Monthly Archives: June 2007

Marine Suffers From Debilitating Illness


Marine Suffers From Debilitating Illness

Lesley Van Arsdall
Reporting

(CBS 3) FAIRLESS HILLS, Pa. A fundraiser is planned Saturday for a former Marine from Bucks County waging a tough medical battle. His best hope right now is a trip to Germany — a trip that is financially out of reach.

Moke Kahalehoe has been diagnosed with RSD or Reflex Sympathetic Dystrophy. Because of it, he is in constant pain.

“The clothing I’m wearing right now causes is extreme burning, feels like a stabbing sensation, like lava with knives running through my body,” Kahalehoe said.

“I can maybe take a shower once every four days. The water is excruciating. Every drop feels like a knife,” he continued.

RSD can remain dormant in people for years and is usually discovered after a person is injured. For Kahalehoe, that injury came shortly after joining the Marines in 2005 when he fractured his ankle during a routine training exercise. His doctor said his only chance for a cure is an experimental treatment in Germany which will put him in a coma for up to a week.

“He says my RSD is so severe and progressing so fast he needs to get me to Germany,” Kahalehoe said.

Kahalehoe lives with his girlfriend Amanda Santacroce. They met when they were both in the Marines. She has since been honorably discharged after she was diagnosed with Multiple Sclerosis.

“I lost all my vision in my right eye while stationed with the Marines, and the V.A. discharged me with a pre-existing condition so I don’t have any coverage right now,” Santacroce said.

In addition to the couple’s medical costs, they are trying to raise almost $200,000 for Kahalehoe to travel to Germany.

Right now, it is his only hope.

“I’ve exhausted every possibility here in the U.S., the only one left is in Germany,” Kahalehoe said.

To help with medical costs and the trip to Germany, family and friends are holding a fundraiser for Kahalehoe this Saturday, June 30 at the Fraternal Order of Eagles, 920 Trenton Road, Fairless Hills, PA 19030. Tickets are $25 each.

Kahalehoe has also set up a fund at Commerce Bank in Fairless Hills. To contribute, make checks payable to “Benefit for Moke Kahalehoe”. Send it to Commerce Bank at 624 S. Oxford Valley Road, Fairless Hills, PA 19030. Donations can also be made in person at the bank. The bank’s phone number is (215) 946-2841.


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Rare diseases not simple for most docs to diagnose

Over 30 million Americans suffer from uncommon ailments

By Suzanne Bohan, STAFF WRITER


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The adage reflects a core tenet of the art of medical diagnoses: It’s more productive to first assume common diseases are the cause of most patients’ symptoms, rather than exotic disorders.

That medical mindset was evident when Kaycee Antosiak, a vivacious 12-year-old Los Altos girl, sought treatment for her crippling pain after a dog bite. While the bite healed in six weeks, excruciating pain set in, leading the active girl to collapse after a dance class. She then began using crutches and finally a wheelchair.

During that time, she visited dozens of medical experts, none of whom could determine the cause of her increasing infirmity.

Three months after the dog attack, she was referred to a Stanford University physician, Dr. Elliot Krane, who correctly diagnosed her as afflicted with a rare genetic disease called complex regional pain syndrome. The condition causes excruciating chronic pain, long after the generally minor injury that triggered it healed.

“These patients think their foot is immersed in boiling water all of the time,” said Krane, a pediatric anesthesiologist at Lucile Packard Children’s Hospital, who last week at Stanford led the first conference worldwide to seek faster diagnoses and better treatment of the condition.

“It just ruins the lives of these kids. The typical kid is in a wheelchair,” Krane said. Their limbs, he added, are often blue and cold to the touch from misfiring nerve cells.

Before Kaycee visited Krane, she said, some doctors had suggested the pain was in her head.

“I told my parents, ‘I don’t think I’m crazy. My ankle really hurts,'” Kaycee recalled. Her mother, Donna Antosiak, speaks with a tone of shock at the memory of that time.

“She was screaming, ‘Mommy, mommy, it hurts, it hurts!'” said Antosiak. “I was going out of my mind.”

