r/chiari

I, 37f, was diagnosed earlier this year after a very sudden bout of light sensitivity that was initially diagnosed as ocular migraines, but was then (after a series of CT scans and MRIs) found to be a Chiari Malformation and syrinx. Between diagnosis and decompression surgery, I was able to work with a series of accomodations (yay, unions!), a rx of Diamox, and by wearing a baseball cap, blue light glasses, sometimes sunglasses inside. My NS did let me know that the extreme light sensitivity was a bit of an uncommon symptom, and he wasn't sure it would resolve after surgery. It's only been six weeks since surgery, so I know there is still more healing to go, but the prospect of living under a hat for the rest of my life is bumming me the hell out.

My question is- for those who had severe light sensitivity before decompression surgery, did it resolve after? If so, how long did it take to resolve after?

I'm also open to any tips or light blocking ideas. I have a desk umbrella, my work is looking into getting me a tarp-esque set up because the flourescent lights are veryyyy hard on me. I watch TV on the lowest brightness, my computer screen is so low its gray-yellow, I have special sunglasses that block out side light, I am at my wits end for how to deal with this. Because the light sensitivty makes driving unsafe after I get triggered to the point of actual pain in my eyes, its led to a huge loss of autonomy and it's so frustrating.

Wish me luck. I’m a little nervous 😬 Its been over three years just to get to this point.

I’ve been posting here for the past week on symptoms, doctors etc. Yesterday I went to my GP and was basically dismissed with just blood tests.

Later last night, my foot had spasmed, I immediately felt nauseous. My foot has been cramping (mostly toes) but this was something else. I was sitting in a chair and only put that one foot down then blacked out. Completely blacked out, hit my head, didn’t know what happened. Luckily I was with my mum at the time and had spent the whole night in the hospital. They wanted to keep me in because this has never happened before (I got there at 10pm and this was said at 5am) and I was just too tired to stay, I’d have to wait for a bed and I just went against medical advice as I just couldn’t cope.

Blood tests came back fine, CT came back fine.

Today I feel worse. I feel so weird and tingly and just shit. Pain in my head etc. I’m pretty sure this was a flare up…this has never happened before, I’ve never blacked out. I know your limbs can go numb but this was a whole new ball game.

I’ve contacted a private hospital for more help as my public healthcare isn’t the best.

Has this happened to anyone before? Is this a sign? I’m so tired of this, this has been the worst week

I can’t tell if my symptoms are coming from my chiari malformation or long covid. Either way it sucks, does anyone else also have both of these? And POTS. So much dizziness & it feels like my ears are under water & visual snow plus anxiety. I think the heat is a trigger for me.

Hello. I have heard from others that have trouble swallowing but not quite sure what that means, specifically. Like, i have moments where I'm eating ir drinking and my throat just kind of stops. Like it forgot how to swallow for a moment. Or I'm chugging water because I can't get the pills I took to go down. Also, choking on my own damn spit or water. What are your experiences? I also recently learned that the random feeling of not being able to take a deep breath is a thing that could be a symptom and I've had that for several years.

Hello,

A few months ago I was scheduled for a pre op appointment where my neurosurgeon told me he would not preform the surgery on me and does not think I’d ever need it. Unsure why we called it a pre op appointment when that was the case. The PA even told me I’d have the surgeon give me the details of the surgery, blood work done, and a scheduler would come in the schedule the surgery. Then the doctor came in and basically just said “no”. And that most of my headaches and chief complaints were not due to chiari. My current status on my chiari is 7.3 mm extension and an abnormal flow of CSF “Orthogonal to the tip of the dens”

I am 30F and diagnosed with chiari a few years ago and told to not worry about it. Over those years my symptoms have progressively gotten worse.
Symptoms include: head aches, head pain (they feel different I swear), migraines, pain in the base of my skull that spreads when I laugh, jump, sing, yell, run, exercise, am constipated, look up at something, flinch, stop short, drive for over 30 minutes, quickly try to catch something, dance, or smile for long periods of time. I struggle with insomnia and waking up 4-12 times a night. I wake up with numb hands, neck pain, restless legs, joint pain, head aches and head pain.

My neck is regularly stiff and tight. I get massages from a strip mall monthly because my neck and shoulders are constantly tight and knotted. I occasionally wake in the middle of the night with a scream because it feels like my brain is splitting down the middle. I struggle with fatigue, visual migraines, regular migraines. I miss more work due to migraines than anything else. I often feel faint and light headed upon standing quickly or coming up from the floor. I get numbness and tingling and burning down my neck and shoulders.

