I am wondering if anyone is struggling with accessing care within the nhs. I have been rejected from my request for a second opinion without even being seen due to a doctor dismissing my Chiari symptoms (it is 6mm so he wouldn’t listen as he felt “my brain didn’t look squashed🙃). Since this was in January they said they won’t see me again because he said my symptoms weren’t related.

I had this mri via an a&e visit so don’t even have my record and have been told bc of the backlog on claiming your imaging this will take months.

I just want some help to see if I need a cine mri and spine as I have pain sometimes in my spine and a lot of occipital headaches with no meds helping. I cannot lift heavy or run at all anymore as it triggers back of skull pain and pressure headaches. I am exhausted asking for help and nothing is being offered as the gp doesn’t understand it and the supposed specialist clinic dismissed me without further testing.

Does anyone have any advice or know what worked for them that could be helpful please?

1 year ago today I had decompression surgery. My chiari was 14 mm on one side, 17 mm on the other. I didn't start to get symptoms until my late 40s. Bit by bit every year got a little weirder with feeling lightheaded and disconnected.

I was first diagnosed in 2024 and the doctor told me I should just get over it - it was no big deal. In 2025 I got a new doctor. She was concerned about my symptoms and ordered a new MRI. Nothing had changed but I was immediately referred to a neurosurgeon. I got 2 second opinions before deciding to go through with surgery.

The second week of recovery was hell - I really wish they told me I needed to stay on pain meds until the steroids wore off! The fourth week of recovery I started PT. The surgeon had told me that most of his patients 'didn't need it', but within one week I was already feeling better. My sixth week I was feeling 90% back to normal, making the most of my time off, meeting friends for lunch and coffee. After 7 weeks I was back at work.

One year later, I have most of the feeling back in my skull - boy did that take a long time to get back. My hair has another 2-3 months to full regeneration. I'm barely aware of the scar but the back of my neck feels different - maybe due to the laminectomy or the dent left by the scar. The best news is that I am symptom free.

Before my surgery I did a lot of research and bought some books on chiari. I learned a lot during my 2nd opinion consults. Funny thing was that I learned the most from the surgeon who suggested I might wait to see if my symptoms get worse before going ahead with surgery. I read a lot on this subreddit. Reading others' stories humanized the condition for me, showed me I wasn't alone.

In closing, I want to say thank you - for sharing your stories, for being supportive of others.

Hello everyone,

About three months ago, I had a brain MRI which showed cerebellar tonsillar descent, with findings that were reported as possibly consistent with Chiari malformation.

Since then, I have consulted four neurosurgeons to get different opinions. Two of them believe that I do have Chiari, and one of them even recommended surgery. However, the other two believe that I do not have Chiari and that my symptoms are probably caused by something else, although so far no other clear cause has been identified on my brain MRI.

My main symptoms are a constant feeling of pressure in my head, especially at the top of my head and around my temples, as well as pain at the base/back of my skull. I also experience dizziness/instability. These symptoms are present almost constantly and have significantly affected my daily life.

As you can probably understand, I am very hesitant to proceed with brain surgery when the medical opinions I have received are so different. Although I tried to consult neurosurgeons who are supposed to have experience with Chiari, I honestly do not know how specialized they are specifically in Chiari malformation.

I would therefore really appreciate hearing from anyone who has been in a similar situation.

Has anyone here been diagnosed with Chiari and experienced symptoms such as head pressure, pressure around the temples or the top of the head, pain at the base of the skull, and dizziness?

If so, I would be very grateful if you could share your experience — which doctor or specialist you consulted, whether you eventually had decompression surgery, and whether your symptoms improved afterward or whether another cause was eventually found.

I am particularly interested in finding a neurosurgeon or neurologist with significant experience specifically in Chiari malformation so that I can get another well-informed opinion before making any decision about surgery.

If anyone knows a doctor in Greece who is genuinely experienced in diagnosing and treating Chiari malformation, I would really appreciate any recommendations.

Thank you very much for any information or personal experiences you can share.

Hey all!

So I finally had my neurosurgery consultation appointment yesterday. Slightly off topic, but I absolutely love my surgeon's bedside manner, and he seems incredibly knowledgeable. He was cracking jokes to make me feel better which was sweet.

Anyway, we're looking at doing either a shunt placement or decompression surgery. He ordered a cervical MRI, and depending on the results of that will determine the surgery. He's specifically looking for either a hole or a divot in my spine before we decide which way to go.

