By: Dr. Gott, The Dickinson Press
Dear Dr. Gott: About 20 years ago, I started experiencing leg aches and generalized fatigue. These symptoms almost imperceptibly but inexorably have gotten worse, to the point where my legs ache all the time. I have no endurance for walking, my knees are weak, and I have to hold onto something when going up or down stairs.
Over the years, I have sought medical help many times and have seen various specialists who have conducted tests and done blood work. They have no answers for me.
When I was 21, I had polio (I am now 60), and research on the Internet led me to the conclusion I have post-polio syndrome. However, the last neurologist I saw six months ago said she had never heard of such a thing, and no specialist has made a connection between the polio in my medical record and my current problems. Where should I go from here?
Dear Reader: To another neurologist. The National Center for Health Statistics indicates almost 450,000 polio survivors in the United States may be at risk for the condition. In fact, 25 percent to 50 percent of those previously diagnosed with polio will ultimately have some degree of post-polio syndrome (PPS) later in life.
PPS is a condition that affects polio survivors and presents 15 or more years following recovery from an attack of the polio virus. Research reveals it to be a slowly progressing condition marked by periods of stability, followed by a reduction in one’s ability to perform daily functions previously taken for granted.
Symptoms may include muscular and general fatigue, muscle atrophy, advancing muscle weakness, increased skeletal deformities (such as scoliosis) and pain from joint degeneration. The severity of disability following the original attack will commonly determine the severity of PPS. That is to say, mild symptoms the first time around will result in mild symptoms the second time. More severe symptoms the first time around will present similarly the second time.
The criteria for diagnosis of PPS include prior paralytic poliomyelitis with evidence of motor-neuron loss; residual weakness; nerve damage as documented by electromyography; partial or complete functional recovery after the acute virus, followed by a period of 15 or more years of stable neuromuscular function with or without gradual onset of new muscle weakness; muscle or joint pain; and muscle atrophy. Symptoms remain for at least one year, and other neuromuscular disorders with similar symptoms are ruled out.
Research has not been promising. Scientists have concentrated on a number of medications that have failed to provide positive results. Despite this, there are recommended management strategies. Exercise with caution, and only under the direction of a qualified therapist. Avoid activities that cause pain or fatigue lasting longer than 10 minutes. Get adequate sleep, eat healthful meals, discontinue cigarette smoking, and take over-the-counter anti-inflammatory medications for pain management. Participate in support groups or counseling.
Ask your local hospital or healthcare facility for the name of an appropriate specialist in your area. Affiliate with a physician experienced in treating neuromuscular disorders. Doctor shop until you find someone who can work with you.
To provide related information, I am sending you a copy of my Health Report “Choosing a Physician.” Other readers who would like a copy should send a self-addressed stamped No. 10 envelope and a check or money order for $2 to Newsletter, P.O. Box 167, Wickliffe, OH 44092. Be sure to mention the title.
Showing posts with label post polio syndrome. Show all posts
Showing posts with label post polio syndrome. Show all posts
09 October 2009
12 March 2009
Oxygen Therapy Is Valuable, Sometimes
By JANE E. BRODY
Published: March 9, 2009
Hyperbaric oxygen therapy was long called a treatment in search of diseases. But in recent years, laboratory and clinical studies have found more than a dozen serious diseases for which it is considered a valuable — and sometimes life-saving — treatment.
Although the administration of pure oxygen in a high-pressure chamber has been around as a therapy for more than 300 years, it is only now beginning to reach its potential, according to a report in the November issue of the journal Emergency Medicine.
At the same time, hyperbaric oxygen therapy has joined the ranks of unproven remedies for many conditions, especially incurable ones like cerebral palsy and autism. The use of the therapy in these situations often borders on quackery that exploits desperate patients and parents. One family I know spent $40,000 in a futile attempt to reverse their child’s cerebral palsy; another spent more than that and even bought a home hyperbaric unit to treat their child’s autism.
