Spine patients with chronic pain must overcome extraordinary challenges to return to wellness. These challenges include obtaining an accurate diagnosis, finding a compatible and trustworthy doctor, understanding treatment options, verifying insurance coverage, and juggling work and family responsibilities.
Recognizing these and many other difficult challenges, the foundation embarked upon its first project: interviewing chronically ill spine patients on camera. The following entries are from the video production blog.
Sloane
Sloane and her family live just outside of New York City, so I traveled there to meet with her for the interview. I “set up shop” in the living room where we chit-chatted until my camera equipment was properly situated. Her kids were adorably distracting, crazy with energy and an amateur videographer’s worst nightmare. But Sloane’s understanding hubbie John saved the day by lassoing the kids into the van for a trip to enjoy Happy Meals. Then we settled into an interesting and personal conversation of a long episode in Sloane’s life: living with severe back pain for two decades. I first learned of Sloane from her posts on ADRSupport discussion board in which she explained her three-level surgery. Her procedure was quite involved: a Charite’ and two fusions in lumbar spine. To me, it seemed like Sloane was having a tough recovery; but who wouldn’t after a procedure like that!?
Reflecting on her youthful activities, Sloane explained that she started gymnastics at a very early age — seven years old. Her first trip to a spine doctor found her at a neurologist’s office at age seventeen, where the doctor explained that there “was nothing he could do” for her. And for the eighteen years that followed, her back problems “came and went.”
Into her thirties, the lumbar issues became too serious to ignore any longer. Then came the long train of remedies for pain management: steroid injections, Toradol, more steroids, chiropractic adjustments, Advil and Aleve. When she could, she did stretching and swimming. Ultimately, she abandoned most of her exercising, including dancing — one of her favorite things to do.
Sloane recounted shoveling snow one day, which landed her in the hospital for five days. That seemed to be a pivotal episode in her life. Around that same time, all the epidural injections were losing their effectiveness. She started networking among her friends and family to identify an experienced surgeon, and found one that eventually performed a three-level lumbar procedure. She actually had a post-op complication; one of the screws for the fusion loosened and gave her some pain. On top of that — she had a kidney stone! But she communicated the pain issue(s) to the doctor and they re-operated and fixed the fusion hardware problem. Both the patient and the surgeon handled this tricky situation openly and honestly!
Sloane is now back on her feet and recently enjoyed a vacation with her extended family. Read about her post-op recovery journey on ADRSupport — her post-op topic is here.
Jim (and Michelle)
Jim realized he had a serious spine problem in January of 2007. While at work, changing the water cooler jug (the fifty-five pound kind that no one else volunteers to lift), something popped in his lower back. With the immediate onset of pain, he wriggled to his boss’ office and explained what happened. That event launched his journey through the maze of healthcare woes: worker’s compensation, doctors’ offices and problem-solving.
Jim’s problem was unlike many patients from the ADRSupport community: within just a few days, he went from a symptom-free life to very high pain levels (he explained 7-8 pre-op) after the injury. Because of the pain, he couldn’t continue with his busy job in retail, which required physical activities like moving heavy boxes and carrying merchandise. Taking leave, he struggled to find ways to stave off the pain; but NSAIDs and even cortisone injections didn’t help. He used that time to visit several different spine doctors. While his doctors’ diagnoses for the “pancaked” L5-S1 were the same, the treatment options were different. Then came the tough part: deciding the next steps.
Jim spoke eloquently about his decision-making process: how he discussed it with his wife Michelle, how they communicated with patients from ADRSupport and how they sorted through the mounds of information to separate the “wheat from the chaff.” By listening to him talk about the decision process and see how animated his facial expressions were, I was glad we captured it all on camera!
Michelle also talked about the patient advocacy role — one of support, care and love that she provided to Jim each step of the way. She also spoke of church fellowship and how that played a key role in their lives during those brutal times before surgery. Meeting them, enjoying their company and hearing their story was interesting for me. Hopefully, their personal account on the final film will illuminate the intricate baby steps patients must take to make complex surgical decisions. If this instructive lesson is not conveyed in the final film, well then, Moki and I really goofed. ; )
Jim had a one-level Charite’ L5-S1 and is now five months post-op. He explained last month he was a “lot better than expected.” His energy is “way back to normal,” but he did have some unusual symptoms with his foot. We’ll catch up with him soon to see how he’s doing…
Ellie
Ellie’s medical odyssey started many years ago, even before she settled into her stressful job on Wall Street. She spoke candidly about the difficulty of working in a “high end, high stress job” in the Big Apple, citing the many ways in which her chronic back problem was made obvious to her co-workers. These examples are familiar to you spine patients working in corporate environments:
- sitting at a meeting table, then getting up to stand because of the pain;
- hoping to hide the pain on your face, but finally realizing you can’t fool your colleagues.
