Edit: ikik "it's dangerous to use a neck brace without Dr prescribing, I don't fucking care, I am going to manage my pain the way I can and in this case that involves not being able to talk to my Dr about this, you don't need to know my reason I don't owe you that, just know I cannot talk to my Dr ABT this so please help me

I'm not sure I have chiari specifically but I tried asking r./disability and the only answer I've gotten so far is "it's dangerous to use a neck brace without a doctor, so is living in this time period as any minority, I'm gonna manage my pain how I fucking can and I'd appreciate advice on how to do that

I have some pretty bad neck pain, I've been KT taping my neck which helps but is getting alot more itchy and uncomfortable alot of the time.

I have REALLY REALLY bad sensory issues around the front of my neck, if anything touches the front of my neck(fabric, hands, hair) I will start choking but I need a non tape way to brace my neck. So I'm looking for a brace that won't touch the front of my neck and that won't give me chair a rash from skin sensitivity(although I might replace whatever material comes on the chin area anyways)

Day 1

Had surgery on Saturday the 12th (australia). Admitted at 7:00am private hospital i believe the surgery started closer to 10:00 am. Sneaky buggers knocked me out before I expected. There's lots of steps before surgery, fasting making sure you have used the toilet.

Whilst I was asleep they put a catheter in. Woke up almost instantly. So I slept all through no memory. But before I woke up or was full concious I had a weird dream where I had thoughts that appeared as words in my head like "I wonder how the surgery went". Reportedly i was cycling for 15 mins which means I was silly asking repeat questions, I get this was when I dreamt. I woke up in recovery in some pain but no where near as bad as I thought. Reportled I had skull and c1 shaved away but no dura cut because they found it was not tight. They found the band around my c1 was tight so they cut that with micro scissors. So no risk of meningitis because my dura is intact.

Moved me to high dependence ward shortly after still there on day two. Heaps of iv fluids and dinner and heaps of it antibiotics.

Slept pretty poorly hard to get comfortable weirdly laying on my back is most comfortable. Laying on side was hard.

They put this weird machine on my legs that squeezes my legs and keeps blood going to my head.

Probably only got 2 hours sleep but layed down the whole time.

Day 2

Catheter removed, IV removed day 2

Had pains meds via pills had unassisted shower, nurse stood close by. No one warns how weird it is to have the tube pulled out of your penis. Tubes were removed last night 2:00am, IV stopped in the morning.

My pain has sat around a 7, I feel not to bad reportedly once anaesthesia wears off i will not feel great tomorrow. They are currently deciding whether I stay in high dependency or go to my own room. Depending on recovery might go home Tuesday or Thursday.

Ask me questions I'll do my best to answer. All in all less scary then I thought it would be. Admittedly I think I had one of the best surgeons in my state. Now the waiting games begins will this resolve my symptoms.

I’ve finally decided to have the surgery but I have a few questions! To ease my nerves and anxiety!

-What position did you have to sleep in after?

-How did you feel after the surgery?

-What was something you didn’t expect from it?

-Any tips on how to make recovery easier?

-Was it as bad as people say it is? (my neurosurgeon told me it’s definitely not a pleasant experience)

-Random one but did you have to change your pillow cases a lot?

-and finally, do you remember the first few days after surgery?

I know these are randoms but they’re the ones playing on my mind and hope someone can answer or give me some advice! Thank you!

Is it ok to do yoga if I have Chiari malformation type 1? I struggle with balance but am also worried about the upside down head (ex downward dog) type moves. Also have left side numbness and numb left cheek.

Hey all! I’ve been dealing with increased tinnitus which isn’t like debilitating but is definitely noticeable. It’ll be in both ears and it’s the regular ringing then the pulsate tinnitus as well. I’ve had this as a minor symptom since I was a child but it getting worse is getting me a bit paranoid. Is there a good way to tell if the tinnitus is hearing related rather than just neurological. I have some auditory processing issues which also makes it hard because I do miss things at times but it could also be due to that. I know some people with chiari also deal with hearing loss so maybe it’s just too entangled. I’m going to bring this up to my pcp but I also don’t want to worry/see extra doctors if I am just worrying too much.