The following narrative comes from Chelsea Rubinstein, a young woman I met recently at a seminar. After hearing me mention that I had a website dedicated to telling personal healthcare stories complemented with resources and information to educate, empower, and encourage others on their own “patient path,” Chelsea shared her story with me. Then she offered to post it on this site in the hope that it would benefit others struggling with extensive spinal issues and back pain—and considering what to do about it.
If you have spinal deformation or degenerative disc disease and are looking for information and support, you will find it here. In Chelsea’s words:
“After two years of physical deterioration, pain, and mental anguish, I finally had the surgery my doctor recommended—and it took away my pain. Afterward, he asked me to write this narrative, suggesting that if I could save even one person from the suffering I endured, it would make everything I went through worthwhile.”
Chelsea chose November 1, 2016 as the date to publish her story in part to commemorate the twenty-second anniversary of her first back surgery when she was eleven years old. And it was four years ago this month that she made a very difficult decision about a second procedure that would affect the rest of her life. Read on for the moving, inspiring story of perseverance, courage, and self-empowerment that led to freedom from agonizing back pain and disability.
INTERACTIVE POST: Highlighted/underscored text, images, and media contain links to reliable external resources. The stories, information, and resources on this site are intended to supplement—not replace—the advice of your clinical team.
Chelsea: Why I’m Sharing My Story
After my second spinal surgery four years ago, I met a lot of interesting and inspirational people at physical therapy. We swapped war stories—some of success, which could often be very encouraging, and some of disappointment, which could often be quite disheartening. We shared stories of woe, helped each other set goals, and sometimes just listened. We were part of a huge support system—even if we did not suffer from the same ailments, we all understood what it was like to live with pain.
One thing we often talked about was our relationships with our doctors. Most of us felt very close to the physicians and surgeons that took care of us. In talking to the people at physical therapy, I couldn’t help but compare the decisions they made in dealing with their medical conditions to my own choices. Did they do extensive research? Did they seek out reputable hospitals? How many doctors did they see for additional opinions? How did they go about choosing a surgeon?
For me, the research I did prior to surgery was both extensive and exhausting. The time and energy I put into educating myself and worrying about my situation was as tiring as living in pain every day. I will never forget the stress, dread, and mental anguish I experienced between the time I was diagnosed with degenerative disc disease and the time I—finally—had surgery. In the end, my efforts paid off—I chose a surgeon that cured me of my pain. Now, both my physical and mental stress are gone.
This narrative is dedicated to all the patients, family members, and friends of people who are suffering with severe pain. In sharing my experience, I hope I can help alleviate at least one other person’s stress. It is natural to be scared; and there is nothing wrong with doing research and asking as many questions as necessary until you are educated enough to make an informed decision—in fact, it’s the right thing to do.
I hope my story will inspire readers to get answers, seek multiple opinions, and take an active role in their healthcare decisions. Good luck, and don’t give up hope.
How My Life Was Affected—Two Years of Anguish Was Enough
It was November 2012—my friend’s birthday—and we were celebrating at the exclusive club inside Revel, then a brand-new casino in Atlantic City. We were with a large group of people, and rather than dancing and smiling and drinking, I was trying to hide from them so that no one would be concerned with me. I was tired of everyone being concerned with me—tired of the pain, tired of the shame, tired of the pity. I just wanted to be a normal twenty-nine-year-old out with her friends, partying.
“Hon, you can’t sit there,” the bouncer said as he tapped me on the shoulder. I was sitting in my fancy dress and heels in the dirty stairwell. People were staring at me, pointing and laughing as they walked by.
“I’m not drunk,” I pleaded to the bouncer. “In fact, I just got here five minutes ago. I have back problems, and I just need to rest for a minute.”
“OK, that’s fine—but you can’t sit here,” he said, feigning a look of concern. I knew he didn’t believe me and that he thought I was thoroughly intoxicated.
I struggled back to my feet and found my brother and my friend Brittany. “You OK?” they asked simultaneously. They were already used to my back problems. After all, it was almost two years since my diagnosis. At this point, the pain was almost constant, and the length of time for which I could walk or stand was steadily decreasing, even when I wore my most comfortable sneakers.
“I’m OK,” I replied, trying to hide my agony. “I just need to sit.” We searched around the enormous club, but there were no seats. Finally, we found a couch, but it was in the VIP area—$1,300 for bottle service. I could feel the eyes of the bouncers burning into me. I was already on their radar, and they just needed an excuse to kick me out.
My brother, Brittany, and I went outside to the smoking area on the roof, the only place where we could find a place to sit. On this late night in November, the wind sliced through our entire bodies. I had no place to go—inside there was no place to sit, and outside we were tortured by sub-zero temperatures. Standing was no longer an option.
“I’m going back to the room,” I told them, unable to look either of them in the eye. “You guys stay here. I’ll be fine.” No matter how much I begged, they would not let me go alone. There was no way they would let me take a taxi back to Harrah’s, where we were staying, and then walk back to the room by myself when I could barely walk at all. I offered to reimburse them for the $40 cover charge to enter the club, but they refused. And by the time they returned after getting me back to the room, the line would be too long and they would never get back in. The shame was unbearable. We left without even saying goodbye to the birthday boy.