The Credibility Factor
The Undersea and Hyperbaric Medical Society, the professional organization in this field, recognizes 13 conditions for which it is legitimate to place patients in high-pressure chambers that force pure oxygen into their blood and tissues. Eleven of those conditions have been approved by Medicare for reimbursement, indicating that solid evidence supports these uses of hyperbaric oxygen.
The list includes decompression sickness (“the bends”), necrotizing fasciitis (flesh-eating disease), carbon monoxide poisoning, gas gangrene, the bone infection osteomyelitis, nonhealing wounds and delayed radiation injury to bone and soft tissue.
But nowhere in the list are cerebral palsy, autism, multiple sclerosis, stroke, macular degeneration, spinal cord injury, sports injuries, heart attack, postpolio syndrome, Lyme disease, migraine, cirrhosis, myasthenia gravis, fibromyalgia or chronic fatigue syndrome — among the dozens of conditions that independent clinics claim to treat with hyperbaric oxygen. Not to mention the claims of celebrities like Michael Jackson, who used it in the hope that it will keep him alive to 150, and Keanu Reeves, who used it for insomnia.
“Credibility is a huge problem,” said Richard E. Clarke, director of the Baromedical Research Foundation, which sponsors scientifically sound research. “We are all tarred by the same brush.”
“Although hyperbaric oxygen therapy has been suggested as beneficial in several other conditions, unfortunately, clinically valid evidence is virtually nonexistent,” he said. “This is relatively expensive and time-consuming therapy, and it makes sense to ask whether it is cost-effective and whether the benefits are long-lasting.”
Even for conditions approved by Medicare, supporting evidence is often contradictory. “A persistent criticism of hyperbaric medicine regards the lack of large-scale, multicenter, randomized studies for several of the primary indications,” noted Dr. Chris Maples and Dr. Moss Mendelson of Eastern Virginia Medical School in Norfolk, in the Emergency Medicine report. “Data are conflicting, particularly on carbon monoxide poisoning, crush injuries and some soft tissue infections. Some trials demonstrate benefit while others show no difference.”
Problems and Risks
One problem in conducting good studies is the difficulty of randomly assigning patients into treatment and control groups in a way that “blinds” them to the group they are in, Dr. Charles S. Graffeo, a specialist in hyperbaric medicine at the Eastern Virginia Medical School, said in an interview. Another problem is finding enough patients with the same condition, which is crucial in gathering statistically significant data.
Dr. Graffeo said there was “a good theoretical basis and some promising evidence that hyperbaric oxygen therapy could help treat clots on the retina, acute frostbite, recluse spider bites and thermal burns.”
“But there are just not enough scientific studies,” he said. “Conducting controlled clinical trials of hyperbaric oxygen is a bit more challenging than testing drugs.”
He cautioned patients to steer clear of independent hyperbaric centers owned by a single doctor or small medical group that is not affiliated with a major hospital or medical school. Commenting on claims commonly made by such clinics, he said: “No legitimate organization would condone treating cerebral palsy with hyperbaric oxygen therapy. I haven’t seen anything that is even potentially promising to support such a use. If I had a C.P. child, I wouldn’t even consider it.”
Furthermore, the therapy is not without risks, though most are mild and usually short-lived and there has been no documented fatality in more than 75 years of use in North America. The risks include ear and sinus pain, low blood sugar, nearsightedness that can last for weeks, and anxiety attacks resulting from confinement in the chamber. Also, the therapy is clearly dangerous for some patients, including those with a collapsed lung and those receiving chemotherapy with cisplatinum or adriamycin. The therapy may also be hazardous for pregnant women and people with poorly controlled asthma or active cancer, among others.
