To China for a cure
Mar 9, 2009 by Alexandra Shimo
China is not normally considered a world leader in surgical advances, but according to a number of its doctors (and the Canadian patients they’ve treated), it has leapfrogged ahead in stem cell treatments. A growing number of people are travelling to China for a $30,000 experimental treatment: stem cell injections. Most, like New Brunswicker Jean Christophe Haas, 40, decide to go because they have a debilitating illness and there isn’t much that Western medicine can do for them.
Haas has Machado-Joseph disease (MJD), a terminal neuromuscular disease that affects the body in a similar way to Parkinson’s, paralyzing it gradually. Although he was diagnosed 20 years ago, it took some years for the symptoms to become noticeable. At first, only his sense of balance and his coordination were affected. Then his speech began to suffer and he started slurring his words. In 2004, he had to stop work as an army mechanic because his motor skills were no longer up to par and, in the past couple of years, he started seeing double. His family felt an overwhelming sense of panic, especially because Haas’s mother had the same disease, and his grandmother died of it. His desperation was compounded by the sense that Canadian doctors had given up on him completely; one told him there was nothing to do but to accept his fate of an early death, says his wife, Cherie Haas. “It’s awful for a young man with a family to go in and hear that. It’s heartbreaking.”
Ms. Haas searched the Web and found stories of other MJD patients who seemed to have been helped by stem cell therapy at various Chinese hospitals. Many of these good news stories are posted on personal blogs or on the websites of the clinics offering the treatments. There are thousands of these testimonials, suggesting that hundreds of people go every year, says Timothy Caulfield, Canada Research Chair in Health Law and Policy at the University of Alberta, who has published studies on this issue.
Advertising on the Internet, these Chinese medical centres promise to treat a surprisingly extensive range of diseases and conditions, including ALS, autism, brain injuries, cerebral palsy, epilepsy, multiple sclerosis, Parkinson’s, spinal muscular atrophy, septo-optic dysplasia (which can cause seeing difficulties, blindness and mental retardation), spinal cord injuries and stroke. Foreigners are a major source of funds for the clinics. Some doctors like Dr. Huang Hongyun, a neuroscientist at Beijing Xishan Hospital, have treated many patients from outside China, including some from Canada, and he has published a number of papers in Chinese medical journals tracking patients pre- and post-procedure. And yet some North American doctors are critical of how the data was compiled, and skeptical of the treatments on offer.
Once Jean Haas decided to go, he told his plans to Guy Rouleau, a neurologist at Centre Hospitalier de l’Université de Montréal, who said there were slight risks of complications, and that it would probably be a waste of money. But otherwise he didn’t try to dissuade him. Raising the money for the trip was easier than expected: much of the town of Oromocto, N.B., pitched in to raise the $30,000, with neighbours’ kids shovelling driveways to help out, and the military and community organizations hosting breakfasts and fundraisers. In April 2007, he and his wife travelled to Shenzhen, China, and stayed a little more than a month. During that time, Haas had six injections of stem cells into his spine, and an intense program of physiotherapy, exercise, massage and acupuncture. The results were immediate, he says—his balance improved just a few hours after the first procedure. Back in Canada, his neurologist confirmed that Haas had indeed gotten better: he had about 10 to 15 per cent more movement, according to Rouleau, who examined him before and after the trip. It’s difficult to speculate why this occurred, but Rouleau believes the intense physiotherapy was the primary cause.
When the couple returned from China, they wrote about their experience on the Web. Word got around, and soon hundreds of people were calling them, Cherie says. A couple whose husband had a similar neurodegenerative disease even drove from Quebec to see them, and the man subsequently decided to make the stem cell trip. Another couple flew in from Taber, Alta., and decided to go to China after seeing the home videos of Haas’s progress. Those gains were partly due to the attitude of Chinese doctors, Cherie believes. They would tell Haas to push himself to his limit and even try to “retrain his brain,” she explains. “We saw miracles while we were over there. We put the word out because I know this works.”
