Hollyoaks’ Duncan James suffers CSF Leak

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Duncan James, of UK pop band Blue and now popular TV soap Hollyoaks, talks about his recent struggles with a cerebrospinal fluid leak following surgery.

Leaks can be spontaneous, iatrogenic or follow trauma. Conservative estimates show that spontaneous leaks alone affect 5 in 100,000 people, while many more than that develop them following surgery, lumbar punctures, epidurals etc.

CSF leaks are not as rare as many believe.

You can read the story here: www.mirror.co.uk/3am/celebrity-news/duncan-james-spinal-fluid-coming-8577372

Eccleshall mum Claire Hubbard sees improvement in her condition

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AN ECCLESHALL mum suffering a debilitating brain condition is hoping she may finally have found a cure for her condition. Claire Hubbard, who suffers with intracranial hypotension which causes brain or spinal fluid to leak, has been raising £13,000 for pioneering treatment in the USA.

The teacher and former marathon runner has to use a wheelchair to get around, has a constant headache and has to lie down regularly and suffers body jerks and spasms. She had been hoping to travel abroad to get treatment to scan the brain and find out exactly where the leak was so it could be treated…

…Claire began writing a blog to share her story and let all her supporters know exactly how she was. And she has now under gone blood patching, which involved having injections in her spine to close leaks in her spine.

She is now recovering at home and although it is too early to say how successful the treatment has been she has so far noticed a major improvement. Claire may still travel to the USA for further treatment but so far has been thrilled with the results.

Read more here: http://www.staffordshirenewsletter.co.uk/Eccleshall-mum-Claire-Hubbard-sees-improvement/story-21255307-detail/story.html

Anonymous donor gives £10k to fund Eccleshall woman Claire Hubbard’s vital brain scan

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SERIOUSLY ill Claire Hubbard could soon fly to the U.S. for pioneering treatment on her brain – after receiving a £10,000 anonymous donation.

Mother-of-two Claire, from Eccleshall, has been diagnosed with intracranial hypotension, which causes brain or spinal fluid to leak. It means she suffers from constant headaches as well as daily seizures.

The 47-year-old’s only hope is to travel to America to meet a specialist and undergo a scan to pinpoint the leak.

Her friends and family have been trying to raise at least £13,000 to help meet the costs.

Read the full story here: http://www.stokesentinel.co.uk/Anonymous-donor-gives-pound-10k-fund-Claire-s/story-20963083-detail/story.html#ixzz2zMG8QJaq

Cedars-Sinai neurosurgeon successfully performs CSF repair surgery on patient

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When Elizabeth “Beth” Johnson stood up from working at her computer Oct. 28, she noticed “a kind of funny feeling” in the back of her neck. By Nov. 2, the sensation had become an excruciating headache that came on whenever she tried to stand or sit upright.

Her symptoms and MRIs suggested that a hole had developed in the dura, the lining around her spinal cord. With the loss of cerebrospinal fluid – which circulates around the brain and spinal cord – her brain shifted and sagged away from her skull when she tried to stand, causing severe positional headaches and eventually leading to periods of confusion.

After two attempts at another neurosurgical center failed to patch the hole, Johnson, who lives 13 miles from Santa Fe, N.M., came to Cedars-Sinai, where Wouter Schievink, MD, director of the Microvascular Neurosurgery Program in the Department of Neurosurgery, surgically repaired the tear.

Schievink, one of the world’s most experienced neurosurgeons for this diagnosis, said Johnson’s tear was extensive but no larger than many he has treated. It was, however, located on the front side of her spinal cord, making surgical access more challenging and the repair procedure more delicate.

When Johnson – who describes herself as a fast-moving, quick-thinking Type A personality – felt the strange sensation in her neck, she didn’t slow down at first. But as symptoms got worse, she wondered if she should go to an urgent care center. Friends surmised she was just stressed out and recommended therapeutic massage. But by Nov. 5, no longer able to sit or stand without pain, she saw her primary care physician, who immediately sent her for MRIs that showed she had spontaneous intracranial hypotension – a defect in the dura had opened, allowing spinal fluid to leak.