With the extraordinary challenge of diagnosing these uncommon conditions, and medical training that encourages doctors to focus on familiar causes of disease, most patients with rare disorders run through a gauntlet of doctors before — for the lucky ones — they end up referred to the unique physician with the knowledge to correctly pinpoint their disorder.

“I can’t think of a single patient I’ve seen within a month of their onset of symptoms,” Krane said.

“Sometimes it’s a year and they’re unable to walk,” he added. Krane recognized within minutes the disease afflicting Kaycee when he first saw her in November 2005 and immediately started her on treatment.

Although one doctor told her she’d never walk again, today the 12-year-old is back in dance class and plans on attending several camps this summer, including ones for acting, speech, volleyball and Irish dance. Occasionally, she said, her ankle still aches and she’s aware she’s vulnerable for life from the condition, absent the development of a treatment that permanently ends the pain.

While only a few hundred other Americans suffer from the condition, Kaycee and others with complex regional pain syndrome are among the ranks of the 30 million Americans suffering from one of the nearly

7,000 known rare diseases, according to Dr. Steven Groft, director of the Office of Rare Diseases at the National Institutes of Health.

The NIH defines a rare disease as one affecting 200,000 or fewer Americans.

They carry strange names like Madelung’s disease, which causes abnormal fat accumulation around the neck and shoulders; Kufs disease, a neurological disorder that mimics a mental illness; or the horrific fibrodysplasia ossificans progressive, which causes muscle tissue and ligaments to turn to bone, encasing the afflicted in bone.

The prevalence of those living with these unusual conditions numerically rivals the 40 million Americans with one or more of the three major diseases: heart disease, cancer or diabetes.

The number of patients identified with a rare disease also is expected to swell with expanding knowledge of the human genome, said Groft. Rare diseases are usually attributed to genetics. In fewer cases, they’re caused by infectious agents like viruses or bacteria.

“What we’re finding is that as more information becomes available, there are more and more patients who have the rare disorder,” Groft said. “With the arrival of the Internet, people started putting the pieces together better.”

And physicians committed to researching and providing treating for one of these strange maladies often push into medical frontiers to improve the lives of their patients.

The Stanford conference on complex regional pain syndrome, held May 30 and May 31, drew dozens of experts from a variety of disciplines. The conference yielded a consensus paper on better diagnoses and optimal treatment for the condition, which emphasizes physical therapy with the use of pain medications to ease the initial agony of exercise, the same therapy Krane used with Kaycee. Krane said the statement will be published in a leading pediatric medical journal.

These kinds of conferences are vital for improving the medical profession’s track record for diagnosing unique diseases, said Groft. And even though doctors often have few if any treatments to offer, the diagnosis allows patients and their families to band with others with the condition to seek the best treatments and advocate for research.

“Many advocacy groups can help patients live a little better life,” said Groft.

Furthermore, the NIH budget for rare disease research is robust, he added. Of the $29 billion awarded by the NIH last year for medical research grants, $4 billion, or 18 percent, went to studying rare diseases. The grants often fund clinical trials that give patients with few or no options a chance to try potential treatments, Groft emphasized.

“That’s one of the messages we’d like to get out,” he said. “People can get information on on-going clinical studies, as well as completed ones. So there can be hope for people with rare diseases.”

Krane pointed hopefully to a future in which genetic tests of blood samples will quickly provide answers to the questions that now vex physicians encountering patients with mysterious ailments.

“Thirty years from now,” he speculated, “all that work is going to be done for us. Someone is going to plug some blood into a gene array and the answer will pop out.”

Until and if such swift diagnoses of rare diseases come to pass, Groft said those with disorders that defy treatment can best cope with their frustration and fear by seeking access to specialists.

“No one can be expected to know that many disorders,” he said of the rare diseases so far identified. “We encourage patients to be referred upward in the medical system to specialists.”

Kaycee and her mother consider themselves extraordinarily fortunate to have found Krane and to have the funds for the medical costs.

Donna Antosiak calls Krane “my favorite person in the whole wide world,” while Kaycee said she doubts she would be walking today without his treatment.

