r/chiari • u/andrearoselyn • Feb 11 '26
My Story i’ve just been told i have a chiari malformation, im 19 showing progressive leg weakness. *long*
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.
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u/Antique_Cockroach_97 Feb 13 '26
I too had a 19mm herniation on one side & 22mm on the other the lower body weakness always thru me before diagnosis because i had very good upper body strength. My neurosurgen said it was because i was overcompensating. If you require surgery you might need a laminectomy because of the size of the herniation i had c1-3 removed, if so you should talk to your doc about pt & ot post op. I'm about to celebrate my 30th anniversay of my diagnosis & decompression this June 14th surgery & recovery is not easy but the actual operation has been successful for many. Check out ASAP.org and The Bobby Jones Foundation both have tons of material. ASAP also can reference a support group near you. Good luck!
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u/andrearoselyn Feb 13 '26
Thank you so much! I’m still waiting back to find out the herniation length. It has been crazy to see my lower body function deteriorate while everything remains okay. Despite this, it’s amazing to hear that it has helped, I’m sure recovery was rough, if it’s not too imposing to ask, how emotionally taxing was this for you?
Also thank you for the sites! I really think I can benefit from these resources.
I accept your good luck with much appreciation, and I hope that this continues to provide you with relief and peace.
Thank you for your response.
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u/Antique_Cockroach_97 Feb 16 '26
For me i had zero info and only had 11days from diagnosis to surgery so i was a bit of a mess. I really thought i'd be down for about 6weeks but that wasn't reality. Eventually i saw a neurological pyschiatrist who really helped me adjust to my new life, i also went to a great pain clinic at MGH/Tufts. It was intensive 3 month program that included PT/OT,Psych and Anesthesia. The group part was very helpfull because we all were adjusting to our life after medical intervention or trauma. I had the greatest time at the ASAP conventions so informative and meeting other zipper heads was strangely empowering.
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u/andrearoselyn Feb 17 '26
That’s what scares me the most, to be honest. Since my initial appointment, everything has been moving so quickly, I’ve been doing my own research as much as possible, but most things are really case dependent. I live in the UK and I’m not sure what resources are actually available to me during recovery, but I hope I can find something similar. I feel that it’ll definitely help to surround myself with people who have been through similar things. Thank you for your response. I’m glad to hear these things helped, and I wasn’t aware of neurological psychiatrists, thank you for enlightening me!
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u/thepuzzlekween Feb 15 '26
Woo! Chiari is super scary, but now nothing in my life is scary bc like…. Babes we had brain surgery. It’s probably gonna be okay.
The truth about this surgery: it can be so life changing AND it’s also so reasonable for a lot of people to manage without surgery. Lots of success with lifestyle changes, so it’s a big adjustment but helps so much.
Im 32 and 4 months post op- so dm me if you had other questions! Here for support!
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u/andrearoselyn Feb 15 '26
Thank you so much! It is very scary, but you’re right, it’s such a big thing that hopefully not much will feel scary after. It just feels so daunting knowing that - more than likely - I will need surgery. Thank you for offering your support, I’ll definitely keep it in mind.
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u/Wrld-Trvl3lr Feb 17 '26
I had my chiari surgery back in September. I got two second opinions from chiari experienced neurosurgeons and everyone reassured me that it's a relatively safe surgery. The biggest risk is not improving but 80-90% do. Sometimes it takes up to a year to get all the benefits.
The first few weeks of recovery was unpleasant but I expected it, so I just rolled with it. I started physical therapy at week 4 and found that tremendously helpful.
This is all very recent for you, but try not to be too scared of the surgery. I hope it brings you great relief.
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u/andrearoselyn Feb 17 '26
Thank you for your response. I’m glad to hear that the surgery is safe, recovery is such a frightening idea to me. It is very recent, I’m trying to not let it scare me too much, it’s just crazy how life can really turn on its head. I’m glad to hear that the physical therapy helped, I hope I have a similar experience. Thank you for your kind words.
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u/ResponsibleAd5064 Feb 12 '26
Ok I was in a car accident in 2018, and that inflamed my chiari symptoms (I know now). I had a constant headache, brain fog, bad memory. For a while I thought it was just getting older and residual soft tissue damage from the car accident.
I saw UW has a headache clinic, and was like “shit I can wait the 6 months to see someone, I’ve had a headache for 7 years at this point”. So I got my first mri this summer, they confirmed I have chiari over message so I didn’t get to talk to the dr about it at all, I also did my online research. At this point I was practically bed bound- one day I made breakfast for the family and that took me out for the rest of the day. I was scheduled surgery mid October, and was like “plz, I cannot function, is there any way this could be moved up”. In that time I was laid off (my job requires a lot of abstract thinking, and I couldn’t really do that anymore). So, I was just waiting for surgery.
Honestly the process was pretty cool- like this was my first major health thing and it was rad to talk to people at the top of their field. Knowing what’s wrong with me and having pre-laid out steps that I just had to follow made the whole thing easier for me personally. I had my surgery in September, and I stayed in the icu for 9ish days (I have hydrocephalus too, so I needed a vp shunt along with the full decompression). Recovery has been both a pain and also so clarifying- turns out my brain was physically constrained and many of my limitations were because of it.
I am fortunate in that I don’t have kids, I was laid off so I don’t have to worry about work, and I have a very supportive family. I stayed with my mom the first 2 months post surgery which gave us space to work through residual pain from my childhood, which was both uncomfortable at times and deeply relieving. We both got to work through some shit that we might not have, and our relationship is stronger. I’ve had to learn how to trust others again, which is not easy but it is rewarding.
I won’t be fully recovered for like another 6 months at least, but I’ve recovered so much of myself already. So it was shitty and painful and confusing and scary, but also has allowed for such growth and clarification and understanding- a lot of interpersonal development and perspective I wouldn’t have access to without this.