Even if patients experience gains, it’s important to determine whether they are from the treatment, the exercise program or a more positive frame of mind. Any advances could be merely the placebo effect, as people often feel better after being treated, even if the procedure hasn’t worked and the gains won’t last, explains John Steeves, a professor at the college for interdisciplinary studies at the University of British Columbia who specializes in spinal cord injuries. Finding out whether any treatment really works requires clinical trials, and although Dr. Huang has published the results of his trials in Chinese medical journals, this data does not conform to international standards of medical analysis. Indeed, Steeves believes Huang deliberately flouts these standards to help his bottom line. “Dr. Huang has no interest doing a valid clinical trial because if it doesn’t give him good results, his income would dry up immediately,” he says from his Vancouver office.
Patients, like Haas, who seem to have been helped by stem cell treatments, are often eager to share their stories. They may become advocates for the Chinese medical centres; Haas’s story is publicized on the website of the company that organized his medical tourism trip. By contrast, it’s more difficult to find people who haven’t gotten better, or are worse after spending $30,000 on an experimental procedure. This might be because they feel duped, or because the Chinese stem cell treatment emphasizes empowerment—a “you can do it attitude.” Those who can’t “do it,” who go through the rigorous training program and end up no better off, may feel unlucky, cheated, or they may take the lack of success personally and feel that they have somehow failed.
Missouri resident Jeff Carneal, 38, doesn’t feel like a failure, but having spent so much money, he is frustrated and disappointed. He lost the use of his legs when he fell off a stepladder while fixing his father’s barn. He has spent the past six years working with different doctors trying to learn to walk again, even flying to Quito, Ecuador, for an experimental operation (nerves were removed from his legs and grafted onto his spinal cord, which cost a lot, but didn’t really help). When a Maclean’s reporter first met Carneal at the Beijing Xishan Hospital after stem cell treatment, he was enthusiastic and believed the operation he’d had a couple of weeks earlier had alleviated some of the shearing leg pain he’d felt ever since his accident. But when contacted a few weeks after he returned to the United States, he was more downbeat, and said the operation hadn’t really made any difference.
Negative outcomes aren’t widely reported, but they are more common than the Chinese hospitals would have you think, says James Guest, a professor of neurological surgery at the University of Miami. He visited Huang in Beijing in the summer of 2004 to sample and test the fluid being injected into foreign patients. The results were inconclusive, he says. Following this, he went a step further, and examined spinal cord injury patients pre- and post-treatment in China. The results, published in 2006 in the journal Neurorehabilitation and Neural Repair, make clear the difference between what the doctors see and what patients want to believe. Of the seven, six thought they recovered some limb movement, although in most cases the physicians measured very little difference.
A few had concrete gains: a 19-year-old had chronic, burning back pain that eased enough for the patient to stop taking painkillers. Another patient had fewer muscle spasms after the procedure and could angle his left hand a little more, although he phoned Guest six months later to say the surgery had not made any permanent difference. On the downside, there were also post-treatment complications: a 22-year-old contracted meningitis, pneumonia and gastrointestinal bleeding, which were managed with heavy medications, and another had a fever and confusion along with a drug rash. Guest is critical of the Chinese stem cell treatments: he believes some doctors are “motivated by profits” and “they place patients at risk for therapies which have minimal effect.”
Eight months after travelling to China, Haas was struggling with the symptoms of Machado-Joseph disease. He was having problems walking and was falling again. The family still had some money left over from their fundraisers, so they decided to make another trip to China, and took out a small loan. In March 2008, he and his wife went to China, this time to Qingdao in eastern China—the first hospital wouldn’t accept them since it was now prioritizing Chinese nationals over foreigners, explains Cherie. After four weeks of treatment, Haas had more energy and there were slight improvements in his balance and speech, he says. However, the gains lasted all of two months and today he’s just as bad as before the first trip. Nevertheless, despite the costs, and the dubious rates of success, the family would like to return again if they could afford it. “I would go tomorrow if we could,” Cherie says. “It gave people hope.”