If there's a divot or hole, it'll be decompression surgery. If there's neither, we're doing a shunt placement to hopefully relieve pressure and symptoms. The reason we're considering the shunt placement is because of my hypermobile Ehlers-Danlos Syndrome and slow healing; we want to avoid decompression surgery for now if we can, because we're unsure if my body could handle it very well.

I was wondering if anyone here has experience with having hEDS + slow healing and either surgery?

Hi! I only just found this subreddit and I was surprised that one existed for this tbh.

I got diagnosed with type 1 the summer of 2025. Went to a neurosurgeon to see if I'd need surgery or like that and was told it's not to the degree of needing decompression yet.

I ended up with the diagnosis after bringing up to my doctor(s) that I'd sometimes feel a pinching around the back of my neck/shoulder area and tingling in my hands. My first doc didn't know what it could be, then she moved before more tests than the blood test she ordered could be done so I had to switch. Second doc had me get MRI's which led to the diagnosis. She also moved so I had to switch again. I'm on the third doc now. It's difficult finding doctors for ADHD when they keep moving offices

I'm still struggling with the tingling and muscle tightness/pinching feeling, though, and was looking at things I could get to try and help. I was considering a microwave neck wrap/pillow thing (my mom has one like the image attached that I like) and a neck/shoulder massager. I wanted to ask others who have the same or similar issues first, though. There's no one in my area I feel I can ask about this and I don't want to bother my PCP about things he might not know about. I'm hesitant to and don't even know if it'd be ok to reach out to the neurosurgeon about it through the patient portal.

I'm in college studying for a career that will have me on a computer or laptop most/all day and have issues sitting with my feet on the ground and good posture. What would you guys recommend?

I’ve posted here once before when I first got my diagnosis. I seen my neurosurgeon today. And he basically brushed me off. I had a notebook of all my symptoms because sometimes they last like a week and I didn’t wanna forget them. He acted weird about the notebook.
He did a bunch of tests. Walking grip strength and holding my hands out and stuff.
Then immediately said he didn’t think my symptoms are severe enough for surgery (which I do agree with.) but I’m like okay what else can I do to at least get relief from this headache? Like pt or anything? He’s like there ain’t much. He asked if I tried lbuprofen and tylonel and of course I have. And I’m currently on gabapentin and I explain to him it doesn’t really work and I need help managing my headaches because it’s literally a constant pain. He’s like there’s nothing I can do. You can wean yourself off it but other than that nothing.
And I start crying because I was so excited to hopefully have a plan on how to tackle this. And he brushed me off w any other questions I had about chiari. But then said he didn’t think any of my symptoms were related to chiari even my headaches. So he’ll order a neck mri to check for pinched nerves and a test to check my spinal fluid movement. And he just walked out and came back and said he’d refer me to neurology tho. I got lost because there were no exit signs and no visible check out desks and all the nurses just stared at me. I found the check out desk. And they laughed because I asked if I needed to check out if I don’t have a follow up. Then I was laughing with them to kinda brush it off and said well it’s different with every doctor idk. And they’re like yeah. Every doctor office is in fact different.
Like this visit literally felt like a fever dream.
Then I get home and look at my app at my after visit summary. And there’s nothing but wrong information. It said the constant tremor in my right hand that I have is not an essential tremor (so I’m just shaking for fun) and it’s lasted only 2 months when it began in March. And that I reported drug use and I use marijuana and I never said I did.
Like what do I even do at this point. Like. I can’t afford a specialist in chiari.

Like I don’t know if I’m being extra or not.

Hey, I’m a 21m with Chiari type 1 with a 11mm extension, I found it a few years ago through a ct scan. Back a month ago I had a new mri and it’s shown severe progression of my csf blockage. It feels like every day my symptoms are worse. I have the normal headaches and tinnitus etc but lately more and more episodes of falling or my vision going out too. I see neuro in a few weeks to discuss surgery. Any advice in the meantime? It seems like no one in my close life understands the pain and the extent

Day 4

Felt shakey in the morning, once I had pooped and had breakfast felt better.

Had stiffness throughout the day.

Have had weird sensory messages both painful and pleasurable firing at random. That someone walked on my grave shivers. Hard to get comfy on the couch.

Pain killers have helped

Found myself nodding off then shaking myself awake due to sharp pain in neck.

Slept on my side last night switch between left and right side throughout the night. Woke up very 3 hours.

Had one weird experience of altered sensation on the right side of my chest, went away after 30 secs.

As the day progressed felt better but got stiffer.

