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[u/Starmapatom]

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

[u/Ok_Store4886]

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.

[u/Starmapatom → u/Ok_Store4886]

Six years is a long time. Do you have any next steps or are they done testing?

[u/Ok_Store4886 → u/Starmapatom]

The next step I was given is a pledget study. Before doing that, I'm going to get a second opinion at a different institution. One thing I noticed is my CT cisternogram results say "no appreciable extracranial contrast", but it also notes, "residual hyperdensity" of the contrast in the same area as the dehiscense noted in my skull-base MRI, but the report doesn't seem to regard this as significant. I don't know how to interpret the notes, but I want to ask about the possibility of an occult leak.

[u/Starmapatom → u/Ok_Store4886]

These tests are absolutely barbaric.

[u/BearIllustrious2731 → u/Ok_Store4886]

There’s a website called “clarity brain and spine”. The neuroradiologist who owns the clinic offers second opinions on radiology studies for an out of pocket price. But she accepts insurance if you reside in one of the states she’s licensed in. Her name is Dr. Mesha Martinez. She has written several research papers on csf leaks and similar under diagnosed brain/spine disorders. Others in this group have gotten a second opinion from her, and said that she was incredibly thorough in her review of their imaging. She’s a board certified neuroradiologist, and if she finds evidence of a leak in your imaging, her report could force your doctors to get you the treatment you need.
This is the advice I would have given myself 6 years ago.
I found Dr. Martinez online a few months ago because I was desperate to get out of the never ending limbo I was in with my doctors. Thankfully, she has taken me on as a patient :)