CSF leaks. Are the supposed CSF leaks that the site of leak is undetected (cryptic CSF leak) actually something else.... like GDD. Same with Pott's Syndrome

CSF leaks have become a popular diagnosis over the last 5 years or so, as a cause for chronic head-aches. The classic symptoms of CSF leak are the sufferer is basically ok when lying down, but when they stand up they get headache, dizziness, and other neurological symptoms. Pott's Syndrome is a similar phenomenon, with increased heart rate, light-headedness, dizziness, when standing up.

So old school CSF leaks are skull fracture, tear of the dura, clear fluid coming out of the ear (otorrhea) or nose (rhinorrhea). The great concern is the risk for developing meningitis, and by extension death. These would be cranial CSF leaks.

Spinal CSF leaks arise when the dura is disrupted along the spine. This again can occur in major trauma, but probably the majority now arise from medical lumbar puncture. The latter explained because many lumbar punctures are performed at the present time. CSF leaks can be detected by injection of radioactive agent in nuclear medicine studies, iodine contrast in CT, and GBCA in MRI. Diagnosis is made when the imaging agent is identified outside the dural sac.

Everything mentioned above I agree with, if we see evidence of the leak then symptoms likely are related to the leak.

What if a leak is not detected, and the cause for the leak is somewhat tenuous as a cause for this disruption, like a vigorous neck massage. This would be a clinically suspected CSF leak, or more correctly a cryptic CSF leak. The clinical history of postural development of symptoms - ok lying down and symptoms when standing up, as proof of the suspected diagnosis. This is now getting into the territory of a bridge too far. And that bridge becomes much longer when the diagnostic test used to look for a CSF leak, where the cause of symptoms is shaky, is a lumbar puncture - a procedure which can cause a CSF leak. And the treatment for a cryptic CSF leak being a blind blood patch. Both of these represent two bridges too far for me. Feeding the Industrial-medical complex, and assisting in explaining why we pay twice as much money in the US, than any other country in the world, cover only half the population with health care insurance coverage, and have the 16th rated health care quality in the world.

This postural symptom development also is observed with GDD. So how often is cryptic CSF leak actually GDD? I do not know but I think maybe 50% While on the topic how often is Pott's syndrome a symptom of GDD, I don't know but I think at least 50%.

But as a recent blog opined, just because one has GDD, doesn't mean you can't have something else. What I am concerned with, in cases of possible cryptic CSF leak: is to not make the mistake of missing bacterial meningitis, and calling it GDD. Fever, high white blood cell count, with head and neck pain of meningitis and other symptoms of meningitis... this is not a diagnosis one wants to miss, as it can cause severe long term neurological complications and death.

A critical take home point for physicians is that GDD must be added into the differential diagnosis of many conditions... but with the addition that extreme caution must be used when the differential includes entities that can be rapidly lethal, but are treatable if caught early. In the great majority of cases: assuming that a cryptic CSF leak is GDD, and after 5 or so chelations there is no change in symptoms so the diagnosis of CSF leak is favored. One does not have the same luxury of assuming an entity which can be very damaging, very quickly, like serious infections, is GDD. Continued close monitoring is essential. I particularly pay attention to elevated white blood cell count with an elevated neutrophil component and fever, are findings I do not gloss over as probably GDD. High white count, high neutrophil count and fever suggest infection: be diligent and wary.

Richard Semelka, MD