China is not normally considered a world leader in surgical advances, but according to a number of its doctors (and the Canadian patients they’ve treated), it has leapfrogged ahead in stem cell treatments. A growing number of people are travelling to China for a $30,000 experimental treatment: stem cell injections. Most, like New Brunswicker Jean Christophe Haas, 40, decide to go because they have a debilitating illness and there isn’t much that Western medicine can do for them.
Haas has Machado-Joseph disease (MJD), a terminal neuromuscular disease that affects the body in a similar way to Parkinson’s, paralyzing it gradually. Although he was diagnosed 20 years ago, it took some years for the symptoms to become noticeable. At first, only his sense of balance and his coordination were affected. Then his speech began to suffer and he started slurring his words. In 2004, he had to stop work as an army mechanic because his motor skills were no longer up to par and, in the past couple of years, he started seeing double. His family felt an overwhelming sense of panic, especially because Haas’s mother had the same disease, and his grandmother died of it. His desperation was compounded by the sense that Canadian doctors had given up on him completely; one told him there was nothing to do but to accept his fate of an early death, says his wife, Cherie Haas. “It’s awful for a young man with a family to go in and hear that. It’s heartbreaking.”
Ms. Haas searched the Web and found stories of other MJD patients who seemed to have been helped by stem cell therapy at various Chinese hospitals. Many of these good news stories are posted on personal blogs or on the websites of the clinics offering the treatments. There are thousands of these testimonials, suggesting that hundreds of people go every year, says Timothy Caulfield, Canada Research Chair in Health Law and Policy at the University of Alberta, who has published studies on this issue.
Advertising on the Internet, these Chinese medical centres promise to treat a surprisingly extensive range of diseases and conditions, including ALS, autism, brain injuries, cerebral palsy, epilepsy, multiple sclerosis, Parkinson’s, spinal muscular atrophy, septo-optic dysplasia (which can cause seeing difficulties, blindness and mental retardation), spinal cord injuries and stroke. Foreigners are a major source of funds for the clinics. Some doctors like Dr. Huang Hongyun, a neuroscientist at Beijing Xishan Hospital, have treated many patients from outside China, including some from Canada, and he has published a number of papers in Chinese medical journals tracking patients pre- and post-procedure. And yet some North American doctors are critical of how the data was compiled, and skeptical of the treatments on offer.
Once Jean Haas decided to go, he told his plans to Guy Rouleau, a neurologist at Centre Hospitalier de l’Université de Montréal, who said there were slight risks of complications, and that it would probably be a waste of money. But otherwise he didn’t try to dissuade him. Raising the money for the trip was easier than expected: much of the town of Oromocto, N.B., pitched in to raise the $30,000, with neighbours’ kids shovelling driveways to help out, and the military and community organizations hosting breakfasts and fundraisers. In April 2007, he and his wife travelled to Shenzhen, China, and stayed a little more than a month. During that time, Haas had six injections of stem cells into his spine, and an intense program of physiotherapy, exercise, massage and acupuncture. The results were immediate, he says—his balance improved just a few hours after the first procedure. Back in Canada, his neurologist confirmed that Haas had indeed gotten better: he had about 10 to 15 per cent more movement, according to Rouleau, who examined him before and after the trip. It’s difficult to speculate why this occurred, but Rouleau believes the intense physiotherapy was the primary cause.
When the couple returned from China, they wrote about their experience on the Web. Word got around, and soon hundreds of people were calling them, Cherie says. A couple whose husband had a similar neurodegenerative disease even drove from Quebec to see them, and the man subsequently decided to make the stem cell trip. Another couple flew in from Taber, Alta., and decided to go to China after seeing the home videos of Haas’s progress. Those gains were partly due to the attitude of Chinese doctors, Cherie believes. They would tell Haas to push himself to his limit and even try to “retrain his brain,” she explains. “We saw miracles while we were over there. We put the word out because I know this works.”
