So it’s only been a couple days since my very gauge diagnosis. They didn’t really tell me anything other than that think I have chiari. Originally I just went in for headaches…but. it seems to be getting worse? I can hardly hold my head up, but laying down causes more pain. I feel pressure in my neck and chest, and my fingers have been tingiling off and on. I’m dizzy and just feel like sleeping but I cant…
I’m not sure if this is all normal, or if I should be going back to the hospital. My pain is at about an 8 out of 10.
I’m used to anxiety attacks and i don’t think that is part of this. These symptoms just seem to be coming out of nowhere and progressing rapidly, and I’m not sure what to do.
Hi mamabear32,
I’m Kelly,and I’m new to this support group. I have been living with chiari for many years. I started having the same symptoms you have described when I was 22 years old , just after having my son. I went to the hospital and they sent me from doctor to doctor with no answers. I had cat scans I was always told that everything looked fine, they couldn’t see anything on my cat scans. It took me around 14 years to finally get diagnosed and to have decompression surgery. My symptoms have changed over the years, some have became less frequent and then I have developed new symptoms. I was very scared when all of this started happening to me. I can understand what you are going through. I hope this helps.
Hey kelly, yeah I’m kind of in the phase where I’m not really getting answers. There isn’t a doctor around here that can get me in for over two months so I’m kind of on my own. I’m wondering if having my kid was part of what triggered the more severe symptoms. I had my daughter two years ago, and had a spinal tap during birth. I’ve read that can have an effect.
I live in Idaho and the doctors here don’t seem to know much about it, or how to treat it either. I never really thought about child birth possibly having a connection to chiari, but now that you brought it up It does make sense. I didn’t have any problems with my first child, but I didn’t have an epidural. I had one with my second one though, very interesting.
Oh! I was born in Idaho! From Pocatello. I’m currently in southern indiana. We’ve got a hospital here that deals with chiari, but it’s really hard to get in. I’ve got an appointment set for may, and I’m on a wait list for any sooner openings, but. The medicine the hospital gave me that’s been helping is almost out. 
It’s a small world, I live in Idaho Falls. I hope they can give you a refill on the meds, especially if they are working for you. I hope you don’t mind me asking, but what are you taking? I’m taking tramadol and a muscle relaxer, for pain and muscle spasms.
Sadly to get more it’s another 8 hour sit in the er. They have me on fioricet. It doesn’t do much for pain but it relaxes me.
Do you have a family doctor that would possibly prescribe it for you? I’ve never had the the one you are taking, but if it is helping you get through this you really need a refill. The doctors need to understand that this doesn’t just go away in a few days or weeks. I am lucky that I do have a family doctor that will listen and try different meds even though he is not very educated on chiari.
Sadly I dont. I’m on medicade and here only my appointed pmp can see me, and has full up for over a month…
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If you don’t have a choice your just going to have to go back to the hospital. I can understand you not wanting to go through all that again.
It wouldn’t be so bad of it didn’t take 8 hours or so every time. 
I understand!
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I hope your feeling okay today!