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CSF Leak Association Newsletter | Issue No.10 | Autumn 2018
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Message from the Trustees

 

Hello, <<First Name>>. 

Now that we are well and truly enveloped in ‘the season of mists and mellow fruitfulness’, we are pleased to welcome you to issue 10 of Leaker Life.
 
Another packed edition, with updates on the AGM, as well as detailed articles focusing on the Trustees, the MAC and ‘real life leaker life’. Fundraising updates are also aplenty – you have been very busy and creative out there in your bids to support the Association. We always love to hear your news and what you have been up to in order to spread the word and raise funds, so please do drop us a line and send your photos in.
 
Finally, included in this newsletter are several important dates and interesting events which may be of interest to you.
 
In the meantime, thank you for your ongoing support and interest in the CSF Leak Association.

Now, grab a cuppa and enjoy catching up on the latest news!


Polly Walker

Volunteer Newsletter Editor 

The CSF Leak Association has joined Medics for Rare Diseases, and we have completed their red flag survey.
The purpose of the survey is to establish what different rare diseases have in common during the time before diagnosis, a period often called ‘the diagnostic odyssey'. 

Included in this edition are several helpful ideas from leaker Sandie Moore. Find out more below >>
This year’s CSF Leak Association Annual General meeting (AGM) was held on 1 August 2018. The trustees’ annual report was presented and discussed, resolutions were proposed and passed and a new Board for the year ahead was elected. As with our Board meetings, we use Skype so that people are able to dial in from across the UK, irrespective of their mobility and health.
The meeting heard that it has been another very active and ground-breaking year for the CSF Leak Association, its trustees and volunteers alike. While our resources remain modest and much of the work carried out by our dedicated supporters is still commendably carried out alongside personal struggles with CSF leaks and associated conditions, we have made significant inroads in a number of priority areas.

We are particularly pleased that 2018 saw the establishment of our Medical Advisory Committee, which will play a vital role in our work to secure improved and consistent care and treatment options for CSF leak sufferers in the UK.  We also completed and adopted an ambitious plan of business for the years to come, which will help to focus and direct our work and ensure that key milestones continue to be met.

We were also delighted that the inaugural Leak Week UK was so well received and supported amongst the community, with our ‘Wear Blue Too’ campaign really taking off on social media. Raising awareness is vital for CSF leak advancement, and we’re happy to say that throughout the past year, CSF leaks also enjoyed improved and notable media coverage in the UK, online, in print, on the radio and on television; with one BBC news video featuring our current chair, David Baldwin, being viewed almost 100,000 times since publication.
Following the annual trustee elections, we once again saw some changes to the Board of Trustees, with two trustees – Polly Walker and Deborah Lunnon - stepping due to personal/health-related reasons. We’d like to thank both of them for their fantastic work over the months and years, and wish them well for the future. We’re also delighted that Clare Sargeant, who had been volunteering with us for a number of months, decided to take the plunge into trusteeship and also joined the Board at the AGM.
As things currently stand, the composition of the Board of Trustees for the period 2018-19 is as follows:
  • David Baldwin (Chairman)
  • Clare Sargeant (Secretary)
  • Pete Marnick (Treasurer)
  • Clare Joy
  • Tamsin Trevarthen
The CSF Leak Association can only function and do what it does due to the work of its dedicated group of trustees and volunteers. As our work expands and develops, so too does our need for more volunteers. We are always on the lookout for new people to join us and help with specific tasks or project or more generally, and we’re also keen to consider expressions of interest for the trusteeship and Board membership. If you think that volunteering with the CSF Leak Association may be for you, please drop us a line at volunteer@csfleak.info

The AGM itself not only provides an opportunity for members to hear about the work of the charity over the previous year, but it provides a forum in which members can discuss specific work and initiatives with trustees, raises questions and queries and contribute to the general governance of the organisation.

We pride ourselves on being an organisation run by and for its members and see our membership as being crucial to the work that we do. Unfortunately, however, AGM attendance was down on previous years and we also saw fewer proxy votes being submitted in advance of the meeting. We’re always keen to receive input and feedback from the CSF leak community and, as such, we’d love to find out if there is anything that we can do to help make the meeting more accessible so that more members are able to attend.