Even if patients experience gains, it’s important to determine whether they are from the treatment, the exercise program or a more positive frame of mind. Any advances could be merely the placebo effect, as people often feel better after being treated, even if the procedure hasn’t worked and the gains won’t last, explains John Steeves, a professor at the college for interdisciplinary studies at the University of British Columbia who specializes in spinal cord injuries. Finding out whether any treatment really works requires clinical trials, and although Dr. Huang has published the results of his trials in Chinese medical journals, this data does not conform to international standards of medical analysis. Indeed, Steeves believes Huang deliberately flouts these standards to help his bottom line. “Dr. Huang has no interest doing a valid clinical trial because if it doesn’t give him good results, his income would dry up immediately,” he says from his Vancouver office.
Patients, like Haas, who seem to have been helped by stem cell treatments, are often eager to share their stories. They may become advocates for the Chinese medical centres; Haas’s story is publicized on the website of the company that organized his medical tourism trip. By contrast, it’s more difficult to find people who haven’t gotten better, or are worse after spending $30,000 on an experimental procedure. This might be because they feel duped, or because the Chinese stem cell treatment emphasizes empowerment—a “you can do it attitude.” Those who can’t “do it,” who go through the rigorous training program and end up no better off, may feel unlucky, cheated, or they may take the lack of success personally and feel that they have somehow failed.
Missouri resident Jeff Carneal, 38, doesn’t feel like a failure, but having spent so much money, he is frustrated and disappointed. He lost the use of his legs when he fell off a stepladder while fixing his father’s barn. He has spent the past six years working with different doctors trying to learn to walk again, even flying to Quito, Ecuador, for an experimental operation (nerves were removed from his legs and grafted onto his spinal cord, which cost a lot, but didn’t really help). When a Maclean’s reporter first met Carneal at the Beijing Xishan Hospital after stem cell treatment, he was enthusiastic and believed the operation he’d had a couple of weeks earlier had alleviated some of the shearing leg pain he’d felt ever since his accident. But when contacted a few weeks after he returned to the United States, he was more downbeat, and said the operation hadn’t really made any difference.
Negative outcomes aren’t widely reported, but they are more common than the Chinese hospitals would have you think, says James Guest, a professor of neurological surgery at the University of Miami. He visited Huang in Beijing in the summer of 2004 to sample and test the fluid being injected into foreign patients. The results were inconclusive, he says. Following this, he went a step further, and examined spinal cord injury patients pre- and post-treatment in China. The results, published in 2006 in the journal Neurorehabilitation and Neural Repair, make clear the difference between what the doctors see and what patients want to believe. Of the seven, six thought they recovered some limb movement, although in most cases the physicians measured very little difference.
A few had concrete gains: a 19-year-old had chronic, burning back pain that eased enough for the patient to stop taking painkillers. Another patient had fewer muscle spasms after the procedure and could angle his left hand a little more, although he phoned Guest six months later to say the surgery had not made any permanent difference. On the downside, there were also post-treatment complications: a 22-year-old contracted meningitis, pneumonia and gastrointestinal bleeding, which were managed with heavy medications, and another had a fever and confusion along with a drug rash. Guest is critical of the Chinese stem cell treatments: he believes some doctors are “motivated by profits” and “they place patients at risk for therapies which have minimal effect.”
Eight months after travelling to China, Haas was struggling with the symptoms of Machado-Joseph disease. He was having problems walking and was falling again. The family still had some money left over from their fundraisers, so they decided to make another trip to China, and took out a small loan. In March 2008, he and his wife went to China, this time to Qingdao in eastern China—the first hospital wouldn’t accept them since it was now prioritizing Chinese nationals over foreigners, explains Cherie. After four weeks of treatment, Haas had more energy and there were slight improvements in his balance and speech, he says. However, the gains lasted all of two months and today he’s just as bad as before the first trip. Nevertheless, despite the costs, and the dubious rates of success, the family would like to return again if they could afford it. “I would go tomorrow if we could,” Cherie says. “It gave people hope.”
