Got my surgery completed yesterday! Went great, no complications so far, still in the NICU and I’ve shaken the post-anesthesia migraine. So hear goes a dumb question that none of the nurses seemed to know: am I gonna have a soft spot like a baby? Like if I’m in a crowded public place or something and I get elbowed in the base of the skull by accident will it be a one hit KO? This is a dumb thing to worry about but I have OCD and i desperately need to know if this is even possible lol. Thank you 🙏

Those of you whom have had the chiari decompression surgery who had mild to moderate symptoms, how has life been after the surgery? I'm especially interested in hearing from those who have EDS and/or autoimmune disease.

Did your energy levels worsen or get better? Any long term complications? Did you have to have multiple surgeries? How long did it take for your scar to heal?

I am a 22 y/o female, recently I had a brain MRI and my neurologist read my MRI and told me that it looks like I have a mild Chiari malformation but they do not think it’s causing my migraines. I have had migraines with neck pain since 17 1/2. I would get some episode where migraines would be debilitating and my neck would hurt almost as if my head was too heavy. It wasn’t until I had gotten into a car accident and suffered from a concussion in 2022 that my symptoms had gotten worse. I started having regular dizziness, confusion, difficulty concentrating, difficulty speaking, losing my balance, poor hand coordination, feeling weak, extreme chronic fatigue. A couple newer symptoms I’ve been experiencing would be a tender scalp, and hot flashes. I began seeing an orthopedic doctor because I thought I had carpal tunnel, my hands would go numb often. I was put in PT, I was told I have kyphosis and my neck is way too far forward for my age. All CT and MRIs of my spine have been fine. This brain MRI is the first I’m hearing anything but my neurologist failed to send me for further testing and no medications have worked for the migraines. I’m at a loss, I have been unable to work. I go to work, feel somewhat okay, work for an hour and end up dizzy, confused, nauseous, difficulty concentrating, my balance is bad. I feel outright just sick. I’ve contacted my PCP to get a referral to another neurologist or neurosurgeon. I really don’t know where to go from here. How did you find out you had Chiari? Were you misdiagnosed? What should I do from here? Or am I just overreacting?

Hello everyone I have a borderline Chiari case with intermittent symptoms that come and go. I want stories of people having symptoms vanish/improve by just becoming healthier. I understand that Chiari is anatomical but there are many factors that can affect (worsen/better) symptoms. Positive stories very welcomed. Thank you!

I’m so curious what made everyone go to the doctor in the first place. What symptoms were you having and how old were you?

To make this as short as possible: i'm 31, I got diagnosed with this at 26ish, but i've had symptoms that started popping up around around 15 that doctors always blew off that have all gotten much worse over the years.

One of the symptoms that has been bothering me the most is tachycardia. The doctors shrugged, blamed it on anxiety I literally did not have at the time, and that was that. Unfortunately for me, I ended up developing severe agoraphobia many years later and I cannot recover from that because during a panic attack my heart literally pushes 200 and makes me black out.

The pulse on my neck, anxiety or not, always pounds like a sledgehammer no matter how high or low it is. My vision goes black when I stand up after sitting for awhile and i'm constantly dizzy.

I have no idea if I have POTS or not (esp since my heart rate doesn't really go up when I stand up, but it pounds so hard over the most minimal movement like stretching my arms up) because I can't go have any testing done because of the agoraphobia, so it's like i'm stuck going in a circle and it drives me nuts. I have alwayssssss been convinced my tachycardia wasn't just an anxiety issue and it feels like my Chiari diagnosis backed that up over 10 years later

Do any of my symptoms relate to chiari or does it seem more likely to be related to other issues such as a CSF leak, autoimmune, autonomic system or compression issues?

Just for some context, I have gotten MRI results that say I have a 5mm herniation consistent with a Chiari type 1. I have not spoken to my doctor yet. And I am still waiting for MRI results for the cervical spine. I have been ruled out by rheumatology, and all my blood work is mostly “normal.” I had an endoscopy and empty studies to find the slow emptying. EMG ruled out nerve damage. Eye doctors ruled out eye issues. I’m not asking for a diagnosis, just want to identify if most of my problems are related after not finding any significant issues after nine months. All these symptoms seem to be onset. I have been using Google and other Reddit threads, but I’m still at a loss to understand what symptoms are related to Chiari. 

