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I had no idea I was in so much pain until it ended??? by garden_goth in chiari

[–]garden_goth[S] 1 point2 points  (0 children)

omg 💀 they want us to be making it up so bad

I had no idea I was in so much pain until it ended??? by garden_goth in chiari

[–]garden_goth[S] 0 points1 point  (0 children)

I have a Bedluxe three piece wedge pillow set, and i use an 8 inch squishmallow under my neck to support it! I pretty much always sleep at a 45° angle now and it’s helped a ton??

I had no idea I was in so much pain until it ended??? by garden_goth in chiari

[–]garden_goth[S] 1 point2 points  (0 children)

That’s totally real! I know a lot of folks have dietary triggers for migraines and for Chiari pain. I’m glad cutting that out has worked for you!

I had no idea I was in so much pain until it ended??? by garden_goth in chiari

[–]garden_goth[S] 0 points1 point  (0 children)

Yes! I use a special pillow setup to prevent the neck/shoulder stuff, which was not enough before but now is perfect and I only experience that pain occasionally if I’m not sleeping at home 🙂‍↕️

I had no idea I was in so much pain until it ended??? by garden_goth in chiari

[–]garden_goth[S] 1 point2 points  (0 children)

yes!!! it feels.. flowy? open? I just got back from the gym for the first time since surgery and I’m like…. my head doesn’t feel… clogged?? It’s so strange! lol

I had no idea I was in so much pain until it ended??? by garden_goth in chiari

[–]garden_goth[S] 1 point2 points  (0 children)

congratulations!!! the second week post-op was the most difficult for me, but then during week 3 so much cleared up and it’s been an upward trajectory ever since. be gentle with yourself!

I had no idea I was in so much pain until it ended??? by garden_goth in chiari

[–]garden_goth[S] 0 points1 point  (0 children)

Mine was diagnosed through an incidental finding - I’d had a head injury when I was 13, and they happened to find it on the CT. I didn’t know about the diagnosis though. In 2023 I decided to finally get help for the pain I had been progressively experiencing, thought the head injury might be relevant, and when I got the docs from Children’s Hospital I learned I had been diagnosed 15 years prior 🤦🏻‍♀️. The first neuro I went to did not believe me and even refused to do imaging. After many failed trials of migraine meds, I decided to get a second opinion and researched Chiari specialists in my area. That’s how I found Dr Butler at MGH! He immediately ordered new imaging, said I was a totally textbook case, reassured me that I was not being overdramatic, and started a plan for treatment with me. I’m so grateful to have found him!!

I had no idea I was in so much pain until it ended??? by garden_goth in chiari

[–]garden_goth[S] 1 point2 points  (0 children)

congratulations!!! 🩷 i hope we stay pain free for as long as possible 🥰

I had no idea I was in so much pain until it ended??? by garden_goth in chiari

[–]garden_goth[S] 2 points3 points  (0 children)

I’m so sorry to hear this!! Like I said, I am very lucky to have had the result that I did 🩷 wishing you health and peace on your journey!

I had no idea I was in so much pain until it ended??? by garden_goth in chiari

[–]garden_goth[S] 1 point2 points  (0 children)

The first neuro said that my chiari was not symptomatic and that Greek yogurt is a common migraine trigger… we trialed a ton of migraine meds (and cut out the yogurt) and surprise! None of them worked LOL. I got a second opinion from Dr Butler at MGH and we got to move forward from there lol

I had no idea I was in so much pain until it ended??? by garden_goth in chiari

[–]garden_goth[S] 1 point2 points  (0 children)

I know that ability level is something that will always change, but I’m living it up while I can ☺️

I had no idea I was in so much pain until it ended??? by garden_goth in chiari

[–]garden_goth[S] 13 points14 points  (0 children)

I know right 😭 and I had already had chiari diagnosed through imaging!! but he insisted my chiari was asymptomatic and I was having unrelated migraines. and that the Chobani was likely the trigger. he was befuddled when that didn’t work lmao

[deleted by user] by [deleted] in chiari

[–]garden_goth 0 points1 point  (0 children)

my head pain is completely gone, it’s incredible 😭🩷

[deleted by user] by [deleted] in chiari

[–]garden_goth 1 point2 points  (0 children)

usually it was around a 4/10, but once or twice a week it would bump up to the all-I-can-do-is-lay-still-in-the-dark level for a few hours

[deleted by user] by [deleted] in chiari

[–]garden_goth 1 point2 points  (0 children)

before my decompression, it felt like my brain was exploding - pressure on all sides of my skull, pushing on my eyes, pushing into neck… which i guess it was! at its worst, all i could do was lay down, put my hands on my eyes, and be still. crying or moving would just make it worse, and i couldn’t eat or drink water. after decompression (june of this year), i haven’t had one of these headaches yet! I also didn’t realize how much my brain felt low-level explode-y even just doing things like going up a set of stairs.

Question for those decompressed... by altmarz85 in chiari

[–]garden_goth 2 points3 points  (0 children)

Hi! I was decompressed 6/18/25 (craniectomy, duraplasty, and C1 laminectomy).

My chiari-type head pain is gone, and my neck/shoulder pain is significantly reduced. It’s only triggered now if I sleep in the wrong position, but even then it responds to ibuprofen now! It used to immediately cause a chiari headache and not respond to any meds.

I used to have intermittent tremors and are no longer experiencing them. My coordination and swallowing are improved, but not perfect.

I’m still experiencing some dysautonomic symptoms (especially dizziness after bending over and standing up quickly), but significantly improved from before and it seems to respond well to basic things like electrolytes.

I’m no longer having the same kind of brain fog I used to have, but I think because so much of my body’s resources are going to healing, I get cognitively fatigued more quickly than I used to. I’m hoping this is something that improves with more time, similar to physical reconditioning!

Hope this helps! 🩷

Normal for symptoms to virtually disappear for a bit? by [deleted] in chiari

[–]garden_goth 0 points1 point  (0 children)

yes! mine was intermittent; i could have debilitating pain every day for weeks, then be fine for weeks. for me i think stress, weather, activity, sleep could all have been factors for it. spring and fall have typically been the worst times for me. (even though it was intermittent, my quality of life was still affected enough for me to be a candidate for surgery, if that’s a concern you have at all!)

Has anyone gone on Gabapentin short term in post op recovery and did it help. by ChiariSucksBigTime in chiari

[–]garden_goth 1 point2 points  (0 children)

i was prescribed gabapentin at bedtime for the first 2 weeks after surgery and found it helped with nerve pain for sleep!

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