A girl from Scotland became the world's youngest patient of pioneering brain surgery when he was two and a half years old.
Viktoria Kaftanikaite had deep brain stimulation (DBS), which sends electrical impulses through the brain to restore abnormal nerve signals.
She was diagnosed with dystonia shortly before her surgery, a condition that would shake her body in uncontrollable shasms and spasms.
Her parents, Patrycja Majewska and Martinas Kaftanikaite, said they felt helpless to look after their daughter, who was struggling to eat and breathe.
Doctors said they were operating Viktoria to save her life, because dystonia can be fatal in a very small number of cases.
They were extremely careful, but everything worked like clockwork and offers promising future patients with movement disorders.
After the four-hour operation at Evelina Hospital in London in May, Viktoria is recovering in intensive care in her hometown of Glasgow.
Viktoria Kaftanikaite has become the youngest person in the world with breakthrough brain surgery at the age of two and a half years. Pictured with her mother afterwards
Viktoria was the youngest patient with deep brain stimulation (DBS), who sends electrical impulses through the brain to restore abnormal communication. Shown during the operation
Viktoria & # 39; s muscles would get into extreme spasms, causing her to keep screaming in agony. She was in intensive care for five months at The Royal Children for Hospital, Glasgow (photo), while doctors tried to find out why
According to the Dystonia Society, DBS can reduce symptoms by up to 80 percent. However, one in five patients does not get much relief.
Ideally, DBS should be offered to children as early as possible because the effects diminish as a patient lives with dystonia for longer.
But before Viktoria, the youngest person to receive DBS was a three-year-old boy, as surgeons have gradually used the treatment of young people with caution.
Dr. Jean-Pierre Lin, the pediatric neurologist of the consultant who coordinated the treatment of Viktoria, told The Guardian that working on Viktoria & # 39; had broken the sound barrier & # 39; due to age restrictions.
According to The Dystonia Society, an estimated 70,000 people of different ages in the UK suffer from dystonia and can be caused by other conditions such as cerebral palsy or stroke.
It took two years for Viktoria dystonia to be diagnosed and doctors thought it was caused by a rare mutation in the GNA01 gene.
The most severe form of dystonia has a mortality rate of 10 percent, and dr. Lin said that Viktoria would have died without the operation.
Viktoria & # 39; s arms, legs, eyes, and mouth would vibrate constantly, preventing her from eating and also affecting her ability to breathe on her own.
Her muscles would fall into extreme spasms and leave her screams in agony.
Viktoria & # 39; s parents, Patrycja Majewska and Martinas Kaftanikaite, said they felt helpless to look after their daughter. Pictured after the operation
Doctors said they had surgery on Viktoria to save her life. She struggled to eat or breathe without help because of her constant mouth movements and waving arms
DBS involves the implantation of very fine wires with electrodes at their ends into the brain by drilling two holes of 5 p in the top of the skull. Shown, the operation in progress
The four-hour operation took place in May at Evelina Hospital in London
Mrs. Majewska said: & Viktoria had uncontrolled movements all the time. Her arms and legs would not move normally and she pushed her head down and her belly up.
WHAT IS DYSTONIA?
Dystonia is the name for uncontrolled and sometimes painful muscle cramps.
The symptoms vary from patient to patient, but usually cause part of the body or multiple parts to vibrate, twist or twist.
Van Dystonia, of which there are different types, is thought to be caused by a problem with the part of the brain that controls movement. Often the cause is unknown, but sometimes this can be due to a genetic genetic problem, Parkinson's disease, a stroke, cerebral palsy or multiple sclerosis.
Dystonia that begins in adult life usually remains focused on one part of the body. When dystonia starts in childhood, it tends to spread over several parts of the body.
It is usually a lifelong problem, but treatment can help relieve symptoms.
It is estimated that it affects at least 70,000 people in the UK, and no fewer than 300,000 people in North America
However, since many cases are not diagnosed, it is difficult to determine the true number.
& # 39; We noticed that she could not hold anything like toys at a young age and had trouble holding her head up because it fell from left to right. & # 39;
Majewska and her partner, Mr. Kaftanikaite, struggled to look after their daughter while doctors tried to figure out what was wrong with her during a five-month stay in intensive care at The Royal Children for Hospital, Glasgow.
For the vast majority, dystonia does not shorten life expectancy and is not fatal. But it can cause secondary complications that are life threatening.
Not long after her diagnosis, at two and eight months, Viktoria and her family were flown to London, where they waited for the procedure.
DBS, which is offered to patients in the NHS when other treatments do not work, involves implanting very fine wires with electrodes at their ends into the brain by drilling two 5 p holes in the top of the skull.
The wires are connected to extensions under the skin behind the ear and in the neck, which are then connected to a pulse generator.
This allows electrical impulses to be sent to the brain, regulating abnormal communication that causes symptoms of dystonia.
Mrs. Majewska said: & # 39; Until now she was unable to do anything. & # 39;
Viktoria is already seeing improvements. Pictured with her father since the operation
Young children with cerebral palsy, who were born prematurely or were injured at birth, now have better hopes of being treated with DBS since the Viktoria operation went so well
Dr. Jean-Pierre Lin, the consultant's pediatric neurologist who coordinated Viktoria's treatment, said the operation worked as a timepiece & # 39;
Viktoria & # 39; s chances of being free from various debilitating and painful movements have greatly improved.
Dr. Lin said doctors now know they can safely deliver DBS in two and a half years, which is promising for the future.
Young children who have cerebral palsy, were born prematurely or have suffered an injury at birth now have better hope of being treated with DBS.
Dr. Lin said they have been offering DBS to younger and younger children for the past 15 years and have seen a five-year-old boy with cerebral palsy walk completely unaided after DBS.
& # 39; The Viktoria case is exciting and possibly of great importance because children with musculoskeletal disorders get a chance to benefit from DBS and have a better future, & # 39; he said.
WHAT IS DEEP BRAIN SIMULATION FOR DYSTONIA?
Deep brain stimulation (DBS) helps to control movement problems and is the most important type of operation used to treat Parkinson's. It is also approved for the treatment of epilepsy, essential tremor, OCD and dystonia.
DBS is a relatively new procedure that uses electricity communication between two components that are implanted in the body.
There are two pieces of hardware:
- An electrode with four contact points, implanted in the brain.
- A pulse generator or neurostimulator, implanted under the skin just below the collarbone or in the abdomen for women. It is programmable.
The two are connected with cables that pass under the skin.
When the generator is on, electrodes provide high-frequency stimulation to the targeted area in the brain, blocking the signals that cause the symptoms of dystonia.
Abnormal movements and postures and / or dystonic tremor can be reduced, as well as pain caused by dystonia.
DBS works most effectively for people with a genetic dystonia or idiopathic – when there is no known cause.
The treatment is intended for those with hereditary or idiopathic dystonia who have severe generalized dystonia, neck (cervical) dystonia or dystonic tremor when other treatment options do not work well.
The effectiveness of DBS is thought to diminish as the proportion of life with dystonia increases.
Therefore, DBS should ideally be offered early for children, preferably within a few years of the onset of symptoms.
For hereditary and idiopathic dystonia, the average DBS reduces the severity of symptoms by just over 50 percent, according to the Dystonia Society, but the experience varies greatly.
About one in five patients who receive DBS has little benefit. On the other hand, some experience symptom reduction of 80 percent or more.
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