- converting your office environment into a standing work station;
- trying to take the edge off the pain with NSAIDs.
Working through the problems of pain management in 2002, she tried Vioxx, then increasingly stronger anti-inflammatories. Those remedies were ineffective. During this time, she was advised by her doctors to consider a two-level IDET procedure and she took the advice. The IDET procedure eventually made things much worse, so she then tried everything from physical therapy to magnets to moxibustion to manage the pain!
Eventually, she learned from her doctors she needed additional surgery. When one doctor recommended a multi-level lumbar fusion, she sought opinions from physiatrists, multiple neurosurgeons and others…followed by MRIs, CT scans and discograms. After speaking to fusion patients who were “not happy campers,” she decided fusion was not right for her. For her, the notion of lumbar fusion meant adjacent level degeneration down the road — and implied more fusions at other levels of her spine. This possibility motivated her to explore motion preservation procedures that she heard of from one of her “forward-thinking” doctors. She eventually decided on “ADR.”
Then began the battles with her health insurance company, requiring all her discretionary time and energies. Even though she had a successful three-level lumbar ADR (L3-S1) in Germany in 2007, her battle for reimbursement for the procedure continues to this day.
Ellie is recuperating, slowly but surely. Unfortunately, she does have other health issues, including: sacroiliac pain, thoracic herniations, knee problems and a dislocated tailbone. Coincidentally, her son recently had ADR with another German clinic. There, one neurologist noted his unusual symptoms and asked if he was ever tested for Lyme disease — making Ellie question if her myriad joint problems are related to any of this Borrelia burgdorferi business. Even today, she still wonders…
Jim (and Anita)
The next interview finds me in my own home in Woburn, where I’ve set up a makeshift studio in my (feels like December) basement. There, it’s easier to set up the appropriate lighting, camera and TV as a monitor for a perfect high-definition interview.jim-peludat-medium.jpg
I am grateful that our next interviewees were amenable to driving two hours from their home in Connecticut. I’ve talked to Jim’s wife (Anita) several times, but I’ve never met Jim; so it was particularly interesting to welcome them both into our home. This interview on camera would include both of them — Jim would receive the “scripted” thematic questions, while Anita’s questions would be more aligned with her experience as a spouse and patient advocate for her husband. Here’s Jim laughing at one of my goofy jokes.
The forecast for later that Saturday night was for several hundred feet of snow, so upon their arrival, we didn’t waste any time readying ourselves for the interview. We got right into the interview and scripted questions with Jim. I was impressed with his candor and emotions, as he shared his humbling stories that recounted fifteen years of debilitating lumbar spine pain. He was quite eloquent in describing the severity of the pain, the meds he tried which were not terribly effective and the crushing burden of emotional and psychological pressures that come along with these nasty conditions. Towards the end of the interview, we talked about his three-level artificial disc replacement and the surprisingly long time it took to fully recover from that procedure. Seeing how healthy Jim is now, it is hard to believe that he spent 1/3 of his life in this hell. Jim confessed his inexperience in communicating his thoughts about these complex matters, but his honesty and humility was - and is - very clear. After the interview, I felt like I interviewed someone that went through a long and uncertain war. Upon reflection, I suspect I did.
Ten minutes after finishing the interview with Jim, Anita was trying to get comfy for the less-than-scripted interview. After my amateurish camera focusing, wireless mike challenges and awkward false-starts, we discussed the possible interview subjects: helping and supporting a spouse with serious spine issues, patient advocacy…and even some of the “bigger” issues that compare U.S. spinal care with our European counterparts. But we spent most of the time covering the details of how Jim’s bad back affected the entire family, especially the relationships with their sons. It was really difficult to hear Anita recall those tough days: Jim coming home and having to lie on the floor every night (with the dog), the many meds he carried with him at all times in a cooler, the strains on the marriage…
Our conversation then moved from the role of Anita “the spouse” to Anita the “patient coordinator.” Anita’s former experience in a busy German Spine Clinic allowed her to see “the good, the bad and the ugly” of spine surgery, where she met people from all over the world and tended to their many needs. This interview in of itself could constitute a separate documentary for spine patients, doctors and policy-makers!
