All Posts & Coming Soon
Here are some things I am planning on posting:- Weekly updates to the "3-Month Updates Onward" post
- "How being a patient with multiple rare conditions will impact my care as a doctor"
- "1 Year Post-Op Updates" (est. Nov 2025)
Anything else you'd like to read? Contact me using the form found by clicking the ☰ icon in the top left corner!
How long did your headaches last after your surgery. My surgeon told me he found having such pain so far out from surgery meant it had more to do with chronic pain syndrome than Chiari. Which I found so odd. Most folks I heard were in pain for months.i was just short of two months when my surgeon said that.
ReplyDeleteHi! Thank you so much for reaching out! For me, my headaches stopped being the intense daily type around six weeks, and from there, they have been becoming less frequent over time, but I still have them 7+ months out. Luckily, they are infinitely less frequent and intense, and I have no regrets about getting decompressed, but they may be something I experience my whole life and may get better/worse at any time.
DeleteIt's tricky because there's no way for anyone to predict how (or if) our symptoms will change after getting surgery and we may never conclusively know which symptoms are conclusively caused by Chiari. But I also think your surgeon saying your symptoms are from chronic pain syndrome is dismissive of your experience. We usually use chronic pain syndrome to describe pain in a patient that cannot be linked to an underlying medical condition, but I have a feeling they haven't explored every avenue to understand your pain or how to treat it. Do you currently have a treatment plan for your pain? I'd love to talk to you about this more if it would be of any help, so please feel free to reach out to me at bigbrainsbiggerplans@gmail.com at any time! I hope you get more answers soon.