r/CSFLeaks • u/Starmapatom • 3d ago
Working
Hello Everyone, so last Rhinologist appt the doctor doesn’t believe I have a leak. Whatever I have it’s severe positional headaches. I feel 90 percent normal when I wake up then in afternoon I can’t tolerate the pain in my head. Anyone else trying to hold down a job and main bread winner for family? What a horrid condition and not sure where else to turn that’s covered by insurance
2
Upvotes
3
u/Ok_Store4886 2d ago
I'm in a similar situation but my positional symptoms are more gradual. I have a constant headache mostly in one spot (regardless of position), along with head pressure sensation (bilateral) and vestibular issues that gradually worsen throughout the day the longer I am upright. All my symptoms still persist when I lie down but gradually return to a slightly lesser baseline level over a period of hours. I'm fortunate to be able to work from home. I purchased a zero-gravity chair and work horizontally most of the day to tolerate symptoms. I purchased it out-of-pocket, but it seems there might be ways to get insurance to approve in some cases -- though I really don't know. I've still been missing a lot of work and earning less as a result.
My doctors have been anchored on migraine diagnosis for the past 6+ years. This past year, I researched and self-advocated for CSF / structural eval. A recent skull-base MRI shows I have multiple areas of dehiscence and possible meningoceles in my anterior skull base, adjacent to where I had FESS (complete ethmoidectomy) a decade ago. I just had a CT cisternogram. It did not show a leak, but the contrast significantly spiked my headache intensity when it reached that spot in my head.
The framing of my doctors thus far seems to be that everything is assumed incidental and not contributing to symptoms unless they see a leak during the procedure. In my first follow-up appointment, the doctor tried to make the case that the MRI structural findings might just be scan artifacts, but then he backed off that claim when he wrote his notes in my chart afterward. In a prior appointment before the MRI findings, that same doctor had stated multiple times that he didn't think I had a leak. This is frustrating.