It will be tough to whittle down this footage of both Jim and Anita (100 minutes) into segments that appear in the final video. Coincidentally, the final video is planned to be 100 minutes. What a challenge ahead for me and Moki!
Rein
On the first day of December, I drove from my humble abode in Woburn to Cape Cod to interview our next spine patient. I’ve been talking to Rein for several years on the phone, so it was fun to finally meet him at his house. He and his wife were fantastic hosts — he spoiled us with home made pizza (on the stone, dough from scratch…you get the idea) and later, ginger-infused ice cream. Jeez, if you’re ever in Cape Cod and hungry, you gotta stop here! Just call for reservations first. ; )
But after all the yummie delights, it was time to get ready for the interview. I’ve always enjoyed talking to Rein, as he is eloquent and knowledgeable in a wide variety of topics - especially artificial disc replacement. In particular, he has some passionate opinions about the Active L and staying fit to mitigate pain. It was especially interesting for me to hear his take on the biomechanics of ADR, as he is a skilled sail maker and has worked with his hands all his life. After the interview, he demonstrated some of the exercises he performs daily to stay fit and relatively pain-free. Though his L5-S1 is “toast,” his inversion “machine” has kept him away from surgery for several years. On these days where his physical work load with sail making/repairing/cleaning is intensive, his ibuprofen torpedoes take the edge off the burning back pain.
In this project, Rein is the only patient that is pre-surgical. He’s not yet decided when orwhere he will be having surgery, but he’ll be sure to let us know what he decides. In the meantime, he’ll be managing his day-to-day pain with his special mechanical friend. Here he is defying gravity…with a thumbs up…or is it a thumbs down!?
Ken
After the fun-filled morning of filming Ingrid in Manhattan, I hopped in my car and drove up to interview Ken in Massachusetts. I first talked to Ken a few years ago, when we me met through the ADRSupport site. After corresponding with him many times since our first chat in 2005, it was interesting to finally meet Ken and his wife in person.
Mary and Ken live in the sticks (thank God for a new & cheap GPS) and welcomed me in their quintessentially perfect country home. Since it was my first “unsupervised camera interview, I had to futz around with the camera and wireless mikes while Ken patiently waited. After an eternity of Ken watching me trying to get the microphone(s) working, he asked dryly, Rich, is the mute button supposed to be on? So, thank God for intelligent interviewees, as this silly step completed the setup process as we readied ourselves to start the interview.
Like many patients, Ken has experienced chronic back pain issues for many years. He's suffered through many spine procedures, ranging from a multi-level IDET to fusion. He spoke candidly and thoughtfully about managing his painful condition while working as a police detective.
And we talked openly about the all the research he did: using the Internet, talking to patients, meeting with doctors and talking things over with his supportive wife. Ultimately, Ken did decide to have surgery and reports that he is doing much better after a two-level disc replacement. Here he is with Mary, against the backdrop of the European countryside…
Cindy
My first few patient interviews went really well. I’ll share a bit now about Cindy, then more about Ken next week. In short, they are both amazingly interesting and warm people. Cindy lives in downtown Manhattan. We greeted her outside her apartment and she spotted us before we recognized her. After all, we’ve never met…and we gave ourselves away on the sidewalk with some light equipment!
What an interesting day it was, all around. It was my first day of interviewing people, live, on camera. I wasn’t nervous, as Cindy is a very warm person at ease with herself and others. It’s hard to explain - but it’s a very hard-to-describe quality that I’ve noticed in patients that have experienced extraordinary physical challenges. We’ll talk about this quite a bit more on this blog, but much moreso in the video.
Oh, by the way, Cindy actually lives in the Pentagon. Well, not the government version, the Manhattan version. It takes about two or three hours to walk from her elevator to the courtyard, where we filmed the interview. It’s an expansive courtyard that afforded a reasonably quiet place for a nice place to talk. And to listen. And to film. And maybe to film some more…that’s a story for another day.
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