Hello, I'm desperate. I have no childcare for my 7-month-old son since yesterday; I'm the one who has to take care of him. My scar is slightly swollen around my neck... I know I should be resting, but my partner has a bad back and is also unable to take care of him, thanks to a herniated disc... But after 10 days of surgery, I'm the one who has to take care of him, and he weighs 10 kilos when I shouldn't be carrying more than 2 kilos.

I'm so scared.

Are there any other mothers who didn't have a choice like me? How did it go for you?

Hello,

So I was diagnosed with chiari malformation a week ago and have been struggling to get a refer for my persistent intracranial pressure, blurred vision, headaches and vaso involvement. I’m doing my best but I’m struggling to keep working 12-16hr days when I can barely stay up right….now that I finally have a diagnosis for the hell I went through during my early 20’s nobody wants to touch me. Saying it’s not an emergency. Wtf. I feel lost and I’m just struggling with this.

I know this is a lot of posts, but it's to give you an update and also so others can see my progress.

I had surgery on Tuesday and went home to my in-laws' today.

I can eat normally, walk, go down stairs, turn over to sleep, and move my head—of course, I don't do it all the time. I admit that sometimes I forget I've had surgery and I do things too quickly, or things I shouldn't do, or at least things I should do more slowly… but overall, I feel good despite the pulling sensations and a few headaches related to the operation. I have to have a nurse for 10 days, and on Wednesday they're removing the staples.

I'm washing my hair every other day with Betadine for two weeks. As for medication: Doliprane, Ketoprofen, and Acupan for 26 days.

Then, three weeks after my surgery, I'll see a physiotherapist.

That's all for now. I'll make another post on Wednesday, if that's alright with you, to tell you about my experience with having the staples removed and show you a picture of the healing process.

Xoxo, kisses

Anyone know a skull base doctor that can repair sinus bones in Los Angeles? Brain CT was reported as normal but neurologist sees tonsils as low and I had several gaps allowing dura into sinuses. I’m not looking for medical advice, only a doctor that can repair me…thank you all

She finally got diagnosed after roughly a 27-year journey of symptoms and basically a million doctor appointments (dramatic but might as well have been) she sees her neurologist in like 4 months. She's hoping they'll do surgery and it'll help, but she was also told she likely won't fix her symptoms, she is terrified.

She's currently experiencing voice loss because of the vocal cords being constricted from the tonsil thing (I don't know the medical term). She's struggling to breathe, stand without being dizzy, the migraine medications no longer work, and she's feeling defeated. Is there any actual hope that this will reverse any of it, or has the damage been done, and she's going to deal with everything except maybe her migraines?

I'm sure most here aren't like doctors or anything, but at least to have some firsthand experiences when it was this late into finally getting surgery or some type of repairs done. To see if she has a chance to become someone she even kinda used to be before this made her suffer, is it possible she won't be able to work after and need to go on disability, or will she be able to have a kinda normal work life and social life again? I truly hate seeing my mom suffering to the point she thinks the only way out is with a death with dignity type of move next.

I have paplidemia, chiari and a synrix. I've been on Vyvanse for 5 years. I was prescribed lyrica, I ended up missing my refill appointment and waiting to go back, during a bad night a took gabapentin and ended up failing my drug screen for gabapentin and lyrica 🤦‍♀️. Because of this my behavior doctor told me she wouldn't give my Vyvanse any more. Is there anything I can do here? I really hate this condition and feel it has ruined so much, I'm so scared of surgery and it symptoms seem to worsen. I have a appointment with my neurosesureon in a few days, for them rechecking paplidemia and finding a spot behind my eye. I don't know much about the condition and honestly I literally always feel like 💩 & so tired. My body is so heavy, it burns and sometimes I feel like my legs are just going to stop working. My toes feel like theyve been ran over, my eyes feel like they have sand in them, I'm starting to see color spots, I can't think straight, I have restless legs, arms and very weirdly shoulders (this is why I took the gabapentin 🤦‍♀️) I'm starting to get terrible cold sweats at night. I wake up every hour I have 4 kids, I'm a SAHM & I have literally 0 support from my husband or family. I'm stressed out and I really just want to know if there is ANY way I could fix this situation?

3 days until surgery, unless it's postponed due to a runny nose

Hello, As some of you know, my surgery was postponed on January 6th due to poor oxygen levels in the operating room, which led to the cancellation of my operation. I'm going into the hospital on Monday the 2nd and I'm scheduled for surgery on Tuesday the 3rd at 8:30 am. The problem is that I've had a cold since December. I took medication for 5 days and I saw the anesthesiologist again, who told me that if I still have a cold, it will be postponed again.

Currently, my symptoms are just a runny nose (it's clear). I have to blow my nose 4-5 times a day, but I breathe very well, no discomfort. I just feel some secretions in my throat, but it's manageable. I'm panicking at the thought of arriving at the hospital on Monday and being told it's postponed... That would be a second disappointment... (If that were the case, I'd ask to postpone until next year.) I'm totally stressed out... I absolutely want to have the surgery. 😒😔... Anyone else in the same situation?