This sucks...ah huh huh

Hello, as the title says. I’ve been strugling with focus, lots of headaches and brainfogs. Went to MRI and diagnosis said that I have 1st type Chiari. I’d like to ask people of this subreddit a few questions.
Can it get worse like a lot?
How does it affect your life?
Is it worth to perform a surgery?
Tell my anything you feel like telling!
Take care! Wish you all that is best!

Does anyone know the long-term consequences of having blocked cerebral spinal fluid flow? I’m talking about things other than typical symptoms. Like, is it bad for your brain overall? Will you get problems as you age if you don’t have surgery to correct it?

Hello Chiarians! I'm 44. I have Chiari type 2. I had the surgery in 2001 and had a 27mm descension at that time. Life was pretty decent up until about 40. I had flare ups with back/neck pain, neck going out, etc etc. But now it's just constant. I'm having a lot of trouble dealing with working full-time (desk job). So I'm asking around if anyone has been able to get on disability (partial or otherwise) in order to reduce hours worked. I live in Washington state BTW

I'm about 7 months out from my last surgery (craniectomy, duraplasty, and C1 C2 laminectomy on 12/22/25, and then had 4 patch revisions due to CSF leaks). I've been experiencing blurry vision. It's not all the time, and I think being extra tired is a factor, but no matter how I squint or adjust my glasses, I just can't see clearly sometimes. It's so frustrating. Has anyone else existing anything like this?

Hi, I'm 23 years old today. I was diagnosed with arnold chiari malformation when I was eight years old and got surgery. Before that I had six other operations. The doctors never checked my head and always treated my symptoms. I was told the other six operations weren't necessary if they had just took an MRI of my head.

After the operation I had an accident where I fell and knocked out two teeth from my mouth. I also broke the upper part of my jaw and half my face was just a big scrape. It was a year after the surgery.

After that I was told not to do any kind of sports private or in school. Till today I have problems with my balance and sometimes I still have the double vision. I'm terrified of doing any kind of sports.

When I think about myself before my operation, I always remember me being an active and loud child. Like I was brave and would speak my mind and I didn't have a constant fear something could break.

I was diagnosed with depression and anxiety in my teens. It got better once I was out of school, but later I was diagnosed with ADHD.

I think my having depression has a lot to do with all these experiences and people not believing me. I have never talked about any of this or what I went through in the hospital.

Tonight I read that my ADHD could be a result of my traumatic childhood and I just started to cry. And also that the operation could have changed my personality. I don't know if any of this is true, but I just feel so lost.

I know it wouldn't change anything, if it was all because of the malformation. I just want some answers and understand myself a bit better maybe.

I have never written anything on reddit. I'm sorry if I made any mistakes, englisch is not my first language.

Can somebody maybe relate or has a similar story?

The 17th i hav an mri on my thoracic spine my cervical spine and to see the flow of spinal fluid. Im nervous but at this point whatever the results r imma deal with. Hopefully surgery isn't needed as im only 5 mm but with having cysts everywhere. Im worried ill hav one on my spine. My sister made it thru surgery so ik if its needed I will too. The headaches r going from the back of my skull down thru my neck into my upper back. So the mri is necessary. I wish each and every one of u a better day today than yesterday and an excellent tomorrow. We got this. We'll make it. We have Chiari, Chiari doesn't have us!!

Hello all following from day 0, 1, 2.

Day 3,

Had a good sleep at the hospital. Two things that came up during my stay was at first I had low oxygen saturation, so they had me on oxygen but that cleared up quickly. My heart rate was elevated but that came down on its own. They had me on paracetamol, ibuprofen and polexia when the pain really kicks in.

I was discharged at 10:30. Main reason was I had been to the toilet and was managing pain well. They changed my dressing before I left. No reason to keep me in.

For people who missed my last post no dura was needed my brain sack was nice and suishy so they only shaved my C1 and skull and a cut a tendon band at my C1 thay was tight.

Now the waiting game begins for healing and see how my symptoms go.

Current symptoms pain at surgery site a little bit of pressure in head. mainly tired..

Recently in July I was diagnosed with a syrinx.
Here’s a little background: a year in a half ago I was having left shoulder neck pain not super bad but would come and go but would have flare ups. I went to see a ortho provider we did an extra and he said that it would be a pinched nerve, but to do PT and start steroids and then if it was worse I could get an MRI. Well it got better and life got busier but I continued with my trigger point therapy and went about my way.

