Coronavirus (COVID-19) & Cerebrospinal Fluid (CSF) Leaks

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Covid-19 Coronavirus CSF Leak Association Banner

Note: This page will be kept under review and amended if/when government or expert guidance is updated. Updates will be printed in blue text. Last updated: 24 March 2020.

Many of our members and community members have raised concerns about the ongoing coronavirus pandemic (COVID-19) and whether or not people with CSF leaks, both cranial and spinal, and those with cerebral shunts, are at an increased risk of catching the virus or having more severe illness if they get the virus.

We have consulted with our Medical Advisory Committee in light of revised government guidance that now advises those at ‘higher risk’ to practice social distancing, and their feedback is included in this statement. The definition of higher risk currently includes being older than 70, having some underlying health conditions and being pregnant.

As of 23 March 2020, only essential travel outwith the home for food, health reasons or essential work is now advised in the UK; the vast majority of people have been told to remain in their houses and avoid contact with anyone from outwith their immediate home group. 

COVID-19 is a novel virus and as such there isn’t a large body of evidence to draw from and this outbreak is an evolving situation. There is currently no clear evidence to suggest that having a CSF leak or a shunt, on their own, puts a person at higher risk. This virus predominantly affects the lungs and, if severe, it is known to cause cardiac issues.

We would, however, urge each of you to carefully consider your overall health status, including your age, smoking status and other separate health conditions you may have (including high blood pressure, heart disease, lung disease, cancer or diabetes) when considering what steps you plan to take to manage your risk of contracting the virus.

Please also be aware that there are a number of health conditions known to co-occur in some people who have or have had a CSF leak (e.g. connective tissue disorders, postural tachycardia syndrome (PoTS), mast cell activation syndrome (MCAS) and intracranial idiopathic hypertension (IIH)) and if you are affected by any of these conditions, we would urge you to seek advice from condition-specific organisations who have issued their own statement in relation to COVID-19 or your medical team; you must consider your own health status in the round.

If you have specific concerns about your individual health then it would be best to speak with your doctor and follow the government or health service-issued guidance relevant to where you are.

Regardless of how stringently each of us chooses to follow the social distancing guidance, we can all do our part by practising good hygiene practices, isolating as and when necessary, keeping in virtual contact with each other and sharing only trustworthy information and advice about COVID-19.

Please also consider your mental health and emotional well-being at this time and don’t forget to take a break from the news from time to time. It is important for us all to keep abreast of current NHS and government guidance, but it is equally important for us to maintain perspective.

The mental health charity, Mind, has some useful information that might help: www.mind.org.uk/information-support/coronavirus-and-your-wellbeing

Finally, everyone involved with the CSF Leak Association wishes you all the best in these coming months. Disruption to NHS services will no doubt affect many of us as the UK’s four health services mount a response to the outbreak; if we successfully ‘flatten the curve’ this outbreak will still be with us for some time.

Although nobody can predict with any certainty how mild or otherwise their illness will be if they get COVID-19, we know that many people with CSF leaks report that even common colds and flu (particularly with associated coughing) can make their symptoms harder to cope with. If you rely on pain or other regular medication, please make sure that you contact your GP surgery to make sure you have what you need.

Please also don’t be shy about asking your friends or family for help during any period of self-isolation and if you’re in the unfortunate position of being in isolation without your usual support network, there are local support groups springing up all over to help out. We would, however, urge you to exercise caution when dealing with any external organisations that are not formally registered as charities or healthcare providers, as they may not be subject to the same level of scrutiny or regulation.

Here are few links and resources that you may find useful:

If you believe that you may be experiencing symptoms of Covid-19/Coronavirus, you must follow the latest NHS/government guidelines and, amongst other things, self-isolate. If you are not located in the United Kingdom, advice for your country may vary slightly.

Medical Advisory Committee Update: March 2018

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The 20th January saw the inaugural CSF Leak Association Medical Advisory Committee meeting at the National Hospital for Neurology and Neurosurgery in London.

