• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Spinal Fluid Leaks - Dr Ian Carrol, Stanford

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
Thanks to @Kati for pointing this video out - its 90 minutes and was well worth my time - bonus is the q and a when a doctor in the audience is humble!

Here are my notes:

Spinal Fluid Leaks


Dr Ian Carrol, Stanford, ic38@stanford.edu

Causes:

1. hypermobility (coz durma weaker) (spontaneous)

2. calcified bone pokes hole in durma (spontaneous)

3. spinal tap / epidural / surgery (Post Dural Puncture)

- 30 – 40% of spontaneous pts have multiple leaks


Symptoms: headache, nausea, fatigue, neck pain / stiff, ridicular pain, neurological ‘weirdness’ (cognitive, memory, reading, etc), pituitary may be enlarged coz of CSF (Empty Sella Syndrome: may have low growth hormone; may hypothyroid) – also, feeling worse when standing, or later in the day: but relieved by laying down.

Misdiagnosis: POTS, Chiari Formations, EDS, Tarlov Cysts, chronic migraine, CFS, FM, (maybe Parkinson’s, one case)

Diagnosis:

- often MRI deemed ‘normal’ (“by world class docs”), thus MRI not good diagnostic tool

- CT myelogram will show abnormal

- Elevated protein in CSF

- 20% will have elevated prolactin (coz hypo-thalamus-pituitary-dissociation)

Treatment:

!st: EBP: Epidural Blood Patch (some require repeat after months, some so far so good)

2nd: Fibrin ______________

3rd: Surgery