article-2601366-1CFCB02700000578-687_634x759

Bride manages to dance at her wedding despite being struck down with paralysing spinal injury

 

  • Kirsty Brutnell, 24, was diagnosed her with incurable syringomyelia
  • Condition involves cysts growing on the spinal cord, causing paralysis
  • She was not eligible for surgery as cysts were so close to her brain stem
  • Managed to train herself to walk short distances so she could do first dance

A young bride managed her first dance at her wedding despite being struck down with a paralysing spinal injury which doctors told her was incurable.

Kirsty Brutnell, 24, had been with her partner Adam, 28, for just three months when she woke one morning completely unable to use her legs.

Doctors diagnosed her with incurable syringomyelia – a condition which involves cysts growing on the spinal cord.

Brave: Kirsty Brutnell managed her first dance at her wedding despite being struck down with a paralysing spinal injury which doctors told her was incurable

Brave: Kirsty Brutnell managed her first dance at her wedding despite being struck down with a paralysing spinal injury which doctors told her was incurable

Shock: Miss Brutnell, 24, had been with her partner Adam, 28, for just three months when she woke one morning completely unable to use her legs

Shock: Miss Brutnell, 24, had been with her partner Adam, 28, for just three months when she woke one morning completely unable to use her legs

In Mrs Brutnell’s case, the cysts were growing perilously close to her brain stem, ruling out the possibility of surgery to remove them.

Mrs Brutnell, a former mental health nurse of Sturminster Newton, Dorset, said: ‘I worried about what the diagnosis meant for me and Adam.

‘We hadn’t been together for that long and I thought, “he hasn’t signed up for this”.

‘I actually told him to leave me, even though I loved him. But he was having none of it.’

Mrs Brutnell met Adam, a carpenter, through online dating in 2011 and says it was love at first sight.

She said: ‘Internet dating brought me the man of my dreams. I moved away from West Moors in East Dorset to Parracombe in North Devon where he lived to start a new life together. It was a bit of a whirlwind.’

Kirsty Brutnell
Kirsty and Adam

Condition: Doctors diagnosed Mrs Brutnell with incurable syringomyelia – a condition which involves cysts growing on the spinal cord

But then in April 2011, just two weeks after she relocated, she started to experience unsettling weakness in her lower body.

She said: ‘I collapsed at home. It was completely unexpected – it was as if my leg couldn’t hold me up anymore. I thought I was just tired, and hoped a night in bed would sort me out.’

But when she woke the next morning, she couldn’t feel anything below her hips at all.

An ambulance rushed her to North Devon District Hospital in Barnstaple where doctors diagnosed syringomyelia.

Syringomyelia sees a tube-shape cavity form and fill with liquid in the spinal cord.

Complications can be far reaching, including problems with pain, numbness, weakness, stiffness, control of bladder or bowel function, and paralysis.

Problem: In Mrs Brutnell's case, the cysts were growing perilously close to her brain stem, ruling out the possibility of surgery to remove them

Problem: In Mrs Brutnell’s case, the cysts were growing perilously close to her brain stem, ruling out the possibility of surgery to remove them

Cavities can get larger over time, exerting increased pressure, making symptoms worse.

However the damage can be halted and sometimes repaired with surgery.

But surgery was judged far too risky in Mrs Brutnell’s case because the cyst was so close to her brain-stem.

She said: ‘The doctors said although I could have physiotherapy to help me move again, I had a long road ahead, and if the cysts got any bigger, my paralysis could be permanent.

‘I thought it wasn’t fair on Adam to expect him to be my carer. We’d had loads of plans and it seemed we’d have to give them all up.

‘I told him to find someone else who he could live he dreams with and I promised I would understand.

‘When he came back to the hospital the next day, I knew he was devoted.’

Over the following months Mrs Brutnell learned to use an electric wheelchair and was able to train herself to walk short distances on crutches. In September 2013, the couple married.

Mrs Brutnell defied the expectations of doctors by managing to walk down the aisle, holding onto the arm of her grandfather, Brian, and enjoy her first dance.

Joy: Mrs Brutnell defied the expectations of doctors by managing to walk down the aisle and enjoy her first dance

Joy: Mrs Brutnell defied the expectations of doctors by managing to walk down the aisle and enjoy her first dance

She said: ‘Adam and I danced to Tim McGraw and Faith Hill’s song “It’s Your Love”. For one day I could forget about all our troubles.