Established Benefits
Hyperbaric oxygen can be life-saving for patients with the bends, like divers who have surfaced too quickly. For those suffering from severe carbon monoxide poisoning, the most rigorous study so far found that three hyperbaric treatments decreased cognitive damage later. Traumas like crush injuries and thermal burns that deprive tissues of adequate oxygen also benefit from high-oxygen therapy, as do life-threatening infections called necrotizing fasciitis, if the condition is treated in its early stages, the experts in Virginia reported. The therapy may also be useful for sepsis, a potentially life-threatening bacterial infection in the blood and tissues.
Dr. Graffeo said the therapy was useful in treating diabetic foot ulcers and bone infections. It is beneficial for patients whose tissues were damaged by radiation therapy — cancer patients, for example, who can develop oxygen-deficient wounds that do not heal well. Hyperbaric oxygen promotes the release of growth hormone and helps to form blood vessels in irradiated tissue, he said.
A study published last September in the International Journal of Radiation Oncology, Biology, Physics found hyperbaric oxygen helpful for patients with radiation proctitis, which can cause bleeding, rectal ulcers and loss of bowel control. Though the costly treatment can involve as many as 40 two-hour sessions, “the net effect is reversal of the problem in the majority of patients, which in the end is cost-saving and greatly improves quality of life,” said Mr. Clarke, whose foundation sponsored the study.
Oxygen therapy is being tested in patients with new diagnoses of head or neck cancer to increase the tumor’s sensitivity to radiation treatments, Mr. Clarke said. Future studies will test benefits to patients with cancers of the larynx, skin and gynecological organs.
“The most important question to answer, in addition to cost-effectiveness,” he said, “is whether the therapeutic benefit lasts and clearly improves patients’ quality of life.”
Published: March 9, 2009
Hyperbaric oxygen therapy was long called a treatment in search of diseases. But in recent years, laboratory and clinical studies have found more than a dozen serious diseases for which it is considered a valuable — and sometimes life-saving — treatment.
Although the administration of pure oxygen in a high-pressure chamber has been around as a therapy for more than 300 years, it is only now beginning to reach its potential, according to a report in the November issue of the journal Emergency Medicine.
At the same time, hyperbaric oxygen therapy has joined the ranks of unproven remedies for many conditions, especially incurable ones like cerebral palsy and autism. The use of the therapy in these situations often borders on quackery that exploits desperate patients and parents. One family I know spent $40,000 in a futile attempt to reverse their child’s cerebral palsy; another spent more than that and even bought a home hyperbaric unit to treat their child’s autism.
The Credibility Factor
The Undersea and Hyperbaric Medical Society, the professional organization in this field, recognizes 13 conditions for which it is legitimate to place patients in high-pressure chambers that force pure oxygen into their blood and tissues. Eleven of those conditions have been approved by Medicare for reimbursement, indicating that solid evidence supports these uses of hyperbaric oxygen.
The list includes decompression sickness (“the bends”), necrotizing fasciitis (flesh-eating disease), carbon monoxide poisoning, gas gangrene, the bone infection osteomyelitis, nonhealing wounds and delayed radiation injury to bone and soft tissue.
But nowhere in the list are cerebral palsy, autism, multiple sclerosis, stroke, macular degeneration, spinal cord injury, sports injuries, heart attack, postpolio syndrome, Lyme disease, migraine, cirrhosis, myasthenia gravis, fibromyalgia or chronic fatigue syndrome — among the dozens of conditions that independent clinics claim to treat with hyperbaric oxygen. Not to mention the claims of celebrities like Michael Jackson, who used it in the hope that it will keep him alive to 150, and Keanu Reeves, who used it for insomnia.
“Credibility is a huge problem,” said Richard E. Clarke, director of the Baromedical Research Foundation, which sponsors scientifically sound research. “We are all tarred by the same brush.”
“Although hyperbaric oxygen therapy has been suggested as beneficial in several other conditions, unfortunately, clinically valid evidence is virtually nonexistent,” he said. “This is relatively expensive and time-consuming therapy, and it makes sense to ask whether it is cost-effective and whether the benefits are long-lasting.”
