We’re looking for enthusiastic CSF Leak Association members to get involved as online forum community leaders.
If you’re interested, please drop us a line to find out more: firstname.lastname@example.org
We we delighted to have been able to release our brand new factsheet on imaging techniques to coincide with both Day Three of Leak Week UK and global Rare Disease Day 2018.
The guidance provides a brief overview to most of the common imaging techniques that diagnosed or suspected spinal CSF leak sufferers will encounter on their diagnostic and treatment journeys.
It was prepared with significant professional input and should answer many of the common questions that patients have about the different scans that they’re put forward for.
You can download your own copy of the publication by clicking here.
Our special thanks go to Scottish Canals for supporting this year’s Leak Week UK by lighting up the wonderful Kelpies for CSF leak awareness.
Thank also to everyone one braved the plummeting temperatures to attend and pose for this fabulous photograph [credit: Ray Michael].
You can read more about Leak Week UK 2018 here: www.csfleak.info/leakweek2018
After many months of planning, Leak Week UK has commenced. We’ve got a bumper week of CSF leak-related activity ahead.
You can read our introduction to Leak Week here: www.csfleak.info/leakweek2018/introduction
And catch up on everything that’s happened on Day One here: www.csfleak.info/leakweek2018/day-one
The Mayo Clinic has published an interesting overview of CSF leaks in its September 2017 edition of the Mayo Clinic Health Letter, entitled ‘Headaches and Spinal Fluid Leaks – An Emerging Problem’.
“You’ve had headaches for years. You usually start the day fine, but by lunchtime, the pressure-like pain has begun and is growing in intensity. You’ve sought out plenty of treatment options, but nothing has truly helped. At this point, you’re trying to live with the pain as best you can by taking medications and reducing stress.
Headaches come in a variety of types — such as migraine, tension or cluster headaches — with a variety of characteristics. A lesser known cause of headache pain occurs with low levels of cerebrospinal fluid — a fluid that surrounds, cushions and protects the brain and spinal cord. Low fluid levels can be caused by a temporary leak that occurs when the membrane holding the fluid (dura) is punctured, such as after a lumbar puncture, during surgery or with an epidural injection to numb part of the body.
But cerebrospinal fluid (CSF) leaks also can occur spontaneously, typically along the spinal column, and aren’t always temporary…”
You can download a copy of the article and read the full text by clicking below:Mayo Clinic Health Letter - Vol.35 No.9 (Sept 2017)
Measuring lumbar puncture opening pressure is common practice during spontaneous CSF leak and intracranial hypertension investigation and diagnosis. Less common, but still widely used at some institutions is the practice of looking out for low intracranial pressure via ICP monitoring.
Both confirmed and potential CSF leak sufferers often query how pressure is measured, the differences between opening pressure and intracranial pressure recording, and what ranges constitute normal, low and high pressure. In response, we’ve produced a CSF leak-specific factsheet.
Our updated factsheet explores the key ins/outs of measuring opening pressure by lumbar puncture and provides details on the common pressure ranges in tabulated form. Also covered are the basics of CSF production and absorption.
We have updated the factsheet in response to feedback and also referenced a number of new and additional journal articles, including two important publications which confirm that ‘normal’ opening pressure is not an uncommon occurrence with spontaneous CSF leaks.
Download the factsheet here: Measuring Opening Pressure & Intracranial Pressure
CSF Leak Association wristbands are a great way to raise awareness of both cerebrospinal fluid leaks and the charity itself.
All of our members receive a free wristband in their welcome pack when they join or renew their subscription, however we’re thrilled to now be able to offer additional wristbands for sale on their own.
Shipping is currently free for UK orders; we ship to a range of other countries for a small charge. You can buy wristbands individually or in packs of four. If you’re after more than three, packs of four offer better value.
You can purchase wristbands via our website’s shop section: www.csfleak.info/shop
We’re thrilled to announce the publication of our latest infographic: Upright Headache? Think CSF Leak!
The publication, produced in consultation with NHS neurologists Dr Simon Ellis and Dr Manjit Matharu, is designed to be printed off at both A3 and A4 size; it is ideal for use as a leaflet or poster, which can easily be passed on to friends and family, or given to your GP or other healthcare provider to display in their surgery or office.
Printed copies will be included in our members’ welcome pack from late June 2017 onward. You can download the infographic in PDF format for printing at home by clicking here.
We are absolutely thrilled to announce that, after months of hard work by our dedicated band of volunteers, the CSF Leak Association is now open for membership.
As a small charity with big ambitions, our aim is to provide information and support to all sufferers of cerebrospinal fluid (CSF) leaks, their family, friends and medical advisers, as well as securing clear and consistent patient pathways for the diagnosis and treatment of CSF leaks.
As a membership organisation, we rely heavily on the fantastic support and generous encouragement of our supporters in the work that we do. Without this dedicated help, we could not function and would be unable to continue to raise awareness of cerebrospinal fluid leaks and push for positive change.
Whether you’re an individual or an organisation, based in the UK or further afield, if you share our aims and objectives and benefit from the work that we do, why not join us and get involved?
You can join us online or by post. Find out more here: www.csfleak.info/membership