Arnold-Chiari Malformation Support Group
Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.
I have tons of symptoms and after almost five years seeing neurologist. And being told sometimes things happen and you just have to live with it, or my favorite so do you like the attention you get when your sick. I have been treated for everything under the sun, take this drug that drug ect I was told I was having strokes I said well I have this about 20 times a day you would think I would have so much scarring on my brain I would be dead. Had to get very loud and unruly to get a referral to a Neurosurgeon. 3 seconds in his office he showed me on my MRI that I had chiari then wanted to know why I waited so long to see him it causes extensive nerve damage. Does anyone else have these symptoms headaches on the back of the head the kind that make you wish ya were dead sometimes for 27 days straight nothing takes it away. Neck pain the kind that hurts so bad you constantly feel like your gonna throw up.intense pressure in your head ears block up but very sensitive to sound eyeballs feel like their being crushed feels like bugs crawling on the back of your head and numbness on the entire left side of my neck and face including my tongue. Loss of taste. Sharp shooting pains threw the sides of my head, neck is popping and snapping constantly. I can here my heartbeat in my head so loud it drives me crazy and a swooshing sound. Intense pressure in my back feels like my spine is being ripped out and breathing is very hard cause the pain is incredible.huge memory loss. Black out, drunk days, blurry vision looks like everything is vibrating or a thick pea soup and I can only see outline double vision. Involuntary movement of hand arms legs and feet hot burning patches of skin like if you look at it your expecting to see your skin melting off. Different parts of my body vibrate. Horrible hand eye cordnation, can't look up or down without excruciating pain. Days when I feel like I am extremely drunk bouncing off walls slurring words black outs I don't drink electric shorts that go down my arms and into my hands with a huge zap that opens up my hands and if I am holding something I dropped it. Extreme weakness loss of feeling in my hands, I cant regulate my body tempature I overheat especially if I do dishes take clothes out dryer cook or be in the sun I get the shakes real bad and have passed out and woke up in my own vomit. I have had a reversed shoulder replacement on the left a knee replacement on the right. My arm is pretty much useless and my knee is worse now then before. I was fighting for my disability for 4 years after I became homeless sold everything I had I lost everything they finally gave me my court date. I have a chiari depression surgery march 30 th. The neurosurgeon doesn't think it is going to help to much because of all the nerve damage but with the surgery I won't die of a anuresum like my mother and my father did. And I won't go blind like my dad. I was told theirs no proof its hereditary but both my parents and my little sis all had or have it. The s.s. office treated me like I was a person who wanted to live off the system and to lazy to work. I have a solid work history since I was 16 until 42 years old most times working 2 full time jobs at 1 time. And weekends I worked on a farm or fixed cars poured concrete or later cement block. I was lead assistant manager of housekeeping at LA beau field for 11 years and had to quit because of this. I loved my job if I could work I would they keep calling wanting me to come back. I feel useless and have depression. My entire back is shot my hips SI joints I only get 3 broken hours of sleep a night because of the pain I can only sit stand and lay for a short period of time. S.S office thinks after I have the surgery I am going to be good as new and be able to work. They should walk a day in my shoes they would be begging for it to end. Plus I have more symptoms is anyone else suffering with the same thing and just existing instead of living. Sorry for the book but I need to let out my agencies with people who understand where I am coming from.