“I probably would have gone crazy from the pain,” she said.

As for those with less access to sophisticated medical care or with fewer financial resources, Kaycee shuddered to consider their fate: “I wouldn’t want to find out what happens to them,” she said.

For information on NIH-approved clinical trials for treatments for rare diseases, visit http://www.clinicaltrials.gov.

Contact Suzanne Bohan at sbohan@angnewspapers.com or (650) 348-4324.




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Ex-49er suing over league’s disability plan


San Francisco Chronicle

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Ex-49er suing over league’s disability plan

Thursday, June 28, 2007


Ex-49ers and Cal offensive lineman Ben Lynch is suing the NFL’s and player union’s joint disability plan. Lynch and his attorney, Cy Smith, filed the suit Wednesday, one day after four former NFL players testified about the board’s inadequacies in Congress.

The former center/guard, who played mainly as a backup for the 49ers from 1999 through 2002, sustained an anterior cruciate ligament tear Aug. 23, 2003, while in the Houston Texans’ training camp.

During a subsequent surgery to replace the torn ligament, Lynch developed a staph infection.

The infected ligament was removed, and in the five surgeries that followed, Lynch contracted complex regional pain syndrome.

“I would get this wild, burning pain just sitting around watching television,” Lynch said. He had his sixth surgery in an effort to relieve the pain Wednesday. Lynch feels excruciating pain and can walk only about 200 yards at a time.

On Sept. 29 of last year, Lynch sent an appeal to the NFL and the players’ union joint disability board for benefits. As of Wednesday morning, he hadn’t heard from the board. Lynch and his attorney are filing the suit under the Employee Retirement Income Security Act, which requires the board to respond in a timely manner.

“They haven’t made a decision,” Lynch said. “We just wanted to turn to the courts to see if we have a valid disability claim.”

Former Viking Brent Boyd, who has brain damage, former Raiders lineman Curt Marsh, who had his leg amputated after a botched surgery, former Giants Hall of Fame linebacker Harry Carson, who has post-concussion syndrome and former Bears coach Mike Ditka, an advocate for retired players, testified Tuesday before a congressional committee.

Most of their complaints were against the disability board, which often rejects claims for benefits. The six-member Pete Rozelle/Bert Bell Retirement Board has three representatives from the union and three from the NFL.

The NFL and the players’ union couldn’t be reached for comment.

E-mail Kevin Lynch at klynch@sfchronicle.com.

This article appeared on page D – 3 of the San Francisco Chronicle





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Painful children’s disease gets experts’ attention


Painful children’s disease gets experts’ attention

Thu May 31, 2007 6:13PM BST

By Michael Kahn

STANFORD, California (Reuters) – A potentially crippling disease in which the slightest touch of the skin can cause intense pain is often misdiagnosed in children, needlessly leaving some young patients in wheelchairs or on crutches, pediatric experts said.

More is known about Complex Regional Pain Syndrome in adults but an apparent increase in the number of young patients is putting pressure on doctors to find ways to better identify and treat the rare disease, said Dr. Elliot Krane, a professor of pediatrics at Stanford University.

Primary care pediatricians often know little or nothing about the condition and may miss it because they deal with such a wide range of illnesses in young patients, experts told a conference on the excruciating condition.

Krane said the gathering marked the first time pediatric experts on the disease — formerly know as Reflex Sympathetic Dystrophy Syndrome — were meeting to pool their knowledge.

“It is one of these diseases where you have experts in pain management in kids across the country who all see a smattering of cases but none of us get a large enough experience to see what is going to work and what won’t,” said Krane, who is also the director of the pain management program at Lucile Packard Children’s Hospital at Stanford.

“The frustration is that the knowledge base in children is not evidence based — it is extremely anecdotal.”

The disease likely affects more than 200,000 Americans, including an unknown number of children, said Jim Broatch, the executive director of the Reflex Sympathetic Dystrophy Syndrome Association of America.

He added most research has focused on adults.

Krane said the condition often follows an injury such as a sprained ankle when nerves start firing pain messages to the brain. At some point, however, the nerve activity essentially takes on a life of its own and pain messages keep getting sent.

