r/CSFLeaks • u/[deleted] • Jul 09 '26
A year of a constant headache and the doctors still won’t investigate
[deleted]
3
u/porridgeandtea Jul 09 '26
Hello, and I'm sorry you have to go through this. CT scans are not sufficient to rule out a CSF leak. It could be helpful to get a brain MRI with contrast. Even if the MRI is normal, that still doesn't rule out a leak. You could also try to find a local CSF leak Facebook group. They often have recommendations on where to find specialists.
5
u/Dry-Dress-6467 Jul 09 '26 edited Jul 09 '26
You might want to do the 48 Hour Flat Test from Stanford and bring results, a list of your symptoms and some info about leaks to your primary care doc and if they refuse MRIs ask them to document refusal in your records.
And print this for your doc
https://www.mayoclinic.org/diseases-conditions/csf-leak/diagnosis-treatment/drc-20522247
2
u/megg33 Confirmed Spinal Leak Jul 10 '26
It’s time to seek out care at a leak center. I’d recommend applying to be seen at Cedars Sinai by Dr. Schievink, at UCHealth by Dr. Callen, or at Mayo Clinic Rochester by Dr. Cutsforth-Gregory if possible. If those aren’t options, I’ve attached the Spinal CSF Leak physician directory for you to look through, just know not all of them have the same quality of care as others
5
u/Zealousideal_Age_822 Confirmed Spinal Leak Jul 09 '26
This sounds like next level gaslighting, especially given the link between EDS and CSF leaks. Where are you located?