For example: Is the timing of the AGM convenient for you? Would weekends be better than midweek evenings? Is Skype a good platform to use, and if not, what other platforms may work better? Could we present the AGM papers differently to make them easier to digest? Is the proxy voting process too complex? Would submitting proxy votes online be easier?

We’d love to hear from you and get your thoughts and suggestions. Please drop us a line at:
office@csfleak.info

The tenth edition of Leaker Life sees Denise Moore share her leaker story with us. And what a story it is, for Denise suffers from both cranial and spinal leaks. Yet her approach remains positive and hopeful, and overall, supportive to other leakers. Thank you Denise for sharing your story.
 
"My CSF leak journey began nearly five years ago.  Prior to the first cranial leak, life was typical and moving swiftly. I was born and raised in Colorado with a love of the outdoors – grew up downhill skiing in the winter, playing soccer in the spring and fall and spending the summers at my family’s mountain cabin. As an adult, life still included downhill skiing and summers in the mountains plus working 40, 50 or 60 hours a week.  I was also busy with family, friends and typical home life. 
 
I was sitting at my desk one day in November 2013 and a drip, another drip, like a faucet, clear fluid was dripping from my left nostril. A phone call to my primary physician determined I had “allergies” and I was to start an over the counter medication to “clear it up”.  Five days later, I am in the local emergency room collecting clear fluid in a specimen cup, waiting for results of an MRI and CT Scan. Results are in, I had a spontaneous cranial CSF leak. Follow up with the neurosurgeon Monday to discuss surgery.
 
Little did I know, his surgery plan would consist of cutting along the scalp line ear to ear, pulling my face down to my eyes and opening my forehead to get to the bone defect.  I must have looked as if I was a deer in the headlights.  All I could think was Dear God, you are not doing that to me.  As we sat and talked, he decided that maybe a skull base ENT, one familiar with cranial CSF leaks, could get to the defect by going up through my nose.  It was decided we would consult with Dr. Edward Hepworth, an ENT located in Denver with success performing endoscopic cranial repairs.  I was never so relieved when Dr. Hepworth telephoned and said that he could in fact repair the defect endoscopically.  Repair # 1 followed a couple of weeks later. 
 
Silly me, I thought life would return to normal once again. Hey, I bounced back from cancer surgery and treatment a year prior. Why not a simple repair up my nose? What followed were months of debilitating high-pressure headaches.  The likes of which Diamox and methazolamide had no intention of touching.  The ensuing months include test, doctor’s appointments and various studies to decipher my new pressure issues. 
 
May 2014, I bent forward to only have another gush of fluid pour out my left nostril.  I waited patiently for Dr. Hepworth to tell me what I already knew, I had my second cranial leak.  Five pin holes above my left eye.  But before surgery, additional tests and scans were completed to make sure there wasn’t something physically wrong causing the high pressure such as a heart defect or venous stenosis.  With nothing noted as suspect repair #2 followed in August of 2014.
 
After surgery, unrelenting, unforgiving head pain/pressure returned.  Again, not to be touched by traditional medications.  An MRI in December 2014 showed the beginnings of a third cranial leak. Dr. Hepworth said “I am not patching you every six months, you need a VP shunt.”  I sat heartbroken while thoughts flooded in – thoughts that this illness was getting the best of me and life would never be the same again. 
 
In February 2015, my VP shunt was placed.  I awoke from surgery pain free for the first time in more than a year.  I never knew how much pain I was in until the pain was gone.  Finally, life could return to normal, or so I thought.  I eased back into life including a return to yoga and other activities. 
 
December 2015, I was once again complaining of low pressure headaches.  Based upon my history, Dr. Hepworth decided a 48-hour pledget study with cisternogram images at certain time intervals was necessary to find the cranial leak.  Results are in, surprisingly, no cranial leak.  But it doesn’t make sense, I am suffering with low pressure headaches. Adjustment of the shunt wasn’t possible as an increase in CSF causes tremendous intracranial pressure. So, a full spinal MRI series was ordered. 
 