“The pain is intense, unbearable and crippling,” Krane said at the two-day conference ending on Thursday. “People cannot function with that kind of pain.”

KIDS IN WHEELCHAIRS

A key to treating the condition is intense physical therapy, and doctors often administrator nerve blocks to diminish pain so patients can work to reactivate the nervous system and use of a limb.

The pain often goes away with proper treatment but if left alone the disease can leave children in wheelchairs and with skin so hypersensitive that the simple task of putting on sock or shoe can trigger intense pain, Krane added.

Jon Levine, a professor of medicine at the University of California San Francisco, said doctors tend to misdiagnose the disease more in children in part because of the way the U.S. health-care system works.

While adults often head straight to a specialist more likely to be familiar with the condition, children rely on primary pediatricians who often misdiagnose a disease they know little about, Levine said.

This makes it critical to begin developing guidelines for standard of care treatment pediatricians can look to, Levine said. It is also important to educate doctors that this is a real problem, not a psychological one as many diagnose, he added.

“It is a real disease and these kids are in a lot of pain,” he said.





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OHS teacher says students taught him a lot


OHS teacher says students taught him a lot

ONEIDA – It was standing room only at the 123rd commencement ceremony at Oneida High School Saturday.

Gathered family and friends cheered and applauded as the 168 graduates were led around the circle by the Mohawk Valley Frasers.

The Class of 2007 chose English teacher Dewayne Cronk to be the faculty speaker.

“I get a chance to learn as much from the kids as they do from me,” Cronk said. He joked that students taught him how to download music for free, legally. “There are so many talented and bright kids in the Class of 2007. It reaffirms my faith in the younger generations.”

He encouraged the graduates to pursue education, whether it be by attending college or by participating in on-the-job training or by going into the military.

Cronk told the graduates how the school’s former custodian, Jack Hall, who died of cancer recently, went back to school to earn a high school diploma.

“The fact that a man of Mr. Hall’s age felt the need to go back and earn his high school diploma, speaks to the power and value of an education,” he said.

Superintendent Ronald Spadafora agreed that the value of an education is great.

“Just by getting here today your lifetime earning potential increased by $1 million,” he said.

Graduates’ paths after high school vary with some joining the military, some going to college and others jumping right into the workforce.

“Let us consider the myriad of possibilities out there to be discovered,” said Valedictorian Zachary Lynch.

Misty Buell, 18, plans on following her brother’s footsteps and serving her country. He is in the Air Force and she will be joining the U.S. Marine Corps. Her goal is to pursue aviation.

“I was the only girl in all of my tech courses,” she said. “I don’t really feel like paying a fortune to go to college.”

Katie Sheridan, 17, will be attending the University of Scranton in Pennsylvania to study biology.

“I want to do something in medicine,” she said. But if that doesn’t work out, “University of Scranton has a really good occupational therapy program.”

Sheridan said she would miss her friends the most.

Rachel Donaldson, 18, will be attending SUNY Cortland where she will major in childhood education and special education.

Donaldson said growing up she and Sheridan wanted to be marine biologists and “that dream just kind of died.”

Like Sheridan, Katie Wartella, 18, will be going out of state to attend Springfield College in Massachusetts. She plans on studying occupational therapy.

“I’ve lived here all my life, knowing that next fall I’m not going to be back here is sad,” she said. But she plans on coming back. “I want to move back to Oneida.”

Wartella wants to take after her mother, who is a nurse, and work in the healthcare industry. Maybe even at Oneida Healthcare Center.

“My mom’s a nurse. I’ve always seen how hard she works and never wanted to be in healthcare. Now, I am looking forward to being in healthcare,” she said.

Aaron Winn, 18, plans to join the workforce immediately. He wants to stay in the Oneida area and said he may decide to attend college in the future.

Hope Johnson, 18, has been home-tutored since 9th grade due to a condition called RSDS, or Reflexive Sympathetic Dystrophy Syndrome.

“It affects the sympathetic nerve system, it creates pain when their should be no pain,” said PJ Fisher, Johnson’s mother. “It was a long hard road-there were a couple of times she didn’t think she would make it, but she did.”

