The CSF Leak Association is now open for membership!

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We are absolutely thrilled to announce that, after months of hard work by our dedicated band of volunteers, the CSF Leak Association is now open for membership.

As a small charity with big ambitions, our aim is to provide information and support to all sufferers of cerebrospinal fluid (CSF) leaks, their family, friends and medical advisers, as well as securing clear and consistent patient pathways for the diagnosis and treatment of CSF leaks.

csf-leak-association-membershipAs a membership organisation, we rely heavily on the fantastic support and generous encouragement of our supporters in the work that we do. Without this dedicated help, we could not function and would be unable to continue to raise awareness of cerebrospinal fluid leaks and push for positive change.

Whether you’re an individual or an organisation, based in the UK or further afield, if you share our aims and objectives and benefit from the work that we do, why not join us and get involved?

You can join us online or by post. Find out more here: www.csfleak.info/membership

CSF Leak Android App

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Calling all Android Mobile Phone and Tablet owners!

We are delighted to announce the release of our brand new Android app for CSF leakers. It’s absolutely free and available to download from the Google Play store.csf-leak-association-android-app-advert

The app provides easy access to key information and resources about CSF leaks, all at the click of a button or tap on a screen!

You can access information about cranial and spinal CSF leaks, and view a list of must-read medical journal articles, all off-line; ideal for use during an appointment with your doctor or when explaining things to friends and family.

View our global map of CSF leakers and add/edit a pin for yourself, search for doctors with some CSF leak experience near you (aimed at EU residents), or bring up a copy of our medical accommodations cards whenever you need it.

android-app-screenshotThe app is brand new and is being updated regularly with new content, so please make sure that you select its ‘auto update content’ setting. If you have any ideas or suggestions for the app, please drop us a line.

To get a copy of the app, search for ‘CSF Leak’ in the Google Play app store, or point your device’s browser to: www.tinyurl.com/csfleakapp

NB. If you already have a map pin on our Global CSF Leaker Map, please go to the pin via the mobile app, make a note of the number in the pop-up window (e.g. #250) and email us at webmaster@csfleak.info with your Android account email address; this will enable us to link your pin with your CSF Leak Companion App.

CSF Leak Association Shop & Merchandise

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We are very pleased to announce that the CSF Leak Association, in partnership with Teemill, now has an online shop, where you can buy a range of CSF Leak Association-branded clothing and gifts.

Unlike many similar bespoke online clothing platforms, Teemill is located in the UK, printing is carried out in the UK, and items ship from the UK, all within a matter of days. Teemill also ships internationally at very reasonable rates. The quality of the garments is all very good, and production is ethical, low carbon and organic.

For every item sold, the CSF Leak Association will receive a proportion of the profit to go towards the work that we are doing to support sufferers and progress our aims. As an example, for every t-shirt sold at £19, £4.50 will come to the Association; so you help raise the profile of CSF leaks and help us fundraise at the same time!

To visit our online shop, please click on ‘shop’ in the main menu, or click here: www.csfleak.info/shop

 

The Kilt Ride 2016

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Kilt Ride Flyer

The time has flown by and the Kilt Ride 2016 – the world’s first ever large-scale awareness and fundraising event for cerebrospinal fluid (CSF) leaks – is almost upon us. This fantastic two-day event, organised by Ray Michael for Saturday 28th and Sunday 29th May 2016, will see up to 100 tartan-clad bikers travel around Scotland, from the Borders to the Highlands, in support of CSF leaks.

The convoy will depart the Leadburn Inn, Midlothian, at 09:00 to the sound of bagpipes and the taste of bacon butties, making its way to the second rendezvous point at Tesco Extra Perth, Edinburgh Road for 11:30. Thereafter, it will make its way through Fife, Perthshire through the Spittal of Glensheeand and into the Cairngorms. The overnight  stop will be at Dores, on the banks of Loch Ness, before travelling back south the following day, via Glen Coe and Bannockburn.

We are sure that the event will be a roaring success and would like to thank Ray for his dedication and support, and for all of the hard work that he has put in over the past 6 months to make it a reality. We would also like to thank The Dores Inn, the Leadburn Inn, Saltire Motorcycles and Alba Customs for supporting the event. Event t-shirts and raffle tickets (with some fantastic biker-related prizes) will be available to buy at the Dores Inn on the Saturday evening.

