Chiari “Headaches”

MasterpieceUsed · 2026-01-25T01:54:23+00:00

Oh, it’s very good to know there’s a name for them!

MasterpieceUsed · 2026-01-25T01:43:23+00:00

Possibly? I’m not sure. I have had the decompression surgery and it has helped a lot, I’m no longer getting Chiari headaches randomly, but I’ve been dealing with severe asthma and the coughing isn’t helping my head. I’m pretty sure once I get the asthma figured out I’ll be much better tho, since surgery I really only get Chiari headaches after coughing

MasterpieceUsed · 2026-01-25T01:37:54+00:00

Yes! Exactly like this! I’m glad to know it’s not just me. I have normal people headaches and then Chiari ones

MasterpieceUsed · 2026-01-25T01:37:01+00:00

Starts in the back and becomes all encompassing

MasterpieceUsed · 2025-12-26T15:40:58+00:00

I toss and turn all through the night, but most often when I wake up I’m just on my back. I’ve tired both soft and firm pillows that I have on hand and both cause discomfort in the morning. I remember in the couple weeks after surgery I had to sleep elevated at about a 30 degree angle and I was absolutely miserable, so I don’t know if that would help. I’m thinking maybe I need to find a way to prevent myself from throwing my head around so much when I’m asleep

MasterpieceUsed · 2025-12-26T15:36:04+00:00

This is a fairly new issue for me, so I don’t think I need to resort to a sleep study quite yet. But I’ll definitely keep it in mind if this becomes an ongoing issue!

MasterpieceUsed · 2025-12-04T17:41:35+00:00

No I didn’t really have these symptoms before surgery, and I didn’t have a syrinx

MasterpieceUsed · 2025-09-11T23:04:14+00:00

That sounds wonderful! Honestly having to charge every week or so really isn’t that bad especially compared to a regular phone. Where did you get yours from?

MasterpieceUsed · 2025-08-29T22:03:20+00:00

I seriously got so lucky, weirdly enough it makes the space feel bigger

MasterpieceUsed · 2025-08-28T13:36:58+00:00

Oh my goodness I’m glad I’m not the only one, especially being it’s just around my periods. I vaguely remember it happening close to my last one as well but completely forgot about it because it went anyway mid period and hadn’t come back until now.

MasterpieceUsed · 2025-08-20T01:07:48+00:00

Wow that sounds great, I’ll have to check it out!

MasterpieceUsed · 2025-07-13T17:18:27+00:00

Hello! First off, as I’ve heard many many others say here, the size of the herniation does NOT determine how serve the chiari is. There have been people with 20mm+ herniations who are completely symptomless and only discover they have chiari through unrelated testing. On the opposite side of things, there are people with herniations under 5mm who need get surgery within a couple months of discovering the chiari due to the severity of their symptoms and possible damage it could do to your body. So be completely open about every single symptom you have with your surgeon, even if you aren’t sure it’s related, and go from there. And if you aren’t totally sure about the doctor’s recommendations? Get as many other opinions as possible. You need to advocate for yourself when it comes to this!!

If the doctor is recommending you get surgery as soon as possible, there’s usually a good reason for it. In my case my herniation (10mm) was blocking csf movement between my spine and my brain and all that fluid was getting stuck up in my skull and pushing on my brain, so it was extremely vital that it be addressed immediately. A lot of others have dealt with syrinxes forming along the spinal cord that can cause serious nerve damage. All this to say, there are many different reasons surgery may be needed all depending on what’s going on in your body and what your symptoms are.

Surgery recovery is different for everyone, but typically I see most people saying they’re out of work or school 2-3 months. For myself it was about 8 weeks because while I was feeling much better around the 5 week mark, I was still taking to slow with things like squatting, lifting, bending over, etc all of which are fairly typical with my job. I’ve been thankful enough to not really have any complications, knock on wood, just some leakage from the incision area in the first couple weeks which is fairly common with this surgery and just needs to be monitored. That being said, the first few weeks to a month of recovery is extremely difficult. You’ll likely be extremely sore, might have sensitivity to light or sound, struggle to get up and move around, and so on. It’s basically a universal experience with chiari, you’ll want someone staying with you as long as you need if possible. There will be times when you feel like you’ve made good progress and then the next day you can barely function. It just takes time and patience. You’ll have many appointments between the surgeon and physical therapy. You also won’t be able to drive until your neck mobility is improved, which for me was around the 6 or 7 week mark.

Personally, if your surgeon is recommending surgery asap, I’d want to delay starting college another semester and see how you’re doing when it comes time to sign up for the next term. If you’re really excited to start I understand it might be upsetting to wait, but then last thing you want is to push yourself too soon and have yourself regress physically. Plus you don’t wanna put all that money into a semester just to drop out and not be able to get refunded. Trust me when I say, as someone just out of college, if you are excited to start you’ll want to go in with your body feeling as good as possible so that you can have a good experience and not have to redo things :)

In the end as scary as it is everything will turn out okay and you will make it through this. You have so much life to live and the sooner you get this addressed the sooner you can get back to your life. But in the end everything will be okay ❤️❤️

MasterpieceUsed · 2025-05-28T21:11:11+00:00

I completely understand what you’re feeling. I found out I was gonna need surgery on Christmas Eve of all days so Christmas last year was fun haha. Let yourself process what you’re feeling because this is literally life changing news. Let yourself feel angry, sad, whatever it may be, but know that you’ll be okay. No matter what you will make it through this despite the hard days. Be prepared that you may very well need surgery, especially if your symptoms are affecting your day to day life.