Consistent new symptoms ongoing for nine months: 

• Neck pain, stiffness. 
• Numbness and tingling in arms, mainly affect forearm, pinky and ring finger in both arms. Mainly happens during sleep or after waking up. Also happens with light compression.
• Bilateral nerve pain in arms, affects the whole arm from fingertips to elbows, sometimes upper arm. Pain worsen with movement of arms or when being too sedentary, pain gets better with activity like walking. 
• Bilateral weakness in arms, dropping things.
• Cold extremities, coldness is worse when there is worse pain. Coldness is felt in fingertips, hands, forearms and toes. 
• Light sensitivity, blurry vision, blurry spots, static vision or snowy vision and dry eyes. 
• Dizzy, but noticeably worse with altitude changes, elevator usage, and getting up too fast. 
• G.I. symptoms, slow gastric emptying, bloating, and constipation. 
• Heartburn or LP or both, Dry mouth. 
• Widespread inflammation mainly affects my arms and is noticeable in my legs, (the dentist has noticed increased inflammation in gums, etc.). 
• Symptoms flare but never resolve. 
• Low resting heart rate, (average 45bpm-58bpm)

Consistent symptoms for years:

• Tinnitus
• Frequent headaches. 
• Balance and coordination issues. 

New but inconsistent symptoms:

• Nausea
• Headaches that worsen when standing but feel better when seated or when laying down. 
• Dizziness when using the bathroom.
• Leg pain. Numbness and tingling.
• Burning pain in legs. 

Any thoughts or insight would be great.

Hey

So as a person who has chiari malformation type 1. I wanted to know something about recovery after surgery.

How bad was it? Any issues? Did you lose weight? Tell me everything. The process of your recovery and how you're feeling now.

Cause I do suffer from every symptom and it's bad, I have a neurosurgery appointment soon which I think 8/10 times i will get a surgery for it. Can't say for certain.

How was eating for yall too? Was that okay? How and was the pain?

Hello everyone, have any of you have encountered a neuro that didn't care?

Info about me, I had an accidental Chiari 1 diagnosis after receiving a brain MRI for regular migraines. The imaging center noted "approximate" 5mm "low laying" cerebellar tonsils versus Chiari 1. When I asked why it hadn't been diagnosed as Chiari since 5mm is "baseline", I was told that due to positioning it was "around 5mm and not above". My GP reviewed the imaging and agrees that it is definitely Chiari 1. My symptoms include migraine with aura, headache at the base of the skull, vertigo after driving, neuropathy in both arms and occasionally my legs, a facial tic that affects my left lip, and right eye, tinnitus, minor hearing loss, chronic fatigue, and a random "lump" feeling in my throat. Because of this, she referred me to a Chiari specific neurosurgeon, and then a regular neurologist.

Well, I saw the regular Neuro today. He seemed to primarily focus on my migraine and aura. He asked and confirmed that my current medications are handling the severity of the symptoms, and then point blank asked "So what is it that you want me to do here?". I brought up the myriad of other symptoms while he flipped through my referral and charts, and he told me that because I'm a young healthy female, it would be "dumb" of me to consider having surgery for a little numbness and tingling.

He did a few neurological tests, and when I brought up that the appointment was supposed to be for my Chiari and not just the Migraines he asked why I "thought" I had Chiari. I offered my imaging disk to him with my brain MRI, which he refused to take because apparently when they put the images on disk, they aren't high enough quality to tell. He ended the appointment by telling me that the other providers were most likely wrong, I didn't have Chiari, but he'd get the films to review "just in case". He also belittled me for not expediting a neck MRI if I was "so worried" about Chiari.

I feel so defeated and belittled, I'm no closer to feeling any better, and I feel like I just wasted my money to be completely ignored. Is this regular? Did I do something wrong in my approach? I just want to feel better.

Long story short, so I was injured by a vaccine on January of this year and have been experiencing a lot of health issues since then. Chronic fatigue, pins and needles, light and sound sensitivity, anxiety, neuropathy and more stuff I am forgetting.

Some symptoms have improved, some have gotten away, but what is currently driving me crazy is pain behind my neck, at the base of the skull. Does this sounds like Chiari malformation?

I was perfectly healthy before this and never experienced anything similar in my life, I did a big mistake by taking that vaccine, I just hope is reversible and I can recover my health.

So I only found out about this because I’m hypochondriac with resources to do every exam you can think about it, and doing that my doctor found about chiari 4,5mm herniation and since my diagnose my neck got incredibly heavy, very very heavy, my head feels like it weighs a ton, my dizziness is worse, I had very very very mild dizziness and there it as my only symptoms for chiari, and now everything is worse, my question for you guys is can it it get worse to this point in 2 weeks ? ( seen 4 neurologists, 3 neurologist and one neurosurgeon, 2 of them said to not worry at all at my chiari, the other 2 said to check every year with a new mri)

obviously we’ve all joined forums and communities to discuss and share our struggles with people who has been there or are going through it. does anyone get annoyed specifically on FB that people will go out of their way to recommend a certain doctor over and over again EVEN if the surgeon the person is currently seeing is highly recommended/good outcomes? has anyone in this forum had/heard bad things about dr heffez? there is a certain push for him over other neurosurgeons on most FB groups and it’s discouraging to hear he is the ONLY chiari specialist that can fix you… for example i went to friedlander in pittsburgh and am doing well, most people say the same but of course every surgeon has people who didn’t get the outcome they wanted. Im just not sure why everyone swears Heffez is the ONLY one capable, i just wanted to see if anyone else has gone through this and has stories about him.

