Im new to the group- I am 28 and was diagnosed almost a year ago while pregnant with my third child. I had decompression surgery in July where they removed the arch of my c-1 and the tonsils (which where completely dead) and had the bovine patch. I had a rough time of it and was readmitted with muscle spasms. The list gets longer and I ended up with a second surgery to repair a csf leak in November. I am not symptom free, but a couple symptoms are getting better and I have most of the strength returning in my left hand which I couldnt use at all before. The reason I am posting is my baby was just diagnosed with Raynauds Disorder. She has been dealing with choking and aspiration issues since a month old, was in the NICU, we have been aware that can be a sign of Chiari in babies. Our pediatrician is fully involved in my diagnosis now that his sister has been diagnosed with Chiari and I helped him through it and gave his sister information on it. He said because the condition is in the sympathetic nervous system- located in the brain stem- and her choking issues combined with my Chiari we may be looking at seeing a neurologist. She has an adjusted age but only by a month so she has another month to try and pull up on furniture and finish crawling. He said that if she doesnt get it or starts to regress we have to check her for Chiari. Heres mom, freaking out. I didnt even know I had this when I had kids. Does anyone have experience with Raynauds? We wont be able to do much for her until she can talk and tell us if shes bothered by it. It sounds a lot like the nerve pain I feel but from what I read it said some people dont feel too much pain? Shes so little to go through this. Shes 9 months. The pediatrician said the one advantage is that if she does have it then we are getting her help much earlier than me. She wont be almost 30 and be looking at permanent damage. But she is my baby and I should have grown her better :(
Posted on: Tue, 20 Jan 2015 09:49:52 +0000
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