Two days later, Johnson was flown by air ambulance to another neurosurgical center, where doctors used injections of her own blood to try to seal the tear – the first line of treatment for most leaks. Although she was discharged to go home Nov. 15, Johnson and her partner of 14 years, Charlotte “Char” Schnepf, quickly realized the blood patches hadn’t held.

“When I called the doctors, they said to come back and have a third blood patch. They said sometimes people need 10 of them. But this didn’t make sense to me,” said Johnson, manager of a family compound and a life transitions coach.

At the suggestion of a client and friend who had found Schievink’s name online, Johnson called Cedars-Sinai; Schnepf wrote a letter, collected copies of the original MRIs and shipped them overnight to Schievink.

“He looked at my MRIs and called me the next day,” recalled Johnson, who again was flown by air ambulance, but this time to Los Angeles Monday, Dec. 2. She met Schievink that afternoon and began undergoing a series of diagnostic procedures. They confirmed the defect’s location at the front of the spine and showed a calcium deposit on a disc, which may have contributed to the tear.

Read the full article here: http://www.news-medical.net/news/20140228/Cedars-Sinai-neurosurgeon-successfully-performs-CSF-repair-surgery-on-patient.aspx

The Real Housewives of Orange County: Vicki shares that Briana is back in the hospital

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As I write this week’s blog, I am in my daughter Briana’s hospital room for the fourth day due to a CSF Leak (cerebral spinal fluid). My heart is filled with sadness, and the tears that roll down my face are all too common lately. I am so ready for peace, health, and happiness, since this first half of this year has been anything but.  The CSF leak has caused Briana to have a terribly painful headache, which the doctors have not been able to get under control. She has been on a morphine pain drip now for three days, but it has not relieved the pain enough for her to go home. Tomorrow she is having a procedure called a blood patch, which should help her symptoms, but the one they did on Friday didn’t help. Please keep my baby in your prayers. Thank you.

Read more here: http://www.bravotv.com/the-real-housewives-of-orange-county/season-6/blogs/vicki-gunvalson/filled-with-sadness

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

Stone runner takes on London Marathon raising cash to pay for US treatment

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A TEACHER suffering a debilitating brain condition who launched a fund-raising campaign to pay for treatment abroad has been overwhelmed by offers of help from residents.

Former marathon runner Claire Hubbard, 47, from Eccleshall, has been inundated with calls from people rushing to help her raise the £13,000 needed for treatment in the USA.

The mum-of-two, who taught at St Michael’s First School for much of her 26-year teaching career, suffers with intracranial hypotension, which causes brain or spinal fluid to leak. It means her life has changed dramatically and she has gone from running marathons to having to use a wheelchair to get around. She has a constant headache, has to lie down regularly and suffers body jerks and spasms.

She was diagnosed after a long battle to get medics to believe her and the treatment in America involves scanning the brain to find out exactly where the leak is so it can be treated.

Read more: http://www.staffordshirenewsletter.co.uk/Stone-runner-takes-London-Marathon-ill-Eccleshall/story-20854480-detail/story.html#ixzz2xC1cq8qR

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

Stone mum bidding to raise cash for brain treatment in the USA with the help of pupils

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GENEROUS Stone pupils and the family of a teacher suffering a debilitating brain condition have launched a major fund-raising campaign to pay for treatment abroad. Former marathon runner Claire Hubbard, 47, who lives in Eccleshall, used to work at St Michael’s First School in Stone.

Her identical twin sister Louise Walmsley is also a teacher at St Michael’s.

But four years ago the mum-of-two began suffering excruciating headaches and collapsed on the floor.She spent much of 2010 having to lie down and was in and out of hospital having tests to find the cause of her pain.

As a result she began suffering with Postural Ortho Static Tachycardia Syndrome, which causes fainting and light-headedness. She has struggled to stand up without her body jerking or suffering a seizure.

Read more: http://www.staffordshirenewsletter.co.uk/undefined-headline/story-20803344-detail/story.html#ixzz2wp1tLDDu

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