Lifesaving brain surgery could aid 15,000 epileptics… but just 300 get it because many doctors don’t realise it’s an option

  • Experts say 15,000 patients considered at risk of sudden adult death
  • This could be either from the damage to the brain that seizures cause or from having them in a situation that leads to death e.g. swimming
  • Delicate op to remove part of the brain can end the most severe symptoms
  • But patients must undergo a raft of tests at specialist centres and only a handful exist

Radical brain surgery for epilepsy offers a lifeline to those who suffer from a condition that causes 1,000 deaths each year through seizures. Yet few are ever offered the operation because many doctors don’t even know it’s an option.

According to experts at the National Hospital for Neurology and Neurosurgery in London, 15,000 patients are currently considered at risk of sudden adult death from epilepsy (SUDEP), either from the damage to the brain that seizures cause or from having them in a situation that leads to death, such as while swimming.

A delicate operation to remove part of the brain can bring an end to the most severe symptoms, but to be eligible, patients must undergo a raft of tests at specialist centres to pinpoint those who will benefit the most. The trouble is that only a handful of these centres exist.

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Delicate: The position of the hippocampus, which in some patients is the part that generates seizures, and how it is removed 

Delicate: The position of the hippocampus, which in some patients is the part that generates seizures, and how it is removed

Because of this, just 300 such procedures are carried out annually, meaning scores of deaths every year are, potentially, avoidable.

Epilepsy occurs when neurons or brain cells send out abnormal electrical impulses, disrupting the brain’s messages to the body, which may result in seizures, characterised by a loss of consciousness and convulsions, and erratic behaviour.

It is traditionally treated with medication but brain surgery can leave 60 per cent of patients with ‘seizure freedom’.

And the younger the patient the better, according to Professor Ley Sander, head of the World Health Organisation Collaborative Centre for Research and Training in Neurosciences and medical director of the Epilepsy Society.

He says: ‘We end up seeing a lot of patients who have been through paediatric clinics and on to adult clinics when they have already missed out on education and social contacts. We have carried out operations on those in their 50s, 60s and 70s. But Great Ormond Street, for bluehost example, will carry out surgery on the under-fives.’ Prof Sander says that each year, the pool of those with epilepsy grows. ‘About 30,000 people are diagnosed with epilepsy in the UK each year and while 10,000 to 15,000 could benefit from surgery, only 300 people have it annually.

‘The ideal candidate is someone whose scans indicate a lesion in the brain which shows without doubt the source of their epilepsy. If it is accessible to the surgeon, then we can go ahead.’

Learn what a seizure is and how it relates to epilepsy

The operation is called a lobectomy. After opening the skull, neurosurgeons remove a part of the brain called the hippocampus which lies within the temporal lobe.

This lobe is one of the four major lobes of the brain and is located behind and beneath the frontal lobe – involved in processing sensory input from the eyes, ears and nose. The surgeon must take great care not to damage the parts responsible for vision.

The hippocampus is associated with long-term memory and spatial awareness. It is this part which in some patients generates seizures.

Prof Sander says: ‘This procedure is not for every person with epilepsy, which can be disappointing.’

He adds: ‘There are, of course, risks with surgery but this is weighted against those of uncontrolled seizures.’

Up to a third of patients who have the procedure will have some problems with vision, memory loss and changes in mood after surgery, but 75 per cent will be able to stop taking medication.

‘One patient, a man in his 50s got his first proper job after surgery,’ says Prof Sander, who believes that the benefits are huge – as seen in the case of Jasmine Smith, from London.

At 17, Jasmine was training to be a dancer when she suffered seizures. A brain scan revealed she had a tumour which doctors believed had been present since birth but had grown with her and was now causing epilepsy.

David and Samantha Cameron’s son Ivan died in 2009, at the age of six, from complications arising from severe epilepsy and cerebral palsy

David and Samantha Cameron’s son Ivan died in 2009, at the age of six, from complications arising from severe epilepsy and cerebral palsy

Jasmine, now 23 and training to be a nurse, says: ‘I had surgery in June 2011 and it was incredible. Although surgery can be lifesaving, it is also life-changing. I was really exhausted for months afterwards and although my long-term memory and my word-finding were affected, my short-term memory is better.

‘It does take a while to recover as your brain is so sensitive. But I am now seizure-free and do not take any medication.’

One in every 100 people has epilepsy, which is three times more common than multiple sclerosis and more than three times as common as Parkinson’s disease. There are more than 40 types.

While it is not known what triggers the condition in the majority of cases, there may be a hereditary element and it is most often diagnosed in childhood and in the over-65s.

It can also be caused by damage to the brain after strokes, brain tumours and severe head injuries.

