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Eventually in 2005 I was diagnosed with Chiari (I was 37) and under went surgery. I was also told that I had syringomyelia. My symptoms where always diagnosed as Depression and though I kept telling my GP I felt fine, I was ignored. I think this happens to many people with this condition. Also since having surgery, people think I am now healed and over it, yeah right. My body is still damaged and as my neurosurgeon said it was not a cure it was prevention surgery.
I burn myself in the bath as I am unable to tell that the water is hot, or I find that it is not to the tempature I can feel, so it is extremely hot, but not too me. When giving birth to my children, I could not feel the reaction to push, I felt the contractions but the body couldnt react to pushing and I had to be told when to push - not enjoyable. I described to many people that I had monkey arms - I knew I had arms as I could see them, but I felt like I dragged them along with me.
I've lost most of my teeth, its like the body is too weak to maintain them, even brushing regularly etc, I have very weak teeth, speech comes and goes, you know what you want to say but often it comes out all wrong or you stumble over your words, not so much of a stutter you just slow down in talking.
Emotionally as well, I seem to be up and down and describe it like a roller coaster. I get very frustrated as I want to read etc but find concentration hard, am effected by light sometimes too bright other times too dark.
Due to a spinal problem as well I find sitting difficult as I tend to lean to the left in most chairs.
But I think most people with this condition suffer from the fact that most of our symptoms are hidden, we look normal, we dont look like we have problems, pain or difficulties and are often ignored or dismissed.
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