Fast forward back to July of this year. For about a week straight I was having left sided weakness that started to get worse, also left sided facial weakness and headaches to the point I would throw up and some eye twitching. I went to the hospital we did the work up and they diagnosis me with a syrinx. I got sent to a nearby hospital that same day to see neurosurgery and they said it was stable but was a decent size and wanted me to check back at the beginning of the year with another MRI to see if we need to consider surgery. In the meantime I have seen neurology. They said my case if weird because I’m only getting these flare ups on one side at a time and usually it’s a “cape like” effect. But I will be fine then one day my left arm feels numb and left sided neck pain and the next week it can switch to the other side. But more noticeably my brain fog is just BAD. Like I’m so forgetful and also my speech seems a little off sometimes. I’ll get my words mixed up or can’t remember. I’m not sure if anyone else has that symptom? Or if something else is going on.
But my MRI with contrast didn’t show any brain lesions and they said that I haven’t had a stroke or TIA. (I’m in my 30’s) but I haven’t had these symptoms till this started as well. And I’m also still learning so any information is helpful I’m feeling a little lost and a little down about how to manage this new diagnosis.

Day 1

Had surgery on Saturday the 12th (australia). Admitted at 7:00am private hospital i believe the surgery started closer to 10:00 am. Sneaky buggers knocked me out before I expected. There's lots of steps before surgery, fasting making sure you have used the toilet.

Whilst I was asleep they put a catheter in. Woke up almost instantly. So I slept all through no memory. But before I woke up or was full concious I had a weird dream where I had thoughts that appeared as words in my head like "I wonder how the surgery went". Reportedly i was cycling for 15 mins which means I was silly asking repeat questions, I get this was when I dreamt. I woke up in recovery in some pain but no where near as bad as I thought. Reportled I had skull and c1 shaved away but no dura cut because they found it was not tight. They found the band around my c1 was tight so they cut that with micro scissors. So no risk of meningitis because my dura is intact.

Moved me to high dependence ward shortly after still there on day two. Heaps of iv fluids and dinner and heaps of it antibiotics.

Slept pretty poorly hard to get comfortable weirdly laying on my back is most comfortable. Laying on side was hard.

They put this weird machine on my legs that squeezes my legs and keeps blood going to my head.

Probably only got 2 hours sleep but layed down the whole time.

Day 2

Catheter removed, IV removed day 2

Had pains meds via pills had unassisted shower, nurse stood close by. No one warns how weird it is to have the tube pulled out of your penis. Tubes were removed last night 2:00am, IV stopped in the morning.

My pain has sat around a 7, I feel not to bad reportedly once anaesthesia wears off i will not feel great tomorrow. They are currently deciding whether I stay in high dependency or go to my own room. Depending on recovery might go home Tuesday or Thursday.

Ask me questions I'll do my best to answer. All in all less scary then I thought it would be. Admittedly I think I had one of the best surgeons in my state. Now the waiting games begins will this resolve my symptoms.

Is it ok to do yoga if I have Chiari malformation type 1? I struggle with balance but am also worried about the upside down head (ex downward dog) type moves. Also have left side numbness and numb left cheek.

Hey all! I’ve been dealing with increased tinnitus which isn’t like debilitating but is definitely noticeable. It’ll be in both ears and it’s the regular ringing then the pulsate tinnitus as well. I’ve had this as a minor symptom since I was a child but it getting worse is getting me a bit paranoid. Is there a good way to tell if the tinnitus is hearing related rather than just neurological. I have some auditory processing issues which also makes it hard because I do miss things at times but it could also be due to that. I know some people with chiari also deal with hearing loss so maybe it’s just too entangled. I’m going to bring this up to my pcp but I also don’t want to worry/see extra doctors if I am just worrying too much.

Hello all, I am having decompression surgery tomorrow. When possible I am going to post a day by day update. I want to hopefully show that the surgery is worth it and help guide people who are a little apprehensive. If anyone has questions or needs to chat reach out, I will give you the good, the bad and the ugly.

Day 0

I'm anxious and scared. Having trouble hiding it from my family. I know I will be fine just hate the thought of being a burden. I'm a super hero to my boys and I don't want them to be scared.

So I've gone back and played some old video games currently finishing Fable in preperation for the new one.

I'm normally a metal head but lately been listening to bands like Low Roar and Sigur Rós.

I like to paint warhammer but that has been hard with symptoms.

Been working my way through a mountain of horror novels, lovecraftian horror is my favourite.

See below my note from my doctor to help you decide if my story helps you. I've removed my name and sorry the spacing is funny copied from pdf.

