Experiences with

Chiari malformation

I may be having cord detethering surgery soon as well as possibly having Chiari malformation decompression surgery at the same time or close to the same time. I could be having one surgery, or the other, or both. Has anyone else had this and if so, what was your recovery like?

You were so supportive and kind to me when I last posted about finding out I had Chiari Malformation and didn’t have PMR. So, I thought I’d update on what has been going on since then.

hi I’m just wondering if anybody else has fibromyalgia and has been diagnosed with Chiari malformation type 1 also. I also have bulging discs in my back with extreme pain. feel like I’m falling apart most days 😔

I was diagnosed with chiari 1 malformation last year. Luckily I have no symptoms, however, I am such an overthinker, I have been reassured many times that complications only ever occur rarely and people sometimes go on with life without even knowing they have the condition.

Ive got spinal stenosis, chiari malformation, heart failure, its just one thing after another. I'm 63. Just really hoping I won't need chemo if this iron infusion works. Thank you all x

I have a Chiari 1 malformation of the brain. This would be the cause of the past migraines and insomnia I have suffered and now the neck and shoulder pain, pressure in my head and headache along with bouts of nausea and dizziness.

I’m just interested having just had decompression surgery for Chiari Malformation how people have found life after surgery. Have you stayed independent or had to have help?

I’ve gone so much further down a hole since July and the whole Chiari malformation bullshit. I try and be like you’ve felt like this before you are okay you will make it through but I guess my brain doesn’t believe it.

I’ve gone so much further down a hole since July and the whole Chiari malformation bullshit. I try and be like you’ve felt like this before you are okay you will make it through but I guess my brain doesn’t believe it.

I just was told I have Chiari malformation

I am so scared I’m starting to feel every symptoms I read. I’m freaking out. I don’t want this to kill me. I’m shaking. I’m trying to tell myself I made it through these weird feelings before.

it is not Chiari malformation I forget what she said it is but structurally my brain and spine are good.

I have a Chiari malformation I’m so scared idk what to do the doctor called

hello, I joined this group when I was told I could possibly have Chiari Malformation but after the neurosurgeon did a spine mri and looked at my brain mri she said I was very much borderline and no spinal fluid was blocked so she doesn’t even want to call it Chiari my tonsils are about 5mm down.

It’s gotten worse after being told that I probably have Chiari malformation. Like should I take it as I’m actually going to die soon? Has anyone felt like this? How did you change your course? Yes I know we all die and what not. But like this shit freaking me out. Like I wake up feeling like this.

So how am I to know for sure what’s causing these random weird symptoms like is it the Chiari malformation or a combination of so many things.

Talking about Chiari Malformation really scared the poop out of me and made me scared again made my fear kick in again. I hate waiting for the neurosurgeon to call to schedule and appointment. I just feel so off and scared.

The Chiari malformation was the toping on the cake last week yeah I do too much research on how I’m feeling but it’s scary to constantly feel like your brain is fighting everything it feels like I’m in hell.

I just don’t know all these sensations just frustrate me then I did research about Chiari malformation and like it really freaks me out because a lot of my weird symptoms go along with it but my symptoms are intermittent.

Any one here have chiari 1 malformation? Haven’t been feeling well for 2 years, constant dizziness swaying and feeling off balance. Brain MRI shows I have chiari and it’s freaking me out.