The National Organization of Rare Disorders (NORD) has a widely referenced library of more than 1,200 reports on rare disorders that provide important information written at a level suitable for patients and their families. NORD has recently released a new Rare...
We are very appreciative of Senator John P. Blake and his staff in advancing Pennsylvania Senate Resolution Number 13 to proclaim the week of February 26 to March 4, 2017 as Spinal CSF Leak Awareness Week in the Commonwealth of PA. The resolution was adopted on...
We are busy planning our very first Spinal CSF Leak Awareness Week. Save the date! February 26 - March 4, 2017 We'll be using #leakweek #spinalCSFleak and other hashtags. CLICK HERE for more info.
We have updated our series of resource documents, which are available on corresponding pages, as well as on our Resources page. These are written at a level suitable for patients that wish to be well-informed, as well as for health care professionals. We encourage you...
We're thrilled to announce a new partnership that will bring our resources in front of The Mighty's wide-reaching readership. We will now have a home page on The Mighty and will soon appear on stories related to spinal CSF leak on the site. The Mighty is a...
Because September is Chiari Awareness Month, we wish to draw attention to a diagnostic pitfall where intracranial hypotension (low intracranial cerebrospinal fluid volume/pressure) due to spinal cerebrospinal fluid (CSF) leak is concerned. When MRI of the brain is...
This is a common question. In the ACIP (Advisory Committee on Immunization Practices) recommendations, pneumococcal vaccination is recommended for patients with "CSF leaks", without distinguishing between cranial CSF leak with an anatomic barrier defect and...
Today, September 1, is Polycystic Kidney Awareness Day, #PKDAwarenessDay. Polycystic Kidney Disease (PKD) has been associated with spontaneous intracranial hypotension (SIH) due to spinal cerebrospinal fluid (CSF) leaks in a number of cases. More study is...
This very recent publication by Peter Kranz, MD and his colleagues at Duke University in Durham, NC provides new insight into the presence or absence of dural enhancement on brain MRI in patients with spontaneous intracranial hypotension (SIH) secondary to...
We launched our online Support Community for those suffering with Spinal CSF Leaks in partnership with Inspire several months ago. Inspire is a trusted company that builds and manages many secure online support communities. We are pleased to announce that the CSF Leak...
This is a VERY important paper by Schievink and hs colleagues outlining a classification of various types of spontaneous spinal CSF leaks. This does not apply to iatrogenic or traumatic leaks. The classification was based on a large sample size of well over 500...
Rebound intracranial hypertension (high intracranial pressure) has been described after epidural patching and surgical procedures for intracranial hypotension (low intracranial pressure) resulting from spinal CSF (cerebrospinal fluid) leak. One of the treatments for...