If you would like to view more information on the event itself, please visit the dedicated Facebook page.

If you would like to support the event with a donation, you can do so via the event page, by visiting our donations portal on TotalGiving or, if you have a UK mobile phone, by texting: LEAK00 £5 to 70070.

Upcoming Fundraising Events

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We’re delighted to announce that Kate Hubbard and Ray Michael are organising fundraising events for CSF Leaks.

Kate and friends are doing a gruelling Tough Mudder to raise funds for the CSF Leak Association. You can find out more information here: www.totalgiving.co.uk/mypage/csfleaktoughmudder

Ray has organised an epic motorbike tour round Scotland to raise funds and awareness for CSF leaks. You can find out more about his event here: www.facebook.com/events/177698689248034

Best of luck to all involved and many thanks for all of your hard work and support.

Living with Intracranial Hypotension: Claire Hubbard’s Story

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Before becoming poorly in Dec 2009, I was a happily married, fit and healthy 43 year old with 2 teenage daughters. I collapsed one day for no reason and had not been right since. I would blank out and collapse in a headache attack after being upright too long, resulting in many visits to A&E. After suffering for nearly four years and almost every test you can imagine showing nothing, last July 2013 we decided that enough was enough and to take the bull by the horns and do something once and for all. Final decision. It turned out that was the best decision we had made.

I had been diagnosed with POTs in 2012 but felt it was not quite the right diagnosis for the sort of symptoms I was feeling. I had not got the tachycardia or dizziness many people with POTs have and my heart rate only just increased to the POTs threshold of 30 beats per minute when I stood up. I did have low blood pressure and had spent most of 2010 lying flat, which could have prompted the POTs like symptoms. I also had a daily headache, but mine was ongoing – 24 hours a day, every day. It was lessened in the morning but gradually got worse as the day progressed.

Every day I spasmed or jerked if I was upright too long or did too much. I would have to sleep every day for an hour at lunchtime in a completely flat position just to be able to continue with anything in the afternoon. If I did not, my head pain would simply increase till I had to lie down and spasm or jerk in pain.

My turning point was to pay privately for one consultation with a neurologist at my local hospital. We had to persuade my GP for the referral, as I knew it was my last chance and he said I had seen enough people. But, my new neurologist listened…

He was very interested in my symptoms and sent me for a series of tests – some of which I’d had before. All came back negative for a CSF leak. I would tell anyone who thinks they are leaking to persevere with doctors, as, if they can’t see a leak, they will say you haven’t got one, even if it is a slow leak and not likely to be seen.

I did my research. I read Dr. Schievink’s Question and Answers and highlighted anything that referred to myself. I even went on a POTs medication trial for a fortnight whilst in hospital to see if that would help. Once we had exhausted all the doctors’ ideas, including many of the anti-seizure medications, (all of which made my symptoms worse).

In February 2014, I lifted a heavy weight and carried it some distance, feeling that something had gone wrong as the pressure in my head suddenly grew. I went home and 36 hours later I could not get up at all without severe pain. It took 2 days to get hold of anyone who would help me and I was prescribed phyllocontin as it is a form of theophylline that increases csf. I was up again in 36 hours, but after taking the medication for 3 weeks and got gradually worse and worse until I was having repeated painful non-epileptic seizures – as in 8-11 in a row. I ended up in hospital where they did not know what to do with me. I was seizing at first 3-5 times a day, reducing to three times a day later on. Every day was the same and it was awful. I persuaded the UK doctors to try a scan that I hadn’t had after emailing Dr Linda Gray in North Carolina, USA. I had already had contact with her as I had asked for a quote to see how much money I needed to raise in order to get a second opinion. I asked her what she would do for me that the UK doctors may be able to do.

She said she would scan me and look for any potential leak sites. The scanner she uses is a DSM scanner and my hospital had not got one, but as it is a fairly newly built hospital building, they had the latest MRI scanners up to 3 tesla. Many MRI scanners are 1 – 2 tesla so I knew this scanner would be as good as a DSM scanner (hopefully). The test she recommended was a fat saturated MRI myelogram, using intrathecal gadolinium. My neurologist immediately said it must be done and went to organise it. And this is where it gets tricky. It was proposing to use gadolinium off license and so had to go through 3 weeks of protocol and paper work. I was desperate for help.

