Monthly Archives: August 2005

College opens new chapter in life of chronic-pain victim

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Lebanon Daily News.com, originally uploaded by rsdscrpsnews.

College opens new chapter in life of chronic-pain victim
By JOHN LATIMER
Staff Writer
Lebanon Daily News

Today is the first day of the rest of Amanda Ebersole’s life.

Cliché that may be, but it’s also the bona fide truth. Because Ebersole began classes at Edinboro University today.

Attending the college near Erie is the first step on a promising path for the 24-year-old North Lebanon Township resident who 10 years ago contracted a rare and painful neurological disease that has since dominated her life.

It is a bit like coming out of a long, dark tunnel into bright sunshine, she said during an interview at her home last week.

“Finally, I have some good news,” she said, a bright smile lighting up her face. “For 10 years, it has just been bad news after bad news.”

Ebersole was a ninth-grader at Cedar Crest High School when her life was changed forever by what started as a simple ankle sprain. The injury did not respond to treatment; it got worse, and eventually developed into a little-known disease called Reflex Sympathetic Dystrophy Syndrome.

Readers may recall Ebersole, whose story was first told in the Lebanon Daily News five years ago. At that time, she was preparing to graduate from Cedar Crest, a major accomplishment in itself because she had to rely on a tutor after the disease made attending classes impossible.

Also known as Complex Regional Pain Syndrome, RSDS affects millions of people in the U.S., according to the Reflex Sympathetic Dystrophy Syndrome Association. The precise cause of the disease is still a mystery, and a cure has yet to be found. Researchers believe it is the result of a malfunction in a person’s sympathetic nervous system in which the brain continues to send pain signals to damaged tissue, causing swelling and an excruciating burning sensation that spreads to surrounding tissue and damages them in an endless cycle of pain.

Ebersole’s RSDS specialist, Dr. Robert Knobler, who himself suffers from a milder form of the disease, has described the pain as rubbing sandpaper on badly sunburned skin — without stopping.

If caught in its early stages, there is a better chance for halting progression of the disease. But when undiagnosed, as in Ebersole’s case, it can become full-blown and spread throughout the body.

The past decade of Ebersole’s life has been spent coping with the disease by trying to manage the pain and stem its destructive and relentless march through her body.

Mostly, it has been a losing battle, with frequent trips to the hospital. Tragically, an attempt with an experimental drug led to a side-effect that caused Ebersole to lose the use of her legs. Today, she relies on a mechanized wheelchair to move about.

Through it all, Ebersole has maintained a remarkably positive attitude. She gives credit for that to the support she receives from her family and friends, many of whom are RSDS suffers with whom she chats with online.

Unable to fully care for herself, Ebersole has continued to live with her parents, Kenneth and Kathy Ebersole, in their home on Heilmandale Road.

Until recently, the idea of leaving home, much less attending college, was a far-fetched one for Ebersole.

That all changed in November when Dr. Stuart Hartman, a doctor who treated her at the Good Samarita Hospital’s Hyman Caplan Pavilion, told her that she was eligible for tuition assistance from the Office of Vocational Rehabilitation, a division of the state Department of Labor and Industry.

“I didn’t know anything about it,” Ebersole said. “I was just so excited leaving his office that day. He had given me the number of the Office of Vocational Rehab, and I got right on the ball that day and called.”

Ebersole was put in touch with a counselor and immediately started to make plans to attend the Lebanon campus of Harrisburg Area Community College. But those plans changed after she spoke with one of her online buddies about Edinboro University’s program for the disabled.

Since the 1970s, the university has been a leader in providing educational opportunities for the disabled by making the campus accessible and offering around-the-clock support services, including personal-care attendants, said Bob McConnell, director of the Office of Students with Disabilities. Of the university’s 8,000 students, 450 are disabled, he said.

“Our goal is really to provide a university where disabled students can come here and be college students just like everybody else,” McConnell said. “We want to give them an opportunity to succeed, and what they make of it is up to them.”

Ebersole checked out the Fighting Scots’ Web site and liked what she learned about the school and its nearly 600-acre campus. She applied online and was accepted two weeks later.