Fisher is proud of her daughter. Johnson would like to go to college to become a kindergarten teacher, but hasn’t decided on a school yet.

Johnson was glad to be a part of the ceremony Saturday.

“It’s different because I didn’t get to hang out with everybody but I did get to have a really awesome teacher, Mr. Fiacco,” she said.

Jim Fiacco teaches 10th and 12th grade social studies at Oneida. He doesn’t think current graduates are that much different than when he graduated.

“In some ways kids are more worldly. Some are less motivated, some are more motivated,” he said. “There’s a bigger gap between them and me when it comes to technology.”

Students were stuck between being happy and sad that their time at Oneida High School was over.

“It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness-we had everything before us, we had nothing before us,” Salutatorian Jordan Jarecki quoted Charles Dickens to sum up his feelings of the past four years.

“High school was a time of dreams, hopes, expectations and goals,” he said. “A time to learn about ourselves and who we are as individuals. I am shocked by how much I have learned-how much I have changed.”

“Future generations of America rest in the hands of graduates like us,” Jarecki said.

Board of Education President Brian Simchik instructed the members of the Class of 2007 to take responsibility for their actions.

“Ready or not you’re responsible; legally, ethically and morally,” he said. “Recognize that being responsible and making decisions is a skill-requires practice.”


©The Oneida Daily Dispatch 2007


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Injured Marine: ‘I feel left behind’

Injured Marine: ‘I feel left behind’

By CHRIS ENGLISH
Bucks County Courier Times

In the medical books, RSD stands for reflex sympathetic dystrophy.

In Moke Kahalehoe’s book, it stands for H-E-L-L.

The Falls resident and U.S. Marine has been tortured by the painful and debilitating neurological disorder since soon after breaking his left ankle and tearing a deltoid ligament in late 2005 in a martial arts training exercise during basic training at Parris Island, S.C.

Now retired from the corps, Kahalehoe, 26, lives with his girlfriend, Amanda Santacroce, brother Kawika and other family members at the home of his aunt, Carol Lubinski, in the North Park section of Levittown in Falls.

Cared for by Santacroce, family and friends, Kahalehoe spends nearly every minute in bed or in a wheelchair. A vacuum machine that sucks out infection and injects oxygen is attached to his injured leg as he shuttles back and forth between hospitals and doctors offices. The cloud of pain is broken only slightly by daily doses of five different painkillers and muscle and nerve relaxers, including OxyContin and Valium.

“Normal things that people don’t even notice cause extreme pain for me,” Kahalehoe said from his bed at Lubinski’s house. “When I can stand, I’ll get a shower, but I have to go four or five days between them because the water droplets hitting my skin are excruciating. I was just outside for a little while in the wheelchair, but I wasn’t out long because the wind was unbearable. Blankets and clothing on my skin are excruciating.”

In addition to the physical torment, Kahalehoe has financial worries because of the astronomical and still climbing medical bills. Though 80 percent of the medical costs will be covered by the military insurance Tri-Care, the Veterans Administration has so far said no to covering the other 20 percent, said Santacroce, who plans to appeal.

Citing privacy laws, VA officials declined to comment on Kahalehoe’s case.

Though many of the bills haven’t come in yet, Santacroce estimates they will top $1 million, with tens of thousands or hundreds of thousands of dollars in costs potentially not covered by insurance.

Santacroce and others have organized a June 30 fundraising dinner for Kahalehoe at the Fraternal Order of Eagles in Fairless Hills. The Commerce Bank in Fairless Hills has set up a fund for those who want to help with Kahalehoe’s expenses.

Trip to Germany

Among those expenses will be a trip to Germany for a special medical treatment that involves pumping high doses of Ketamine into Kahalehoe’s body. Santacroce, who hopes her boyfriend can make the journey by November, said neither the treatment nor travel expenses are covered by insurance.

Ketamine, an anesthetic often used on animals, is also a recreational drug known as “Special K” on the street. It’s also one of the “date rape drugs,” according to medical information.