The MRI revealed I have 30 perineural cysts (Tarlov Cysts) “up and down my spine”.  A referral was made to a neurologist who said “…it would be difficult to determine which, if any, cysts are leaking for a blood patch.”  As we know, most spinal leaks are difficult to see on images.  We discuss that, although there are local doctors who could do a blood patch, with the extensive number of cysts and no idea of where the leak is located, referral to Duke would be the best course of action. 
 
It was then I decided I just don’t have it in me to battle spinal leaks.  I have given all I had over the last two years fighting cranial leaks.  Opening this can of worms was just too much.  I would take time and try to live the best, “normal” life possible.
 
After a year, I could no longer take the increasing pain particularly the low-pressure or hypotension headaches feeling as if my brain is being pulled into my spine.  I was finding it way too hard to do anything physical with the hypotension, shoulder and mid-back pain.  Work was becoming an issue as I am missing more and more days.  Time with extended family and friends is becoming non-existent.
 
After consultation with a local Interventional Radiologist and Dr. Hepworth, referral to Dr. Schievink (Dr. S.) and Cedars Sinai was in order.  I figured a neurosurgeon would understand the complexities that has become my leak journey including two cranial leaks and VP shunt.  So, off to Cedars and Dr. S I went. 
 
Treatment at Cedars is scheduled for early May 2017.  Although the Cedars imaging doesn’t reveal any spinal leaks, Dr. S decides that based upon my symptoms a double patch in the thoracic and lumbar regions is appropriate.  The first patch consisted of 22 cc of blood between the two areas.  This patch was successful for roughly 24 hours.  Five days later, a second patch with 41 cc of blood between the two regions is completed.  Hallelujah! For the first time in years, I am completely pain free – head and spine. The blood patch had worked.
 
During my consultation with Dr. S I mentioned to him that I have been practicing yoga with a private instructor since my shunt was placed in 2015. I told him I really want to return to yoga after the blood patch. Dr. S said that if the patch didn’t work, I could start yoga in one month and if the patch worked make it two months.  I returned to yoga in July of 2017.
 
Shortly after my visit to Cedars, I followed up with my neurologist.  He has been treating my occipital neuralgia and other issues.  It is at this time he mentions a possible connective tissue disorder and Ehlers-Danlos Syndrome. A what and what? I had never heard these terms.  After much research and discussion, I have determined that a suspected EDS diagnosis is realistic.
 
In late July 2017, I was rear-ended sending my head, neck and spine forward and slamming back into the drivers’ seat.  Post concussive headaches followed – imaging shows the shunt is intact.  But I am back to dealing with frontal forehead pain, neck and back pain.  Physical therapy is ordered to help resolve some of the pain.  But, in November a sneeze brings fluid dripping out my nose and my third cranial leak is diagnosed.  Surgery in December 2017 reveals active leaks on both left and right sides of the ethmoid roof. To this date, I am sealed cranially and still battle with low pressure issues.
 
I am not quite finished with treatment for my spinal leaks.  I will either have another round of blood patching either here locally or at Cedars.  At a shunt setting of 80, I cycle into low pressure and suffer from brain sag or slump and at a shunt setting of 100, my frontal forehead pressure returns. I have found my recovery requires a very delicate balance within my system. It is my hope that this next blood patch does the trick and I am finally sealed.
 
I continue to see Dr. Hepworth and my other doctors.  I feel truly blessed to have an amazing group of doctors on my care team.  My CSF journey is comprised of a lot of little pieces, pieces I didn’t even know existed, and Dr. Hepworth has worked diligently helping me gather the pieces. 
 
Life today includes working full time, spending quality time with friends and family and daily interaction in the Facebook CSF groups.  Along with two amazing ladies, I administer two cranial leak groups.  I tell those in the CSF groups, both spinal and cranial, to be your own best advocate.  No one will fight harder for you than you. Educate yourself and be ready for a fight. Also, hold on to hope.  At the end of the day, all we leakers have is hope.  Hope that we find a doctor caring and knowledgeable enough to treat us and that the treatment works".