‘I wanted to do something special for Adam. I built up my strength beforehand to make sure I had the energy to do it.

‘Despite all our challenges, I feel lucky. If I’m ever having a down day I can remember our wedding day, and know that I’ll have Adam with me, no matter what.’
source;http://www.dailymail.co.uk/

 

thinkstockphotos-619064128-640x213

syringomyelia;Why I Don’t Want You to Ask How I’m Feeling at Dinner

Woman Preparing Table Dinner Concept

I am lucky enough to have a great social support system. I have family and friends who consistently ask how I’m doing. Some even have learned enough information and terms about my syringomyelia to question if my syrinxes have enlarged or how my cerebral spinal fluid flow is doing. Don’t get me wrong, I appreciate this. I do. I know it is an expression that they care, but when I was asked at Thanksgiving dinner about how my pain was doing… I just about lost it.

I know the question wasn’t meant to offend. But when everyone else is discussing their holiday plans, football games and how much pie they’re going to eat, that’s all I wanted to talk about too. I wanted to feel “normal” even if just for those 20 minutes of dinner. I’d spent the morning being chronically ill, preparing my medication regimen, choosing a comfy but “holiday party appropriate” outfit, napping… I wanted to be “normal” at dinner. I could convince myself for 20 minutes… until that question.

I know this an unsolvable problem, and it’s my personal problem. I will never reprimand a friend or family member for asking after my health, but I just wish they knew it wasn’t all I want to talk about. It is a Catch-22. I don’t want them to stop asking because asking means they remember I’m ill. Remember that even though I got dressed up and made a dessert, it likely took all my energy. Remember that if I have to cancel plans last-minute, it’s because I’m too exhausted or in too much pain to function. Remember that the “normal” I can fake for 20 minutes is actually that… fake.

source;http://themighty.com

hunter-garstin

Young wrestler fights spinal cord injury

Hunter Garstin is young, soft-spoken and fiercely determined to come back from a devastating spinal cord injury. He was badly hurt during a high school wrestling match in December. However, Garstin is determined his story will not end in a wheelchair.

The Tennessee teenager and his family have gained a huge following on Facebook, Twitter and Instagram. They’re hundreds of miles from home at Shepherd Center, but they’re far from alone.

Peek into Hunter Garstin’s room at Shepherd Center, and it’s pretty clear the 9th grader has a few friends back home in Franklin, Tennessee. His walls are plastered with hundreds of homemade cards, and posters and photographs.

Looking around him, Garstin says “It’s what motivates me, and drives me. There’s not a single school that hasn’t heard about the accident, they’ve all just been so supportive.”

Hunter, who is 15, has needed that that support as he struggles to come back from wrestling injury no one expected. He was in Huntsville, Alabama, December 7th, 2013, wrestling for Independence High School, when he lost his footing, and fell backwards on the mat. That caused his head upper body to bend forward. Hunter’s mother Emily Garstin says, “The other guy came down on his neck, just in an awkward position, something that was just a freak accident. That doesn’t really happen in wrestling.”

Hunter dislocated the C-6 disc in his neck, his mom Emily says his spinal cord injury was classified as an “ASIA A,” meaning, his mother explains, “He couldn’t feel anything below C6 in his neck. He didn’t have any feeling, no movement.”

A few days after emergency surgery, Hunter was transferred to Shepherd Center in Atlanta. He was in bad shape, he says, so nauseous, he couldn’t sit up straight. His arms and legs wouldn’t move. Hunter says, “That’s when it really started hitting me, hey, this is something really serious, and this is your life here.”

Hunter Garstin

And. that’s when something clicked, and Hunter realized what he had to do, “So, ever since then, I’ve just been, just workout after workout, doing whatever I can. And this place has really been amazing.”

From early morning to late afternoon, Hunter pushes himself. Clinging to the smallest signs of progress. Being able to feel his fingers. Moving his middle toe. He has regained sensation in most of his body, now he’s working on regaining control of his arms and legs. He says, “I can’t just, you know, stop and quit. Because this is the rest of my life. And I don’t want to, I refuse to be stuck in this wheelchair.”

Back home at Independence High, Hunter’s school has rallied behind him. Students created the hashtag #hunterstrong.

