r/chiari

Im 35 year old female, 5'1, a little overweight but on a weight loss journey that's really going great.

Diagnosed with hashimotos thyroiditis, hyper mobility, chronic migraines, Idiopathic intracranial hypertension,chiari malformation 1, FND.

Currently on medication for all of the above bar hypermobility. I am also in the UK

My current issue is that my neurologist is adamant that none of my symptoms are related to chiari and its all just coincidental. Id like a second opinion but the only other neurologist is on personal leave and has been the last year. If I need to travel to actually be treated im happy to do so but im just looking for some other opinions as its alot of money.

The backstory is that ever since I can remember ive had weird issues with my neck and head. Things I can remember are:

Can't move my head into certain positions without immediate nauseating pain.

Having anything such as pillows, tops of seats etc. Pressed into the lower part of my head also creates an instant nauseating headache.

Clicking neck and feeling cracks and bubbles.

It has always felt unstable but thought I was being dramatic.

Had migraines since I was a young child.

Sudden weakness in various limbs

Tingling in face and limbs

Bladder incontinence on and off (also had my bowel do this for a month with no explanation)

Trigeminal neuralgia on and off my whole life

Ear whooshing

Dizziness

Gushes of clear fluid from my nose

Vision disturbances

I had a horrific recovery after an epidural that felt like my spine and brain were being electrocuted and crushed on a vice. Literally couldn't move

I was diagnosed with idiopathic intracranial hypertension a year and a half ago out of nowhere. They said it was my weight however id been at rhe exact same weight for years and I have since lost a lot of weight and its feeling worse than ever. I was told the medication is managing it well at my last ct scan however I feel no better. Headache, pressure, vision problems, head rushing, ear whooshing, cant change positions without extreme dizziness and head pain. In February I woke from a nap with my entire right side numb, weak and floppy. After confirming it wasn't a stroke they said it was hemiplegic migraine (which i have had in the past). Im still numb, weak, severe pins and needles and pain. I now use a walking stick to get about or else I cant really go longer pwriods of walking outside due to pain and weakness.

I have had several "episodes" as I call them where ive loat consciousness and gone stiff as a board, wet myself, been non responsive. Come round ans felt groggy, super sore on my body and very weak and dizzy. Almost like im drunk. The neurologist ruled out epilepsy with a test but insists these are seizures and tried to give me anti seizure medication which I wont take. He said these are related to FND. Apparently my brain is so overloaded with issues it's having a little moment.

They discovered the chiari during an MRI when I was going through testing and treatment for the IIH. They have said that everything im experiencing is either migraines or fnd. The chiari was a coincidental finding and has no bearing on any of it. Im frustrated as my entire life has changed. I can no longer work as a seamstress as I cant see. I rely on my family to help care for me. I require aids and supports around my home. My life has been severely impacted by it l but they refuse to look into it more.

Is this worth paying privately? Travelling? Pushing against the system for more testing? Its going ti be an exhausting, stressful and long process if I do any of these. I have no idea if it's the right course.of action. Id love any input and advise and it would be gratefully received

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!

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 head 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

Hey everyone, I am looking for some insight from fellow Chiari warriors. I am currently dealing with a severe cluster of symptoms and am trying to figure out if my Chiari could be the primary culprit.
I have been dealing with debilitating symptoms for the last two months, including severe positional/upright head pain, constant brain fog, vertigo, balance issues when walking, and noticeable leg weakness. I was recently checked for a spinal CSF leak with a thorough dynamic CT myelogram, but they didn’t find a physical hole or active leak on the live imaging.
I know that Chiari Malformation means the cerebellar tonsils sit lower than normal, and I've read that this can physically crowd the foreman magnum. My questions for this group are:
Can Chiari mess up or block the normal flow of cerebrospinal fluid (CSF)?
Can that disruption in fluid dynamics directly cause severe vertigo, off-balance coordination, and leg weakness?
Has anyone else had an inconclusive or negative CSF leak workup, only to find out that their downward brain sagging/positional symptoms were driven entirely by their Chiari?
I am trying to map out my next steps and figure out what other imaging or specialized testing I should look into. Any advice, personal experiences, or guidance would be greatly appreciated!