We wish to extend a huge thank you to Jonathan Skinner and friends, who have been extremely busy over recent weeks fundraising for the Association. 

Jonathan and colleagues collected donations at Currys PC World in Inverness on the 28th August. 
And if that wasn't enough, a few days later Jonathan then went on to participate in the 'Prime Four Beast Race' on the 1st September along the banks of Loch Ness. Described as a leg numbing 10km run through dense forest, undergrowth, heather and bog, on rough dirt tracks and of course, into Loch Ness itself.... and that's not mentioning the 30 mega obstacles, which included: 

THE MUD SUCKER Promised to suck the shoes off the runner's feet

THE LOONY DOOK For participants mad enough to wade out into icy Loch Ness to tap the marker buoy 

THE LETTERBOX In which runners posted themselves through a series of giant letterboxes

HIT THE WALL  There was no easy way over the 12ft vertical wall

BEAST BOG Required participants to drag their whole bodies through mud soup whilst being pinned down by a huge net

CHUTE A massive 100m water slide... 

Are you brave enough to give it a go next time to raise vital funds for the Association? For more information and pictures of the crazy obstacles, click
here 

Thank you Jonathan and pals. We hope you have been able to get rid of the mud by now! 

For the second year running, we also wish to express our gratitude to Neil MacDonald for heading up the Tractor Rally 2018 in Ross-Shire. The fun packed event took place on the 22nd September and raised over £800 for the Association. 

Thank you, Neil, and also to Ian Rhind for sharing his fabulous photos with us. 
RAREfest
 
It’s 2018 and rare diseases are still not being consistently diagnosed, treated and supported effectively. RAREfest is a first-of-its kind rare disease inspired festival conceived and brought to you by Cambridge Rare Disease Network (CRDN).  Free to attend, this 2-day festival will shine a light on some successes and innovative solutions that are striving to address this, and we will be there! RAREfest will raise awareness of rare conditions and bring together all stakeholders in the rare disease community alongside the general public from across Cambridgeshire and beyond. We are proud to be supporting RAREfest. For more information please visit 
http://camraredisease.org/rarefest/
Headache Academy Course
 
Clare Joy and Clare Sargeant will be attending the Headache Academy Course on October 13th and 14th in London, manning a stand for the delegates to come and seek further info. It's aimed at 
  • Specialist Registrars, Associate Specialists and Staff Grades in Neurology
  • Specialist Registrars in Paediatrics, Emergency Medicine and General Practice
  • Headache Specialist Nurses
Further details available at https://www.headacheacademy.com/  CSF leak headaches  will be covered under a talk on secondary headaches as well as there being a dedicated case presentation.
Symposium
 
The Second Annual Cedars-Sinai Intracranial Hypotension Symposium will be hosted once again by Cedars-Sinai in partnership with Spinal CSF Leak Foundation on October 13, 2018.
 

This full-day multidisciplinary symposium on the topic of Intracranial Hypotension secondary to spinal cerebrospinal fluid (CSF) leak brings together top clinicians and researchers to share the latest advances in the diagnostic evaluation and treatment of this under-diagnosed, disabling but treatable secondary headache disorder.

Clinicians, researchers, patients and caregivers are invited to attend.

The symposium offers a professional track and a patient/caregiver track and concludes with an interactive shared session. Invited speakers include representatives from a range of subspecialties, including anesthesiology, neurology, neurosurgery, neuroradiology and pain management.

The professional track will cover current aspects of clinical presentations, objective measurements, differential diagnoses, complications, diagnostic imaging, percutaneous interventions and surgical approaches.

The patient/caregiver track will provide an overview and update on the diagnosis and treatment of intracranial hypotension and rebound intracranial hypertension.

Patients will be empowered in improving outcomes and quality of life as well as understanding the patient role in clinical research.