There is no definitive test for the condition, but electroencephalograms (EEG) record brainwave patterns which give specially trained doctors information to make a diagnosis.

Prime Minister David Cameron’s eldest son Ivan died in 2009, at the age of six, from complications arising from severe epilepsy and cerebral palsy.

Actor John Travolta lost his son Jett, who was said to have ‘a history of seizures’, in the same year.

There are only six hospitals in the UK that have the multi-disciplinary medical team required to carry out lobectomy.

‘More patients could benefit from this procedure,’ agrees consultant neurologist Dr Nicholas Silver, at the Walton Centre for Neurology and Neurosurgery, Liverpool.

‘But not everyone who goes through surgery will be cured and some will be left with severe problems like depression.

‘A lot of those at risk of SUDEP will have numerous other problems, such as serious learning disabilities, which mean they may not be eligible. But there are a significant number o

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Runtime : 116
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Movie ‘Baywatch’ was released in May 12, 2017 in genre Action. Seth Gordon was directed this movie and starring by Dwayne Johnson. This movie tell story about Devoted lifeguard Mitch Buchannon butts heads with a brash new recruit. Together, they uncover a local criminal plot that threatens the future of the Bay.

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‘Wonder Woman’ is a movie genre Action, was released in May 30, 2017. Patty Jenkins was directed this movie and starring by Gal Gadot. This movie tell story about An Amazon princess comes to the world of Man to become the greatest of the female superheroes.

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Drug Company Sanofi Admit Prescription Drug Sodium Valproate DOES Harm Babies

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42 years later and an estimated 20,000 babies affected by the Prescription Drug Sodium Valroate (Epilim) manufacturers Sanofi have FINALLY admitted that their drug DOES harm babies when taken during pregnancy.  When 1st marketed back in 1972, it was originally only prescribed for Grand Mal and Petite Mal Epilepsy , as the years have passed it in now also prescribed for

  • Migraine
  • Depression
  • Bipolar disorder
  • Pain relief
  • Anorexia

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Following the recommendations of the EMA, Sanofi  has sent a letter to healthcare professionals to warn of the dangers of Sodium Valproate during pregnancy.

Recommendations

  • Children exposed to valproate in utero have an increased risk of developmental disorders (30 to 40% of births) and / or birth defects (in approximately 10% of cases)
  • Valproate should not be prescribed to female children, adolescents, women of childbearing age, women who may be pregnant unless other treatments are ineffective or not tolerated.
  • Treatment with valproate should be initiated and supervised by a physician experienced in the management of epilepsy and bipolar disorder.
  • We must carefully measure the benefit / risk of valproate treatment before prescribing valproate for the first time, when renewing, when a girl reaches puberty and when a woman wishes to become pregnant or become pregnant.

You must ensure that all patients are informed and understand:

  • The risks associated with valproate during pregnancy;
  • They must use effective contraception;
  • The need for a regular review of the treatment;
  • The need to quickly check if planning pregnancy or become pregnant.

Any child that has been exposed to Sodium Valproate may suffer symptoms such as:

  • Premature Birth
  • Small fingernail
  • Spina Bifida / Cerebral Palsy
  • Limb defects
  • Joint Laxity
  • Characteristical facial features
  • Delay in reaching milestones
  • Gross and fine motor skills
  • Autistic Spectrum Disorders
  • Speech and Language Delay
  • Attention and memory difficulty
  • Vision problems
  • Incontinence
  • Inguinal Hernia
  • Hypospadias

and officially go on to obtain a medical diagnosis of FACS (Fetal Anti Convulsant Syndrome) What is FACS? http://facsa.org.uk/vital-knowledge/

In August 2013 we (INFACT) had our first meeting with the Pharmacovigilence Director June Raines following our Panorama programme in July 2013, where we asked for an investigation into the reasons why Valproate had been allowed to harm so many in pregnancy.

Since the drug came onto the market in 1973, it has touched 20,000 with 40% of those suffering neurodevelopmental disorders (8000).  Children exposed in utero to valproate are at a high risk of serious developmental disorders (in up to 30-40% of cases) and/or congenital malformations (in approximately 10% of cases)

These figures were agreed at that meeting as both INFACT & MHRA had used the same research papers in calculation.

After being turned down for a public enquiry, We were so pleased that our innitiation of an investigation into Valproate in pregnancy was accepted.  In October 2013 a European Review  began through the European Medicines Agency (EMA) and some of their conclusions were released on the 10th October 2014   (see link) http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/referrals/Valproate/human_referral_000187.jsp

Approximately 500 babies are affected by Sodium Valproate each year and with it being prescribed for so many illness, it is appalling that so many children have been affected and disabled due to this medicine.  What’s even more appalling is that UK Government KNEW about the effects of the medicine and allowed it to be prescribed for all of the above.

