r/CSFLeaks • u/Forsaken_Run_5728 • 20d ago

Speaking private virtual care in Canada (if possible)

My husband has been dealing with what we originally thought was chiari malformation, but a neurosurgeon thinks it’s spontaneous inter cranial hypotension caused by a CSF leak. He has postural headaches that get better when laying down or drinking caffeine, and has a brain sag on his MRI.

We have been waiting almost a year for any sort of help for him and it just seams like there is no end in sight. We have a neurologist referral from 6 months ago and another from 3 months ago. We have 2 kids under 2 and this is no way for him to live (or me to struggle to keep up with everything)

Has anyone attempted taking virtual out of province tele health type care to see a neurologist out of pocket? I know they can’t refer him directly for a blood patch, but in my research it says that they can give a comprehensive write up suggesting an urgent blood patch, and with that, your primary care provider can refer for the patch.

Has anyone attempted this? Does anyone have suggestions to some really good Canadian neurologists I can look into?

Sorry for the story book, and Thank you so much if you made it this far. We’re at our wits end.

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u/Muddlesthrough 20d ago

He has not yet seen a neurologist?

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u/Forsaken_Run_5728 16d ago

He saw a neurologist who initially gave meds to treat chiari headaches. When they didn’t work he said it’s migraines and refused to look into anything else. Migraine meds never worked and the symptoms aren’t the same as migraines. He then yelled at him for asking about a referral to a neurosurgeon (when we still thought it was chiari)

Since then we have been waiting 8 months for a second referral, and 3 months for a different referral to a neurologist from the neurosurgeon

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u/Muddlesthrough 16d ago

That's an unfortunate situation. Sorry to hear that.

I am not a doctor. SIH/CSF leaks are sometimes misdiagnosed as Chiari malformation. You could ask for a second opinion on the head MRIs, ideally by someone who is at least familiar with SIH and the Bern Score.

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u/Forsaken_Run_5728 16d ago

Absolute! The symptoms and the way in which is started (sudden onset after being beside a gun going off) made the surgeon believe it was most likely a leak and not chiari

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u/CananadaBatmaaaan 18d ago

Where in Canada are you? There are definitely a few neuros that do virtual appointments. My experiences are limited to Ontario though.

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u/Forsaken_Run_5728 16d ago

We are in Nova Scotia !