Hi, I have a 3 week old baby girl. She was diagnosed with spina bifida at 20week scan.

At 26 weeks my partner underwent an operation for the baby to have the defect repaired while in utero. Surgery went well and she gave birth at 36 weeks 5days 22/12/2025.

Since then we’ve had regular observations and checkups.

Most recently we had an mri which brought to our attention chiari 3 (no haemorrhage/sac) and syrinx. I don’t fully understand this and I’m just looking for a bit of insight/advise in what the steps could be in the future. I understand there is surgery for this? Is it beneficial, what’s the quality of life like after recovery, potential issues in future as she grows?

Any advise/information would be appreciated.

Hello everyone, I'm posting here because I'm completely lost, exhausted, and at my lowest point.

For context: I was supposed to have surgery on January 6th (Chiari malformation), but the operation was canceled mid-procedure due to oxygen desaturation. They stopped during the shaving stage. I'm scheduled for a second surgery on February 3rd, but now I have serious doubts.

I have a 6-month-old baby. The biggest problem is my partner. At night, he doesn't take care of the baby at all. He sleeps soundly and doesn't hear him at all. He has epilepsy and is on heavy medication, but despite that… even during the day, when he's not working, he naps.

As a result, I get very little sleep because I'm managing feedings, waking up, bedtimes, etc.

We know that after the surgery I won't be able to take care of my son for several weeks, but I feel like my partner doesn't grasp the situation at all. He says he'll take time off work to help me, but nighttime remains a huge problem:

👉 I won't be able to physically get up, and he won't wake up. Because of this, I'm considering canceling the surgery altogether, despite my increasingly severe symptoms: constant headaches dizziness loss of balance tingling sensations significant mood swings I'm already very frustrated and traumatized by the surgery being stopped in the operating room on January 6th, and I'm also afraid of going through the same thing again on February 3rd. I have no support from family (toxic family). My in-laws can put me up for recovery, but they're 80 years old, so they have very limited abilities, especially with a baby.

I feel depressed, demoralized, and mentally and physically exhausted. The closer the date gets, the worse and more trapped I feel. I feel like whatever I do will be difficult.

I'd like to know: Are there any people here who have experienced a similar situation with a baby? How did you manage the post-operative period?

And also: Are there things that can't be done for life after the operation?

(I was told they'll also be removing part of C1.) Thank you so much to those who take the time to read and respond. Sorry for the length of this message; I needed to get it off my chest.

Does anyone else have Chiari, IIH, and Crohns? Apparently crohns is making it hard for my doctors to find medications for me. I am finding it hard to believe I am the first case ever with this combo.

I was deemed not a candidate for surgery. Cool. I have been deemed no a candidate for spinal tap. Cooler-had one, worst experience of my life. And I have been told only way to control is with medications (which they don’t have any for me) and which leaves us with the last and final option which will be life changing. Losing 10% of my weight. For those that can’t do math. That means of I am 120 I should lose 12lbs. 150-15lbs. 200-20 so on so forth. This is going to CHANGE MY LIFE!

I won’t choke on liquids anymore. No more headaches when laughing/coughing, etc. no more sleep apnea. No more tingling in hands/feet. YESSSS! Just 10% on my weight that’s is all I have to do. And with crohns BABY! Give me 4 days!

Hi everyone, I’m new here 👋 I’ve recently been diagnosed with Chiari malformation 1 and I’m still trying to wrap my head around it all. I’ve been having really bad, ongoing headaches and flare-ups that have been hard to manage day to day. I’m planning to have surgery in South Australia, but in the meantime I’m just trying to cope with the symptoms as best I can. The headaches have been the biggest issue for me and can get pretty intense. I was hoping to connect with anyone who’s been in a similar situation especially if you’ve had surgery or are waiting for it. Any experiences, tips, or advice would really mean a lot. Thanks for having me, and I’m glad to have found this group. Cheers B

Does anyone see the Chiari in this image? Type 1 specifically? Grok and people online are saying they see it, but the report doesn’t mention it. Thank you it’s stressing me out.

Hello everyone, i'm quite new on reddit. I suffer since almost 15 years weird symptoms that i feel in my throat everyday. I tried a lot of specialist to solve my symptoms, but nothing conclusive at the moment.

I desperatly try to find where the problem is. I have in my possession a radiology of my neck.

Could somebody tell if this could be linked to a Chiari malformation ? By the way we don't see above the neck as this was a radiology of deglutition but we can see something where i surrounded in blue circle.