When visiting the campus with her mother for the first time this spring, Ebersole was not disappointed.

“Every student is willing to help you,” she said. “They don’t turn their nose up at you like you are lower than them. It is just a really friendly place and I fell in love with it.”

At first, the idea of attending Edinboro was a bit daunting for her and her parents because it is a five-hour trip from home, Ebersole admitted.

“They were excited about me going to HACC but then when Edinboro came up, mom was a bit hesitant about her baby living so far,” she said with a laugh that comes easier and more often than it has in years. “My mom and I have always been so close.”

Ebersole’s tuition and most of her additional expenses will be covered by scholarship grants and the state Office of Vocational Rehabilitation. Joining her is her service dog, Ami, a black Labrador Retriever.

“I already got him an Edinboro bandanna so he is going to be dressed for the first day of classes,” she said.

Even though she will still be dealing with her RSDS, Ebersole is determined to make the most of her time at Edinboro. She plans to major in social work and eventually get a master’s degree. Having spent so much time in rehabilitation-treatment centers, she thinks working in one might be a good fit.

“I really want to work at a rehab hospital, like Moss Rehab (in Philadelphia),” she said. “I had a wonderful social worker there, and she inspired me.”

——————

http://www.rsds.org

http://www.edinboro.edu

http://www.dli.state.pa.us/ovr

For the original story online, please click here: http://www.ldnews.com/news/ci_2983394

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QUADRIPLEGIC SAILS ACROSS ENGLISH CHANNEL

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AZERTAC Logo, originally uploaded by rsdscrpsnews.

QUADRIPLEGIC SAILS ACROSS ENGLISH CHANNEL
[August 29, 2005, 15:32:43]

A paralyzed woman has become the first quadriplegic sailor to cross the English Channel.

Hilary Lister, from Kent, used controls powered by her breath to navigate her boat from England to France yesterday, reaching Calais after six hours and 13 minutes.

The mechanism she uses is similar to one on her wheelchair and has two straws connected to switches to control the sails and steer the vessel.

After arriving in France the 33-year-old said, “I am just thrilled.”

Lister, from Canterbury, has been a quadriplegic for four years, because of a progressive degenerative disease, reflex sympathetic dystrophy, which has worked its way up from her ankles to her neck. She can now move only her head, eyes and mouth and took up sailing two years ago as a way to boost her self-confidence.

By crossing the Channel, Lister set a record for the world’s longest solo sail by a quadriplegic.

For the original story online, please click here: <a href="http://www.azertag.com/en/index.shtml?language=english&amp;
catid=&news_year=&news_month=&news_day=&
newsid=131893&themes_viewing=&themes_page
=&themeid=&news_page=”>http://www.azertag.com
/en/index.shtml?language=english&catid=&news_year
=&news_month=&news_day=&newsid=131893&themes_viewing
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Support Groups

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times_logo, originally uploaded by rsdscrpsnews.

NWPA RSDS Associationmeets periodically at Hamot Health Connection. Call Northwestern Pennsylvania Reflex Sympathetic Dystrophy Syndrome Association at 796-3842.

See: <a href="http://www.goerie.com/apps/pbcs.dll/article?AID=/20050822/LIFESTYLES07/
508220324/-1/LIFESTYLES”>http://www.goerie.com/apps/pbcs.dll/article?AID=/
20050822/LIFESTYLES07/508220324/-1/LIFESTYLES

Disabled woman’s solo mission

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EdinburghNews, originally uploaded by rsdscrpsnews.

Tue 23 Aug 2005

Disabled woman’s solo mission

A SEVERELY disabled woman was today attempting to become the first quadriplegic to sail solo across the English Channel.

Able to move only her head, eyes and mouth, Hilary Lister will have to overcome severe physical pain to navigate her boat through one of the most treacherous shipping lanes in the world. The 33-year-old was attempting to sail a 26ft soling boat – a cross between a dinghy and a yacht – from Dover to Calais. If she succeeds she will set a record for completing the world’s longest solo sail by a quadriplegic.

