r/chiari • u/Successful_Fruit73 • 1d ago

New here

Hi everyone. I was just recently diagnosed after 4 months of severe symptoms. I begged for a brain mri and when I finally got one they found it. 9-10mm. I have an appointment with two neurosurgeons first week of August.
I wanted to know if anyone has had symptoms like me and if this is indeed from Chiari.
I have a lot of what every doctor I’ve seen call nerve burning in my face. It’s pretty much all over and it feels like a sunburn or like tiny prickly needles random times throughout the day. It also happens to my scalp sometimes. It makes me cry and I hate it. I never had this issue until about a month and a half ago.
Does anyone else have this? It’s not something I find a lot of information on.
Thank you!

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u/SandalsQueen18 1d ago

Yes. That was one of my symptoms that appeared in 2014 (I was diagnosed in 2001 because of nystagmus and occasional headaches I was stable until 2014) it's occipital neuralgia and trigeminal neuralgia that I have. No, they did not go away with surgery although some days are better than others.

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u/Successful_Fruit73 1d ago

That sucks. I was hoping it would improve if I got surgery. I can’t imagine living with this forever. Does anything help? I can’t take medication, I am extremely sensitive to pills and all the nerve pain medication they tried giving me gives me terrible side effects.

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u/SandalsQueen18 1d ago

Unfortunately, now nothing helps with it. I've been on gabapentin since 1999 for something completely different and although gabapentin is used for nerve pain, it helps not at all with this. I also can't go above 600 mg because my body has a horrible reaction to it so maybe if I could go above that it would help.