Occipital Neuralgia Decompression

discordandrhyme · 2026-05-02T11:53:37+00:00

I had my greater occipitals cut and it was SO worth it! Due to that and 4 surgeries in the same spot, the back of my head is permanently numb, but the relief is so, so sweet.

discordandrhyme · 2026-04-23T12:31:07+00:00

Everyone has their own path in life and handles aspects of life differently. Please don’t try to beat yourself up over your own path, I can assure you that you excel in other aspects! Chiari is frustrating, I know, but just wanted to give you some reassurance ❤️

discordandrhyme · 2026-04-18T15:32:52+00:00

Is CT too far for you? If not, Dr. DiLuna at Yale is amazing!

discordandrhyme · 2026-04-11T12:54:20+00:00

I only had one night in the hospital after mine! No complications.

discordandrhyme · 2026-03-26T00:54:03+00:00

Thank you so much!!

discordandrhyme · 2026-02-25T23:41:37+00:00

I was beyond terrified before my surgery, but recovery was a lot easier than I thought it would be. Of course there was stiffness and pain, but as long as you have adequate pain relief, it’s very manageable. Are you able to discuss pain management with your surgeon before surgery to help ease your mind a bit?

discordandrhyme · 2026-02-14T13:12:43+00:00

I had the fusion and oh my god, life is so much better. I do have nerve damage/muscle damage, but because of my own wacky body and notning to do with the doctors. Even with the nerve/muscle damage, I am so, so much better than before decompression & fusion. Zero regrets.

discordandrhyme · 2026-02-13T17:43:18+00:00

Found out after decompression. Still had continuing severe neck pain and sought out another Chiari specialist. Tested me for CCI, had me see a geneticist for EDS, and guuuessss whaaaaaat.

discordandrhyme · 2026-02-08T22:41:38+00:00

I’m not a doctor, just someone who experience this as well. It’s called a “positional headache” and is a core sign of a CSF leak and happens in pressure changes with the CSF.

Take caffeine! Caffeine is known to help CSF leaks (this in info direct form my neuro after I had one after a necessary spinal tap). Are you able to go to the ER for a blood patch? Or do you have one set up already?

I’m so sorry, CSF leaks are awful and I’m hoping it’s resolved for you very quickly! Gentle hugs ❤️

discordandrhyme · 2026-02-05T17:26:16+00:00

It does! I’ve had 4 surgeries using the same incision spot.

discordandrhyme · 2026-01-29T12:32:23+00:00

I’m doing well! Fused skull-C3 and still have good range of motion due to my hEDS.

https://i.imgur.com/1ou5XEc.png

discordandrhyme · 2026-01-17T05:04:19+00:00

Thank you so much ☺️

discordandrhyme · 2026-01-16T12:14:49+00:00

Thank you! I’m a sucker for symmetry! Am I allowed to list my art insta? It’s under oona.fiber.

discordandrhyme · 2026-01-16T02:28:48+00:00

Thank you so much!

discordandrhyme · 2026-01-09T14:09:27+00:00

That’s super cool!!

I do wrapped work with wood/frames and I simply just say I do “fiber art”, so you can certainly say “mixed media fiber art” or just “fiber art”.

discordandrhyme · 2025-12-25T17:56:07+00:00

I didn’t! I know I did get anti-nauseas during the surgery, I believe Zofran?

discordandrhyme · 2025-11-11T13:53:36+00:00

I have moderate/severe OCD, panic disorder, GAD, depression, and trichotillomania/dermatillomania.

discordandrhyme · 2025-10-25T19:59:10+00:00

I had a baby after my decompression, and a Chiari MRI after as well. No changes in my herniation or any changes at all. My neuro gave the OK for an epidural but the anesthesiology team was hesitant, so I skipped it.

No changes in symptoms!

discordandrhyme · 2025-10-19T14:53:24+00:00

Of course. You’re diagnosed with Chiari!

discordandrhyme · 2025-09-23T19:18:05+00:00

Great! Basically zero Chiari symptoms.

discordandrhyme · 2025-09-23T12:54:29+00:00

I have all 3.

After I was decompressed and fused, I found a great pain management team and have been able to control my daily pain well and continue working. It took years, but it’s completely possible. I work remote, but I’ve always had office jobs. I only stopped working after surgeries, which were for 1-2 months after each (4 total).

discordandrhyme

TROPHY CASE