I learned that time has a way of surprising us.....and that we can begin to feel better post op.....
Chiari has so many sides to it , I am not sure I have seen them all yet......meaning all the xtras members r dealing with post op...PTC, seizures,slump etc......
instead of others that I know outside the forum I will mention those that come to the forum...others means other chiarians- too many r quick to listen to ne NS that offers surgery seeing it as a "fix" when many times it leads to more issues...I beg u to research several chiari drs b4 making a choice......be open to hear what those that have gone ahead of u have learned by their mistakes...and positive outcomes.
I have learned that we have to become our own advocates for anybody to take us seriously.
Why Why Why its just not fair, its unjust and down right disgusting.
what i have learned about chiari is that it comes in costumes of many colors, comes without invitation, warning or notice and takes what it wants.
what i have learned about myself is that i would have made one heck of a radiologist!
what i have learned about others, ie..doctors, is that they have tunnel vision and see only in black and white. that in order for them to help me, i must first do my research, diagnose my problem, convince them that they are wonderful to have thought of it so i can get the tests i need to confirm the diagnosis and then pay them money for my efforts. what i have learned, is that i am in the wrong profession!
I am having a chiari moment...when I remember what I was going to say...I will post...in the meantime, I hope others have revaluations...
ABOUT CHIARI: It is the most misunderstood and miseducated diagnosis I have ever come in contact with. It can be responsible for so many different symptoms, but it takes a specialist to realize that. Though the diagnosis was a mystery, shock and unexpected blow, it defined so many things that were going on with my body, that I thought was me being lazy, not caring and simply stress pain. I thought everyone else was going through this too, and I just wasn't handling it as well.
ABOUT ME: I have learned that I can give in to meds if they are going to help me. Something I have struggled with all of my life. Not a good pill taker. I have learned that neurosurgeons aren't God and that I have to be in charge of my own healthcare. I have learned that my body is never going to be the same pre Chiari onset of symptoms and I have learned that fighting rest isn't going to help me or my family. I've learned to not go into detail with others about my symptoms...it causes frustration on my part.
ABOUT OTHERS: They don't understand...they simply don't understand. If they ask how you are doing, and you start to tell them, I find you lose them in the first 15 seconds. haha.
about chiari...just when u think u understand it...u turn a corner and find u r totally confused.
about me- if I really need to, I will take meds.....but I still don't like it.
others around me- there r some that will never understand bcuz they choose not to.