Could Spinal Fluid leak loss be related to EDS +POTs? Epidural blood patches of spinal dura potential fix for headaches
Posted: 03 February 2018 05:20 PM   [ Ignore ]  
Total Posts:  1
Joined  2018-02-03

Hi everyone, I came across this talk on spinal fluid leaks and how that can lead to POTs like symptoms, especially in eds patients due to their leakier connective tissue.

Can someone explain how external communicating hydrocephalus could relate to this finding of leaking spinal fluid and the difference in pressures?

Hoping Dr. Diana can chime in and give us her wonderful insight on whether epidural blood patches may be a good option to try for those of us with pots and eds!!

Here’s a study abstract talking about this kind of connection:
Spontaneous low pressure, low CSF volume headaches: spontaneous CSF leaks.
Mokri B1.
Author information
Spontaneous intracranial hypotension typically results from spontaneous cerebrospinal fluid (CSF) leak, often at spine level and only rarely from skull base. Once considered rare, it is now diagnosed far more commonly than before and is recognized as an important cause of headaches. CSF leak leads to loss of CSF volume. Considering that the skull is a rigid noncollapsible container, loss of CSF volume is typically compensated by subdural fluid collections and by increase in intracranial venous blood which, in turn, causes pachymeningeal thickening, enlarged pituitary, and engorgement of cerebral venous sinuses on magnetic resonance imaging (MRI). Another consequence of CSF hypovolemia is sinking of the brain, with descent of the cerebellar tonsils and brainstem as well as crowding of the posterior fossa noted on head MRI. The clinical consequences of these changes include headaches that are often but not always orthostatic, nausea, occasional emesis, neck and interscapular pain, cochleovestibular manifestations, cranial nerve palsies, and several other manifestations attributed to pressure upon or stretching of the cranial nerves or brain or brainstem structures. CSF lymphocytic pleocytosis or increase in CSF protein concentration is not uncommon. CSF opening pressure is often low but can be within normal limits. Stigmata of disorders of connective tissue matrix are seen in some of the patients. An epidural blood patch, once or more, targeted or distant, at one site or bilevel, has emerged as the treatment of choice for those who have failed the conservative measures. Epidural injection of fibrin glue of both blood and fibrin glue can be considered in selected cases. Surgery to stop the leak is considered when the exact site of the leak has been determined by neurodiagnostic studies and when less invasive measures have failed. Subdural hematomas sometimes complicate the CSF leaks; a rebound intracranial hypertension after successful treatment of a leak is not rare. Cerebral venous sinus thrombosis as a complication is fortunately less common, and superficial siderosis and bibrachial amyotrophy are rare. Short-term recurrences are not uncommon, and long-term recurrences are not rare.

Posted: 20 February 2019 04:25 AM   [ Ignore ]   [ # 1 ]  
Total Posts:  2
Joined  2018-07-25

I found several resources while preparing for my research project. First of all, the Cerebrospinal Fluid Leak is characterized by the unknown causes (mostly, experts name trauma results, but there’re no clear cut rules to prove that).
Here’re the sources I found: Neurology and Neurosurgery, Biochemisty and Biology resources (TAMUCC):

Posted: 26 April 2019 06:16 AM   [ Ignore ]   [ # 2 ]  
Total Posts:  21
Joined  2016-12-18

I am really interested in this too as my severe POTS began abruptly, immediately after a forceful valsalva. I have severe othostatic headaches although the most disabling symptom for me is the constant lightheadedness & being unable to stand without passing out.

I wonder if the team at POTScare would be able to identify LOW CSF pressure as opposed to high.

I was completely well before that one incident, and suspect I may have a leak.

My supine MRI was reported normal, upright mild hindbrain herniation. Recently had another supine with contrast, this time specifically to look for signs of a CSF leak. No result yet.