“Moke’s chances for beating this are zero unless he gets some of these new treatments,” said Dr. Robert Schwartzman, chairman of the neurology department at the Drexel University College of Medicine. He has taken on Kahalehoe’s case.

“The cure rate for people getting the Ketamine treatment is about 40 percent,” Schwartzman said. “If we also follow that up with some other drug treatments, I think we can increase Moke’s chances for a cure to about 60 to 70 percent, but it’s by no means a slam dunk.”

Schwartzman said he wants to concentrate on getting Kahalehoe better, not on past mistakes that might have been made in his treatment.

“We have to keep working at it,” Schwartzman said. “There are new drugs coming down the line, and there are drugs he hasn’t had that are effective. Moke needs the treatment in Germany and new drugs after that, and it’s only fair he gets them. He deserves the best we can give him.”

Schwartzman said RSD is always triggered by some injury, often one — as in Kahalehoe’s case — that hasn’t healed properly. The condition is less rare than it used to be, with about 50,000 new cases in the United States every year, he said.

If Kahalehoe is able to make the trip to Germany, he’ll be injected with doses of Ketamine in amounts not allowed in the U.S. The injections will induce a five- to seven-day coma that hopefully will calm down Kahalehoe’s nervous system and allow it to “reboot,” Schwartzman said.

Santacroce estimates the cost of the treatment and trip at more than $100,000.

Before the injury, Kahalehoe, a 1999 Pennsbury High School graduate, was looking forward to making the Marines his career. He said his military specialty was going to be intelligence, and he likely would have served in Iraq working in that area and conducting interrogations of captured insurgents.

All that changed on Nov. 26, 2005, just 19 days after Kahalehoe enlisted in the Marines. While he was engaged in a martial arts exercise, another recruit kicked Kahalehoe’s leg and instead of hitting his calf or other soft tissue as recruits are instructed to do during training, he banged Kahalehoe’s ankle, causing a major fracture.

“It happened on a weekend and they didn’t have the medical staff on hand at that point,” Kahalehoe said. “By the time I saw a podiatrist on Monday, the foot and leg were so swollen they couldn’t put it in a cast. They just like put on a splint and an ace bandage for three months and I think that is what caused all this [RSD]. It all stemmed from having it immobilized for so long.”

The original injury still hasn’t healed properly and can’t be operated on because of the RSD, said Santacroce, a Long Island native who met Kahalehoe at Parris Island while they both were in the Marines. She said she was honorably discharged after being diagnosed with multiple sclerosis.

“I’m having my own issues with that with the VA because they claim it was a pre-existing condition, but my main concern right now is Moke,” Santacroce said.

Citing privacy issues, Marine officials at Parris Island declined to comment on Kahalehoe’s injury. The Courier Times was unsuccessful in attempts to reach Marine officials familiar with martial arts training methods.

After undergoing various treatments while still in the Marines — none very successful — Kahalehoe retired in August. The time since then has been a painful whirlwind of emergency hospital visits, battles over insurance, worry about the future and the endless ramifications of dealing with RSD.

Troubles with VA

Santacroce said she can’t understand the reluctance of the military and VA to take care of one of its own.

“We’ve had to take him to hospitals for emergencies like respiratory distress and things like that, and the VA says we should have taken him to VA hospitals, but there wasn’t time,” she said. “They also say things like they weren’t properly notified of the hospital visits. They won’t even pay for a special hospital bed at home or a special chair so Moke can sit down while taking a shower.”

Santacroce said Kahalehoe recently started getting a VA disability payment of $590 a month. It will be re-evaluated in 18 months and isn’t nearly enough, considering Kahalehoe’s condition, she said.

Congressman Patrick Murphy, D-8, and U.S. Sen. Arlen Specter, R-Pa., are trying to help, Santacroce said.

“PFC Moke Kahalehoe was injured while serving our country and now he needs our help,” Murphy, a veteran, said in a statement. “It is important that we rally around our troops and hopefully this event [June 30 fundraiser] will go a long way toward Moke’s recovery.”