At a local elementary school, kids too young for Twitter or Instagram videotaped themselves cheering for him.

And then, there’s the mail. Emily says, “People from our community. People from all over the world, he gets letters from Australia, Spain and England.”

Recently Hunter’s favorite VIP – Dix – his dog came to visit. That got him thinking about home. He says, “Sometimes I feel like I’m missing out on freshman year. And you, know it really kills me, that I have to stay up here.”

But Hunter Garstin pushes on. Knowing he’s got this. He’s #hunterstrong.

source;http://www.spinalcordinjuryzone.com/

landscape-1433457599-woman-493991213-1

I Thought I Was Pregnant but I Actually Had a Debilitating Disease

Beth Nguyen was an ER nurse and a mother when she nearly passed out at work. Then she got a surprising diagnosis.

 

Beth Nguyen was a busy ER nurse, married to her high school sweetheart and the proud mother of two little kids, when her first strange symptoms struck. She was working a 14-hour shift in the emergency room when she started to develop a headache around her right eye, along with dizziness and nausea.

“My first inclination was to check to see if I was pregnant,” she says. “But I was not. I was very healthy — I’d only had my wisdom teeth removed and two C-sections.”

Quickly, her symptoms worsened to pain that shot down her neck, shoulders, and spine, making it difficult for her to stand during her nursing shifts. But when she went to her physician for tests, her blood work and MRI came back normal.

“The recommendation was to decrease my stress, because my job was very stressful,” she remembers. “I thought, ‘Maybe I injured my back lifting heavy people.’ So I better suck it up, keep going.” But her symptoms kept getting inexplicably worse — vomiting, having trouble gripping with her right hand, difficulty maintain her balance, even periods of missing vision in her right eye.

Yet she kept going to work to pay the bills. On the night that ended her career, she was taking care of a patient having a heart attack in the ER when she felt the room start spinning.

“I felt really sick,” she says. “I remember the patient called out, ‘My nurse needs help.'”

Her blood pressure was 80/30, and her heart was racing at 180 beats per minute. (Normal is 60 to 100.) She nearly passed out and was admitted to the hospital, where a spinal tap revealed that her spinal fluid levels were over 50; normal is 10 to 12. Fluid levels that high drastically raise the pressure inside one’s skull, a condition called intracranial hypertension, which elevates the risk of a stroke and blindness.

The ER doctor stared at her in disbelief. “Why didn’t you go to a doctor?” he demanded.

“I did!” she shot back. “But I was dismissed and everything attributed to stress because nothing showed up in the lab work.”

She was put on a pill to reduce her pressure levels and discharged, expecting to feel better. But instead she only felt worse.

When she followed up with a local neurologist, he reacted with aggravation, doubting her complaints. “Of course the pill is helping you,” he told her.

“I felt betrayed,” she says now, “because I’d taken such good people over the years, so why was I being treated with such disrespect?” By the time she got in to see an expert in intracranial hypertension, a neurosurgeon at Johns Hopkins, one side of her face was drooping, her speech was slurred, and her legs dragged.

He took one look at her and grew furious that she had been dismissed by her prior doctors — at any second, she could go blind or suffer a stroke. It was a terrible possibility that could have been avoided, he said, if she’d gotten properly diagnosed from the start.

THE DIAGNOSIS

The neurosurgeon diagnosed her with a disease called syringomyelia, in which cysts, also called syrinxes, form on the spinal cord and destroy it from the inside out. Evidence of it had appeared on her original MRI but had been missed.

“Having worked as nurse for 15 years and being told that, I was very angry and upset,” Beth says. “It was like, how could this happen? But I also felt validated.”

Syringomyelia is a disease that was described in the medical literature as early as the 1500s. The fluid-filled cavities can occur anywhere along the spinal cord, for a number of different reasons, such as trauma or infection, and sometimes occurs with no identifiable cause. It is difficult to estimate the number of sufferers, but the last NIH estimate listed a conservative 40,000 in the U.S. alone.

“We don’t always know why it happens, and it can be quite debilitating,” says Atlanta neurosurgeon Nitin Mariwalla, a cerebrovascular specialist who has not treated Beth. “We think it can be due to genetic and environmental causes.”

