Hi everyone
I have recently been diagnosed with chiari after years of going to the doctors and them putting the pain down to anxiety!
Just wondered how everyone copes with the diagnosis? It’s really hard trying to explain to people what it is and I usually gets replies like 'your be ok’
It’s just starting to get me down. I’m currently waiting for a cine MRI to see if they want to operate.
Thanks for reading
Not to worry, many of us go through the same way with family and friends saying you’re looking okay. We are wishing you the best and you are always welcome to jump aboard heretotalk whenever you need to vent.
It is difficult when you first receive the diagnosis. One of the things that helped me cope was that I finally had a diagnosis for all the years of aches, ailments, headaches, and anxiety. There was finally an answer to all of this when doctors for years would tell me they couldn’t find anything. So, in some sense there was a sense of closure after the diagnosis.
The next part I went through was acceptance. Possibly, that is what you are going through now. It is hard knowing you have this. For me, decompression surgery helped somewhat but I still struggle with several of the Chiari and Syringomyelia issues. Hope this helps…keep your chin up 
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Your family and friends are not the only ones.Most of your Drs. wont understand it is very rare to have this. Learn all you can about it don’t trust your Drs…You Tube videos will help and will even explain that most Drs. dont know how much this affects us they are still learning. There are chiari centers that know a lot and are helping the knowledge grow. This might help you to explain to family.They don’t understand and wonder how much you are actually knowing let them learn with you.
Let us know about the MRI results.
Hi, I have 3 cats! Do lots of scooping, vacuuming, etc, but get lots of happiness and love in return. I am 54, had issues most of my life and just got diagnosed in Dec, 2016 too. Your lucky you have an answer so soon! Now you can take better care of yourself…be careful with straining (constipation), heavy lifting, crazy whipping rides, sports that could cause head/neck injuries, etc. I did not know I had this and continued to do activities (head banging dancing, cutting down trees, shoveling, dry walling, putting up a fence, motorcycle riding etc.) that made my condition worse, caused more pain, damaged my nerves, 3 bulging C-discs. If I would have known years ago, I would have been more careful and may not have needed surgery, which I have not had yet. I had a C-section with my first child due to toxemia, preeclampsia and Hemplegic migraines. With my second child, I did lots of pushing, which is a bad thing for Chiari patients. An early diagnoses is crucial for women giving birth.
I am so glad I found this website. No one really wants to hear my problems and complaints. They ask sometimes what’s wrong, but don’t really listen. They tell me to stop reading about it in the Internet…you know everything you need to know, move on and get over it (like its going to go away), stop thinking about it just get on with your life, your obsessing, etc. Two weeks ago I emailed my family and husband’s family a video with my Neurosurgeon speaking about Chiari, only one family member (niece) responded and asks some questions. My 3 kids didn’t even respond, have 4 and 5 grandkids. I felt hurt and very sad. This is why we need this website!!! Take care, talk to you soon, Tina from Wi.