Labels: Acupuncture, ALS, Autism, back pain, Balance, blindness, brain injuries, Cerebral Palsy, epilepsy, mental retardation, multiple sclerosis, Parkinson’s, Physiotherapy, septo-optic dysplasia, spinal cord injuries, spinal muscular atrophy, Stem cell
21 August 2008
Clever cerebral palsy treatment gets kids back on their feet
Children with cerebral palsy at a specialist center in Shanghai get intensive treatment that combines Chinese and Western methods. The program is developed by Shanghai women Lu Shunling and works with children as young as one year old.
AN inventive treatment method - devised by a Shanghai woman and combining some of the best ideas from China and abroad - is helping to get young cerebral palsy sufferers moving towards a better life, writes Sam Riley.A unique program using traditional Chinese medicine and massage is giving young cerebral palsy sufferers a chance to lead an independent life.Developed by Lu Shunling - who has battled the debilitating disorder that leaves sufferers unable to control their muscles and movement - the program has had a dramatic effect, allowing once bedridden children to lead relatively normal lives.
The program at the CereCare Wellness Center for Children in Shanghai's Xuhui District involves regular acupressure massage and was developed by the 70-year-old Lu when she was a young woman after conventional treatment for CP had failed.Acupressure is an ancient form of healing similar to acupuncture but where no needles are used.Lu's sister Iris Sung, a director at the center, says Lu found the acupressure massage and traditional Chinese medicine worked very well on her, so she learned and adapted a treatment program to help other CP sufferers."They didn't know my sister had cerebral palsy until she was 18 and she underwent all types of very painful treatment. But she found acupressure to be the best," Sung says. "Seven acupressurists became her teachers and she learned the best from everyone.
Then she developed her own style and program of acupressure which is really effective."The treatment, along with an education program that involves rehabilitation, aims to loosen the joints and muscles, allowing children to better control their movements.The CereCare Wellness Center treats 32 children between the ages of one and 12. In addition to physical therapies, the center also provides basic education classes with the aim that the children will eventually be at the stage where they can attend a normal school.Cerebral palsy is one of the most common childhood disorders that is caused by damage to one or more specific areas of the brain, usually during fetal development, or before the child is three years of age. The damage to areas in the brain governing movement disrupts the brain's ability to control movement and posture.
Many CP sufferers do not suffer a mental disability and with early physical rehabilitation can go on to live normal lives."Some of the children we have at our center are very smart so it is important they receive the right early treatment so they can go to a normal school and fulfill their potential," Sung says.The earlier a child with CP receives regular rehabilitation, the better their prospects of being self sufficient, she says.The children live at the center full-time so they can undergo consistent and intense rehabilitation which includes three sessions a week of acupressure massage.
The aim of the massage is to relax the children so acupuncture needles are not used and instead the therapist applies pressure to points that coincide with major organs in the body."Our purpose is to relax them so we just use acupressure and we sing, talk and tell them stories so they are not scared," Sung says."If a child has CP, the internal organs must also be very tight and not functioning properly. So for the first couple of months we focus on fixing the internal organs through the massage. "This improves their appetite, allows them to absorb nutrition and build their muscles and then we work on their rehabilitation."The children also receive what is known as "conductive education," using a process of basic classes and physical rehabilitation developed in Hungary.The combination of TCM and massage program and the Hungarian rehabilitation system has been so successful that some former students at the center now work there as therapists helping the next generation of children with CP.