Eventually the test came. The way it was organised was to do 3 MRIs, one before the gadolinium was introduced and two after. Each MRI lasted 70 minutes. We split it up so the first one was done on one day and the next two on the next day, as it was a long time to stay absolutely still. This was completed Friday afternoon about 6pm. I would be lying if I said it was not hard work. To stay still in the noisy MRI for that long is difficult, but I knew I must do it if I wanted any chance of any leaks to be found.

The next day I was told the test showed nothing. I was surprised as it was the morning and I was trying to work out who had looked at them in so much detail to ascertain that information in such a short space of time.

So, the next step for me was to get a copy of the scans, to get a second opinion. Again, this isn’t easy. You have to apply to the ministries department at our hospital and pay £50 for your written records and scans. As an inpatient, the scans were not allowed to be released. I had to fight for this by asking the Chief Executive of the hospital to intervene, as my neurologist was more than happy to get the second opinion from the States. This took a while but they did arrive.

I have a friend who was able to take the discs and link them as a hyperlink to his Drop box account. This enabled me to simply email Dr Gray in USA with the link and password. I was the go between for my neurologist and Dr Gray for many days. At first she couldn’t open them, then she could. Then she sent the email that made me take a huge sigh – she could see potential leak sites and could name some of them. She wanted to see the most recent scan too as she couldn’t open them. This took a while with instructions and print screen images of how to find what she wanted. She advised my neurologist to do a full volume patch at the cervico-lumbar and then mid-thoracic region.

When I discussed this with my radiologist, he said the areas were too wide for him to think I could get any gain. I asked Dr Gray for yet more information. I offered to pay for her services all along, yet she would not accept anything. She replied with a comment of doing the same as before but adding a lumbar region patch too, as the UK would probably not be able to do CT fluoroscopic targeted blood patches at any diverticula that could be a problem and that she would look at me when I could get over there.

My radiologist took my scans home for the weekend and then on Monday, he gave me the choice. Three large blood patches or many targeted ones – he said that they could do that but with blood, not fibrin glue. The latter would be more painful and take longer. I decided to go for the targeted ones, as that is what Dr Gray would do in the USA.

It was not an easy procedure. I was asked if I would be able to lie absolutely still for it. As it was in the morning I felt confident I wouldn’t seizure as any seizure activity had started developing in the afternoon. After the lumbar puncture and injection of dye, I was asked to roll 15 times lengthways on the bed to mix the dye with the csf fluid. This is easier said than done. After that I lay on my front on the CT scanner and was asked not to move at all whilst being scanned and whilst the needles and then blood was inserted.

This is really important. If you move, the blood patches will not go to the targeted areas and will be useless. I had numerous needles put all down my back, from my shoulder blades to my lower back. Most of these were in pairs but some were single. The needles were inserted after an initial local anaesthetic on each one. My radiologist was meticulous to keep them in the exact right place. Sometimes a nerve was touched or tickled, but I still was not allowed to move. When all the needles were in place, the blood was syringed out of my arm and into the needles, about 5cc at a time. A lot of that ran out and down my sides! Some of the inserted blood was quite painful.

After each needle was filled, they were all removed and it was over. I lay head down in a gentle tilt for 2-3 hours before I sat up and ate my tea, feeling much better. I did not spasm, jerk or seizure from that moment onwards.

I am now at home, at the moment, 2 weeks in and symptom free. Totally. I’m no longer noise, light and smell hypersensitive. I can stay upright all day if I want to and can drive. I feel free and released. I know I’m not healed yet and so need to take it easy. I am planning to see Dr Gray in North Carolina as my neurologist thinks it would be a good idea to get a second opinion and maybe fibrin glue patching. I’m planning to go out in about a month’s time.

If you want any recent updates, please see my blog on: www.lucyhubblog.wordpress.com

Claire Hubbard

Headache Journal: Spontaneous Cerebrospinal Fluid (CSF) Leaks

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Spontaneous cerebrospinal fluid (CSF) leaks typically present with orthostatic headaches. Less commonly, spontaneous CSF leaks can present with other headache types. Nausea, vomiting, hearing disturbances, diplopia, back pain, and dizziness are not uncommon associated symptoms. Although the exact cause of CSF leaks often remains uncertain, some patients may be predisposed due to disorders of connective tissue or spinal meningeal anomalies.