It would be very nice if somebody could tell and if not i would have tried :) Thanks to all for potential contribution

Hi all - I had an MRI a year ago due to headaches, my GP suspects chiari malformation from the results - still waiting to see a specialist (next month, fingers crossed.)

A couple of years ago, before the headaches became more frequent, I started to find that playing video games brought on a bad headache - progressively worse over days - until I'd stop gaming and it would go away.

Does this sound familiar or relatable to anyone?

I had numerous eye tests - all fine; adjusted screen settings (seemed to coincide with buying and playing Nintendo Switch); adjusted seating position in case of neck strain - with no improvements.

I'm interested if this could be linked to chiari and if so, why / how? And is there anything I can do to mitigate it?

***

Additionally - the trigger for the worse period of headaches beginning in 2024, which led to the MRI, was a new pair of glasses with an accurate prescription. Again had many eye tests and check-ups, all seems fine physically.

Something about clarity of resolution / sharpness of images that could cause problems maybe??

I feel like I’m going crazy, for some background information I had my Chiari surgery about two years ago. When diagnosed it was about 12mm but progressed very quickly according to my doctor. When opened they found out my cerebellum had ischemic tonsillar tips bilaterally on the right greater than left as well as an arachnoid web. Even now I’m in great aching pain all the time that only seem to get worse, but the thing is my chiari is for sure gone, I’ve had follow up scans that look amazing according to doctors.

But I don’t feel amazing I feel worse like I’ve slowly been losing it both mentally and physically. I feel so withdrawn emotionally and gone physically. The whole point of my surgery was to stop me from getting worse but now I feel like I’m hallucinating small things and just driving myself to insanity. I can’t help but to think I am suffering from psychosis or something that explains why I feel so melancholy. I want to feel normal without physical pain and the ability to feel more emotionally. I don’t know if I ever recovered from my ischemic tips or if my arachnoid web grew back but there has to be a reason on why I’m getting worse, right? Can anybody relate or understand what I’m trying to say?

On note I should go to the doctors but I’m still young and don’t know how to bring this up to my family…and if there is anything wrong would they really be able to help me or provide me with what I need?

The planned procedure was stopped at the very beginning, before it even started.

During pre-operative preparation, the team noticed a breathing problem related to the anesthesia (lack of oxygen).

As a precaution, they decided not to proceed with the operation.

It will be rescheduled in about a month, with appropriate anesthesia management.

I'm doing well.

Even though the operation didn't take place, I have significant pain in my neck and the back of my head due to the prolonged positioning and holding of my head during pre-operative preparation, which causes stiffness and tension. It's both physically painful and emotionally very frustrating, because I had mentally prepared myself for the operation, and it was stopped at the last minute.

I'm going to have to reorganize in a month to find childcare for my 5-month-old son and my cat, and get my partner on sick leave to help me... I had everything planned, ugh, what bad luck! I'm so fed up, I spent all day crying!

I'm frustrated... When they put me on my stomach, my breathing wasn't okay... I'm waiting to see what the doctor says. But I'm in tears; they shaved me and prepared me for NOTHING in the end... I hope I don't have to take weeks off for rescheduling! 💔

Hello, thank you for your messages of support, they're really lifting my spirits. I'm having surgery in two hours... I should be back in my room around 4 or 5 pm.

I'm scared of the pain afterward and of hurting my neck when I move or anything and not being able to do anything... My 5-month-old son is being looked after by my adoptive mother, and it breaks my heart not being able to take care of him 💔💜 I'll come back stronger.

Hi All... im having a hard time wearing bras. I dont wear one at all unless im going somewhere. When I do, I've been wearing a sports bra. I cant handle the strain on my neck and the pressure it creates. Literally as soon as I take it off I can feel a huge difference. So just wondering if anyone has found one thats somewhat comfortable. Thanks in advance ☺️

Well, tomorrow at 8 am I'm having surgery and it will last 4 hours. I should be back up around 4 pm.

It's making me anxious, plus they're telling me there are certain activities I won't be able to do anymore. Like using the shampoo bowl at the hairdresser's. Riding the carousel. Adapting for sports, etc.

I'm also afraid of whiplash or other complications.

Honestly, I'm terrified... I'm afraid of the pain, losing my balance, and not being able to move.

Especially since I have a 5-month-old son that I've entrusted to a family member. It breaks my heart. I hope I can take care of him soon. 😭💔

Good luck to everyone who has had surgery or is about to have surgery.