I just read on my Chiari blog a mothers plea to spread awareness. Her daughter was in a car wreck and passed away today because the EMTs were unaware of how her neck and head shouldve been handled. We can wear the bracelets, but without the awareness being raised, especially in the medical field it does us no good. Small bumps, bangs, falls and wrecks can be deadly to Chiarians. This video shows a quick rundown of what Chiari is. Watch and share. Hopefully itll reach the people who need to know what this disease is and that there are certain ways they have to be handled in these situations. Thank you. (Im so sorry to bombard my page with Chiari stuff. I have it, I have an aunt who had the surgery years ago and was a pioneer for others in our family and I have an older sister whom I love & adore and hate to know that shes been fighting this battle for over 3 years (just found this out-communicate with family please! ) and isnt ready to do the surgery. Its our only option. Its not a cure, its just a way to halt the progression of symptoms and for me my symptoms were there for about 10 years. I was told it was MS 3 years ago, as it mimics MS and other diseases. My pains were very progressive over the last 3 years and it finally became unbearable. Had full spinal mris, which showed 2 herniated discs, the L5 & a significant one with bone spur in my C5. The local orthopedic surgeon acknowledged a Chiari but acted like that was the least of my worries. I was referred to the U neuroscience center to see a neuro spinal specialist for the C5. (Thank Heavens he thought that was out of his realm of expertise!) As the PA @ the U was looking over my mri the Chiari specialist of Utah went in the room the PA was in to ask someone something (which he told me he didnt know what as he got in there, but saw my neck mri and said, I need to see this patient asap 2 brain mris later and I was scheduled for surgery. Had I done the neck surgery it couldve proven fatal for me.) Divine intervention is what I call it. ;) I had an epidural injection in my lower back at my local clinic before going to the U for the L5. After that the progression was worse every day! Vision loss, constant ear ringing, electricity pain like Id never experienced all throughout my body but so severe in my upper back and neck, migraines, numbness, tingling, and barely enough strength in my arms and legs it made me crazy, paralysis, hydrocephalus among many other things were happening or right around the corner for me. My hole (foramen magnum sp?), at the base of my skull was completely corked by my cerebellum between a 1/2-1 inch of brain tissue was protruding and sitting on my spinal cord & the CSF (cerebral spinal fluid) was filling up in my brain. My brain tonsils hung down into my spinal cord causing a bunch of these symptoms (& are now gone as they cauterize them off in surgery). The only option I had was brain surgery to stop its progression. Nerves and spinal cords are very unforgiving so the level of nerve damage is usually the level youll live with even after they fix it with surgery. I feel a great deal of relief in my arms and legs and no more tingling or electricity parties in my back so far. ;) I cant say much about the head pain yet, but I think thats just recovering from surgery. I know the migraines are not the same. My vision has improved quite a bit and the ringing in my ears is gone. My right side is still struggling with strength, but I know itll get better as I keep healing. Ive developed asthma, most likely had it but the breathing tube may have made me more sensitive to it. So theyre now treating me for that. Ive come a long way in a short time because I have an awesome brain surgeon, Dr. Schmidt and I have the most caring, loving and thoughtful family & friends who have taken such great care of me. Im truly a very blessed girl! :) If youre reading this then thank you from the bottom of my heart for being supportive of me and being my friend! All my love to all my loved ones! :)
Posted on: Fri, 17 Oct 2014 05:21:38 +0000