When a spontaneous CSF leak is suspected, head MRI with contrast is ordinarily the first study to obtain. Common abnormalities seen include diffuse dural enhancement, subdural fluid collections, engorged cerebral venous sinuses, and cerebral descent. Important to know is the fact that despite typical clinical features, head MRI may occasionally be unremarkable. In such situations, ancillary studies may help answer whether a CSF leak is present. Radioisotope cisternography and spine MRI are helpful tools in such occurrences. Presently, CT-myelography remains the most reliable test to find the exact spinal CSF leak site. Often, however, the exact CSF leak site is not found.

Read the full article here: http://www.headachejournal.org/view/0/CSFLeaks.html

Health: How spinal condition lead to crippling headaches

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Struggling off the bus in agony, Deborah Ogg barely knew what was happening.

She had never suffered from headaches, but suddenly she was in such excruciating pain that she had to lie down in the street, utterly overwhelmed.

Her worried partner Peter looked on, helpless, and even the taxi driver he summoned offered to take them straight to hospital. But Deborah, 40, hating to make a fuss, insisted on going home to bed.

“I felt like somebody had hit me over the head with an iron bar,” she recalls, “It was massive pain.”

The pharmacist recommended migraine pills, but they didn’t help. “I tried getting up to go to the toilet but as soon as I got up the pain was even worse and I was on my knees, I just crumpled,” she says.

It was April 1 last year, and the start of a long and painful journey with what she eventually discovered was a rare condition called cerebrospinal fluid (CSF) leak.

Affecting around one person in 50,000, it occurs when the fluid, which cushions the brain and spine, leaks out through a hole in its protective sac. This results in a drop in pressure, so that the brain can no longer float in fluid.

The brain cannot feel pain, but the resulting “brain sag” pulls on tendons and muscles across the head, causing extreme pain, which is slightly relieved when sufferers lie down.

It is most common after epidurals or spinal operations, but in some cases, such as Deborah’s, occurs spontaneously, which makes treatment harder, because the location of the leak is not known.

Read the full article here: http://www.edinburghnews.scotsman.com/news/health/health-how-spinal-condition-lead-to-crippling-headaches-1-2150059

Edinburgh Evening News: GEORGE CLOONEY CSF LEAK PAIN

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PAIN DROVE CLOONEY TO CONSIDER SUICIDE

One of Holywood’s biggest stars, George Clooney, has also spoken of his struggle with it, admitting the pain was so excruciating that he considered suicide.

While Deborah’s leak is in her spine, his was around his brain, and caused CSF fluid to drip out through his nose.

Clooney was injured during the filming of a torture scene in Syriana in 2005, and told TV interviewer Larry King: “I cracked the back of my head and I thought I had an aneurysm because my head hurt so bad.

“So, I got a plane and got out of Morocco and went to Cedars-Sinai [hospital] and I was there for about a week and a half before they figured out what was wrong.”

Bedridden with severe headaches, he later told Rolling Stone magazine: “I was at a point where I thought ‘I can’t exist like this. I can’t actually live’.

“I was lying in a hospital bed with an IV in my arm, unable to move, having these headaches where it feels like you’re having a stroke, and for a short three-week period, I started to think, ‘I may have to do something drastic about this’ . . . but I never thought I’d get there,” he said. “See, I was in a place where I was trying to figure out how to survive.”

Although he never attempted to take his own life, he began to drink heavily until the symptoms were finally relieved by surgery – but still suffers from bad headaches.

Read the article here: http://www.edinburghnews.scotsman.com/news/health/health-how-spinal-condition-lead-to-crippling-headaches-1-2150059

Family launch £13k appeal to send Eccleshall mum to U.S. for life-changing op

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DESPERATELY-ILL Claire Hubbard’s family have launched a fund-raising appeal to help pay for a life-changing operation in the U.S. – to stop her brain from ‘sinking’.

The 47-year-old’s condition has baffled doctors in this country and her only hope is to meet with experts overseas.

Now she needs to raise £13,000 to cover the cost of a specialist brain scan and treatment.

Read more: http://www.stokesentinel.co.uk/Family-launch-pound-13k-appeal-send-Eccleshall/story-20825954-detail/story.html#ixzz2wp0hIvtz