This was the deciding moment. I could not do this anymore. I had put it off long enough. I had suffered long enough. I had allowed my friends and family to endure my pain and suffering long enough. The quality of my life had deteriorated enough. I could no longer go out with friends, go shopping, dance, or even walk or stand for more than 5–10 minutes. How much I didn’t want to have yet another surgery on my spine no longer mattered. It had become a matter of necessity.
How It All Began—Scoliosis in Childhood
In 1994, when I was eleven, I needed surgery to fix severe scoliosis. My spine was shaped like the letter “S,” with a double curvature of 48 and 52 degrees (measured using the Cobb angle). At the time, my childhood innocence and ignorance were working in my favor. I was entering middle school, and my choices were, in my mind, simple: (1) wear a back brace and wait a few years for a surgery that was inevitable anyway, or (2) have the surgery and move on with my life with no bracing. My family did extensive research, including visiting five pediatric orthopedic surgeons in New Jersey, New York, and even Boston.
In the end, we chose surgery. My pediatric orthopedic surgeon, Dr. Samuel Laufer, did the procedure at Robert Wood Johnson in New Brunswick, NJ. He fused my spine from levels T3 (thoracic vertebra 3) to L3 (lumbar vertebra 3), placing bars, hooks, and rods in my spine to straighten it out. I was out of school for a painful two months, but after recovery I was fine for the next 14 years!
How It Started All Over Again—Sciatica and Worse in Young Adulthood
In my mid-twenties, I began to experience sciatica (nerve pain that ran down my leg). It began to affect my everyday life, and I started to feel depressed. I visited several doctors and had an MRI. Unfortunately, the MRI was inconclusive because the apparatus in my spine blocked the view. My doctors suggested core strengthening exercises and a strict diet. Having struggled with my weight my whole life, I was accustomed to doctors telling me this type of thing. So I went on a diet, and after losing only nine pounds, the sciatica disappeared—life was back to normal. (Click to view a video animation of sciatica at Spine-health.com.)
Two years later, I was down 40 pounds! I was working out six to seven days a week at the gym, doing Zumba®, salsa, and hip-hop classes. I was even going to get my license to become a Zumba instructor! I was looking and feeling the best I had in my life.
In the summer of 2010, when I was 27, I was on vacation in Aruba, shopping with my friends. All of a sudden, I felt the familiar twinge of pain down my leg. For anyone who has ever experienced sciatic pain, it is unmistakable. “How can this be?” I thought. “I’m in the best shape of my life!” I tried to ignore it for a few weeks, but I finally had to see a doctor.
The first doctor I visited was Dr. Steven Reich, an orthopedic surgeon in North Brunswick, NJ. My family trusted him because he had done my brother’s surgery for a bulging disc (following an accident) several years earlier. My brother’s surgery was done laparoscopically, and he was in and out of the hospital in one day and back to work in two weeks—problem solved. When my mother and I arrived at Dr. Reich’s office, I was calm and collected. I thought he would send me to physical therapy, and if that didn’t work, perhaps I would have to endure a laparoscopic outpatient surgery, like my brother. I could handle that—no big deal, especially after what I went through when I was eleven.
Dr. Reich diagnosed me with degenerative spondylolisthesis and arthritis. He explained that the cartilage between my vertebrae had deteriorated so that my discs were resting bone on bone. My disc had also shifted forward and was resting on my sciatic nerve, causing the pain. We knew it was pretty severe because I had pain all the way down my leg and pins and needles in my toes. In addition, my big toe had lost a significant amount of strength.
He recommended spinal fusion surgery. They would place a spacer between my vertebrae and add some screws to hold it all in place. Then they would scrape out the arthritic bone and decompress the nerve. In order to do so, they would have to remove a piece of the apparatus that was already in my spine to gain access to the area. I would be out of work for approximately three to four months. It would take six months to a year to fully recover.
A wave of emotions ran through me, including sadness, fear, self-loathing, self-pity, dread, and—most of all—anger. I was angry that I had to endure yet another surgery on my spine. Wasn’t one major surgery in a person’s life enough? I was most angry at Dr. Reich. I hated his diagnosis, and I felt his attitude was too nonchalant. He even cracked jokes and tried to make light of the subject. But to me, this was not in any way a laughing matter, and at the time I did not appreciate his bedside manner.
I felt like I was eleven years old again, back in the pediatric orthopedist’s office when my mom and I had first gotten the news that I needed surgery. Only this time, I was not armed with childhood innocence and naiveté. On the contrary, I had the painful memories and the experience of the first surgery working against me. There was no way I was having another procedure! Dr. Reich explained that waiting to have the surgery until I was ready was not physically damaging; however, the quality of my life would continue to deteriorate as the pain grew worse and worse over time. I was convinced that I could deal with it and left the office, determined not to have the procedure until I decided it was the right time.
