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.

CSF Leak Story: No doctor could diagnose my strange affliction – so I did it myself

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This article featured in Toronto Life on 18 September 2014

By Mireille Silcoff | Illustration by Cat Yelizarov
Memoir: My Strange Affliction

In my late 20s, I became crippled with debilitating dizziness and headaches. I visited eight doctors—and no one could figure out what was wrong with me.

A decade ago, I lived in a beautiful apartment near Avenue Road and Davenport, an elegant one-bedroom that contained most of the frothed-up dramas of my highly decorative 20s. I did up my living room in blue Albrizzi lacquer, with a deep feather loveseat upholstered in fuchsia velvet. It was honeytrap decor: my place wasn’t so much a party apartment as an after-party apartment. I filled my fridge with prosecco and my medicine cabinet with designer drugs and my closet with $1,000 dresses I had no business buying. I spent most nights waiting for a guy who usually called at midnight.

I would lie on my sofa, with my hair done, smoking, tingling. I would sit in front of my computer, drinking, vibrating. If he didn’t call by 12:30, I would fall asleep on my stomach, so as not to squash my hair. In the morning, clumps of hair would come out in the shower, as if shearing the plane for another day of hope surging up and dying on its stem. I was dizzy all the time.memoir-my-strange-affliction

At first, I thought I was just sick with longing. Then one night, sitting by the non-ringing phone, it suddenly felt like my hands and feet were covered in pins and needles. I walked to the emergency ward at Mount Sinai.

In the pantheon of medical symptoms, there are those that doctors will immediately mark as stress-related, and thus lightweight—don’t complain of dizziness, or ringing ears, or headaches, or vertigo. If you are an overworked, nerve-wracked, single Jewish newspaper editor kitted out for a bad affair, walking into emergency at 1 a.m., you’ve got your cultural profile working against you. The ER doctor told me to take a holiday. Try some yoga.

I saw eight doctors in Toronto. One said I might have an inner ear issue. Another thought I was hyperventilating without knowing it. A third put me on steroids. Most agreed my symptoms were “stress-related.” Incredibly, nobody looked at my brain.

Over the next few months, I left my apartment only for medical appointments. I spent the rest of my time helplessly supine, feeling like the top of my head was being torn off with nautical rope. Every waking moment I could keep my head up I spent in front of my iMac, trolling through obscure neurological journals, reading papers I could barely understand. I narrowed it down to the most likely illnesses—multiple ­sclerosis or a brain tumour—but neither seemed right.

One day, I found a syndrome called spontaneous ­cerebrospinal fluid leaks, something so rare most neurologists have never seen a patient with it. I read the symptoms and a huge flashing YES lit up behind my eyes—I knew I had found my illness. It wasn’t anxiety. It was faulty tissue. The sheath of my spinal cord, the dura, was tearing, and my spinal fluid was leaking out, sapping my brain of its natural waterbed, the thing that kept my grey matter from sinking into the occipital bone.

The first doctor to properly check the pressure of my spinal cord found it to be about a third of what it should be. The next few days were blurry and dreamlike. My family came in from Montreal and whisked me back there for treatment. Everything I knew in life blew away like fairy dust. I underwent 14 spinal cord procedures over two years, and they all failed. First, doctors in Montreal sprayed patches of my blood onto parts of my spinal cord, ­hoping the resulting clots would patch the holes. When those didn’t work, doctors at the Mayo Clinic in Minnesota used surgical glue to staunch the leaks. For days at a time, catheters injected saline into my spinal cord, a feeling so ­nightmarish I developed a phobia of needles.

Six months later, I flew to L.A. to see yet another surgeon, who planned to staple my spinal cord back together. The anesthesiologist, a Latino man with a thicket of black curls who had conducted some exploratory tests, called me at my hotel the night before the surgery. “Don’t do it,” he said. “Listen to me. I have felt your spinal cord. Imagine ­stapling wet Kleenex. Your dura is like that. You must simply stop moving. You must see if nature will knit you back together.”

I took his advice, cancelled the surgery and tried to let myself heal. I spent the next 18 months in a declined bed, my head lower than my chest, to give my brain the suspension it no longer had naturally. I wore a corset to keep to keep my torso bound and my spine squeezed tight. For two years after that, I was wheelchair-bound, not knowing whether I would walk again. Death was always near, an aneurysm just a sneeze or a bad pothole away.

By my late 30s, my long-standing leaks began closing up on their own, and life was slowly returned to me. I carefully, incrementally, went back to work, got married and, two years ago, my husband and I had a daughter; I am currently pregnant, at 41, with our second baby. I do have relapses. I disappear into my home, into the pain, and come back to the world a month or two later, with the rawness of a recluse returned to sunlight, but also the strange clarity that deep illness can provide. I now live with new caveats, things I tell myself regularly: don’t get too cocky; illness is always right around the corner for you. Don’t you dare waste your life—that’s not your kind of freedom.

Read the original article here: http://www.torontolife.com/informer/columns/2014/09/18/memoir-mireille-silcoff-my-strange-affliction