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Posts (1)

Aug 9, 2011 · Chiari Malformation in Brain & Nervous System

Hey Naureen,
I am a zipper head myself. 🙂 I was dx with Chairi Malf type I almost four years ago. I know there is alot of info about tethered cord and children with Chiair but not as much about adults and Type I.
When I found out my dx I freaked out and scoured the internet for answers. Much of what I found was terrifing and brought me to tears. I was a healthy active 20 something who doesn’t even have allergies. I couldn’t understand why I had this. If you are having any feelings like this, know that it is all going to be ok. It may even be great! See now that you know what is wrong you can work on “fixing” and managing it. You don’t have to hurt all the time and suffer the headaches. While there is no “cure”, there are many treatment options. First you have to de-stress because stress is your bigest nemisis. Stress will make the muscles in your head, neck and back tense and squeeze your brain stem and nerves and in some cases cut down your CSF flow. All these things cause pain and headaches. For me I had additional symptoms; temporary paralyisis, severe constant pain, headaches, speech and cognitive issues. Set up an appointment with a nuerologist and maybe a consult with a neurosurgon to review your options for medications or surg.
I had head neck and “brain” surg just over three years ago and many of my symptoms have subsided and only on a few occasions have they bothered me since. Your pain tolerence will increase and you will become stronger and this will help you cope with your symptoms. I’m not pain free but with practice, it is managable now with out meds. I am back to being active and living a happy full life.