Hi, I’m scheduled for my decompression surgery on October 23rd and I’m just wondering what you guys did to help with the whole process from preparing to getting home.

I am thinking about shaving my head for the procedure so it’s easier for maintenance and less chance of infection.

I have a pre-op kit that was given to me by the hospital with soap and everything I need before hand.

Is there anything you guys did to help just comfort you along the journey? Any help is appreciated thank you.

So I’ve been slowly letting people around me know that I’m going to have surgery and about my condition. I am a big joker, everyone who knows me knows I like to laugh and joke around so this may be why. I’d say 60% of people I’ve told have laughed and/or said no seriously what is going on with you? I get Chiari is a weird thing to have and it is kinda comical if you look at it that way? My question is, is it the way I’m telling people? I usually explain it as I’m having surgery to remove part of my skull and dura to give my brain more room as it’s too big for my skull/my skulls too small for my brain. I then usually throw in a #BigBrainMoment or say well it’s obviously because I’m just so smart..

Idk I feel like I should be more serious about it but the humour is my coping mechanism

Hi! For context, I'm a 21f kiwi. Over the last year, I've become completely debilitated by nausea, vertigo, vision changes, headaches, and balance issues. We've tried vestibular therapy, migraine medications, everything under the sun.

My recent MRI (which I paid for out of pocket because I was so desperate) showed "the cerebellar tonsils are peglike, descending into the foramen magnum by 7 mm, in keeping with an arnold-chiari 1 malformation. no syrinx within the upper cord to the limit of examination." However, I wasn't made aware of this - I just happened to stumble across the results in my patient portal. No one told me, and none of my GPs have mentioned that this could be causing my symptoms.

I'm aware that this is a minor malformation (from what I've read), but I've become completely disabled. I can't handle any motion, including car travel, and I struggle to even walk and get groceries. I used to be super fit - I was supposed to be graduating in a couple of months, now no longer. Why would no one mention these results? And more importantly, could they be causing my symptoms? Very confused on where to go from here.

Hi! I'm curious to know what comorbidities you discovered having in your chiari treatment journey. My second opinion neurosurgeon was concerned we were "missing a diagnosis" that is most responsible for my symptoms (apart from the obvious chiari). This has stuck in my mind and I am now very concerned about having surgery and it not working for me.

I am by no means downplaying my condition or anyone else’s but sometimes you gotta laugh to keep from crying. I’ve been suffering from symptoms for 2 decades. I have Chiari & syringomyelia & have had several surgeries. When flare-ups hit I try to keep it light hearted for myself & those who are around me ( it’s not always easy for them to see us suffer)

Those closest to me get it & understand my issues but sometimes with humor. Mainly my sister, my husband & my son. We have affectionately renamed some symptoms. I don’t know if anyone on here has some too.

Apraxia = gitch mode Aphasia = Yoda mode

Using the wall to walk in lieu of walker or cane = wall gliding ( I saw someone on here call it “wall surfing”, I like that one)

Muscle spasms that stop you in your tracks = glitch mode or spaz mode

My son has said for several things “my data was buffering”

Dizzy spells that make you feel like you’re floating – “I’m just riding the rainbow “ or “dude, I just time traveled”

There are many others, I’m just curious if other people do this too & what do call your symptoms in a lighthearted way to keep your spirits up?

Hey everyone

Firstly just wanted to say thanks to everyone here. This has been a profoundly useful resource on a long and confusing journey since my diagnosis last year.

I’ll try keep this short but TLDR is I have had two opinions on what to do next and they are opposite of eachother. I’ve researched to the point of exhaustion and now just at a loss as to what I should do next.

I had a basic decompression in February. Since then symptoms have worsened in intensity, and also now exhibiting in new ways with hearing and eyesight being impaired during the peak of bad surge headaches.

My neurosurgeon agreed the decompression only wasn’t successful. But outright does not want to do the more invasive step to go in further and shrink things down etc. In his word, he’s seen it change too many people for the worse, and the success rate is too small to warrant risking it. When I tried to ask more about it he was quite stand offish but said he would do it if I wanted him to.

My symptoms have been rapidly getting worse since last year, but he doesn’t know why, or if they’ll stop getting worse. He also doesn’t know why other things are being impaired by it now but stands by the fact the surgery is too risky. Since my diagnosis it’s been clear this has been effecting me for 20+ years and it is all coming to head now (no pun intended).

