulder pain from chronic spasms in my neck, pins and needles feeling in the hands and feet, balance issues, hypermobility in the joints, can not tip my head back without a strange fluid surge feeling, heavily affected by the weather, shakiness. The only treatment for this condition is a type of brain surgery and it will not cure me, it just aims to slow the rate of decline. I found a doctor who is well versed in Chiari Malformation and he determined that I need to have this surgery before any more permanent damage is done, however because I have state health insurance they will not cover me going to another state to have this surgery performed by a specialist. Instead they wish that I have a local doctor who I have seen before and said that I don’t need surgery to perform the surgery. This is a delicate procedure and even with a specialist things can and do go wrong such as CSF leaks leading to further surgeries, brain slump, and meningitis.