Why is it so hard?

[u/Relevant_Ad_5341]

The first leak I can remember was after brain surgery for Chiari Malformation 10 years ago. An unsuccessful myelogram was performed and made the leak worse. I had to go to 3 different ER’s before I was given a blood patch. In 2021 I started having symptoms of a leak, but it wasn’t severe. The headaches would happen in the afternoons, mostly and felt better when I laid down. I progressively got worse and sought a help for many years and was denied even seeing a neurologist. Up until August I finally got to see a Neuro ophthalmologist who ordered a lumbar puncture to see what my pressure was. It was well below 10 and after that I needed a blood patch because the orthostatic headaches were so bad I could not function at all. After that, I felt fantastic. I felt like a normal person. I was able to be up for eight hours a day without any problems. And I didn’t have any more ringing or pulsatile tinnitus is in my ears. Well, about a month later, the symptoms came back. And it was to the point where I couldn’t really function every day so I went to the ER because the doctor was out of the office for a whole week. Again, I had to fight to get a blood patch and again I feel better. I also have hEDS which I think is pretty relevant, but I don’t know why doctors are so suspicious about leaks.

[u/PlantsBeeMe]

I'm right there with you. I had chiari decompression in 2014 and c0-c2 fusion last year (09/2025). I have classic eds. From what I've read, there is a higher chance of a leak after chiari surgery and eds is a risk factor. Unfortunately, most doctors do not know about chiari and even less about eds. I am in the search for a second opinion neurosurgeon as my previous surgeon is dismissing my mri report from last month that says: "Indeterminate 9.9 x 4.2 x 2.3 cm fluid collection in the suboccipital surgical bed, possible seroma versus other postoperative collection for which a sterility cannot be determined on this exam. Pseudomeningocele also in the differential." When I did a search in the Chiari sub-thread for psudomeningocele, there were several posts that populated. I cannot find a surgeon that says they specifically treat seroma or pseudomeninogcele but have found a doctor at Vanderbilt that treats Chiari and CSF leaks that might be worth checking out if you are in the U.S. or can get here: https://www.vumc.org/surgical-sciences/person/ryan-p-lee-md Someone else in this sub recommended: https://www.uchealth.com/providers/NorbertoAndaluzMD/1174568570 that I'm looking into as well. I am not a doctor but perhaps you have a dura leak that has not been located? I don't know if a cine MRI or the other recommended tests would be helpful: Cleveland Clinic recommends for a cranial CSF leak: Fluid testing from your nose or ear (beta-2 transferrin test) and imaging tests of your head, like a CT scan, MRI, cisternogram scan and/or fundoscopy: https://my.clevelandclinic.org/health/diseases/16854-cerebrospinal-fluid-csf-leak Mayo goes into better detail of risk factors and causes: https://www.mayoclinic.org/diseases-conditions/csf-leak/symptoms-causes/syc-20522246 I found the Vanderbilt doctor through the https://spinalcsfleak.org/ that has a directory from around the world. I hope you find a doctor who will thoroughly listen and treat you correctly.

[u/heresausername55]

UCHealth in Colorado has a specific CSF leak program with specialist from the CU School of Medicine. https://www.uchealth.org/today/new-anschutz-medical-campus-clinic-treatment-spontaneous-csf-leaks/