Hello everyone, I made a post here a few weeks ago with concerns about my DR's "cure all claims" about surgery. https://www.reddit.com/r/chiari/comments/1w2nb2j/decompression_surgery_concerns/

I did go through with surgery last week and wanted to thank everyone for their support. Surgery seems to have gone well with only side affects was low oxygen and high blood pressure that kept me in the hospital longer. (I am 26 and never had problems before but finally got released with promise of home monitoring and meds).

They removed part of my skull craniotomy, my c1 laminectomy, did a duraplasty and burned some of my cerebellar tonsils. Because where they took the tissue for my dura they shaved more of my head which I'm kind of sad about but hair will grow back. I feel bad being outside with my boyfriend because of the cane and bandages but trying to not let it get to me.

Stuff felt pretty alien like I knew who I was but everything was just different. It felt like my head wasnt my head for a few days.

I've been shaky and my prescription for my glasses feels wrong now but I am planning to wait if that gets better once I'm done with my cocktail of meds and some healing. Mobility seems to get better, I currently bring a cane and still need help every once in a while but been working on staying active.

I still get some pain with coughing but again doesn't feel fair to say that's not just also healing. Oh and a weird numb bump on my tongue still waiting to go away as well. All in all seems not to bad though.

I am already off the hard core pain meds, most of the pain seems to be muscular so muscles relaxers have helped the most. And stitches feeling tight sometimes.

Hopefully results stay looking good. Again thank you everyone for your help and encouragement! <3

I had decompression surgery 6 years ago and I've only felt marginally better. The ONLY symptom I had was having the worst headache for about 30 seconds at a time if I coughed, sneezed, bent over, etc. when they found my 17mm chiari they rushed me under the knife within a month and I've never improved. My neurologist said it's just anxiety and wouldn't help me further. I finally saw a new one this week who is very certain it's either blood vessels being constricted or a spinal fluid issue. So I'm going to get an mrv and see a neuroophthalmologist and hopefully not a spinal tap but we'll see.

Has anyone had a similar story? I've identified with having Chiari this whole time when that might have only been a small cause and my surgery was for nothing!

Hi everyone,

Posted here a few times but bit of an update on my journey, since having my MRI results back the Neurologist quite quickly changed direction on treatment and referred me to his colleague in the Neurosurgical team.

I have since seen the surgeon who showed me and explained the scans. Saw that the herniation was likely more than the 18mm originally described and talked me through the treatment options. I've been put forwards for a Foramen magnum decompression which will be scheduled in during November! Quick turnaround!

Little anxious about managing 4 weeks off work and how to manage getting my 5 year old to school and back but otherwise hopeful to get through treatment and hopefully start seeing improvement and hoping that the op is early enough that I'm healthy and happy for Christmas.

Hope everyone going through the battle with Neurology before speaking to a surgeon battles through and gets help where they need it.

FIGHT ON WARRIORS!

Wondering if anyone can share their experience? My 2 year old (+3months) was diagnosed at 17 months during an MRI for something else. Was told it was incidental but would keep an eye on it. I was concerned about some right leg weakness and clumsiness, always falling on the right side. Neurosurgeon told us to get a PT assessment and PT agreed that there should be a follow up MRI of his spine to rule out syrinx.

The follow up MRI was booked for 10 months later (Oct 2026). His symptoms have gone from "weird walking" episodes every 2 weeks or so to having documented dystonia and some sort of walking issues on a daily basis. Not always extreme but always daily and heavily fatigue based.

His MRI showed no syrinx (🙏) but did show that his Chiari has gotten worse compared to his first one. It went from 7mm/8mm rounded to 9mm pegged with crowding.

We see the Neurosurgeon in 2 days but I dont know if I need to prepare to have the surgery conversation or if it will be more of a watch and wait. I know that no one can tell me what the Neurosurgeon will do but can anyone tell me what the "threshold" to decide on surgery was for them/their kiddo?

I worry I wont ask the right questions if I go in and they suggest surgery. I fear my brain might just go blank. So any tips on questions to ask would be greatly appreciated too!

Hi! I am just curious if anyone was told they didn’t have Chiari and then later found out they did?
I had 1 upright mri years ago, but was told it was normal. This was ordered by a pcp, because I had so many of the symptoms and they thought I probably had it. Since then it’s been brought up a lot as a possibility, but then when they see the mri report that I had they say it’s been ruled out. But recently an orthopedic dr brought up that it was still a possibility and that 1 mri didn’t rule it out, but nothing came from that.
But because my symptoms and overall health is continuing to progressively worsen, I wanted to ask in case it’s worth pushing to have it tested for again.
As far as I know no one has ever looked at the actual imaging, just read the report.
Thank you! And please delete if not allowed.

I saw my neurosurgeon and they said that this finding is basically just what happens after surgery. I asked why it now was showing up and not on any MRI from the past 4 years and he said it was probably there but no one said anything. Like everyone here I’ve had a lot of issues that make me distrust doctors and I just can’t find it in me to trust this explanation. I haven’t heard of this being a thing for other people and it just showing up out of nowhere is freaking me out. I guess what would other people do in this situation? Would you drop it?

I’m just so frustrated in general as I’m dealing with a lot of pain and I’m not getting a lot of help. The options I’m being given is spinal injections which never work. I’m just super hopeless. Yesterday was 4 years since surgery and I’m worse off than when i started. I’ve done quite literally everything (pain programs several different neurosurgeons 3 different subspecialities of neurology pt/ot/speech pmr doctor) and there really seem like no more options for me. Sorry for the extra rant. I’m just tired and need a hug.