Specter’s press secretary, Kate Kelly, said it’s office policy not to comment on pending casework, but chief of staff Scott Hoeflich issued the following statement: “Mr. Kahalehoe’s issue was brought to the office’s attention in May. Senator Specter’s office is currently working with Mr. Kahalehoe and the Department of Veterans Affairs on the matter of his disability rating.”

Kahalehoe’s father, Melvin, a native of Hawaii, lives in the islands but has visited his son twice since he’s been hurt and is doing what he can, Santacroce said. Kahalehoe’s mother, Joanne — Carol Lubinski’s sister — died about 12 years ago and had been divorced from Melvin for years before that, Lubinski said.

While attending Pennsbury schools, Moke Kahalehoe and his brother lived with a grandmother in another North Park house. Kahalehoe excelled in math, played baritone in the marching band, played classical and jazz piano and was an avid bowler with a 223 average.

After attending Drexel and Millersville universities with an eye toward a possible engineering career, Kahalehoe said he chose to follow his father and mother into the military.

“I don’t have any bitterness toward the Marine Corps,” he said. “I will always respect them and what they do. I still wear Marine Corps sweatshirts, but they have this saying about leaving no one behind, and I feel left behind.

“They sent me home without any healing or any fixing, just left me to fend for myself for what happened in the Marine Corps,” he said. “I just feel like they didn’t do what they could have done for me.”

How to help

A dinner benefit to help pay medical and related expenses for Moke Kahalehoe will be held from 7 p.m. to midnight June 30 at the Fraternal Order of Eagles, 920 Trenton Road, Falls. Cost: $25 a person. For tickets or more information, call Kahalehoe’s girlfriend, Amanda Santacroce, or his aunt, Carol Lubinski, at 215-869-8097 or 215-547-3146. Tickets should be reserved by Monday, Santacroce said.

People can also help by contributing to a fund for Kahalehoe set up at Commerce Bank in Fairless Hills. To contribute, make checks payable to “Benefit for Moke Kahalehoe” and also indicate that on the envelope. Send donations to Commerce Bank, 624 S. Oxford Valley Road, Fairless Hills, PA 19030. Donations can also be made in person at the bank. The bank phone number is 215-946-2841.

Chris English can be reached at 215-949-4193 or cenglish@phillyBurbs.com.





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When Is a Pain Doctor a Drug Pusher?


When Is a Pain Doctor a Drug Pusher?

Published: June 17, 2007

Ronald McIver is a prisoner in a medium-security federal compound in Butner, N.C. He is 63 years old, of medium height and overweight, with a white Santa Claus beard, white hair and a calm, direct and intelligent manner. He is serving 30 years for drug trafficking, and so will likely live there the rest of his life. McIver (pronounced mi-KEE-ver) has not been convicted of drug trafficking in the classic sense. He is a doctor who for years treated patients suffering from chronic pain. At the Pain Therapy Center, his small storefront office not far from Main Street in Greenwood, S.C., he cracked backs, gave trigger-point injections and put patients through physical therapy. He administered ultrasound and gravity-inversion therapy and devised exercise regimens. And he wrote prescriptions for high doses of opioid drugs like OxyContin.

McIver was a particularly aggressive pain doctor. Pain can be measured only by how patients say they feel: on a scale from 0 to 10, a report of 0 signifies the absence of pain; 10 is unbearable pain. Many pain doctors will try to reduce a patient’s pain to the level of 5. McIver tried for a 2. He prescribed more, and sooner, than most doctors.

Some of his patients sold their pills. Some abused them. One man, Larry Shealy, died with high doses of opioids that McIver had prescribed him in his bloodstream. In April 2005, McIver was convicted in federal court of one count of conspiracy to distribute controlled substances and eight counts of distribution. (He was also acquitted of six counts of distribution.) The jury also found that Shealy was killed by the drugs McIver prescribed. McIver is serving concurrent sentences of 20 years for distribution and 30 years for dispensing drugs that resulted in Shealy’s death. His appeals to the U.S. Court of Appeals for the Fourth Circuit and the Supreme Court were rejected.

