Now I live with a different kind of the same fear. How will this affect her life? How do I help her deal with this? How do I send my baby off to brain surgery? Will the other two eventually start having symptoms, too? What do I say to make her feel better on those days when she's scared or hurting? I don't know the answers. It hurts me to watch her struggle to grip a pencil because her numbness or weakness is in her right side. I have to fight back tears nearly every time she comes to me with a rapid heart rate, or headache, or "my foot feels like it's not there anymore, " or her eyes feel funny, or her neck hurts, or she's falling down because her balance is off, or she can't remember how to use a chair, or she's trying to tell me something funny and her words get all tied up, or.....her list of symptoms is growing so fast that I have to write it all down. Why am I sharing this? Because, people don't get it. This is our life. I don't want anyone to ever feel this feeling that I've lived with for the last 6 years. I don't want another mother, another wife, to sit in that exam room and hear this diagnosis. I want people to be aware that Chiari exists. Chiari doesn't play alone- it likes to bring it's friends.... Sleep Apnea, Arachnoiditis, Basilar Invagination, Ehlers Danlos syndrome, Hydrocephalus, Intracranial Hypertension, Scoliosis, Tethered Cord, Syringomyelia, loss of lordosis....just to name a few. We need awareness for Chiari and Syringomyelia- all these disorders that go along with it. We need research. We need to educate more medical professionals. We need support. We need to learn how to prevent this. We need a cure. As far as surgery is concerned? It may help slow progression, and some people may no longer have agonizing symptoms, but please please please understand that decompression surgery is NOT a cure!







































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