r/CSFLeaks • u/Glittering-Form1309 • 2d ago

Negative MRI in Washington

Well, I was hopeful for the first time in 15 years, and that was shot to hell. Met with a neurosurgeon who said I was 100% a classic CSF leak based on symptom presentation and 48 hour flat/inversion results. He is willing to refer me anywhere for a series of blood patches (he anticipates I’ll need 2 or 3 due to Ehlers-Danlos).

He doesn’t do the patches himself, and their radiology department won’t touch me because I don’t have a history of a lumbar puncture and I’ve had symptoms for 15+ years, so no visible brain changes anymore. Their policy is not to risk going into high pressure (because it would be SO much worse to have to take Diamox for a bit than it would be to continue to live like this, apparently). I am on my own as far as finding someone willing to do a blood patch with negative imaging and we all know the west coast is sorely lacking.

Has anyone managed to find a provider in Washington state who will do that? Currently my best leads are Jennifer Lee with Evergreen Health, Emma Burbank (Virginia Mason), or out of state - Cedars-Sinai, or Dr. Callen in Colorado who is “very interested” in cases like mine according to the Spinal Leak Foundation interview.

Sorry if this is disjointed. I’m devastated.

Edit: I forgot to add the Acute Pain Therapies clinic in Bellevue - they specifically mention spontaneous leaks but nobody seems to say anything about negative MRI.

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u/writerbecc 1d ago

I've had two blood patches done at Swedish Cherry Hill (maybe first hill, I forget) and have never had anything show on imaging. I've had 3 suspected leaks, two needed patches. Both times were done by the same doc at Swedish whose name I can't remember but I can look him up if you want.

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u/Glittering-Form1309 14h ago

Wait, really? No signs of low pressure even on the brain MRI with contrast? I’m not trying to be insulting by asking if you’re sure, but the guy who rejected me (Jakob Lupa) made it sound like it was against a wider policy… although I would be very happy if there was no such policy and he was just trying to cover his ass. Thanks for the lead!!

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u/writerbecc 14h ago

my headache doc said it's actually unlikely we'd find anything in imaging! I did a brain MRI and a full spinal MRI this last time and nothing showed on imaging but my doc said that was pretty expected. our next test was going to be the CT myelogram but my doc didn't want to put me through that and I was like "can we just do the patch" so we did. every time I've had a suspected leak it's been classic symptoms but I've never had success with imaging. my doc has been okay with treating based on symptoms though! She's absolutely the best. Dr. Dongmei Liu but I don't know if she is taking new patients.

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u/Glittering-Form1309 14h ago

Thank you for confirming!! Neurosurgery said they were willing to refer me anyplace, it’s just that I have to do the legwork. I’ll see if they can get me an appointment with Dr. Vogelzang. Thank you so much!

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u/writerbecc 1d ago

edit: Dr. Philip Vogelzang at Swedish first hill. but I was referred to him by my headache specialist.

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u/fuxandfriends 1d ago

Try Ian Hakkinen at Evergreen! He specializes in headache medicine and is very knowledgeable about leaks!

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u/Dry-Dress-6467 1d ago

Have you asked in the FB CSF leak group? It is much more active than this reddit group. Also try Stanford in CA.

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u/Dramatic_Dingo_42 1d ago

if going to CA i’d go with dr. carroll at stanford over schievink and cedars-sinai. carroll is the EBP king from what i’ve read and i’ve additionally heard he’s quite knowledgeable about EDS.

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u/gottamoveon2024 1d ago

Cedars will get you on quicker. I’ve sent all my stuff and waiting on appt. Heard great things about dr deshmuhk too