Sung says the center is the last hope for many parents who mistakenly believed there was nothing that could be done for their child.The center is a non-profit organization but the cost of full-time care for a child is approximately 3,000 yuan (US$437) per semester. With many parents unable to meet the full cost, Sung says sponsorship is vital.Sponsors can directly sponsor a child and the center has held a number of events where sponsors can meet their child and see their progress. Last week the center held a yoga workshop with the children, at Y+ Yoga Center in Xintiandi. The event was designed to raise awareness of CP as well as provide therapeutic benefits for the children, with yoga and stretching helping to relax their muscles.This week the center also held a sports day where children with CP partnered with an able-bodied child to compete in a range of events.
Sung says the center is always looking for volunteers to assist in a range of day-to-day activities.Mette Strand is a Norwegian medical student who has spent six months volunteering at the center.The 19-year-old says she started helping with simple tasks such as helping with feeding but once she was better trained, she began teaching basic classes, including English."When I arrived I was working with some children who could not stand, and to see them take their first steps and now to see them walking is fantastic. Their progress is very inspiring," she says.
For more information on CereCare Wellness Center call 5349-4313, ext 26 (Chinese only) or email the center via its Website at www.cerecare.net.
The program at the CereCare Wellness Center for Children in Shanghai's Xuhui District involves regular acupressure massage and was developed by the 70-year-old Lu when she was a young woman after conventional treatment for CP had failed.Acupressure is an ancient form of healing similar to acupuncture but where no needles are used.Lu's sister Iris Sung, a director at the center, says Lu found the acupressure massage and traditional Chinese medicine worked very well on her, so she learned and adapted a treatment program to help other CP sufferers."They didn't know my sister had cerebral palsy until she was 18 and she underwent all types of very painful treatment. But she found acupressure to be the best," Sung says. "Seven acupressurists became her teachers and she learned the best from everyone.
Then she developed her own style and program of acupressure which is really effective."The treatment, along with an education program that involves rehabilitation, aims to loosen the joints and muscles, allowing children to better control their movements.The CereCare Wellness Center treats 32 children between the ages of one and 12. In addition to physical therapies, the center also provides basic education classes with the aim that the children will eventually be at the stage where they can attend a normal school.Cerebral palsy is one of the most common childhood disorders that is caused by damage to one or more specific areas of the brain, usually during fetal development, or before the child is three years of age. The damage to areas in the brain governing movement disrupts the brain's ability to control movement and posture.
Many CP sufferers do not suffer a mental disability and with early physical rehabilitation can go on to live normal lives."Some of the children we have at our center are very smart so it is important they receive the right early treatment so they can go to a normal school and fulfill their potential," Sung says.The earlier a child with CP receives regular rehabilitation, the better their prospects of being self sufficient, she says.The children live at the center full-time so they can undergo consistent and intense rehabilitation which includes three sessions a week of acupressure massage.
The aim of the massage is to relax the children so acupuncture needles are not used and instead the therapist applies pressure to points that coincide with major organs in the body."Our purpose is to relax them so we just use acupressure and we sing, talk and tell them stories so they are not scared," Sung says."If a child has CP, the internal organs must also be very tight and not functioning properly. So for the first couple of months we focus on fixing the internal organs through the massage. "This improves their appetite, allows them to absorb nutrition and build their muscles and then we work on their rehabilitation."The children also receive what is known as "conductive education," using a process of basic classes and physical rehabilitation developed in Hungary.The combination of TCM and massage program and the Hungarian rehabilitation system has been so successful that some former students at the center now work there as therapists helping the next generation of children with CP.
Sung says the center is the last hope for many parents who mistakenly believed there was nothing that could be done for their child.The center is a non-profit organization but the cost of full-time care for a child is approximately 3,000 yuan (US$437) per semester. With many parents unable to meet the full cost, Sung says sponsorship is vital.Sponsors can directly sponsor a child and the center has held a number of events where sponsors can meet their child and see their progress. Last week the center held a yoga workshop with the children, at Y+ Yoga Center in Xintiandi. The event was designed to raise awareness of CP as well as provide therapeutic benefits for the children, with yoga and stretching helping to relax their muscles.This week the center also held a sports day where children with CP partnered with an able-bodied child to compete in a range of events.
