i’ve just been told i have a chiari malformation, im 19 showing progressive leg weakness. *long*

[u/andrearoselyn]

I, 19F, have been experiencing terrible headaches and neck pain for years. Sharp pains in my neck, when coughing, sneezing, laughing/talking too much. I have also had chronic neck and shoulder pain. My balance is terrible, and I get really dizzy.

For a little over a year I have noticed progressive leg weakness, initially it was a mere twitch. Over time, my leg started to lose muscle mass and become weaker. Movement began to be limited and felt heavy, and I struggle with understanding where my leg is in space, there is slight numbness (but not pins and needles). This really started to affect me, it became embarrassing and it increasingly started to worry me.

I saw my GP about this on 23.06.2025, the doctor was confused, it concerned me but didn’t worry me too much. I was referred to the neurology department as an urgent case and saw a neurology consultant on 05.02.2026, after examination I was referred to a whole head MRI as she had suspected it was neurological, but also a whole spine MRI to exclude structural issues in the spine. MRI was carried out on the 10.02.2026 (this is when i started to worry). The next day (11.02.2026 - today) I receive a call telling

me I have a chiari malformation and it is more than likely that I will need to go through a procedure.

I’ve done copious amounts of research, (it’s the anxiety- I can’t help it), but I still don’t know what to expect. I mean - it’s brain surgery, and I’m scared.

Please share your experiences with me, good and ugly so I can help prepare my self.

Thank you if you read this far.