About 2 to 13 people get it per every 100,000 in the population. The goal in treatment, according to Dr. Mariwalla, is to “re-establish cerebral spinal fluid flow dynamics” by relieving the area of the blockage.

Beth’s neurosurgeon told her she needed a lumbar shunt to divert the increased spinal fluid. The risks were grave — it could make her symptoms worse, he said, but there was a chance it could help, and if she didn’t do the surgery, she would definitely get worse anyway.

“With two young kids,” she says, “I had to take the chance.”

She had the surgery in November 2012 at Johns Hopkins. Soon after, her speech cleared up, she could grip things again, her thoughts grew clearer, and she could walk unassisted. Her headaches went away and her vision cleared up. But after only a few months, she started having heart palpitations and trouble breathing, and returned to the ER where she had once worked. Her oxygen levels were only in the low 80s, yet no cause could be found.

COURTESY

Desperate for answers, and at the advice of her neurosurgeon, she rushed to the Mayo Clinic group in Jacksonville, which was closer to her home than the 12-hour drive to Baltimore.

“I thought I was going to die,” she remembers.

The doctors there made her get on an exercise bike while sending a balloon through her pulmonary artery. They promptly diagnosed her with heart failure, pulmonary hypertension, and POTS — a nervous system syndrome that causes fluctuation in blood pressure and heart rates. Her previous tests had missed the diagnosis because she had been tested while lying down, not upright.

If she had been diagnosed with syringomyelia from the beginning, with a more aggressive and proactive treatment, she might have prevented the progression of her symptoms, but now she had irreversible damage.

Beth was in shock, especially when she learned that the treatment for heart failure is to avoid salt, but the treatment for POTS is 3 grams of salt per day.

“I said, ‘How could this be?'” she remembers, and the doctors told her: “You’re special.”

THE OUTCOME

Beth admits that no doctor knows how long she has left to live. Her quality of life is grim — today, she is severely disabled, in a wheelchair most of the time, and on oxygen 24/7. She is constantly dizzy and nauseated and has trouble with her vision.

But she remains determined that some good will come out of her experience. So she started Worldwide Syringomyelia & Chiari Task Force Inc, a nonprofit organization to educate the public, nurses, and physicians about the disease so the diagnosis for others will not be missed the way it was for her.

“It is suspected that radiologists often completely miss it because a small syrinx is often overlooked on the MRI,” she says.

The disease is also often dismissed because there is no universal medical treatment protocol in place, something Beth’s organization is working to change. Today, there are six physicians on the medical advisory board, including Dr. Mariwalla. The organization has a 24-hour support group with over 400 active members, and is pushing on a number of different fronts raise awareness about the disease.

“This will eventually take my life; I wanted to get the word out so other people don’t have the same path,” Beth says. “I have to know something positive came out of this — I have to know it hasn’t been for nothing.”

source;http://www.cosmopolitan.com/

3264

This is what it feels like to have brain surgery at 23-term life

Jessica Warriner and friend hugging.

Last month, I found out I need to have brain surgery. I’ll be getting a piece of my skull taken out and part of my first vertebra. It’s happening on Thursday.

I don’t think of myself as sick. There’s still a disconnect when I look in the mirror and can’t see anything externally wrong – maybe darker circles under my eyes – but I feel my body stinging and tingling and burning itself up inside.

As the days go by, I’ve gradually been accepting it a little more. There’s less confusion and resistance every morning when I wake up and realise it all wasn’t some unpleasant dream, and yes, the symptoms are still very much here

I was diagnosed with a chronic illness out of the blue in June 2015. I’d caught the flu, but something felt wrong about how dizzy it was making me – I couldn’t lie down without everything spinning and feeling like I’d had a huge night out. This led to a doctor’s visit, which led to a CT scan, which led to an MRI and words I’d never heard before: Chiari Malformation, Type 1.

A Chiari malformation is a condition where your skull isn’t the correct shape to fit your brain – the cerebellum doesn’t have enough space, so the cerebellar tonsils herniate towards the spinal cord through the hole in the base of your head. The resulting pressure can affect brain function and cerebral spinal fluid flow.

Naturally, I took this sudden news with aplomb and calmly went about my day.

Nope. I freaked out.

I’m pretty healthy, and had never been on the patient side of the major illness fence .

