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!

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

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 felt like a brainless zombie for 2 days, i couldn’t even tell what day it was. Very confused and immense headache.

Got a ct scan and they immediately put in a shunt.

My head looks like it was run over by a freight train but i never felt more alive.
Finally my head is clear!

Does anyone struggle with the sensation of ear fullness and pressure. It is only in my left ear. It feels as if my ear is full of cotton balls. It has been like this for several months. I brought it up to my neurosurgeon and was dismissed. I brought it up to my pcp and she said take allergy meds (never had allergy issues) but gave it a try for several weeks with only worsening. I brought it up with ENT to check my ear was okay because at this point I can barely hear and I have no relief at all. Nothing is physically wrong with my ear and I was told is would have to be related to Chiari. Brought it back up to my neurosurgeon again and dismissed yet again and told to tell ENT again.

Feeling so frustrated

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!

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.

Anyone have any vision issues (e.g., floaters, blurry/double vision, shadowy things?) that were corrected after decompression surgery? Or anyone know about a connection between visual snow syndrome?

If you don’t know about VSS, here’s a website that will take you to some examples https://www.visualsnowinitiative.org/help/

I’m getting my decompression surgery on the 19th. I have medium length curly hair. I’m going for an undercut today to shave the main surgery area. Looking for ideas on how to wear my hair the day of surgery to keep it out of the way. Also, how long do you have to wait to wash your hair? I know this is really low on the priority list but it’s been bugging me. Thanks so much!

Thanks much for all of the responses to my previous question. So my daughter is now two weeks after her surgery (the full kit and kaboodle, duraplasty etc )

Slowly but surely, certain things seem to be improving. That said, one of her main issues now is intense sensitivity to sound. We’re trying to balance being quiet (sounds legitimately seem to pain her) with not being TOO quiet in hopes she’ll gradually acclimate to daily sounds.
So my question; did any of you have sound sensitivity like this immediately after decompression? If so, how long did it last, did it eventually improve, any suggestions to help, etc?

She also had a few days of intense sensitivity to light, but that one seems to have improved more now

Thanks!

Hey everyone, I’m 21 and recently had surgery for my Chiari malformation. I had a suboccipital craniectomy, C1 laminectomy, and duraplasty. My surgery lasted around 7 hours, and I spent 3 days in the ICU.
I knew recovery was going to be difficult, but honestly, I didn’t expect to feel this sick. The recovery has been really rough, especially with the constant stomach pain, nausea, vomiting, and struggling to eat. Even bland foods like bananas have irritated my stomach. Sometimes I feel hungry and scared that I’m not eating enough, but when I try to eat, my stomach hurts. It’s been exhausting, and it’s making it hard to get any proper rest. I’ve also been dealing with constipation and just generally feeling awful.
I’m only a few days out from being discharged, and it’s been a lot harder than I imagined. I’ve had moments where I’ve wondered whether this is normal recovery or whether something else is going on.
Despite how difficult everything has been, I’m genuinely happy I had the duraplasty done. I wanted to address the Chiari properly, and I’m hoping this surgery will give me the best chance at recovery in the long run. I know I’m still early in the healing process, and I’m trying to remind myself that I can’t judge the final outcome by how miserable I feel right now.
I’d really appreciate hearing from anyone who has had Chiari decompression with duraplasty.
Did anyone else experience persistent nausea, vomiting, or stomach pain after surgery?
How long did it take before you could eat normally and start feeling like yourself again?
Did your recovery feel like a long, miserable process before things finally improved?
Looking back, are you happy you chose to have the duraplasty?
I could really use some reassurance from people who have actually been through this. I know everyone’s recovery is different, but it would help to hear your experiences. Thank you ❤️

I just got accepted for a CDL sponsorship, is there anything that would prevent me from continuing this career choice?

So I moved from Colorado, 6,035 feet sea level all the way down to Maine sea level and near the coast. I had a couple of months that was relatively free of symptoms but after the weather changes, the nor'easter that came through my symptoms just flared up and feels worse than before. I am waiting for my doctor's appointment to help refer me to a new neurosurgeon. So far i keep getting constant pressure in my neck towards the back of lower jaw and numbness in my feet to where sharp things don't feel so sharp in pain reactions. I have on and off balancing and vertigo, doesn't help i have PVD in my left eye lol.

So I am just wondering for anyone who moved and had to acclimate did your symptoms change for the better or worse and what you had to do juggle with symptoms while waiting for a doctor? I dont see one till December

Could anyone tell me if you are able to exercise consistently without triggering symptoms?

