Updated Medical Accommodations Card for CSF Leaks

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CSF-Leak-Association-Medical-Accommodations-Card-V2-Home-Print-VersionMany CSF leak sufferers will have experienced the need to sit or lie down because of their symptoms, while being in a place where sitting or lying down was not socially acceptable, allowed or provided for. Sometimes people may initially object to you lying down somewhere because your disability is invisible.

The CSF Leak Association has updated its popular Medical Accommodations Card, which can often help in such situations. The card is free to download for personal use. It can be folded in half and kept in your purse or wallet. CSF Leak Association members also receive professionally-printed version in their welcome/renewal packs.

The card explains what a CSF leak is, what symptoms you may be experiencing and your need to sit or lie down. It can be shown to any one who may not understand your need to sit or lie down and encourage them to make allowances and provide assistance.

You can download a copy to print off at home here:

CSF Leak Medical Accommodations Card

 

CSF Leak Volunteers’ Week 2020

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It’s Volunteers’ Week 2020 in the UK.

We’re celebrating all of the work that our wonderful volunteers have done.

We’re also on the lookout for more volunteers.

Check out our dedicated web pages here: www.csfleak.info/volunteersweek2020

#VolunteersWeek #VolunteersWeekScot #CSFleak

Hospital Saturday Fund Grant

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hospital-saturday-fund-grant-csf-leak-associationWe are delighted to announce that we have been awarded a grant by Hospital Saturday Fund to help us develop a new website and resource hub.

The new site, which will be developed with industry partners over the coming months, will feature up-to-date tech and make access to quality information and support for CSF leak patients quicker and easier.

Special thanks of course go to the Hospital Saturday Fund, who have shown a real interest in helping us help those with cerebrospinal fluid leaks, and also to our trustees who have worked so hard on securing the funding.

#csfleak #spinalCSFleak #intracranialHypotension

New Spinal CSF Leak Imaging Factsheet

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Imaging Quick Reference Factsheet FB Advert 1

Quick Reference Guide to Spinal CSF Leak Imaging Techniques

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.

 

Blue Kelpies for Leak Week UK

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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

Leak Week UK 2018: Day One

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CSF Leak Association Leak Week 2018

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

Headaches and Spinal Fluid Leaks – An Emerging Problem

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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.

CSF Leak Association - Mayo Clinic Newsletter Sept 2017Headaches 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 Opening Pressure & Intracranial Pressure

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CSF Leak Association Factsheet Series Advert - Opening Pressure on Lumbar Puncture

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