Always feeling like something is wrong & finding out something will always be wrong are very different from each other. Never feeling 100% was was awful but knowing I can never be 100% is well, emotionally straining.
Chiari doesn't just affect your brain, it affects your body, your emotions, your life. Sometimes you wonder if you are crazy because the doctors, friends and sometimes even family look at you like you could be. You can easily feel all alone. From the outside, you look completely normal. On the inside, you are miles away from normal.
The only thing that keeps you going is the strength of those who truly love you and your own determination and faith. There are many emotional steps one goes through from the time symptoms start appearing to recovering from major surgery. Most likely, it will be never-ending.
When symptoms first start appearing, there is confusion and concern. Due to the lack of knowledge of Chiari, the number of symptoms, and how differently the symptoms can affect someone, it is easy to be misdiagnosed. This leads to incorrect treatments, if any are given at all. Misdiagnosis can lead to frustration. Eventually, Chiari is properly diagnosed, but it can take months if you are fortunate, otherwise years. Once you are diagnosed, shock and fear kick in. You are mentally paralyzed. Frantically, you begin to research what it all means. Once all research avenues have been exhausted, acceptance starts to set in. However it is never accepted 100%. You see, learning about Chiari is learning life-long limitations. No one like limitations.
Once you accept being a Chairian, you can begin to move forward and live again. While most surgeons won't provide any treatment for just Chiari, they will when Syringomyelia is present as well. It is a cavity in the spinal cord, in which CSF is pooling. This can lead to physical paralization. Surgical treatment for Chairi and Syringomyelia is Posterior Fossa Decompression with C1 laminectomy and duraplasty.There are zero guarantees this treatment will change anything, but it provides hope. Hope for improvement in quality of life. Thankfully for most Chairians, the surgery is a success and the symptoms are either reduced or completely gone. The limitations are never gone, but the quality of life improves.