An interactive shared session will discuss the challenges and approaches for patients with residual post-treatment headache. There is an urgent need to improve access to appropriate diagnostics and treatments to reduce the burden of suffering for intracranial hypotension patients.

TARGET AUDIENCE This conference is designed to meet the needs of neurologists, neurosurgeons, anesthesiologists, neuroradiologists, pain management physicians, and other clinicians who treat patients with this diagnosis as well as patients and caregivers interested in gaining more knowledge on this disorder.

More information can be found at: 
 

https://spinalcsfleak.org/symposium/symposium-2018/
Sandie Moore, Physiotherapist and CSF Leaker, has kindly shared some of her life hacks with us for this edition of Leaker Life. 
 
A CSF Leak Survivors Guide
 
Polly asked me to write about a few of the gadgets and techniques that have made living with a CSF leak bearable. Having written all these survival tips I see that I am a teensy bit goal and gadget driven, but these things have kept me sane and let’s face it I have not been spending much on going out partying! I have given links on Amazon, but obviously you can purchase them from other suppliers. I hope you may find some of them helpful in getting you through.
 
Prism glasses are my number one suggestion – they enable you to lay completely flat and read, watch TV or use a laptop perched on a lap tray. If you use varifocals I find they are fine with the prism glasses for TV watching. However, I could see better if I used a middle distance, off the shelf pair of glasses instead for work on the laptop. Click here for link. 
I am able to swim, but appreciate that this is not advisable for all leakers – it is very dependant on the cause and location of the leak, and it's really important you liaise with your doctor or consultant about whether it is safe for you.

If, like me, you find swimming very dull, purchase a Finis Duo underwater MP3 player – you download songs from I-tunes after first converting them from MP4 to MP3 format. If you buy one from Amazon it may come with a faulty charger cradle, but it is the cheapest place to buy it. You just contact Finis and they send you a new charger cradle for free (they redesigned them, but Amazon have obviously got an old batch). You use wax earplugs and a swimming hat with it, to seal off your ears. The sound is played by vibrations through your cheek bones - amazing. I don’t like earplugs in my ears, so it suits me. There are other underwater MP3 players that work via earplugs. One thing I would say if you get the Finis Duo is to dry it properly after each use and occasionally soak it in descaler, as scale builds up on the charging pins and stops it connecting with your PC. (it says on the website use alcohol, but that doesn’t work). People in the pool actually say to me ‘don’t you find it relaxing just swimming up and down and thinking your own thoughts? Do you really need music?’ (quite outspoken I know) Answer  - obviously my own thoughts are not as interesting as yours. The link is
here.
 
I also use a snorkel, noseclip and swimming goggles. You would have to check with your pool if this is allowed.
 
www. audible.co.uk do up to date and back catalogue audio books, often with famous people reading them. You take out a subscription for one or two a month to suit you and it is the same price as buying a paperback. I found that although very active in my up time, because you have to lie down more than is normal, I am not that tired at night. Not being able to sleep drives you a bit crazy, so I listen to these audiobooks. I use a Roberts Pillow Speaker that goes under the pillow, so that I don’t wake my husband. The link is here.

If I am stressed I have found breathing exercises have helped me to keep calm, because lets face it, having a leak is deeply frustrating. Breathing exercises stimulate the Parasympathetic nervous system, which is the opposite one to the Sympathetic nervous system that causes your fight or flight reactions. When the Parasympathetic nervous system is stimulated, the body gets the message – ah I am safe in my cave, I can relax. I like the Fitbit Charge 2 because it has the relaxation breathing programme on it. It also records your steps and swims, so helps with fitness. Some of the other Fitbit models may have the relaxation programme on them and they are cheaper, but I got this particular one because it records the swimming.
 
I am lucky, as I have been able to organise my work into my six hours of up time and that keeps me sane. I used to only be able to be up for 15 minutes at a time, so I have come a very long way. I was a highly motivated, type A person before all this started, but I have found that just tackling each day as it comes and not allowing my mind to wander into the ‘what if’… is the secret to staving off the blues, whilst you wait to get fixed. Let people help you as well – I was extremely independent before all this happened. If you have a cracking headache and feel sick, get someone to pick up your children for you. I have just had an epidural blood patch and am hoping this could be the end of the leak at last, but some good has definitely come of having to slow down – not a single bee is going to fly past me now without being fully appreciated and admired. Also I realise how brilliant my long suffering friends and family are – they will not allow me to be down.