McIver’s case is not simply the story of a narcotics conviction. It has enormous relevance to the lives of the one in five adult Americans who, according to a 2005 survey by Stanford University Medical Center, ABC News and USA Today, reported they suffered from chronic pain — pain lasting for several months or longer. According to a 2003 study in The Journal of the American Medical Association, pain costs American workers more than $61 billion a year in lost productive time — and that doesn’t include medical bills.

Contrary to the old saw, pain kills. A body in pain produces high levels of hormones that cause stress to the heart and lungs. Pain can cause blood pressure to spike, leading to heart attacks and strokes. Pain can also consume so much of the body’s energy that the immune system degrades. Severe chronic pain sometimes leads to suicide. There are, of course, many ways to treat pain: some pain sufferers respond well to surgery, physical therapy, ultrasound, acupuncture, trigger-point injections, meditation or over-the-counter painkillers like Advil (ibuprofen) or Tylenol (acetaminophen). But for many people in severe chronic pain, an opioid (an opiumlike compound) like OxyContin, Dilaudid, Vicodin, Percocet, oxycodone, methadone or morphine is the only thing that allows them to get out of bed. Yet most doctors prescribe opioids conservatively, and many patients and their families are just as cautious as their doctors. Men, especially, will simply tough it out, reasoning that pain is better than addiction.

It’s a false choice. Virtually everyone who takes opioids will become physically dependent on them, which means that withdrawal symptoms like nausea and sweats can occur if usage ends abruptly. But tapering off gradually allows most people to avoid those symptoms, and physical dependence is not the same thing as addiction. Addiction — which is defined by cravings, loss of control and a psychological compulsion to take a drug even when it is harmful — occurs in patients with a predisposition (biological or otherwise) to become addicted. At the very least, these include just below 10 percent of Americans, the number estimated by the United States Department of Health and Human Services to have active substance-abuse problems. Even a predisposition to addiction, however, doesn’t mean a patient will become addicted to opioids. Vast numbers do not. Pain patients without prior abuse problems most likely run little risk. “Someone who has never abused alcohol or other drugs would be extremely unlikely to become addicted to opioid pain medicines, particularly if he or she is older,” says Russell K. Portenoy, chairman of pain medicine and palliative care at Beth Israel Medical Center in New York and a leading authority on the treatment of pain.

The other popular misconception is that a high dose of opioids is always a dangerous dose. Even many doctors assume it; but they are nonetheless incorrect. It is true that high doses can cause respiratory failure in people who are not already taking the drugs. But that same high dose will not cause respiratory failure in someone whose drug levels have been increased gradually over time, a process called titration. For individuals who are properly titrated and monitored, there is no ceiling on opioid dosage. In this sense, high-dose prescription opioids can be safer than taking high doses of aspirin, Tylenol or Advil, which cause organ damage in high doses, regardless of how those doses are administered. (Every year, an estimated 5,000 to 6,000 Americans die from gastrointestinal bleeding associated with drugs like ibuprofen or aspirin, according to a paper published in The American Journal of Gastroenterology.)

Still, doctors who put patients on long-term high-dose opioids must be very careful. They must monitor the patients often to ensure that the drugs are being used correctly and that side effects like constipation and mental cloudiness are not too severe. Doctors should also not automatically assume that if small doses aren’t working, that high doses will — opioids don’t help everyone. And research indicates that in some cases, high doses of opioids can lose their effectiveness and that some patients are better off if they take drug “holidays” or alternate between different medicines. Pain doctors also concede that more studies are needed to determine the safety of long-term opioid use.

But with careful treatment, many patients whose opioid levels are increased gradually can function well on high doses for years. “Dose alone says nothing about proper medical practice,” Portenoy says. “Very few patients require doses that exceed even 200 milligrams of OxyContin on a daily basis. Having said this, pain specialists are very familiar with a subpopulation of patients who require higher doses to gain effect. I myself have several patients who take more than 1,000 milligrams of OxyContin or its equivalent every day. One is a high-functioning executive who is pain-free most of the time, and the others have a level of pain control that allows a reasonable quality of life.”




Article Continues Here / Original Posting Page – New York Times.com Website

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