A group of doctors from around the UK, along with members of our Board of Trustees and our Patient Representative, met to discuss cerebrospinal fluid (CSF) leaks and to begin to work together to raise awareness and secure progress within the UK health systems.

The meeting was a culmination of almost two years of work by the CSF Leak Association and was the first time that medical professionals met around a table with the sole intention of talking about health care as it relates to this debilitating and under-diagnosed condition.

In attendance were:

  • Dr Manjit Matharu, Consultant Neurologist, NHNN, UCLH NFT
  • Mr James Walken, Consultant Neurosurgeon, Aberdeen Royal Infirmary, NHS Grampian
  • Dr Anthony Ordman, Consultant in Pain Medicine, Royal Free Hospital, Royal Free London NFT
  • Dr Changez Jadun, Consultant Neuroradiologist, Royal Stoke University Hospital, UHNM NT
  • Dr Simon Ellis, Consultant Neurologist, Royal Stoke University Hospital, UHNM NT
  • Polly Walker, Trustee, CSF Leak Association
  • Deborah Lunnon, Trustee, CSF Leak Association
  • Clare Joy, Trustee CSF Leak, Association
  • Cerian Baldwin, Trustee, CSF Leak Association
  • Sarah Mead, Patient Representative

With apologies received from:

  • David Baldwin, Chair of the CSF Leak Association
  • Dr David Butteriss, Consultant Neuroradiologist, The Newcastle-upon-Tyne Hospitals NFT, Royal Victoria Infirmary
  • Dr Brendan Davies, Consultant Neurologist, Royal Stoke University Hospital, UHNM NT
CSF Leak Association Medical Advisory Committee Members

MAC Members at the inaugural meeting in London (Jan 2018)

An overview of the CSF Leak Association’s work to date and plans for the future were shared, followed by an acceptance of the MAC Terms of Reference. Dr Manjit Matharu was elected as chair and Clare Joy was elected as Secretary.

Sarah Mead was also in attendance in her capacity as current patient representative. The remit of the patient representative is to represent the CSF Leak Association’s membership, and patients more generally, within the organisation and, in particular, on the Medical Advisory Committee.

Throughout the afternoon, encouraging and in-depth discussions took place focusing on:

  • a review of current literature and website information;
  • gap analysis of current content including specific requests for guidance resulting from patient survey;
  • the NHS Information Standard and the Association’s road to accreditation;
  • a proposed conference/symposium and patient day in the UK;
  • securing the addition of CSF leak information on the NHS Choices and NHS Inform websites;
  • guidance on creation of an approved NHS pathway for CSF leaks; and
  • an agreement of annual objectives.

Whilst realistic about the scale of the task ahead, all parties were deeply encouraged, enthusiastic and positive about the future, secure in the knowledge that a firm working relationship has now been established between the Association and the MAC. This was an historic meeting for CSF leaks in the UK.

Leak Week 2018

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Leak Week 2018 Featured Image Banner

A WEEK OF ACTIVITIES FOCUSING ON CSF LEAKS

What to expect this year.

With a little under three weeks to go, we wanted to tell you all a little bit more about what we have planned for Leak Week UK 2018.

While we don’t want to spoil the surprise and reveal everything in advance, look out for an active week on social media, brimming with facts, information and new resources. You’ll hear from a few new faces, and some old ones too!

As we’re an open organisation run by CSF leak sufferers for CSF leak sufferers, we’ll be announcing new ways to get involved and participate in the work that we’re doing. We’ll be providing an update on recent exciting progress made with our brand new Medical Advisory Committee. And much more.

We’re really excited about this year’s Leak Week. There’s going to be a lot going on from our side, but more than anything, we’d love to have you involved and helping raise awareness of cerebrospinal fluid leaks.

We appreciate that not everyone has the time or ability to help out regularly, but every little really does help and, collaboratively, we can made a huge difference.

Leak Week UK also coincides with global Rare Disease Day and, being a member of Rare Disease UK, we’ll also be linking in with a number of wider initiatives aimed at furthering awareness and care for all rare disease sufferers across the country.

