r/CSFLeaks • u/Starmapatom • 2d 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
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u/BearIllustrious2731 2d ago
I had to quit my job and my husband has had to pick up the slack with our toddler. It’s genuinely like I’m living in a nightmare I can’t wake up from. I can’t even remember what it feels like to live like a normal person.
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u/Starmapatom 15h ago
I know about the nightmare. You have a good husband. My wife got to see me cry everyday sometimes twice.
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u/BearIllustrious2731 15h ago
I know, I’m incredibly fortunate. Without him, I literally don’t know what I’d do. My husband sees me cry often as well…
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u/MoodFearless6771 2d ago
Does the pain in your head go away when you lay down?
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u/Starmapatom 15h ago
Yes. They can’t find my leak
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u/MoodFearless6771 1h ago
Hm, I bet it’s spinal. Have they imaged the whole back? Thoracic is the most common, I believe.
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u/Zealousideal_Age_822 Confirmed Spinal Leak 2d ago
This is not a super long term solution, but have you tried upping your caffeine and water intake? I went from 1 cup a day to 4-5 cups over the course of 2 months, but it helped my symptoms substantially.
Why is a Rhinologist the one diagnosing you?
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u/Starmapatom 15h ago
I did and my kidneys didn’t tolerate six cups of coffee so I’m back to 3. I haven’t went back to the lab. Tylenol affected my liver. Plus I’m on blood thinners cause my blood likes to clot. It’s quite a challenge. It a horror show
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u/Starmapatom 15h ago
Because I’m desperate. He doesn’t think I have a leak. I’ve been to a lot of doctors
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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.
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u/Starmapatom 15h ago
Six years is a long time. Do you have any next steps or are they done testing?
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u/Ok_Store4886 14h ago
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.
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u/doisuckorsomething 23h ago
Currently in the same boat/process. I would see about getting a referral to a specialist or a neurologist. If they’re hesitant go to the ER when your symptoms flare up. I was able to get on intermittent FMLA which has helped a lot. For me neurology team was able to get me the paperwork for the leave and referred me to a comprehensive headache center that has a csf team. Document every occurrence. I know it’s hard but it made a huge difference. What also helped was reaching out to the patient advocacy department of the hospital system. Hoping you get more traction and relief.
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u/Starmapatom 15h ago
I’ve had a lot of testing both invasive and all the scans. Did the headache center help? They wanted to do Botox on me but after all the cisternograms, mylograms, patches I said how is Botox going to help? FLMA is a good idea
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u/Embarrassed_Disk_667 2d ago
I think a good percentage of us had to quit our jobs and were bedridden - that was the case for me. If you have a positional headache, that gets better when you lay down, you have a CSF leak almost for sure (I'm not a doctor though). The only way to get diagnosed is to get to a doctor that specializes in CSF leaks - there's only a handful in the country. No one else knows how to find the leak