And most importantly, I am miserable.
I am tired and in pain. I am anxious that a migraine is going to strike when I’m not home. I can’t sing and dance and be goofy. I am a light hearted fun person and I am loosing my light more and more every day. I isolate and stay home. I’m depressed honestly. People in my life tell me to go out and hang out with people. But how many times have I canceled plans due to migraines? Why keep making those plans? I’m scared to go out and about by myself even sometimes because what if I get a visual migraine and have to pull over driving? And what if it turns into a full blown migraine? This has happened before and luckily I had someone in the car who could drive me home but if I don’t, I’m stuck??

My doctors think I need to eat better and exercise more. *eye roll* exercise hurts!!! But I probably do need to eat better.

I have been seeing a neurologist that is trying to find me migraine meds. So far I get side effects or it holds off my migraine for a few hours and then it hits me even stronger. Since started meds my migraines last over a day.

I feel hopeless honestly. Does anyone relate to this? Is this from my chiari? Do I really just need to accept all of this pain and discomfort in my life? Is there other doctors that can help? I’ve gone to a neurologist and a neurosurgeon and the neurosurgeon has experience with chiari patients.
I just don’t know where to go from here.
This is long and full of complaints so I understand if no one gets through it but if anyone has advice or hope. Please share, it will make a difference. Thank you

I had decompression surgery including duraplasty and c1 laminectomy on June 22. I was in the hospital until the 26th and basically sat in darkness the whole time; any noise or light gave me a migraine. I’m now at home and can tolerate that, but i’m having a lot of trouble focusing. It’s like my default is to space out and everything be blurry, and i have to put a lot of effort into focusing on something. I also sometimes get ringing my right ear and get a pressure headache if i sit upright. My most comfortable is lying on my side; even lying on my back hurts as i feel a rush of pressure when i get up.

I read so many stories of people feeling better immediately after surgery, and right now i’m just asking myself why i got it. my worst symptoms were tension headaches on exertion, which happens right now during recovery for sure. And other ones were balance and muscle weakness, which both are still problems right now since i’m so dizzy and weak. My main concern is the focus issue as i hadn’t seen that in any of the posts i’ve read. i just hope it isn’t something permanent, as it’s not an issue i had before.

i guess i’m hoping for people with similar recoveries to share their stories for reassurance.

Hello I’m currently on the waiting list to get surgery, but I forgot to ask the surgeon what kinds of things I need to be careful of or consider in life with part of my skull missing?

Do you have any insights?

Thanks!

This is mostly new for me as of a few months ago. But I went to the hospital and I had a CT scan of my head and neck and they said everything was fine. So I’m wondering if it could be from chari. Does anyone else deal with this? And what does it feel like?

Hi everyone,

My 5 year old son was diagnosed with chiari malformation type 1 ​today while at the ER getting a CT scan after a concussion. I have never heard of this in my entire life. What do I do? Where do I start? Everything I am reading is so overwhelming.

The doctor told me most people who have type 1 go their entire life without knowing or having any symptoms and it is usually only caught on scans for other issues.

Signed,

A very worried mom ​

So idk what is causing this recent flare, but I’ve been experiencing leg weakness, internal buzzing sensations, anxiety is through the roof, swollen hands when I wake up, waking up out of my sleep in a panic, ear fullness, tinnitus, and visual snow. Please tell me I’m not alone in this, it’s been 3 going on almost 4 years in October since I’ve been dealing with this & im at the point of giving up. When will this end ? When I was pregnant with my youngest the symptoms subsided I thought I was free of this bullshit and I got no answers from why they went away while I was pregnant. Has this happened to anyone else??

Your body is weak. Your neck is stiff, it's painful. You can barely move it in any direction. Your limbs seem to give up on you, your arms fall to your sides, your legs collapse and twitch. The stimulated feeling in them doesn't seem to stop, it's like you run a marathon every day.

Picking up small objects with your fingers requires immense concentration. Concentration that is short on supply as cognitive tasks become more difficult. Your hands tremble uncontrollably.

There is a fizzing noise at the back of your neck. It's hard to lay in any position comfortably. Headaches wrack your brain, so painful you feel they're named incorrectly. It's like grenades detonating in your skull.

You don't feel like a human being anymore. You can't go out, engage in hobbies, hold conversation, laugh, drive.

Some days this pain and discomfort becomes so unbearable you reach your limit. You want to break down under the weight and pressure, you want to weep and grieve. Yet, allowing yourself to cry triggers days-long migraines. Even despair is an emotional luxury you cannot afford.

So you trap your trauma, freeze it in place, never touching it, never attempting to process it. You shove everything you can't even think about away, afraid to come into contact with a single trigger.