While Chiari can be acquired through trauma – like a car accident – it’s usually a congenital condition. Often, people remain asymptomatic. For those with symptoms, issues can include severe headaches, neck pain, dizziness, balance problems and brain fog, among many others.

To my relief, the dizziness passed, and I crossed my fingers I’d flip straight back to my symptom-free version of Chiari. I pushed it out of my mind, got the all clear to fly, and set off on a trip to Asia in July.

A few weeks after the diagnosis, I was walking upstairs at my stepfamily’s place in Kuala Lumpur and coughed. Sharp, shooting pain squeezed around my chest, sparked down my left arm, and I ended up at a doctor . He prescribed me antibiotics for a chest infection and I was on my way. My dad made a joke about making the nachos too spicy.

Shortly after, in Tokyo, I lay in bed and realised my arms were partially numb. I couldn’t cough without the same shooting and burning pain snaking through my limbs. I looked up the details of the closest hospital just in case, closed my eyes, and waited for the morning.

Fast forward to later in the year. Just like with the original Chiari diagnosis, I’d gotten over the shock of the continuing arm numbness and pain. While irritating, it was manageable. But my GP sent me off to a neurologist to check things out just in case.

My physical exam was fine – special skill to put on resume: can detect “sharp” and “soft” like a boss – and my neurologist recommended a back MRI to check for any slipped discs or syringomyelia.

Syringomyelia’s a progressive condition often linked to Chiari malformation. It’s when the obstructed flow of cerebral spinal fluid causes cysts, or syrinxes, to form in the spinal cord. As syrinxes grow, they can cause damage to the cord, causing pain, weakness and as with Chiari, a multitude of other symptoms. It affects around eight in 100,000 people.

I crossed my fingers and hoped if anything was found, it’d be a slipped disc.

A few weeks and two emergency room visits later, I walked back into my neurologist’s office with heavier arms and weaker fingers. The MRI results were up on his computer screen, and you didn’t have to be a medical professional to spot the issue (assuming you’ve obsessively googled the hell out of your weird rare medical condition).

It wasn’t a slipped disc. There’s a big, sausage-like syrinx squished firmly in my spinal cord.

My appointment with my neurosurgeon was the next day. I handed over a folder, and he flipped through the inky MRI scans inside.

“We need to operate.”

Neurosurgery. Real, actually happening, happening soon, brain surgery.

The procedure’s called a posterior fossa decompression – a bit of skull is removed, along with part of the first vertebra, to make room for the Chiari malformation and let cerebral spinal fluid flow more easily. From there, the reduction in pressure can reduce or at least pause the syrinx size and the associated symptoms.

It’s not a cure, and results aren’t guaranteed. But many people see a huge improvement post-surgery, and when there’s a big syrinx in town, there’s not really another road to go down.

The difficulty with these chronic illnesses is the sheer unpredictability of symptoms. Different people can have entirely opposite representations of the conditions, which can lead to issues with diagnosis. I feel lucky that overall, my doctors and specialists have been incredibly understanding, knowledgeable and proactive in helping me get to this point.It’s been a strange few weeks since I signed the surgery paperwork. Sometimes, usually during daylight hours, I’m pretty gung-ho about it all. Other times, I wake at 3am with a jolt, mentally scanning my body to check for any deterioration. I fumble for the light switch and waggle my fingers in front of my face, eagle-eyes looking for traces of slower, stiffer digits. My throat gurgles and I swallow around a tongue that seems too big for my mouth.

In a lot of ways, I feel calmer than I have in a long time. The only thing I need to focus on is getting better, and I’ve no concerns about surgery costs (cheers, Australian public healthcare system). Illness has been a crap but highly efficient way of throwing everything into perspective for me. Look after your health and whenever possible, be near the people you love who love you right back.

Did I think I’d be starting 2016 with brain surgery, an impressive scar, and a fuzzy recovery timeframe? No. But the only thing to do is face it head-on. Sometimes it’s scary, sometimes it still doesn’t feel real, and sometimes it’s weirdly amusing. One of my closest friends and I discussed dressing up as a frontal lobe and cerebellum for a pre-brain-surgery meet up.

There’s just one sleep to go. And to answer everyone’s favourite two questions when it comes to neurosurgery: no, I won’t be awake, and no, I won’t be playing guitar.

source;http://www.theguardian.com