The boat is adapted to be controlled by the “sip and puff” method where Mrs Lister will adjust the sails and tiller through blowing and sucking through two straws.

Mrs Lister took up sailing two years ago as a way to boost her self-confidence.

She was diagnosed when she was a teenager with the degenerative disease reflex sympathetic dystrophy which causes exaggerated and painful responses from normal sensations and has gradually led to her losing most of her normal functions.

For the original article online, please click here: http://edinburghnews.scotsman.com/uk.cfm?id=1829132005

The Antinociceptive Effect of Local or Systemic Parecoxib…

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AnesthesiaAndAnalgesia, originally uploaded by rsdscrpsnews.

Anesth Analg 2005;101:807-811
© 2005 International Anesthesia Research Society
doi: 10.1213/01.ane.0000166980.45162.1c
PAIN MEDICINE
The Antinociceptive Effect of Local or Systemic Parecoxib Combined with Lidocaine/Clonidine Intravenous Regional Analgesia for Complex Regional Pain Syndrome Type I in the Arm
Luiz-Cleber P. Frade, MD, Gabriela R. Lauretti, MD, MSc, PhD, Izabel C.P.R. Lima, MD, MSc, PhD, and Newton L. Pereira, B Pharm, MSc, PhD

Pain Clinic, Teaching University Hospital of the Faculty of Medicine of Ribeirão Preto, University of São Paulo, Brazil

Address correspondence and reprint requests to Gabriela R. Lauretti, MD, MSc, PhD, Rua-Campos Sales, 330, apto. 44, Ribeirão Preto-São Paulo 14015 110, Brazil. Address e-mail to grlauret@fmrp.usp.br.

We evaluated the efficacy of local or systemic parecoxib combined with lidocaine/clonidine IV regional analgesia in complex regional pain syndrome (CRPS) type 1 in a dominant upper limb. Thirty patients with CRPS type 1 were divided into three groups. The control group (CG) received both IV saline in the healthy limb and IV loco-regional 1 mg/kg of lidocaine + 30 µg of clonidine, diluted to a 10-mL volume with saline. The systemic parecoxib group (SPG) received a regional block similar to that administered to the CG but with systemic 20 mg of parecoxib, whereas the IV regional anesthesia with parecoxib group (IVRAPG) received an extra IV 5 mg of loco-regional parecoxib compared with the CG. The block was performed once a week for 3 consecutive weeks. Analgesia was evaluated by the 10-cm visual analog scale (VAS) and rescue analgesic consumption. The IVRAPG showed less daily ketoprofen (milligrams) consumption in the second and third weeks compared with the other groups (P < 0.05). The IVRAPG also showed less ketoprofen consumption when comparing the first and second week with the third week (P < 0.05). The VAS score comparison among groups revealed that groups were similar during the first and second week observation, although the IVRAPG showed smaller VAS scores in the third week compared with both CG and SPG (P < 0.05). We conclude the IV 5 mg of parecoxib was an effective antiinflammatory drug combined with clonidine/lidocaine loco-regional block in CRPS type 1.

For the original article online, please click here: http://www.anesthesia-analgesia.org/cgi/content/abstract/101/3/807

Bisphosphonate therapy of reflex sympathetic dystrophy syndrome

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ARDonline, originally uploaded by rsdscrpsnews.

Ann Rheum Dis 1997;56:201-204 ( March )
Concise reports

Bisphosphonate therapy of reflex sympathetic dystrophy syndrome
S Adami,a V Fossaluzza, D Gatti,a E Fracassi,a V Bragaa

a COC di Valeggio, University of Verona, Valeggio, Verona, Italy , b Ospedale di Udine, Italy

Correspondence to: Professor S Adami, Ospedale di Valeggio,37067 Valeggio s/M, Verona, Italy.