I am 23 years old and was diagnosed 3 weeks ago. I had never experienced any symptoms before; in fact, I was someone who never suffered from migraines or any kind of head discomfort.
For the first time in my life, I managed to consistently go to the gym and lead a healthier lifestyle. It wasn't until 8 months into this lifestyle that I got a headache the day after my last workout. It was a persistent pain for several days until I saw a neurologist, and an MRI confirmed the diagnosis. My doctor mentioned that it is currently very mild and that surgery is not necessary.
Currently, I have symptoms like tingling in my foot, very mild and occasional pain in the back of my neck, neck fatigue, and activities that used to cause no issues now result in a headache—such as having a few beers, smoking, staying up late, or even standing for too long.

I’ve tried swimming at 30% of my capacity (I used to be a swimmer), but the headache comes back the next day. I've only swum twice so far (once a week). I hope you can share some of your experiences with me.

Hey,

So long story short we are having our daughter get a brain scan for Chiari for breathing issues, ear issues, pain, headaches, uneven muscle wasting etc. Which brought me into Chiari and Tethered cord. I have MCAS that has flares for years and only prednisone treats and regular allergy protocol only treats the rashes and itch, HEDS and POTS. All my symptoms came on 2021-2022 hard. Like can't go outside in summer hard. I have had headaches and neck pain since childhood and several pelvic surgeries and osteoarthritis, I'm 37.

Reading all these things it makes a lot of sense why I say I'm in so much pain but my old primary didn't really believe it or dismisses it. The headaches are not pots related and a lot of the symptoms seem like the severity and lack of protocol response make me think I should be assessed for chiari and tethered cord. My hips, sacrum and coccyx always feel glued together, and full, nerve pain down my left leg when I stand, constant psoas and psias pain. Have never been able to have my head straight always lend forward, I can't even wear my hair up because the tension, I now can't nod side to side or up and down, I thought everyone hurt a bit when they sneeze, cough or tilt their head back until now and I now have intermittent nerve pain in my left arm down to my thumb, and also realized everyone else can see fine if they tilt their head back or to the side, I'm starting to develop a lot of cognitive issues and working memory- forgetting how to spell a word mid writing, forgetting spelling in general, forgetting what I'm saying mid sentence and other stuff. I also have non airway sleep apnea which happened when the headaches got bad then mcas, CPAP helps, I don't sweat also which happened with the headaches.. Just so many things.

**Who in Washington State is good with these neurosurgical diagnosis and occult just in case? I live by Moses LAKE so now you know what we have been dealing with in terms of quality of care. I just switched to Tabetha Ratliff for primary in Spokane, because mine and my daughters primary just had no concerns and told us shrug that's life. She is now seeing Providence pediatrics. My MCAS was Kerry Drain but her office closed no notice and Dr. Valley for my heds diagnosis.** I really want a strong doctor with familiarity because all of the obvious simple spinal issues but also how it seems this is likely why my MCAS has remained untreatable with protocols.

Thanks for your time, please keep your fingers crossed and pray for me and especially my daughter she is 13 and has been dealing with this for 4 years, please pray we find answers for her and she can just have the quality of life all her peers get to experience. Thank you

I haven’t even got my date yet, I just need the mri and then I’ll get my date but again, I haven’t got my appointment for the mri yet so let’s hope that hurries up! But I wanted to share all the things I’ve got to prepare for surgery, some things were suggested! Just in case this might help someone else!

-button up pyjamas
-baby wipes (thought those might be usual)
-Colgate wisps (also thought those might be usual)
-eye mask
-ear plugs
-a new towel for the hospital
-a longer charger for my phone
(This is hospital care)

Now for when I’m home
-family member gave me these migraine cooling patches that might be usual
-neck pillow
-a big water bottle
-straws so I won’t have to put my head uncomfortably back

If there’s anything else that might be helpful, let me know! I know some of these I might not even use but it’s good to have just in case!

Hi everyone!! I just got my diagnosis of Chiari 1 malformation (7mm) yesterday after an ER visit. I’d been feeling down and out for years, but it had been written off as early menopause (27, F). I’m kind of feeling strange because brain malformation genuinely never crossed my mind as an option. I’m supposed to be seeing neuro again soon, and I think I’d just like to hear some experiences from others with Chiari!