What are the things that were lifesavers for you during your recovery period? I’m trying to be extra prepared! Even if it’s random or silly! Thanks!

Anyone else get nervous about catching a cold virus? The last time I had one was back in February and that is what caused my symptoms to get worse. Also, I've never gotten a flu shot, but I also have never gotten the flu as far as I know. But my aunt and cousin (who is a neurologist) believe I really need to get the shot, as well as a Covid booster. I get the concern about how getting the flu can be really bad for those of us with Chiari and syringomyelia; I'm just hesitant.

Hi there, I’m 23 and I started seeing a pain management specialist for issues including nerve pain in my neck. Not diagnosed with chiari, although not ruled out yet.

My main issues went away for a few months but returned more recently. I’ve been finding that if my neck is bent too far forward, or lands in a weird angle when I’m lying down on my side, it will trigger this terrible nerve pain, impending doom feeling and my vision will cut out or become very blurry. In the past, I’ve tried to relax my body or move my eyes while in the triggering position, and was unable to see properly until I fixed my position, which would help immediately, which is leading me to think it’s a nerve issue.

I’ve been experiencing some occipital head pain, neck pain, and have often avoided exercising in ways that involve a lot of jumping, bending forward, or being upside down since it makes my head feel full and bad.

I’ve already had an x-ray and they said there’s no indication of cervical instability, which was a possibility I had in mind before. My neck however is very straight so I have physical therapy scheduled for that, currently the plan is to get a MRI to see if it might be chiari if the PT doesn’t help some of my symptoms.

I also think my symptoms are possibly worse now due to allergies and chronic cough returning a few months ago.

Of course nobody here can diagnose me, but I am most curious as to if some of the positional nerve pain and vision changes are as common with chiari or is it often more of a constant, underlying nerve pain with chiari specifically?

I have Spastic Cerbral Palsy i got because i was shaken and slammed as a 2 month old baby. Im dysphagiac and moslty right side dominant. I have Ataxia on my diagnosis list as well but not sure how or if it applies to my CP diagnosis because i was to young to remember when it was added.

Back in 2013 i got diagnosed with Chiara 1 malformation at 18 years old. Since then my most recent MRI says im now further measuring. In pite of perfectly fitting the critera for Chiara and it remaining on my diagnosis list.

The Neurosurgens I've seen about it have said its not Chiara they consider what i have as low lying herniated tonsil... WHICH IS HOW IVE SEEN CHIARA DESCRIBED 🫠 they also say i should not be bothered by it. IM PRETTY BOTHERED BY IT.

I am pretty sure that its being over looked the fact that i have CP and had a traumatic brain injury leaving permeant damage because i was shaken as a baby and had my head slammed pretty hard (several times, the person who shook me was trying to intentionally kill me and it was done with considerable force)

Doctors will bring up CP and say "well thats common for people with CP" and I will say "but i didn't always have some of these symptoms and other symptoms i did have are now worse and not responding to the standard treatments" and doctors will say "Cerbral palsy dosent get worse over time" and i will say "EXACTLY!"

I think that CP is a factor that is adding to Chiara and visa versa which is potentially causing my symptoms to be more severe or is causing confusion because the symptoms between the two that dont overlap are sitting all buddy buddy with the rest of my symptoms. Like an all inclusive Broke brain boogy woogy party.

I'm just curious if anyone else has these two conditions and if they feel the same way OR if anyone has had a medical provider agree with them or proof of concept has shown.

Thank you everyone 🥰

Just diagnosed two weeks ago, put out of football and other contact sports. Still have not had a follow up but my Chiari is Type 1 and it is 7 mm “deep” I guess? I am new to this and it kind of freaks me out. Help please 😭

Hi,
I’ve recently had a CT scan due to headaches, and they noticed that I had downward displacement of the cerebellar tonsils. I’ve been pushed through for an MRI scan, to look further into it.

I’m a little confused what it all means. Anything to do with the brain sounds scary, but it seems like I’d have known if I had bad symptoms. When I’ve been looking into it, I can see some things that I have that have never been linked, such as ringing in my ear and scoliosis. I also get a blur in one eye when I’m tired, and my face can sometimes - but very rarely - droop. I also get shoulder and neck pain linked to my headaches.

Hopefully I’ll get more answers from the MRI!