By Sandie Moore

Raise awareness globally


If you're active on social media, why not check out our Twitter feed and Facebook page? We publish regular updates, news, articles and announcements about CSF leaks and related conditions.  If you wish to post your own content on social media about CSF leaks, why not use the following #hashtags in order to maximise exposure and secure awareness across the globe?
#CSFleak   #SpinalCSFleak   #headache  #IntracranialHypotension  #LeakerLife  #uprightheadache
Did you know that during Leak Week we launched our Instagram account? Head over and follow us - and link your photos and images with the hashtags - which you can also follow on Instagram! 
 
Health-related terminology can be confusing at times, particularly to those without a medical background, with limited experience dealing with doctors or hospitals or who are new to a particular condition or illness.
 
We have prepared an alphabetical list of some of the most commonly used CSF Leak terminology on our website. Below is some of the terminology that start with R through to Z. 

 

Radionuclide Cisternography

Radionuclide cisternography is an imaging technique which involves injecting a radionuclide by lumbar puncture into a patient’s cerebral spinal fluid (CSF). It is used to determine if there is abnormal CSF flow within the brain and spinal canal and may also evaluate a suspected leak (also known as a CSF fistula).
 

Sacrum

The sacrum is a large, triangular bone at the base of the spine and at the upper, back part of the pelvic cavity, where it is inserted like a wedge between the two hip bones. Its upper part connects with the last lumbar vertebra, and its lower part with the coccyx.
 

Spinal Canal

The spinal canal (or vertebral canal or spinal cavity) is the space in vertebrae through which the spinal cord passes.
 

Spinal Cord

The spinal cord is a long, thin, tubular bundle of nervous tissue and support cells that extends from the brain. The brain and spinal cord together make up the central nervous system. The spinal cord begins at the occipital bone and extends down to the space between the first and second lumbar vertebrae; it does not extend the entire length of the vertebral column, normally terminating around the top of the lumbar spine. The spinal cord is housed within the meninges and is bathed by the cerebrospinal fluid.
 

Spinal Tap

See ‘lumbar puncture’.

Subarachnoid Space

The subarachnoid space (sometimes known as the subarachnoid cavity) is the anatomic space between the arachnoid membrane and pia mater. It is occupied by spongy tissue consisting and intercommunicating channels in which the cerebrospinal fluid is contained and circulates.

Thecal Sack

The thecal sac is a membrane of the dura mater that surrounds the spinal cord and the cauda equina. This thecal sac is filled with cerebrospinal fluid.

Thoracic

The thoracic vertebrae comprise the middle segment of the spine, between the cervical vertebrae and the lumbar vertebrae. There are twelve thoracic vertebrae and they are intermediate in size between the cervical and lumbar vertebrae; they increase in size going towards the lumbar vertebrae, with the lower ones being a lot larger than the upper.

By convention, the human thoracic vertebrae are numbered T1-T12, with the first one (T1) located closest to the skull and the others going down the spine towards the lumbar region. The thoracic region is thought to be the most common area in the spine for the occurrence of CSF leaks.

Ventricles / Ventricular System

The ventricular system is a set of four structures, the ventricles, containing cerebrospinal fluid (CSF) in the brain. It is continuous with the central canal of spinal cord. The ventricles are interconnected, allowing the flow of cerebrospinal fluid. CSF is produced by the ependymal cells in the choroid plexus, a network of these cells within each of the ventricles.
 





You can view our full A to Z of terminology on our website, or download it in PDF format by clicking here. 
 

 
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The CSF Leak Association is a member of the Scottish Council for Voluntary Organisations.
Copyright © 2018 CSF Leak Association, All rights reserved.
A Scottish Charitable Incorporated Organisation (Charity No. SC046319).



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