Sung says the center is always looking for volunteers to assist in a range of day-to-day activities.Mette Strand is a Norwegian medical student who has spent six months volunteering at the center.The 19-year-old says she started helping with simple tasks such as helping with feeding but once she was better trained, she began teaching basic classes, including English."When I arrived I was working with some children who could not stand, and to see them take their first steps and now to see them walking is fantastic. Their progress is very inspiring," she says.
For more information on CereCare Wellness Center call 5349-4313, ext 26 (Chinese only) or email the center via its Website at www.cerecare.net.
Labels: Acupuncture, Cerebral Palsy
15 August 2008
North Mother spends life savings to cure spine condition
NHS refused £35,000 operation
FIGHTING FIT: Marjory Muir has seen a vast improvement since surgery which doctors refused her.
A north mother was forced to spend almost £35,000 on surgery after NHS medics told her they could do nothing to fix her curved spine.
During seven years of ineffective treatment, including physiotherapy, acupuncture and painful nerve-route injections, Marjory Muir, 47, of Wellside Road, Balloch, near Inverness, was never once referred to an expert in adult scoliosis.
When she inquired about surgery to relieve her of the crippling pain in her back, one orthopaedics specialist warned her it was too risky and “no one in the UK will touch you”.
But 18 months after a six-hour operation in London, Mrs Muir, who was 5ft before the surgery, now claims to have grown two inches and dropped two dress sizes around her waist.
She claims her high blood pressure has been controlled, her digestive problems are “vastly improved” and she is no longer in constant pain down the left side of her body.
The human resources director with Tulloch Homes Group now wants to push the Scottish Government to fund a dedicated adult scoliosis expert north of the border.
Mrs Muir believes she is one of at least 100 adult scoliosis sufferers in Scotland, but surgeons expert in the illness in Scotland operate only on children.
The mother-of-one was diagnosed with idiopathic scoliosis after complaining of back pain to her doctor when she was 25. After having her son eight years ago, her health deteriorated significantly.
“I was scrunched up, I had a hump on my back and my shoulders were down,” Mrs Muir said. It also left her with a constant pain down her left-hand side and severe sciatica in both legs.
In 2006, after years of treatments, her doctors admitted defeat. But she soon discovered adults in other parts of the UK were being offered surgery for the same condition.
In January 2007, London surgeon Stewart Tucker operated on her, de-rotating her rib cage and her spine, and inserting two titanium rods, 15 screws and three hooks. Mrs Muir now has a scar from the nape of her neck to the bottom of her back.
She used her savings to pay for the operation. The surgery itself cost just £3,000 but the anaesthetic cost £1,500, and the hospital costs amounted to £30,000.
Mrs Muir insisted it was money well spent. “It’s made a vast difference to my overall health. I had high blood pressure and quite a lot of difficulty getting it under control.
“They didn’t connect it with scoliosis. I was squashed up inside. I had digestive problems, which have vastly improved because everything has been given space inside.”
Mrs Muir is now surveying other adults with scoliosis in Scotland for a report for Highland MSP Dave Thompson who has pledged to raise it with the government.
Mr Thompson said: “This is obviously an issue of great concern to people suffering from this debilitating condition and their families and I applaud Marjory's campaigning efforts to secure better services for them. I’m happy to assist those efforts by raising this important issue with the Scottish Government.”
A government spokesman said: “Although we cannot comment on individual cases, we would always expect patients to be offered the most appropriate treatment. In deciding a particular course of treatment, clinicians must use their professional judgment to identify the most suitable treatment.”
FIGHTING FIT: Marjory Muir has seen a vast improvement since surgery which doctors refused her.
A north mother was forced to spend almost £35,000 on surgery after NHS medics told her they could do nothing to fix her curved spine.
During seven years of ineffective treatment, including physiotherapy, acupuncture and painful nerve-route injections, Marjory Muir, 47, of Wellside Road, Balloch, near Inverness, was never once referred to an expert in adult scoliosis.