So he provisionally put me on the list to have it as the second opinion I had said that it was a no brainer. This is already ruining my life so the risk is worth it…

So now I don’t know who to believe, what these risks actually are statistically, or if they even really know what’s going on as my symptoms are severe despite being a small herniation.

Now I’m over thinking everything but can’t help but feel having this operation by someone who doesn’t believe in it may not be the best thing to do.

I’m at a complete loss and unfortunately as my life’s been turned upside down by this. It’s been hard juggling work between being burned out from these symptoms and recovery from the op.

So I just have decision fatigue and the pressure of this is getting too much. I’d never forgive myself if I went for the op and something went wrong making me more of a burden on my family. However if this continues getting worse at the rate it has, that could happen anyway.

Do I get the op or not?

Hey gang, my tonsils are 25-30mm (depending on the MRI). My neurosurgeon has done a lot of decompressions but doesn’t ever shrink tonsils. There are no chiari specialists in my state, but he seems competent and is probably the best option for my insurance coverage. I’m a little concerned about leaving my tonsils in there to keep crushing my brainstem though. It seems like most people have their tonsils shrunk during surgery. Anyone out there have big ole tonsils that got left alone but still had a successful surgery (meaning your symptoms improved and stayed that way)? Please share your experience. Thanks!

Hey everyone! After months of MRIs and Neurosurgeon visits and then switching Neurosurgeons, waiting for the pre-authorizations, waiting for the medical team to get my WA State PMFLA paperwork completed, I FINALLY have a surgery date of 9/11/24. I’m crossing my fingers nothing changes or delays that date. I can’t wait to no longer feel the constant head pressure and head pain. I’m looking forward to recovering and taking it easy off of work for about 3 months.

I reviewed other posts that had advice and tips. By those recommendations, I have the following items: - Comfitech head & neck wrap - Eye mask (loops behind ears) - Button down pajama shirt and loose pants - Ice packs - Long charging cords - Miralax - Pillows (I have 8 of them) - Baby shampoo - Detangling brush (luckily I have very short hair)

Am I missing anything? I appreciate all the feedback!

What pillows do you guys use and what positions do you primarily sleep in? I've gone through nearly a dozen and I still can't find one I love or that helps much so any info and recommendations would be very greatly appreciated.

I have a 7mm herniation. I am scheduled to see a Neurosurgeon on the 4th of December. I have pretty annoying headaches whenever I strain or when I’m stressed. They are jarring and raise my anxiety.

Right now I am trying to get down to a healthy weight to lower my high blood pressure. I am also switching to a job that has less heavy lifting and straining. I am hoping that this combo makes my headaches less common. Therefor making my life better without surgery. I would like to see if these changes (or any others) improve life before considering surgery. Anybody else find ways to make Chiari “livable” without surgery?

Does anyone else hear/feel the base of your neck/cervical spine area crackling like a glow stick? Or is that an unrelated symptoms. I don't get it all the time, it happens randomly when turning my head

Long story short - life long (since toddler age) migraines and headaches, basically always have a low grade headache, numbness in hands that has been dismissed as anxiety (which to be fair I do struggle with), vertigo (I literally get so dizzy I almost fall everytime I get off an elevator), tinnitus that has been blamed on listening to loud music as a teenager, severe numbness and tingling in my neck and shoulders that has been blamed on tension from anxiety, heart palpitations that have been blamed on anxiety (can you tell I’m female, lol everything is anxiety 🙄), visual snow syndrome and many other issues.

As a teenager my migraines got horrific, so I finally got an MRI to make sure I didn’t have tumors or whatever. I forget exactly what the doctor said it’s been so long, but he mentioned I had some sort of non fatal brain or brain stem deformity that could be contributing to my migraines. He mentioned something about it causing bad blood flow to my brain? Maybe? Unfortunately my mother is dead and she’s the one who took me - and my dad is clueless to help.

My headaches and migraines have gotten significantly worse now that I’m in my 30’s. I basically have a headache everyday and migraines are starting to creep into being weekly.

I’m going to be seeing my PCP soon and really want to get another MRI to confirm or deny my suspicions. I know for a fact I was told I had some sort of brain deformity, I just can’t remember what. Also worth noting my biological mom smoked cigs and weed while pregnant, and it’s suspected she did other harder drugs too (I just read there’s a link between drug use during pregnancy and chiari).

Any advice on convincing my PCP to order an MRI, and if it confirms my suspicions, any advice for going further?

Thank you!

Could someone who has consulted with a neurosurgeon/Chiari specialist about having an epidural, please explain the exact reason why an epidural is usually not recommended? TIA!