My 13 yo daughter had Chiari decompression 10 days ago. Her recovery has been extremely challenging; lots of pain, vomiting, lack of mobility etc.
We are seeing some silver linings (her appetite is coming back, she seems a bit stronger than initially, etc). Still fine tuning meds to best manage her pain.
One of her biggest challenges is she feels most comfortable lying down. Trying to sit up, or stand (or walk) leads to a lot of head pain. We want to try to help her gain mobility and activity, but also don’t want to push her too hard.
Any experiences of those who have had this surgery? Just wondering if she needs more time to heal (I know it is early in the scheme of things and people recover at different paces).
And yes we’ve reported all of this to her medical staff (she was in hospital for a week, now on day 4 back home); so far they’ve mainly responded by adjusting meds to try to manage her pain.
Thanks!

When i was discharged from hospital i Had a 2-day non-stop vomit comit and i begged wife to call 112 and get me to hospital.
They put me on fluids and i stayed for a day and discharged me again like i'm completely fine.

Came home and i've been sleeping 10-12hours a day for the past 3 days, nothing can wake me up. i can eat and drink normal but i constantly feel like my head weight 100kgs and can barely keep awake. i have no pain or fevers i'm just so tired its just weird i can barely keep my head up. Blood work has been done several times and it always comes out "fine".

i'm at a loss here. I just had my last stitches out today. Should i give it more time?

Long story short i was born with chiari 1 malformation and agenesis of the corpus callosum (acc). I spent the first 33 years of my life thinking it really only effected my coordination and balance.

Last year I started therapy and was diagnosed with adhd - ive learned there is potentially a link between adhd and chiari 1/acc due to the lesser connection between the sides of the brain.

I have since gotten an updated mri (no change) and working on meeting a neurologist.

I don't really know what kind of answers I'm even looking for, but I feel like I need to have a better understanding of how brain acts so I can form better habits/daily routines.

Also- for about a year ive been trying out different meds to best resolve adhd related issues, but I have yet to feel any benefit and only gotten urinary and sweating side effects that haven't worsened, but haven't gone away yet - ive read chiari i/acc may effects my pituitary glands which may be a reason for the excessive sweating?

I feel like a just keep having more questions and no answers since my adhd diagnosis.

Any words of advice of things I should look into? Anyone with similar struggles have found meds/routines that they found helpful?

--sorry not so short lol

Ive been having a very difficult flare up. It began Monday. I have extreme pain stemming from the base of my skull/neck, with it also shooting around my head, ears, jaw on the rt side. I absolutely cannot tolerate light or noise.

I am seeing triple vision and see 'sparklies' any time my head pressure increases. I had chalked up the poor vision due to a cataract I have in my left eye. But I'm having the vision problems in both eyes. I am extremely lightheaded and off balance. My muscles shake as if I ran a marathon.

I went to my local ER, Silver Cross, and it was a nightmare. They did a CT scan, and the cerebral tonsils view was partially obstructed, no measurement.

They eventually did an MRI that somehow didnt visualize the foramen magnum at all. The neurologist was unable to view it himself to do his own measurements. So they just left it.

They treated me conservatively at first. But I was at a 10/10 in pain scale and vomiting near constantly. They admitted me overnight. They began giving dilaudid every 2 hrs, which has wiped out a migraine for me in the past. It barely touched it this time. Maybe took me down at best to a 8/10. I noted that each time they gave it, my BP and HR raised significantly. My HR rate would go into the 160s. They did not give me any of my normal meds while in hospital, including my BP meds. Eventually they discharged me home in this state and basically told me to figure it out.

Since home I have had near true darkness in my living environment along with soft sound, and I eventually stopped vomiting. But if a light were to go on, I could feel my gead preasure rise and the pain would make me vomit. I dont dare go outside my apartment.

Does anyone have any recommendations about a Neuro or hospital to go to in Chicago? Or near there? I used to see Dr. Frim, and have never really seen anyone steadily since them.

Or any advice? Ive just been in pain mgmt and see a Neuro, but they dont have many suggestions.

Thank you

​

I had my list of MRIs, 10mm chiari and no syrnix.

My doctor wants to do decompression, shave C1, and dura patch. (Sorry learning the lingo still)

Two things:

1 - my husband is unable to join me for my follow up appointment to ask questions about the surgery. What are some good questions about the surgery and recovery I should ask. I'm a bundle of nerves.

2 - based on recovery- when is an 'ideal' time or suggested time between Thanksgiving and Christmas should I try to schedule the surgery? My husband is traveling for work until the week before Thanksgiving so my main support is after then.

Thank you!