In a meeting we had recently with  Norman Lamb, Minister for Care and Support he stated :

norman-lamb_2504879b

What frustrates me is that know we all now that prescribing this to women of childbearing age, unless totally necessary is a total disaster. It is a very stupid thing to do and yet we also know that not many GPS know about this”

“Going back to the issue of those that already have this, and you have it in many cases because the message hasn’t got across, and there’s been a failure of the system really, there is a responsibility to make sure that we think through and support those people through good care given for what happened to them.”

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Topiramate/ Topimax :Epilepsy drug link to birth defects found


Pregnant women who take an epilepsy drug that is also prescribed for migraines may increase the risk of their children having birth defects, doctors warned yesterday. Babies born to women who took topiramate during pregnancy were more likely to have cleft palates, cleft lips and genital abnormalities, a study found.

The findings build on previous research, which found that other anti-convulsant drugs are also linked to an increase in birth defects. Typically, 2-3% of babies are born with abnormalities, but among women taking epilepsy drugs, the figure is 4-8%. Birth defects were more common when women were receiving high doses of more than one drug.

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John Craig, a neurologist at the Royal Group of Hospitals in Belfast, who runs the UK epilepsy and pregnancy register, examined 178 babies whose mothers were taking topiramate on its own, or alongside other epilepsy drugs. Of those, 16 of the babies’ mothers were taking only topiramate. Craig recorded four babies with cleft palates or cleft lips, a rate 11 times greater than in the general population. Among the baby boys, four had genital abnormalites, two of which were classified as major defects, a rate 14 times higher than the national average.

Craig said the findings, which appear in the journal Neurology, emphasised the need for doctors to monitor closely the pregnancies of women who take topiramate and other epilepsy drugs. “These results should also get the attention of women with migraine and their doctors, since topiramate is also used for preventing migraine, which is an even more common condition that also occurs frequently in women of childbearing age,” he said.

Tragic mum dies in boyfriend’s arms less than a year after having miracle baby

Lynsey Jones was just 25 when she suffered a massive epileptic fit at her home, while recovering from a stroke

BPMLynsey and partner Ken Mole
Lynsey Jones was set to marry partner Ken Mole when tragedy struck

A young mum and bride-to-be died in her boyfriend’s arms less than a year after having a miracle baby.

Lynsey Jones was just 25 when she suffered a massive epileptic fit at her Midland home.

Her son Connor – the “spitting image” of his mum – was aged just 11 months when tragedy struck.

Lynsey and partner Ken Mole had earlier been told a medical condition may stop her conceiving.

She was also recovering from a stroke which happened as surgeons worked to remove a brain tumour.

Devastated Ken, now preparing for Christmas without his fiancee, said: “Lynsey was on the stairs going to bed when she dropped and died in my arms.

“She didn’t even make it to Connor’s first birthday.

“But the time she did spend with him was amazing for them both.

“I found it really difficult to cope with bringing up the little one on my own.

“He’s the spitting image of her, he has her eyes and her smile – it’s a blessing in one way, it melts your heart and breaks your heart.

“Lynsey was the type of person to put everybody else first.

“At her funeral we had to leave the doors open because more than 200 people were there.”

BPMKen Mole and son Connor
Ken Mole and son Connor, who is said to be the “spitting image” of his mum

Lynsey, from Dorridge, fell pregnant despite problems caused by adhesions – abnormal skin growths in her stomach.

The stroke, in October 2012, robbed her of her speech and movement in her right side but she was able to walk with a stick and her speech was returning. The couple hoped to marry this year but had not set a date.

After losing his girlfriend of seven years on June 30 last year, 36-year-old Ken set up a charity in Lynsey’s memory called Baby Blue.

It will help Cancer Research and epilepsy causes.

And tomorrow a charity match in aid of Ken and Connor will be played at Sutton Town FC.

The match, to feature former Blues and Villa players, was set up by Ken’s neighbour and friend Steve Withe – the son of former Villa star Peter Withe.

Steve, 37, has signed up ex-Blues favourites Paul Devlin, Geoff Horsfield and Martin O’Connor, plus former Villa players Gareth Farrelly and Tony Daley.

He said: “Ken is alone with his son and theirs is a sad story.

“It’s difficult for him, he’s a single parent and can’t work.

“We want to celebrate Lynsey’s life and give something back to Ken and Connor.

“A lot of people really want to help.”

Tomorrow’s match kicks off at 2pm.

The gate price is £3 for adults and £1 for children.

