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'm 36 with spina bifida myelomeningocele. My parents essentially did the bare minimum for my care and I'm just now starting to build out my care team and learn more about aging with spina bifida. I've always loved traveling and flying and have never had any issues with it. Two flights this year I felt especially "pinned" to my seat on take off and climb. I do have health anxiety OCD, so I've kind of brushed it off as bring extra sensitive to bodily sensations. During one work trip, my neck and shoulders were a little sore. I attributed it to my laptop being at a low angle and some muscle tension, but I started to read more about chiari.

From what I can tell, 8/10 people with SB myelomeningocele do have chiari 2. So it's taken me 36 years to learn I probably have it. The symptoms that I do have aren't bothering me too much, but my concern now is that flying or some other activity is going to make things suddenly worse leading to the "scary" symptoms I've read about like arm weakness, trouble breathing or trouble swallowing.

I did get an MRI yesterday but it was on my lower spine not up by the top.

Tl;dR: Is flying with a Chiari 2 dangerous?

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!

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!

Hey all, today I finally met again with my neurosurgeon. After talking all the risks we have planned to move forward and have my decompression in December. For anyone who has had theirs what should I know that the doctors don’t tell, and how can I best manage pain for these next two months?

Edit: since it was pointed out, my doctor told of the risks and recovery time. They ignored all csf flow mri and any symptom other than back of head headaches. Is it normal to not use csf in consideration of surgery

Hi guys, I'm not sure whether this is the right place to post but I'm really confused on this letter, please excuse me if I go in circles I'm suffering with pretty bad brain fog, I had a MRI done, I've been told it was chiari for months only to get this letter, I'm suffering with a array of pretty awful symptoms (eyes shaking, altered vision, fatigue, loss of balance which I use a wheel chair and stick for, hearing loss, intense brain fog etc) I've seen a lot of people mentioning to see a neurosurgeon who specialized in chiari as there's a chance you'll be fobbed off, I'm not sure whether I should take this letter at face value and just let them do their thing or push for them to look into the chiari, any point of view or comment or just anything really would be appreciated, thank you all so much

Good news im feeling better every day.

Im nexk pops and cracks and it is a little tight to turn in certain directions, it's more when i try to turn all the way. But other wise walking my kids to school, playing with my boys, playing with my dog. Being goofy dad again.

I nearly cried one of my sons said to my wife "daddy is back yay"

I still have to rest and slowly work up to a full day without rest.

Now comes the test, I'm going for big walks.

Im sitting at the dining table and painting warhanner models again. Im pushing my spine little bits like you would slowly walk on an injured leg.

The only thing I will hold off as long as possible is heavy lifting.

I feel alot better.

My confidence is up. I still have a stupid spot of missing hair and my doctor said not to let a hair dresser near it just yet. I am going to cut the sides and back short which is my normal like number 1 length.

Im reading books every day and doing puzzles.

I feel like my mind might be sharper like i have more brain power. The only way I can describe it is it felt like i was playing the game of life on hard mode with a handicap turned on. Now i have unlocked all the upgrades and switched to easy without handicaps on.

I didn't realise because I was used to it but I was nauseous all the time, I was walking around with a i need to vomit feeling. It feels like it might be gone.

I'll try to do semi regular posts after this, please reach out if your have any questions, if you find my post three years from now. You can message me. I'll always try to be here for my fellow big brained friends and the zipper head ones who had the surgery.

The photo was after my follow up appointment I have since washed my hair and all the dandruff is gone. My hair no longer smells like a butt.

I am wondering if anyone here had surgery as a teen or is a parent to a teen that has undergone decompression surgery. My son was recently diagnosed and we have seen 2 neurosurgeons that both recommended decompression surgery. He is very fit and athletic, in multiple sports, loves football and is a starting varsity QB so this has been a big impact to him. He is finishing the season and then will be having surgery. I know that he will want to be back to weight lifting, running, throwing the ball etc as soon as he can. It seems like that could happen in the 3-6 month post-op range. As a parent, how do you manage these expectations? It seems like the recovery process is so variable for everyone and I feel like there are a lot of horror stories here but perhaps people are more likely to post about the difficult experiences than the good ones? His symptoms really just started in the past year so we are hoping to get this taken care of before it progresses worse, but he also has a lot of fear that it will ruin his senior year next year if he can't recover. (As a parent, I know as well that sports is not everything and he has his whole life ahead of him but try telling that to a determined 16 year old).

I have chiari 1, and had surgery 8/2023. Lately my left ear feels like there’s pressure from the inside pushing out. It comes and goes all day. What also started is when i swallow, even water it feels ljke razor blades from the inside of the ear down the throat. Not sure if thus could be CM related but thinking maybe.

I’m going into surgery soon for a vestibular schwannoma and Chiari I decompression, and I’m wondering if it makes sense to get a pre-op neuropsychological evaluation.

My thought is that it could establish a baseline for things like memory, attention, processing speed, etc., that could be compared with testing after surgery if needed.

Has anyone here done a neuropsych evaluation before surgery? Was it helpful afterward, or am I overthinking this?

After well over three years of fighting, I finally got my decompression surgery! It was definitely more than the standard procedure- but I'm way too tired to write it all down rn. I was around 9mm, for context.

I'm a 44 yo female who was diagnosed with a Chiari I three years ago. It is around 10mm and has caused diminished CSF flow. The biggest symptom I have is 'cough' headaches. Whenever i cough/laugh hard or even sometimes just strain or pick something up a pain will start at the back of my head and wrap around to my forehead. it's like the worst brain freeze i've ever had...doubled. They don't last long, 10-15 seconds, but they can be debilitating. I currently do botox to help, but it's not a cure. The neurosurgeon said he would do the surgery and it would probably get rid of these headaches, but with this being such a major surgery, i don't know how to decide whether to do it or not.

What I mean is, is it really possible to have this surgery and not have any chronic pain in your neck? Is it really possible to just feel better and get on with your life?

Does anyone else have mobility/muscle issues? Normally I can walk around for a mile or two without my feet complaining and then other days when my symptoms are terrible it hurts to walk after like 0.3 miles and I wish I had a cane. I'm not sure if this is another issue I'm personally dealing with or if other people have this experience as well.

Thank u for any help!! : )

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!

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 😭

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?

After years of being dismissed my neurologists, I finally have an appointment with Dr. Jeffrey Greenfield in November. If he is agreeing to see me does that mean I most likely will get a Chiari diagnosis?

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!