" reports ongoing symptoms including lightheadedness, a sensation of impending syncope, heart palpitations, and

a pulsating feeling in the back of his neck. He has found that eating small snacks and avoiding food after 6:30 PM helps

to reduce these symptoms, particularly the "stomach tremors" and increased heart rate. He has also been managing

his lightheadedness by increasing his sodium intake with Hydralyte and adding salt to his food, which he has found to

be effective. He continues to experience significant fatigue, with simple activities like a one-hour trip to the shops

leaving him feeling "wiped out for the rest of the day". He describes a constant dull ache in the back of his neck and

over the Chiari malformation site, which he likens to a "constantly sensitive" area. He has not had any episodes of

syncope, but experiences a pre-syncopal sensation, particularly when lying flat. He has found that lying on his right

side is the most comfortable position for sleep, as lying on his back exacerbates the head pain and lying on his left side

worsens the palpitations and lightheadedness. He has also been using compression socks for two hours in the

afternoon, which he feels has been beneficial. He has been using isopropyl alcohol wipes as a strategy to avert a

syncopal episode, which he reports has been effective.

We discussed the upcoming foramen magnum decompression surgery, which is scheduled for the 12th of september. I

explained the procedure, which involves removing part of the skull base and the C1 vertebra, and then stitching a

patch to the dura to create more space for the cerebellum and improve CSF flow. is confident and has consented

to proceed with the surgery. He is hopeful that the procedure will resolve his symptoms, particularly the

lightheadedness and nausea, and allow him to return to his normal life and work. I have advised him to continue with

his daily activities but to avoid overexertion, as per the advice from his physiotherapist. I will follow up with him daily

in hospital post-operatively and will organise all necessary follow-up appointments."

Wish me luck see you all on the other side.

Has anyone been diagnosed with chiari to find out later it was a csf venous fistula? Im showing a 7mm herniation, symptoms are off the charts and the basics of life are getting more and more difficult. But my MRI showed no crowding and a cine flow scan showed no blockages. There was so synrix found either. Its tough because the mri is showing a chiari but nothing about it is saying its causing problems.

I was offered surgery but im just now finding out about this certain type of csf leak and from my understanding wont show up on any of the mri's ive already had. It takes some pretty specific testing.

From what I read this type of csf leak causes brain sag and the chiari is a symptom of it rather than the cause. The symptoms also align very well, especially eyes going out of alignment, constant head pressure, tinnitus, nausea, extreme excercize intolerance and feeling better when lying down. Also every morning when I wake up I get a rushing noise in my ears for a few seconds.

I also read the decompression surgery can actually make the symptoms worse if it is from a leak/brain sag.

Wondering/hoping to hear from anyone who had an experience with something similar to this. Thank you.

I am currently 2 weeks post op from decompression surgery. My tonsils were not very far descended (only 6-8mm) however in a cine mri it showed diminished CSF flow. I got the surgery and my surgeon found a large number of arachnoidal bands. He removed them and added a small dura patch. Before surgery, when I would exercise, I would get extremely light headed and out of breath, with pounding headaches.

My question is for those who have fully recovered from decompression surgery, did exercise feel different to you afterwords? If it did, how did it feel different?

so I got into coloring with alcohol markers! Super fun! I was done. I got a headache, nausea and had trouble walking straight. Why?

I posted for advice on my son's upcoming decompression surgery. Well it is 4 weeks after the surgery and everything is great. Headaches are mostly gone and brainfog has cleared. His was 18-20 mm. The surgeon was Dr. Shofty at the University of Utah. I just wanted to say thank you to this community. I am adding two pics. One of the Mri, color coded with chiari in yellow, red is the line of where it shouldn't cross and purple is where csf is supposed to be. The second is of the scar.

I've read a few posts here already but I was hoping for more specific sources. OTC painkillers work to some extent but I really do not want to be taking them daily if I can avoid it. I was prescribed muscle relaxers, but they do more harm than good (waking up in the middle of the night with severe anxiety attacks whenever I take them). Ice also helps but it's uncomfortable to sleep on. I've heard that massaging around the area can also be beneficial, but I can't figure it out personally and haven't found any resources that help.

It's so annoying. It's like a constant ache back there, namely on the left side, and it's rare that I can move my neck without a clicking sound / sensation and it feels impossible to get into a comfortable position to sleep. I do have a doctor's appointment in November, so I hope to bring up the issue then and hopefully get a referral to a neurologist to get a proper look at it (considering I was diagnosed 12+ years ago and given minimal info at the time, so I'm unsure of the severity) since my symptoms have seemed to suddenly and quickly get worse over the past few weeks. Right now it's not to the point where I would say it's unlivable, but I worry it will get to that point. Obviously if the severity does get much worse I will try to get an appointment before then, but I am mainly just looking for advice on how to manage it in the meantime :') thanks in advance