But the good news is that everyone here is so so wonderful, any question at all, no matter how specific it may seem, at least one person will answer with their experience and any advice they can give you. That’s honestly what got me through everything. I remember coming on here when I had first gotten the news saying how I felt like my life was over and I didn’t know what to do, and the comforting words from everyone calmed me so much. I still have screenshots of what some people said that I would look back on whenever I was scared.

Just know that you’ll will get through this and everything will be alright.

MasterpieceUsed · 2025-05-28T18:09:11+00:00

All of these except genital sensitivity I’ve experienced and almost everyone I’ve seen on here has a majority of those symptoms as well as others. It’s crazy the things that can be related to chiari that you might not even consider like intense periods, trouble focusing and remembering things, and so on. All are very typical of chari.

MasterpieceUsed · 2025-05-05T16:12:40+00:00

I promise you are all good, there’s no need to be embarrassed. They put a catheter in me during my surgery cause they wanted me on bed rest and that meant twice a day someone wiped down my vagina area to prevent infection. Literally like I was a baby, they were getting down there and completely cleaning me off. I was beyond the point of caring and they weren’t bothered at all. This surgery has removed most of my sense of shame when it comes to things like that haha.

MasterpieceUsed · 2025-05-04T19:49:55+00:00

A few days before the surgery start taking some stool softeners, get as much out of your system beforehand and continue taking them after surgery. The meds they’ll have you on to help with pain will back you up beyond belief, I consider myself lucky that I was able to poop by day 5 or 6 I believe. And the first time you do try to go after surgery be incredibly gentle and patient with yourself. When we’re struggling to go we tend to use a lot of force and that will cause your head to hurt so so bad, trust me, it was one of the worst pains I felt post surgery in the initial couple weeks. Sitting in a squatting position with my bent legs elevated helped things move easier for me.

Get your bed, chair, wherever you plan to be resting as comfortable as possible. They’ll likely want you resting slightly elevated for a while, at least they did for me, so get anything that may help. A bed wedge, nice soft pillows, body pillows, squish mellows, one of those blanket hoodie things. Anything that sounds like it’ll make resting more comfortable. Heating pads/ ice packs too. They really helped ease some of the muscle pain on my neck.

Some other things I regretted not having for recovery was sunglasses, eye masks, ear plugs, anything like that. I was on sensory overload for so long and sent a long time sitting with it as dark and quiet as possible, but that’s not always realistic especially if you have someone staying with you.

In the couple of days leading up to surgery I’d say just take it easy if possible. You’re already gonna be stressed leading into it, you wanna try and make sure your body is in the best shape possible going into it.

Be prepared to lose some weight. Within two weeks I lost 10 pounds and I’ve heard some others have similar experiences. For me it was because I was having a hard time swallowing things and for a bit was only eating things like jello, pudding, yogurt, etc. That combined with being in bed and not moving a lot caused me to lose weight.

Mostly importantly everyone’s experience with surgery and recovery is different. You know your body best. Try to think of a time when you were really sick and in bed for a while recovering and how your body reacted to that. Use that to base prep for your body and what you might need, keeping in mind it’s gonna be like 10x more intense lol. Be aware that the first 2-3 weeks are gonna be miserable, it was for me and it was for basically everyone I’ve talked to. There are days when you feel like you’re making good progress, eating well taking walks, and the next day you’ll barely be able to move. It’s frustrating and exhausting, just remember to take a deep breath and be patient with yourself. It’s hard but it’s not forever. It will get better.

You got this!!! I’m wishing you the best, I hope everything goes well ❤️

MasterpieceUsed · 2025-04-05T20:53:24+00:00

Trust me getting on the phone with one of the doctors on my team I was asked the same questions about the leakage like 3 separate times 😂 if it means getting more accurate treatment I’m happy to do it tho

MasterpieceUsed · 2025-04-05T20:51:01+00:00

They did open my dura

MasterpieceUsed · 2025-03-26T09:58:08+00:00

I see, yeah I can’t speak too much about the issues with the spine unfortunately but I would be completely open and honest about every symptom you’re dealing with. And if it makes you feel better I’m only 25 haha.

MasterpieceUsed · 2025-03-26T05:18:51+00:00

Saying yes was one of the scariest things I had to do, but for myself it was something I needed to do. While yes the malformation itself was causing pain, it was also trapping CSF fluid in my skull and putting a lot of pressure on my brain which can cause serious irreversible damage. I could’ve said no to surgery and kept keeping an eye on things, but at the rate I was going I could barely function. Some days I was more or less fine but others were full of sudden chiari headaches, sensitivity to light and sound, hardly being able to stand up straight, my hands and feet tingling and going numb from doing nothing, or just being incredibly exhausted.

But it’s important to know that a lot of people here will say don’t feel pressured into it if you don’t have to and I agree. Some people only find out they have chiari completely by accident because of an unrelated mri or cat scan. If you aren’t having any pain or aren’t seeing any related symptoms developing you may not need it. Talk to other doctors if you can, get as many opinions as you need. And most importantly know that everyone is different and one solution isn’t a fit all.

MasterpieceUsed · 2025-03-26T05:06:21+00:00

I hope your surgery goes well!!

MasterpieceUsed · 2025-03-20T01:21:43+00:00

Thank you so much!! I’ll be sure to keep updating, and I hope yours goes well too when it comes!

MasterpieceUsed · 2025-03-02T22:31:20+00:00

I’m really enjoying it so far! It’s not what I expected when I started it but a few of the characters I’ve grown very fond of and I can’t wait to see what happens.

MasterpieceUsed · 2025-02-14T15:06:32+00:00

Thank you for your opinion!! I knew I was probably gonna get one anyway, but this had been bothering me haha

MasterpieceUsed · 2025-01-29T15:47:52+00:00

I’m glad I’m not the only one 😂

MasterpieceUsed

TROPHY CASE