You can keep up-to-date on what we’re up to during Leak Week at our main Leak Week 2018 webpage here: www.csfleak.info/leakweek2018

 

GET INVOLVED & PLAY A PART

Five simple ways to get involved in Leak Week

 

Facebook post get invovled v1

Click to download a full size copy for sharing.

 

SOCIAL MEDIA

Spread the word. Raise awareness.

If you’ve got a Facebook, Twitter or Instagram account, why not use the graphics below for your profile and banner images for the duration of Leak Week? It’s a great way to spread awareness and get the message across. Facebook shows you how to do that here.

Facebook Leak Week 2018 Profile Image

Click to download image. You can use it as a temporary profile picture in Facebook or Twitter. It’ll probably work with other social media platforms too.

 

Leak Week 2018 Featured Image Banner

Click to download image. This one is ideal for using as a Facebook profile banner.

If you’re posting and sharing on social media in the run up to and during Leak Week, be sure to use the following hashtags to help the message spread:

#LeakWeek     #CSFleak     #RareDiseaseDay

Map of CSF Leakers

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We’re pleased to annouce the publication of a new interactive map showing the location of CSF Leakers across the world.

You can access the map here: http://www.csfleak.info/interactive-global-map-of-csf-leaks

If you’re a site member, you can add your own pin here: http://www.csfleak.info/csf-leak-map-add-new-pin

If you’re not a site member, we’d really love to add a map pin for you. Please drop us a line with your leak type (e.g. spinal, cranial etc.) and your condition status (e.g. suspected leak, confirmed leak or healed leak) and we’ll get you on the map!

Journal Article: Dynamic CT Myelography

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A Technique for Localizing High-Flow Spinal Cerebrospinal Fluid Leaks

We’ve added an interesting journal article on the use of dynamic CT Myelography in locating the site of a high-flow cerebrospinal fluid (CSF) leak. You can download the article by clicking here.

Summary

In some patients with spontaneous spinal CSF leaks, leaks are numerous or tears are so large that extrathecal myelographic contrast material is seen at multiple levels during CT, making identification of their source impossible. This study introduces a dynamic CT myelographic technique that provides high temporal and spatial resolution. In this technical note, we describe the utility of this technique in four patients with challenging high-flow spinal CSF leaks.

 

 

New Factsheet: Example Medical Report for CT Myelogram

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Our latest CSFleak.info factsheet comprises an example of a medical report for CT Myelography and epidural blood patch carried out at Duke University Hospital by Dr Linda Leithe-Gray.

The patient is a UK national who travelled to the United States for investigatory procedures not commonly available on the NHS , yet shown through research to return a comparably high level of success in locating the site of CSF leak in comparison to Radionuclide Cisternography and conventional MRI.

It is hoped that this report, which outlines the specific procedures used regularly and successfully at Duke University Hospital, may inform and support doctors in their diagnosis and treatment of CSF Leaks in the UK. Our thanks and gratitude goes to the patient for allowing us to publish this information for the benefit of others.

You can download the factsheet by clicking here.

Headache secondary to intracranial hypotension

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Author Information

Schievink WI1, Deline CR.

1Department of Neurosurgery, Cedars-Sinai Medical Center, 127 South San Vicente Boulevard, Sixth Floor, A-6600, Los Angeles, CA, 90048, USA, schievinkw@cshs.org.

Abstract

Intracranial hypotension is known to occur as a result of spinal cerebrospinal fluid (CSF) leaking, which may be iatrogenic, traumatic, or spontaneous. Headache is usually, but not always, orthostatic. Spontaneous cases are recognized more readily than in previous decades as a result of a greater awareness of clinical presentations and typical cranial magnetic resonance imaging findings. An underlying disorder of connective tissue that predisposes to weakness of the dura is implicated in spontaneous spinal CSF leaks. CT, MR, and digital subtraction myelography are the imaging modalities of choice to identify spinal CSF leakage. Spinal imaging protocols continue to evolve with improved diagnostic sensitivity. Epidural blood patching is the most common initial intervention for those seeking medical attention, and may be repeated several times. Surgery is reserved for cases that fail to respond or relapse after simpler measures. While the prognosis is generally good with intervention, serious complications do occur. More research is needed to better understand the genetics and pathophysiology of dural weakness as well as physiologic compensatory mechanisms, to continue to refine imaging modalities and treatment approaches, and to evaluate short- and long-term clinical outcomes.