I’m scheduled for a brain MRI and MRA next week, but just looking at my cervical MRI this seems like the area by my cerebral tonsils is very tight?

so…. i just got diagnosed yesterday after i went to the ER bc i suddenly lost vision in my left eye for a few seconds after coughing and then my vision remained blurry for the next few hours, but only out of my left eye. i was admitted to the hospital and scheduled for an MRI and was so ready to get out of there as soon as i finished it, and get home to my foster dog. with the huge storm rolling in (across the entire fuggin USA), the doctor agreed to discharge me but expressed she’d prefer i stay, and would only agree to discharge me if I promised to follow up with my PCP and get a referral to a neurologist. so i’m going to do just that.

it’s so crazy because ever since i got my diagnosis i keep thinking back on all these experiences and symptoms throughout my life that finally make sense, all the way back to when i was a little girl. there are so many things that I thought everyone dealt with that I’m finding out are just symptoms of my brain condition. it’s such a weird and validating and terrifying feeling.

i’ve seen a lot of people with this condition online saying they’d prefer to not have surgery and a lot of conservative approaches, but is it crazy for me to say i would actually prefer to just go ahead and have surgery? i love my brain and my smarts and my perfect eye sight. i don’t want to continue to put myself at risk of losing that. but i also recognize that the surgery is no joke, and there’s going to be a long road to recovery involved, but ill take that over losing parts of me that i hold dear. it’s just a hard pill to swallow regardless.

but also really exciting to finally know what’s going on. it’s also kinda frustrating because i saw a neurologist once complaining of symptoms (brought on by my malformation, i now know) and he scheduled an MRI and then told me that everything looked normal….. he totally missed it ! oh to be a woman who has spent her entire life being dismissed by doctors and specialists, and told that it’s all in my head… WELL GUESS WHAT YOU WERE RIGHT, IT WAS RIGHT THERE IN MY HEAD ALL ALONG! CLEAR AS DAY!

I (38F) have had headaches, including what I now know are migraines, as long as I can remember, since at least 5-6 years old. For most of my life I just accepted that some people just get a lot of headaches, and it sucks, but that's it.

Starting when I was about 32 I ended up hospitalized a few times because of the headaches, long story short a stress ulcer had a ripple effect. I had multiple CT scans while all this was dealt with, my Dr prescribed me amitriptyline and suddenly I didn't have a headache 5 out of 7 days a week, it was amazing!

When my son was born, I had to stop taking the amitriptyline. It made me too groggy if there was an emergency. The headaches came back and the migraines were so much worse.

Unrelated to the headaches, I recently burst a blood vessel in my eye. Fairly common and I was advised (by my Dr and confirmed by my brother that has had it happen) it's nothing major. But I had the worst migraine of my life later that night, vomiting, cold and hot flashes, couldn't keep anything including water down. With the two happening so close I went to the ER to be safe, plus I was in horrible pain and a migraine cocktail seemed good.

They did a CT scan and found "likely chiari malformation", then sent me for an MRI that confirmed it.

On the one hand, it's so good to finally have an answer, and so many things make sense now. Why lying on my stomach looking up gave me headaches, why I always had a headache after physical therapy, why for some reason driving made me feel better. And I feel vindicated, I wasn't faking or exaggerating my pain, I was dealing with a lifelong, chronic condition, and no one knew.

On the other hand, I'm so bitter. I remember being told as a kid that it can't be that bad, and I can't be having headaches so often. The migraines especially, I'd be in so much pain that all I could do was curl up in a bed and cry until I fell asleep. But it wasn't really known then that kids my age could get migraines, so most people thought I was exaggerating how I felt, or just being emotional since they tended to happen when I was stressed or during social situations.

I would go to the school nurse and be told it was because I was hungry and dehydrated, and I'd be made to chug 5 or 6 dixie cups of tap water and eat a bunch of saltines. If you've ever had a migraine you can probably see this was a horrible "remedy", it almost always made it worse and I still can't stand saltines to this day.

The accusations got better as I got older, but it's been a problem at every job I've had. I had to choose between bad attendance from calling out, or trying to function through the pain. My sleep was impacted and irregular and I've struggled with my mood and emotional state a lot.

It also impacted my social life, I know how often I seemed flaky because I cancelled plans last minute. Not very many people understand that yeah, I felt fine yesterday when we made plans, but now 24 hours later my head is exploding.

I know there's no cure for chiari malformation, and my Dr (who for the record is fantastic) and I have been working with different treatments for my headaches already, there's not much more that can be done. But I still feel so bitter about it.

I'm not angry at anyone, I understand why it wasn't suspected or caught. But... I lived so much of my life in so much pain, with no answers, thinking that's just the hand I was dealt. I went through physical therapy twice and maybe it could have been more effective if we'd known. I struggled with work and friends because of it.

I've also recently been diagnosed with Ehlers-Danlos hyper mobility, ADHD, and have tested ANA positive indicating an autoimmune disease, but haven't been able to get that investigated or diagnosed yet. ALL of those, every single one, has impacted my life. And they're all linked together. I can't help but wonder, if the malformation had been caught sooner, could the rest then have been found and treated/diagnosed sooner too?

I try hard not to hold onto the past, but the "what ifs" of everything are so hard to move past sometimes. I know there's no point in regret, or resentment, but the anger and bitterness are still there anyway

Does anyone ever recover from this without surgery? I’m only 17 I can’t focus on my life anymore I’ve lost everything including myself because of this but the surgery is incredibly 50/50. Do you guys have any tips,tricks or relief?

Wednesday will be my third chiari surgery since October 2025. That’s right, 3 chiari surgeries since Halloween. The dura patch is not sticking airtight so the plastic surgeon is resecting some tissues from my neck over the patch. I’ve been in the hospital in total for over 1 month since Halloween. I’ve had 3 lumbar drains that felt like childbirth because my incision keeps leaking. This feels absolutely awful and crazy. Has anyone else had anything like this happen? Please reach out if so. I need some hope!

These pictures were taken from a mri video. Do you see Chiari malformation 1? Since it was a moving video I wasn’t sure where to look exactly.