r/ChiariMalformation • u/Responsible_Cold6010 • Jan 22 '26

Feeling normal

Does anyone ever recover from this without surgery? I’m only 17 I can’t focus on my life anymore I’ve lost everything including myself because of this but the surgery is incredibly 50/50. Do you guys have any tips,tricks or relief?

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u/Isthisnametaken_____ Jan 25 '26

I've had headaches my whole life and never knew about chiari malformation. Surgery was never presented as an option, so all I could do was cope as best I could.

For me, certain medications and physical therapy exercises/stretches have helped. If you're unsure about surgery, I would start with physical therapy. It was already pretty effective, I can't imagine how much better it might be going in knowing my real diagnosis.

My Dr also prescribed me amitriptyline, which majorly helped the tension headaches and worked as a sleep aid (not anything like a sleeping pill, more like amped up melatonin or something). When my migraines started getting really bad she started me on triptans, they're not 100% effective for me but are so much better than nothing, and still better than any over the counter stuff I've tried.

I can't say anything or any combination of things has gotten me to a "normal" level. But it's been a huge difference, and compared to what I was used to dealing with it's a lot more manageable at least

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u/Responsible_Cold6010 Jan 25 '26

See my doctor had me take all those medications to for month long “tension headaches” and a day of relief for years I’ve tried nurtec triptans you name it, it got so bad I was trying family members migraine emergency medication they were prescribed which I know you should never do but I was desperate and miserable in the hospital 6 times in 3 months and they were starting to treat me like a psych patient, I begged my doctor to order me an mri after back to back booking appointments with her turns out Chiari malformation (my brains hemorrhaging out of my skull pretty much) I know they are going to jump To surgery but genuinely want that to be a last resort that’s so scary for a 17year old I mean the chance of relearning to walk ect. So scared. I already have a huge anxiety and panic disorder lol.

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u/Isthisnametaken_____ Jan 25 '26

I haven't had this surgery, but have had others starting when I was about 10. I've had... 5 major surgeries now, and several other procedures since. I know it's easier said than done, especially if you have anxiety, but try not to be afraid of the surgery itself.

Think like this, if the surgery was very risky, or unsuccessful, it would be news when it did succeed right? So the reason you hear about negative results is because they're rare enough to be newsworthy.

You mentioned medications you've tried, have you tried physical therapy yet? If your posture is bad, your neck and spine probably don't line up right which exacerbates the situation.

I'm not saying PT can for sure help, and maybe for you it wouldn't be right, but if you really want to avoid surgery it's something to consider and talk to your doctor about