Hi, I am Rosa and I was diagnosed with Arnold Chiari Malformation in November of 2011. I have been suffering with symptoms for years with out a proper diagnosis and when I received the news I was taken back. Over the past few years I went through a lot all of which contributed to making me worse. My mother died and I was under so much stress that I did not know what to do with my self. A year later my father died and my symptoms worsened. When I went to the doctor they did so many tests and finally were able to tell me what I had. For those who don't know Arnold Chiari Malformation is a rare abnormality in your brain that causes part of your brain (the cerebellum) and brain stem to extend into your spinal canal. This effects everything from my sight to my loss of motor controls. I already have vision and speech problems, headaches, neck pain and weakness in my arms and legs. My balance is worsening. The doctor told me I was the worse he has ever seen. They told me that I would need surgery and soon. I need the suboceipital craniectomy c1 laminectomy duroplasty for chiari malformation.
Every day is a struggle. I love to play with my grandchildren and now I can not. I am not allowed to laugh, sneeze , cough, bend down, tie my sneakers, clean, or anything that can possibly cause pressure to the brain. Its hard not to be able to do anything because I am in fear that it can cause me pain again. The type of pain that is so bad that it will make you pass out. I looked into the surgery and even though it is bad I want to be able to interact with my family not just sit on the side lines and wait for nothing.
I wouldn't usually ask for help with problems like this but when I called my insurance they told me that they will not take anyone who is not in network. That makes my choices very limited since there are only a few doctors who handle my condition. Who knew HMO's sucked. I won't be able to handle any of the copay's deductibles and other expenses from the surgery being that recovery time will be from 3 months to one year. It's just to much for me.
I am not asking for much just Another Chance at Life!
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