Even for conditions approved by Medicare, supporting evidence is often contradictory. “A persistent criticism of hyperbaric medicine regards the lack of large-scale, multicenter, randomized studies for several of the primary indications,” noted Dr. Chris Maples and Dr. Moss Mendelson of Eastern Virginia Medical School in Norfolk, in the Emergency Medicine report. “Data are conflicting, particularly on carbon monoxide poisoning, crush injuries and some soft tissue infections. Some trials demonstrate benefit while others show no difference.”
Problems and Risks
One problem in conducting good studies is the difficulty of randomly assigning patients into treatment and control groups in a way that “blinds” them to the group they are in, Dr. Charles S. Graffeo, a specialist in hyperbaric medicine at the Eastern Virginia Medical School, said in an interview. Another problem is finding enough patients with the same condition, which is crucial in gathering statistically significant data.
Dr. Graffeo said there was “a good theoretical basis and some promising evidence that hyperbaric oxygen therapy could help treat clots on the retina, acute frostbite, recluse spider bites and thermal burns.”
“But there are just not enough scientific studies,” he said. “Conducting controlled clinical trials of hyperbaric oxygen is a bit more challenging than testing drugs.”
He cautioned patients to steer clear of independent hyperbaric centers owned by a single doctor or small medical group that is not affiliated with a major hospital or medical school. Commenting on claims commonly made by such clinics, he said: “No legitimate organization would condone treating cerebral palsy with hyperbaric oxygen therapy. I haven’t seen anything that is even potentially promising to support such a use. If I had a C.P. child, I wouldn’t even consider it.”
Furthermore, the therapy is not without risks, though most are mild and usually short-lived and there has been no documented fatality in more than 75 years of use in North America. The risks include ear and sinus pain, low blood sugar, nearsightedness that can last for weeks, and anxiety attacks resulting from confinement in the chamber. Also, the therapy is clearly dangerous for some patients, including those with a collapsed lung and those receiving chemotherapy with cisplatinum or adriamycin. The therapy may also be hazardous for pregnant women and people with poorly controlled asthma or active cancer, among others.
Established Benefits
Hyperbaric oxygen can be life-saving for patients with the bends, like divers who have surfaced too quickly. For those suffering from severe carbon monoxide poisoning, the most rigorous study so far found that three hyperbaric treatments decreased cognitive damage later. Traumas like crush injuries and thermal burns that deprive tissues of adequate oxygen also benefit from high-oxygen therapy, as do life-threatening infections called necrotizing fasciitis, if the condition is treated in its early stages, the experts in Virginia reported. The therapy may also be useful for sepsis, a potentially life-threatening bacterial infection in the blood and tissues.
Dr. Graffeo said the therapy was useful in treating diabetic foot ulcers and bone infections. It is beneficial for patients whose tissues were damaged by radiation therapy — cancer patients, for example, who can develop oxygen-deficient wounds that do not heal well. Hyperbaric oxygen promotes the release of growth hormone and helps to form blood vessels in irradiated tissue, he said.
A study published last September in the International Journal of Radiation Oncology, Biology, Physics found hyperbaric oxygen helpful for patients with radiation proctitis, which can cause bleeding, rectal ulcers and loss of bowel control. Though the costly treatment can involve as many as 40 two-hour sessions, “the net effect is reversal of the problem in the majority of patients, which in the end is cost-saving and greatly improves quality of life,” said Mr. Clarke, whose foundation sponsored the study.
Oxygen therapy is being tested in patients with new diagnoses of head or neck cancer to increase the tumor’s sensitivity to radiation treatments, Mr. Clarke said. Future studies will test benefits to patients with cancers of the larynx, skin and gynecological organs.
“The most important question to answer, in addition to cost-effectiveness,” he said, “is whether the therapeutic benefit lasts and clearly improves patients’ quality of life.”
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