The Effects of Epilepsy on the Body

THE EFFECTS OF
EPILEPSY ON THE BODY

Epilepsy is a chronic neurological condition. The main symptom is unpredictable seizures.

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Dazed and Confused
What Happened?
Sleepiness
Headache
Labored Breathing
Uncontrollable Movements
Lack of Control
Aura
Signs in the Eyes
Depression
Abnormal Heartbeat
Loss of Muscle Tone
The Scream
Pregnancy
Epilepsy is a chronic neurological condition. The main symptom is unpredictable seizures.

The Effects of Epilepsy on the Body

Epilepsy is a disorder of the brain that causes recurring seizures. According to Johns Hopkins Medicine, almost three million Americans are living with epilepsy. Epilepsy can be triggered by illness or injury, but most of the time, there is no known cause. Because it is a disorder of the central nervous system, effects can be felt throughout the body. Due to the unpredictability of seizures, there can also be a great emotional toll.

Central Nervous System

The brain is the central hub for all voluntary and involuntary movements in your body. Electrical activity running through nerve cells help your brain tell your body what to do. When abnormal signals interrupt the brain’s normal functioning, you can have a seizure. There are several different types of seizures.

Focal/Partial Seizures

Focal seizures, also called partial seizures, are when abnormal electrical functions happen on only one side of the brain. Some people feel an aura, or a feeling of euphoria or doom, right before having a seizure. Other pre-seizure symptoms include changes to sight, hearing, or smell perception.

In a simple focal seizure, symptoms depend on which area of the brain is involved. The seizure may be accompanied by nausea or sweating. A complex focal seizure happens in the temporal lobe, which affects memory and emotion. This type of seizure usually involves loss of consciousness or lack of awareness of what’s happening. Symptoms may include screaming, crying, laughing, or lip smacking. There’s usually a feeling of sleepiness following a complex focal seizure.

Generalized Seizures

When both sides of the brain are involved, it’s called a generalized seizure, which may cause loss of consciousness. Absence seizures, or petit mal seizures, are short, usually lasting half a minute or less. A person having an absence seizure may appear to be staring and will have no awareness of what happened. There may be some facial twitching or rapid blinking. Inatonic seizures, or drop attacks, there’s a sudden loss of muscle tone, causing you to fall without warning.

In a generalized tonic-clonic seizure, or grand mal seizure, the body and limbs contract and extend. This is followed by tremor, after which the muscles relax. Other symptoms include fatigue, severe headache, and body aches. Sometimes there are speech and vision disturbances. People who have numerous tonic-clonic seizures are at increased risk of sudden unexplained death in epilepsy (SUDEP). Myoclonic seizures involve sudden, jerky muscle movements. This type of seizure usually happens multiple times a day over several days.

Status epilepticus describes a seizure that lasts for an extended time – usually from 5 to 30 minutes. It can also mean you’re having multiple seizures without coming to consciousness in between. Status epilepticus increases the risk of permanent damage to the brain.

According to the Epilepsy Foundation Michigan, about 30 percent of people with epilepsy eventually develop clinical depression. Epileptic seizures can also make you more prone to falls and injuries. There’s a common misconception that you can swallow your tongue when you’re having a seizure, but that’s not possible.

Circulatory and Respiratory Systems

Epileptic seizures can interfere with your heart rhythm and breathing. Symptoms include shortness of breath and coughing. In rare cases, choking occurs. Over the long term, epilepsy increases risk of heart disease and stroke. Some cases of SUDEP are thought to be due to heart and breathing problems.

Muscular and Digestive Systems

During a seizure, misfires from the brain can tell your muscles to contract and relax. A seizure may cause muscles to jerk uncontrollably. In some cases, you can lose muscle tone so quickly that you fall down. When muscles surrounding your vocal cords seize up, it pushes out air. It sounds like a cry or a scream.

Epilepsy, and some of the drugs used to treat it, can cause digestive problems like heartburn, nausea, and vomiting. Constipation and diarrhea can also be problematic. In children, epileptic seizures can cause abdominal pain. During a seizure, or immediately following one, you may lose bowel or bladder control.

Reproductive System

Although epilepsy doesn’t affect the reproductive system directly, it can have an impact on pregnancy. Among women with epilepsy, about 25 to 40 percent experience a higher number of seizures during pregnancy, according to the University of Rochester Medical Center.

Most women with epilepsy have healthy pregnancies and deliver healthy babies. However, there is a higher risk of hypertension, delivering an underweight baby, and stillbirth. Pregnant women with epilepsy should be closely monitored.

– See more at: http://www.healthline.com/health/epilepsy/effects-on-body#sthash.zrY9fzgU.dpuf