When she inquired about surgery to relieve her of the crippling pain in her back, one orthopaedics specialist warned her it was too risky and “no one in the UK will touch you”.
But 18 months after a six-hour operation in London, Mrs Muir, who was 5ft before the surgery, now claims to have grown two inches and dropped two dress sizes around her waist.
She claims her high blood pressure has been controlled, her digestive problems are “vastly improved” and she is no longer in constant pain down the left side of her body.
The human resources director with Tulloch Homes Group now wants to push the Scottish Government to fund a dedicated adult scoliosis expert north of the border.
Mrs Muir believes she is one of at least 100 adult scoliosis sufferers in Scotland, but surgeons expert in the illness in Scotland operate only on children.
The mother-of-one was diagnosed with idiopathic scoliosis after complaining of back pain to her doctor when she was 25. After having her son eight years ago, her health deteriorated significantly.
“I was scrunched up, I had a hump on my back and my shoulders were down,” Mrs Muir said. It also left her with a constant pain down her left-hand side and severe sciatica in both legs.
In 2006, after years of treatments, her doctors admitted defeat. But she soon discovered adults in other parts of the UK were being offered surgery for the same condition.
In January 2007, London surgeon Stewart Tucker operated on her, de-rotating her rib cage and her spine, and inserting two titanium rods, 15 screws and three hooks. Mrs Muir now has a scar from the nape of her neck to the bottom of her back.
She used her savings to pay for the operation. The surgery itself cost just £3,000 but the anaesthetic cost £1,500, and the hospital costs amounted to £30,000.
Mrs Muir insisted it was money well spent. “It’s made a vast difference to my overall health. I had high blood pressure and quite a lot of difficulty getting it under control.
“They didn’t connect it with scoliosis. I was squashed up inside. I had digestive problems, which have vastly improved because everything has been given space inside.”
Mrs Muir is now surveying other adults with scoliosis in Scotland for a report for Highland MSP Dave Thompson who has pledged to raise it with the government.
Mr Thompson said: “This is obviously an issue of great concern to people suffering from this debilitating condition and their families and I applaud Marjory's campaigning efforts to secure better services for them. I’m happy to assist those efforts by raising this important issue with the Scottish Government.”
A government spokesman said: “Although we cannot comment on individual cases, we would always expect patients to be offered the most appropriate treatment. In deciding a particular course of treatment, clinicians must use their professional judgment to identify the most suitable treatment.”
Labels: Acupuncture, back pain, Physiotherapy, Scoliosis
27 July 2008
My Visit
It is the day after, and I visited my new homeopathic doctor. Had a consultation, and an acupuncture treatment. I was also given some homework assignments to do and tasks to perform. In addition, I was given some new guidelines and instructions as to what foods I aught to be eating now. To be honest with myself, after I came home and had dinner, I began to anguish and have a panic attack over it, but then I told myself...the doctor knows more than you! Your way has not worked, nor the latest way so be open-minded and try his that's when I began to calm down, and find peace and acceptance within my soul and being.
I have been reading and learning all kinds of new things. I am also more in tune and am listening even more closely to my life's note, issues, and events, as I let go of my past one at a time. No more of hanging on to certain ideas and old thoughts that hurt and wounded me Gone they are! As I believe in the birthright to live, love, renew my inner soul's intentions, rejuvenate my spirit and physical body, along with its simple beauties. I truly want to see and recognize my own glory, as I rebuild my physical body to health.
I have been reading and learning all kinds of new things. I am also more in tune and am listening even more closely to my life's note, issues, and events, as I let go of my past one at a time. No more of hanging on to certain ideas and old thoughts that hurt and wounded me Gone they are! As I believe in the birthright to live, love, renew my inner soul's intentions, rejuvenate my spirit and physical body, along with its simple beauties. I truly want to see and recognize my own glory, as I rebuild my physical body to health.
Labels: Acupuncture, learning