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Old 09-13-2009, 07:26 PM
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Harrison Harrison is offline
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Join Date: Oct 2004
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Default New film helps spine surgery patients get back on their feet

Thanks for your kind words. I am most proud of the film as an educational piece, as it consolidates a great deal of information that has been exchanged within this community in the past five years. And good point about the donation sizes; if anyone has economic hardship, of course we can make exceptions. These are recommendation donation sizes and any donation is tax-deductible.

Two separate articles were submitted and accepted recently by two (very different) orthopedic publishers. This version below was released this week (hard copy) by Orthopedic Products News and a longer web version was published by Robin Young a few weeks ago. I hope it helps new spine patients better understand the educational aspects of this new film on DVD.
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NEW FILM HELPS SPINE SURGERY PATIENTS GET BACK ON THEIR FEET
By Richard Longland
Founder, the Arthroplasty Patient Foundation

A Cutting Edge Spine Patient is Born

In 2002, I started to get some really nasty pains in my lumbar spine. In 2003, I had myriad tests while gobbling NSAIDs like PEZ candies. And my sitting tolerance worsened to the point where my quality of life completely evaporated. While getting physical therapy, which consisted of nothing more than traction, I consulted with different doctors to obtain the most appropriate treatment options. Since my L5-S1 disc was desiccated and dark on imaging studies and the nerve pain was increasing in severity and location, I whittled my options down to a century-old procedure (the gold standard of fusion) or the newfangled artificial disc replacement.

The idea of motion preservation seemed to make sense to me. So on June 24th, 2004, nearing the end of the Charité clinical trial, I underwent artificial disc replacement surgery at L5-S1 (see image 1). I was in the hospital for 1½ days and made a quick recovery. However, in the terrible process leading up to that day, I spent hours and hours researching my problem: sitting uncomfortably while on-line and reaching out to other patients through discussion boards, e-mail and eventually by phone. It struck me then that patients must look in so many places – too many places for even a “healthy” person -- to put the pieces of the puzzle together. I knew there had to be a way that I could improve the information gathering process for patients, making it easier, more efficient and comprehensive.

When I regained my strength after surgery, I used my energy to launch a website: ADRSupport. Recalling how helpful interactions with spine patients were to me in my difficult journey, I launched a global discussion board in which I still contribute as a patient and community moderator. Even today, the ADRSupport online site brings together ordinary people from all walks of life from over seventy countries, but it also includes medical professionals including dentists, radiologists and medical technicians. I learned a great deal as the editor and administrator at ADRSupport still do. It was a significant learning process that challenged me to take the next critical step in my life.

Making a Big Step: Literally and Professionally

Starting a non-profit is great if you love paperwork and have oodles of money; I am not inclined to bureaucracy and have never won the lottery. Still, I pressed on, while cursing the IRS applications and started the Arthroplasty Patient Foundation, a nonprofit organization. I immediately focused on solving the perpetual problem for spine patients: what’s the best way for patients to learn about new spine treatment technologies? I sensed that film would be a great medium for delivering intelligence to patients, so I started producing a unique film that addresses these startlingly complex challenges. And as the founder of the ADRSupport community, a film maker, and patient, I was in a unique position to interview patients and explore opposing viewpoints on disc replacement.

As of July 2009, there is a new information resource that could accelerate the “patient-doctor” relationship: a film I produced called Getting Back on Their Feet. This 75 minute, high definition documentary is the first of its kind in the spinal arthroplasty world. Featuring candid interviews with seven spine patients, the film takes viewers through the process of disc replacement surgery from diagnosis to recovery. The end result is the visual equivalent of a “how to” manual helpful to both patients and doctors. This film is a concise medium that crunches down, distills and conveys complex information expressly for spine patients.

Medical professionals who watch the film will see and hear what spine patients are looking for in their treatment and consultations. Patients who watch the film will be able to approach their doctors with more knowledge about treatment options and especially a much better understanding of possible risks and complications. Armed with this crucial knowledge, Getting Back on Their Feet will help patients and doctors use their time together as efficiently as possible.

Thoughtful Analysis and Precise Editing

The film also brings out information that one cannot normally find through traditional research methods. Even though each patient interview used the same script, there are highly variable but different responses. As an interviewer, I learned to ask the right question and even ask the same question in different ways to glean information the patient may not have thought about.

One interviewee, Jim, gives his own scale for measuring progress during post-op recovery. It isn’t the normal kind of advice that a doctor would think to give a patient: “When you're in the bathroom,” says Jim, “there are so many things that happen that you need to do with your body, such as washing your hands, shaving your face, getting in and out of the shower, putting on your pants without a grabber or without somebody helping you, putting on your socks. These are the things to watch to determine what your rate of progress is. Forget about the numbers and forget about everything that everybody talks about. What you can do in the bathroom tells you how much better you're getting.”

Listening to these patients’ stories also helps other patients feel that they are not alone in their pain. Eileen tells the camera, “People don’t necessarily understand pain unless they see blood and guts.” Ken describes the halting of his active lifestyle as “taking a race car and putting it up on blocks.” Patients share their pain in the film in ways that they could not with their doctors. Both Ken and Eileen recovered from their surgeries and returned to active lives.

Education and Empowerment

An additional focus of the film deals with patient empowerment -- how people research and obtain information -- as compared to a more traditional patient role of relying on the doctor for everything. With the intensity of chronic spine pain, it’s all too easy for some patients to reach the end of their rope and think, “Just fix me!” Unfortunately, this mechanical way of thinking can be risky because patients might not do their due diligence on potential contra-indications.

For example, if the patient presents a long list of health complaints and defers solely to an orthopedic surgeon, that “surgeon-patient” team may not have the expertise to address all the cause(s) of chronic pain afflicting the patient. Fortunately, the film includes a comprehensive list of risks and contraindications for ADR surgery. After viewing Getting Back on Their Feet, the patient will learn how to ask more informed questions about their spinal condition and the surgeon will come to a better understanding of the patient’s perspective.

An orthopedist’s busy schedule may not always leave enough room to address a worried patient’s questions, and a spine surgeon may have trouble seeing the problem from a patient’s point of view. Getting Back on Their Feet is here to fill in the gaps on both sides. Doctors can recommend this film to their patients as a follow-up to an initial consultation. Then, instead of the patient feeling the need to meet with other doctors to address their concerns, the patient can come back for a second visit with new knowledge. And this makes for a more efficient consultative transaction for both parties. When a doctor can fully relate to a patient’s condition, and when the patient can understand his or her pain and treatment options, then both parties can concentrate on what the patient really needs: getting back on their feet.
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ADRSupport was founded in 2004 and empowers pre and post-operative spine patients by supporting them in a global community and by helping them identify appropriate treatments to preserve natural motion in their spine. Its web site and global community is found at www.adrsupport.org.

The new Arthroplasty Patient Foundation was founded in 2007 and helps patients research and consider the best solution for their spine dysfunction, whether device-based, biological, or naturopathic. As a 501(c)(3) organization, it seeks partners who are truly committed to helping spine patients return to the highest possible quality of life. Its web site and new film is found at: www.arthropatient.org.
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"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
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