Accepted for publication 27 November 1996

Abstract

OBJECTIVE—The reflex sympathetic dystrophy syndrome (RSDS) is a painful limb disorder, for which a consistently effective treatment has not yet been identified. The disease is associated with increased bone resorption and patchy osteoporosis, which might benefit from treatment with bisphosphonates, powerful inhibitors of bone resorption.
METHODS—Twenty patients with RSDS of foot and hand, were randomly assigned to blind administration of either alendronate intravenously (Istituto Gentili, Pisa, Italy) 7.5 mg dissolved in 250 ml saline solution or placebo saline infusions daily for three days. Two weeks later all patients had an identical treatment course with open labelled alendronate (7.5 mg/day for three days), independent from the results of the first blind treatment.
RESULTS—In the patients treated with blind alendronate the diminution in spontaneous pain, tenderness, and swelling (circumference of the affected limb) and the improvement in motion were significantly different from baseline (p<0.001), from those observed within the first two weeks in the control group (p<0.01), and from week 2 to week 4 (p<0.01). In the patients given blind placebo infusions no relevant symptomatic changes were observed after the first two weeks of follow up, but they responded to the open alendronate therapy given afterwards. In 12 patients with RSDS of the hand the ultradistal bone mineral content (BMC) of the affected arm was considerably lower than that of the controlateral arm (mean (SD)) (426(82) mg/cm versus 688(49)). Six weeks after the beginning of the trial BMC rose by 77(12) mg/cm (p<0.001) in the affected arm, but it did not change in the controlateral.
CONCLUSIONS—These results indicate that bisphosphonates should be considered for the treatment of RSDS, producing consistent and rapid remission of the disease.
(Ann Rheum Dis 1997;56:201-204)

Introduction

The reflex sympathetic dystrophy syndrome (RSDS) is a painful limb disorder characterised by swelling, autonomic dysfunction, patchy osteoporosis and, later, contracture formation. Some of the symptoms might not be present or a particular feature is more apparent; this has been responsible for the myriad of terms applied to partial descriptions and designations of RSDS.1

Various methods of treatment have been tried, including physiotherapy, calcitonin, corticosteroids, sympathetic blockade, non-steroidal anti-inflammatory drugs. The results of these attempts are inconsistent2-4 and they produce slow improvements that cannot be easily distinguished from spontaneous remission.

The bone disease is characterised by increased bone resorption,5 which might benefit from treatment with bisphosphonates, powerful inhibitors of bone resorption.6 In preliminary studies we observed rapid and persistent remission of the symptoms in several patients treated with intravenous clodronate or alendronate. Our preliminary results together with other positive uncontrolled findings with intravenous pamidronate7 8 prompted us to undertake a double blind study in patients with RSDS with intravenous alendronate, a powerful bisphosphonate, which was extensively investigated in our unit for several years.9 10

*** Editor’s Note: This article is very long. If you’d like to view the remainder… please click here for the original version online http://ard.bmjjournals.com/cgi/content/full/56/3/201

RecordOnline

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RecordOnline, originally uploaded by rsdscrpsnews.

August 20, 2005

Family keeps victim of nerve disorder strong

For more than 11 years, James Formato of New Windsor has dealt with a painful nerve disorder known as RSDS (Reflex Sympathetic Dystrophy Syndrome) and CRPS (Chronic Neurological Syndrome).
He wants others to know about the disorder, too. It is characterized by constant chronic burning pain, inflammation, spasms in blood vessels and muscles of the extremities, and insomnia/emotional disturbance.
His supportive and loving family, whom he calls his “major contributors” in keeping his spirits up, includes his wife, Sharon, and their children, their spouses and offspring, his mother, Freida, and many more.
“They are responsible for keeping me focused and the reason for my daily struggle with life,” he said.
His children have created a Web site to share knowledge about the disorder that has disabled the former teacher who was named “Outstanding Science Teacher for Physical Science” in 1985.
They also want people to realize that the Reflex Sympathetic Dystrophy Syndrome Association, founded in 1984 to promote public and professional awareness, spends $75,000 every year on research.
For information, log onto www.rsds.org/3/research/rsdsafundedreseach.html or www.rsds.org/6/donate.html.
Formato can be reached at 562-1841. His address is 53 Clintonwood Drive, New Windsor 12553.

Barbara Bedell’s column appears daily. Call her at 346-3125.

For the original story online, please click here: http://www.recordonline.com/archive/2005/08/20/bedell20.htm