Not a soul you know can relate, very few people seem to understand. You might look okay on the outside, but your body is a prison, your daily life is survival. You can try your best to communicate this experience, but to them you might as well be speaking in a foreign language. You're always alone.

Medical appointments are a circus, and you're the clown. Dressing yourself up in hope, doing the dance, performing just right, and the result is always the same. You're back where you started, every single time. So much energy spent getting absolutely nowhere.

Meanwhile you lose less and less functionality and dignity.

I am 20M diagnosed with Chiari 1 at 13. I have been living with Chiari symptoms thinking I’m just weak, or maybe experiencing whiplash from my middle school obesity years, despite being in decent shape now.

So it’s relieving in a way knowing that it’s the Chiari causing everything.

I’ve had surgery before, actually not too long ago last year. I had a tonsillectomy, so it’s still pretty recent. So I know it’s completely normal and rational to have these fears of pain and just everything about the surgery, especially since it’s more high risk than a tonsillectomy.

I just need to know, despite the countless of hours and days of research I have done, I need to hear it from actual patients who have gone through a decompression surgery. How was recovery?

As the title asks, would the pain be about the same pain I get from sneezing? Are there things I need to be prepared for? What things helped you get past it?

I am terrified of pain, especially since my favorite place to scratch when I have an itch is where they’re going to make the incision. I don’t know how to feel about this.

My surgery is tomorrow but it’s terrible how badly I want to cancel it, but I know I won’t because no matter what this surgery would be life-changing for me.

Hi! I had my decompression surgery almost a year ago this July! I’ve had a bad tooth ache on my back right molar for about 2 years and was always told it was fine by my old dentist. My new one looked yesterday and said it was decaying under an old filling and need to have it refilled. I’ve never been scared of the dentist, but after my surgery the thought of laying on a table with people over me with drills and different tools terrifies me. I don’t know if I could lay there and have the procedure done. Does anyone else have this fear after surgery and what can I do to help?? Thank you!

I finally met my neurosurgeon last week and he confirmed that I need decompression surgery. However, he told me that I am experiencing other symptoms that are not typical of chiari (just like his NP said to me back in April). They were likely talking about symptoms that I call episodes like yesterday. I was thankfully not driving but my teeth randomly clenched to the right side only, couldn’t unclench my teeth, then I blinked, and couldn’t open my eyes because they felt stuck. I could feel my eyes moving from side to side then my head leaned to the right side. I felt like I was about to drool from the corner of my mouth since I couldn’t unclench my jaw from the right side. Things like this happen when im awake or wake me up when I do try to sleep.

So I understand why he ordered a EEG. It’s scheduled for tomorrow morning and I believe it lasts over an hour or two. I have to be sleep deprived which won’t be a problem because I’ve been having problems with sleeping since late last year anyways. I do appreciate that he’s been paying attention to the symptoms log that I provided and took the time to explain because the amount of gaslighting that a lot of medical professionals do, instead of admitting they are not familiar with Chiari and refer you to someone that does.

Well I am off to prepare for tomorrow. It’s been an exhausting journey and I wish nothing but the best for everyone going through this.

Hi everyone... so to cut to the chase, my chiari is 8.5 mm and I have a Srynix. Its been a little over a year since I've been decompressed. My last follow up with my neurosurgeon was in May. She feels the srynix is not going to "go away" at this point. My question for you all is, should I be getting an MRI every 6 months or so to know whether or not more srynix have formed? Somewhere in my brain is recall either a Dr told me or maybe read that. I do not have a GP (shortage in my area) so I would have to advocate for myself. Thanks in advance ☺️

I know there a specific lobe of the brain for that but sometimes things overlap. I’m wondering how many people with chiari and an extremely strong sense of smell. This doesn’t necessarily mean you are sensitive to smells- but means you seem to be always smelling things others can’t.

We recently uncovered my daughters Chiari (awaiting follow up appt with neurosurgeon after full MRI to know extent of what we’re dealing with). She’s 4.5, has suffered from the Chiari headaches at back of neck followed by nausea since she was 2ish. She’s now able to name “regular” frontal headaches, that are happening much more regularly with the heat, and are more manageable with Motrin. I’m wondering now, after seeing how much happier and overall lighter she seems after taking the Motrin, if she may be suffering from low grade headaches all the time but may not necessarily realize it because it’s her baseline (just noticing how different she seems with Motrin). Anyone else wonder this with their kids dealing with chiari? Taking daily Motrin feels overkill, but also just wanting to do all the things that can help my daughter have a better quality of life. She doesn’t seem miserable by any means in her day to day, and perhaps we’d all feel better with a little daily ibuprofen, but just noticing this and curious if others have wondered the same.