Healthcare Professional Survey 2021

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HCP Survey v2 2021

Our Healthcare Professional Survey 2021 is designed to assess clinicians’ knowledge and practice in the diagnosis and management of Spontaneous Intracranial Hypotension (SIH) caused by spinal cerebrospinal fluid (CSF) leak. The survey will be used to inform the development of national consensus guidelines for non-experts on the investigation and management of SIH.

This is a uncommon condition, so we expect participants will not have expertise in this area, and knowledge of SIH is not required to complete the questionnaire. All questions should be answered independently and based on current knowledge, without discussion with others or reference to literature. Responses will be anonymous.

Before proceeding please check the following:

  • You currently work in the UK healthcare system.
  • You work in one of the following specialities: neurology, radiology, neurosurgery, spinal surgery, anaesthetics, general practice, emergency medicine, headache specialist nursing.

If either of these don’t apply to you, please do not proceed with the survey.

Completion of the survey takes about 10 minutes. You can take a break at any point, save your responses and return to answer more questions later.

Extended response deadline: The survey will remain open until midnight on 22 August 2021.

Thank you for choosing to participate in this survey and supporting our charitable aims.

If you have any questions regarding the survey please contact:  SIHgroup.admin@csfleak.info

Data Protection

We won’t store any contact details and all data submitted in response to the survey will be stored, handled and processed in strict accordance with our data protection policies and provisions of GDPR. If you would like to discuss any aspect of how your data may be used or handled, or view a full copy of our data protection policy, please contact: dataprotection@csfleak.info

CSF Leak Patient Survey March 2021

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CSF-Leak-Patient-Survey-2021

The CSF Leak Association is currently working with a multi-disciplinary group of clinicians who are committed to the development of a national consensus guideline for the clinical management of Spontaneous Intracranial hypotension (SIH) to improve and standardise spinal CSF Leak patient care throughout the UK.

Patient involvement is an essential part of guideline development and with that in mind we are conducting an on-line survey  during March 2021 to learn more about your personal experience of the diagnosis, treatment and management of SIH.

To find out more about the survey or to take part in it, please click here: www.csfleak.info/patientsurvey2021

Website User Survey 2021

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Our current website has had over 1 million viewers and visitor numbers continue to grow. It’s been a great resource since it first went online in 2014 and has contributed significantly to the availability of quality CSF leak information to patients across the UK and beyond.

As our work continues to progress and expand, we need to make sure the website is fit for the future and able to continue to serve us all. We really need your help to do this. We would love to get your feedback on the existing site and what you’d like to see on the new one.

Please take part in the short survey by clicking the following link: www.csfleak.info/websiteusersurvey

The more input we get, the better we can make our new home on the internet!

The deadline for submissions is or or before the 19th February 2020.

CSF Leaks at the London Marathon 2020

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CSF Leaks at the London Marathon 2020We are absolutely thrilled to announce that the CSF Leak Association has been allocated a place and will be running the world famous London Marathon in 2020.

This is a wonderful opportunity at a global event to bring attention to cerebrospinal fluid leaks, focus the spotlight on our cause and raise much-needed funds.

Representing us on this challenge will be seasoned runner, Claire Secker, whose husband, Russell, experienced a CSF leak in 2019. Both he and Claire have got stuck in with the charity and are determined to use their experiences and skills to help others.

Claire Secker is running the London Marathon 2020 for the CSF Leak Association

Claire Secker is running the London Marathon 2020 for the CSF Leak Association

Here’s Russell talking a little about his journey:

“Prior to May 2019, I was suffering from a severe CSF Leak. I developed frontotemporal dementia, and was descending into madness. My wife Claire cared for me as I became less and less able to function, advocated for me to the medical profession, and found a brilliant neurosurgeon in Los Angeles who operated on my spine and fixed my leak. Dr Schievink And his team saved my life.

When we had our discharge meeting with Dr Schievink a week after my surgery in May 2019, he told us that most CSF Leak “survivors” don’t stay involved with the leaker community once their illness has been fixed. We both told him that going forward we wanted to help to support sufferers and help to educate the medical profession in the UK.”

This is a wonderful opportunity for the CSF leak community and we’re determined to capitalise on it to the max. Please help us to raise awareness of CSF leaks and spread the word by supporting Claire today.

We hope that you will tell all of your friends and family and share the fundraising page far and wide. Whilst daily living is a marathon in itself for a great many CSF leak sufferers, we can be there in spirit with Claire, willing her along!

Send Claire and Russell a message of support, spread the word and help raise vital funds for CSF leaks here: https://uk.virginmoneygiving.com/ClaireSecker1

London Marathon Route Map

#CSFleaks #SpinalCSFleak #IntracranialHypotension #LondonMarathon #LondonMarathon2020

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.

 

 

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

 

New CSF Leak Journal Articles

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We’ve added three additional journal articles to our downloads section.

Two articles about the use of gadolinium in CSF Leak detection:

One review paper by Dr Wouter Schievink of Cedars-Sinai Hospital, California:

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