Access the full article here: http://www.ncbi.nlm.nih.gov/pubmed/25255993

 

Featured Blog: What is a CSF Leak?

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The following is an extract from a blog by Kirstin, a teacher in the USA, who suffered from a CSF Leak. You can read the full article, which goes onto explain symptoms and treatment, here: http://myfirstyearadventure.wordpress.com/2013/07

“So, I wasn’t running around sharing with everyone that I had this medical condition when it happened. My friends who were taking care of me knew, my co-workers knew, my family knew, and that’s about it. I was on the fence about really going into detail here, because really…I am doing much better! And I feel really lucky that it’s something that is healing, that it wasn’t something life threatening, and that I have been able to gain my quality of life back (knock-on-wood) in a relatively short amount of time.

But, this experience is going to be tied to how I approach my first year of teaching. It has changed how I value being able to have the ability to do my job, how I value my life, and the lessons I have learned will effect this little adventure I am embarking on.  Also, it IS a rare and largely unknown condition.  And if I can help raise some sort of awareness, in case someone out there has a similar headache that isn’t getting diagnosed correctly and is suffering ( doctors and friends/family suspected migraine, brain tumor, meningitis or aneurysm before the correct diagnosis appeared), they know about this possibility. This condition, while rare, is misdiagnosed and thus probably more common than we think.  And the misdiagnosis causes more problems, last pain, and financial cost than it should. In fact, I read a study that 0% of cases were diagnosed properly in the first visit to the E.R. WHA!!! And I read numerous stories about people having to fight for themselves at the doctor, that there WAS something wrong, and it wasn’t just “stress” or “anxiety” related. I feel lucky that I had a mom who heard about George Clooney (he’s a leaker! More about this in a later post.) and told me about leaks, a general practitioner who believed my symptoms didn’t add up, and a neurologist who was informed about CSF leaks!

So, what is it?

Well, we all have fluid floating around our brain and spine, that serves as a protective barrier for our thinking cap. And holding this fluid in is a relatively strong tissue called our dura, which is around our brain and spinal region. Well, apparently, my dura had a problem, and tore somewhere. This caused my cerebrospinal fluid to leak out. Which then, caused my headaches because my brain was sitting lower than it should be. Typically, people get these leaks after a spinal tap/lumber puncture, after some sort of trama, or an epidural. I had none of the above (although I have searched every moment of the weeks leading up to my symptoms for a reason…and so far…I did dance super hard two nights before. Could I have danced to the point of causing a leak? Of course I would!). Thus, mine is spontaneous, it just happened. I’m a lucky one!

Without going on and on….if you want more information…”

Keep reading: http://myfirstyearadventure.wordpress.com/2013/07

Travelling to the North Carolina for CSF Leak Treatment

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When deciding to travel to see one of the doctors in another part of the world, it makes sense to get organised, do research and look at doctors’ credentials in order to get the most out of your money and your treatment.  CSFleak.info contributor, Claire Hubbard, talks about her experiences of diagnosis and treatment in the USA.

View Claire’s article here: http://www.csfleak.info/living-with-a-csf-leak-and-intracranial-hypotension/sufferers/travelling-to-the-usa-for-treatment-dr-linda-gray

New CSF Leak Videos from Cedars-Sinai

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Check out the new series of CSF Leak videos, featuring Dr Wouter Schievink from Cedars-Sinai Hospital, California, one of the world’s foremost specialists in Cerebrospinal Fluid Leak diagnosis and treatment.

The videos can be found in our ‘About CSF Leaks’ section or by clicking here.