How I Tried to Avoid the Inevitable . . . While Gathering Information
In the following months, I pursued several other opinions. I was looking for a quick fix. After all, before my brother’s laparoscopic surgery, several other doctors wanted to perform traditional surgery on him. It was Dr. Reich who offered him a less invasive option. If he could do this for my brother, surely he could do this for me! My faith in Dr. Reich’s recommended approach to my problem dwindled at this point, and I was determined to find another doctor who would offer other options.
I visited several other orthopedic surgeons in both New Jersey and New York City. The diagnoses were all the same, and all the doctors recommended spinal fusion surgery. However, they all had different methods and approaches. Dr. Reich had said he would go through the same incision in my back that was already there from the previous surgery. Dr. Darryl Antonacci, a nationally known spine specialist in Princeton, wanted to go in through my side. Dr. Russel Huang, an orthopedic spine surgeon at the Hospital for Special Surgery in New York, wanted to fuse two of my vertebrae instead of just one, going in through both my back and my abdomen. (This option frightened me.) I even spoke to a doctor in San Francisco who wanted to remove all the hardware in my back before the new spinal fusion. (This option really frightened me.)
All these differing opinions and approaches just increased my anxiety and stress levels. My hopes of finding a quick fix rapidly dissipated, and now all I wanted to do was to find two doctors to agree on how to approach the surgery. I felt like I carried a huge weight with me all the time. Everyone around me was like, “Just get the surgery!” They didn’t understand the implications the way I did. And I was a just fourth-grade teacher, not a medical expert; I felt completely ill-equipped to make the decision about which approach was the best. So I continued to ignore the problem.
And I continued to live my life to the fullest. Shortly after my initial visit with Dr. Reich, I got my license to teach Zumba. I gradually gained more and more of a following until I was teaching six to seven classes a week, with my class sizes averaging between 30 and 80 people. I taught at some of the best gyms in the area, did several Zumbathons for charity, and become a well-known and sought-after instructor. Mentally, I was feeling amazing! I had never thought I would enjoy exercise, never mind become an exercise instructor. I was continuing to improve my physique while motivating and inspiring others with stories of my weight loss journey and fitness goals.
But my body was suffering every day. At night, when I was teaching Zumba, the adrenaline carried me through the pain. But during the day, I was hardly able to perform my teaching duties. I tried my very best not to complain too much or allow my problems to affect others, and I continued to teach Zumba for a year. But I finally had to stop in May. Stopping Zumba was a last attempt to continue postponing the surgery. But for anyone who knew me, and understood how much Zumba meant to me, it was obvious that my pain levels were greater than I let on. If I was giving up Zumba, everyone knew it was a big deal.
After that, I still managed to lead a full social life, go on two international vacations, and have a relatively normal existence. But my back problems began to govern the things I would and wouldn’t do. Social situations in which I could not participate became more and more frequent as my pain continued to get worse. The last straw was the Atlantic City episode that I described at the beginning of this narrative, when I decided that it was, finally, time. But I still had not found two doctors to give me the same opinion as to which approach was best. I felt like I had been in limbo for the past two-and-a-half years, and I could not come up with the best means to a good end.
After stopping Zumba, I returned to physical therapy for core strengthening. Nick Maniscalco, my physical therapist at Twin Boro Physical Therapy in Edison, NJ, is, to this day, one of the most important and influential people in my life. He has been a tremendous source of knowledge, as well as emotional support. He had a history of back problems himself, and he had surgery at the age of 29 as well. He spoke very highly of his doctor, Dr. Michael Neuwirth, an orthopedic spine surgeon at New York Beth Israel, so I made an appointment to see him.
Dr. Neuwirth recommended fusing one of my vertebrae, but with both a posterior and anterior approach. He was a seasoned surgeon, and he knew most of the doctors I had already seen. This included Dr. Laufer, who had performed my scoliosis surgery, and Dr. Reich—who had been Dr. Neuwirth’s intern! Dr. Neuwirth raved about Dr. Reich’s abilities, giving him his highest recommendation and endorsement. I liked him a lot, and I left his office practically prepared to schedule surgery with him. But with a lot of coaxing, my mother eventually convinced me to visit Dr. Reich one more time to try to understand why he preferred just an anterior approach when Dr. Neuwirth recommended going in both posteriorly and anteriorly.
How I Finally Decided to Have Surgery—“Back” to the Future
When I visited Dr. Reich again, I was in a very different frame of mind than when he first diagnosed me. I was mentally and physically prepared for surgery. However, I still had these unsettling feelings towards him. After all, he had been the bearer of bad news two years earlier. And I dreaded hearing his jokes and listening to his easy explanations of how he would literally dissect me. I cringed at the memories of him making light of the whole ordeal as if I were having a procedure as simple as getting a cavity filled. At least, that’s how I felt at the time, when I was under great stress.
When my mother and I arrived at Dr. Reich’s office, he greeted us both with warm, genuine hugs, as did various other familiar members of his staff. He explained his rationale to me and made me feel very comfortable with his recommendations. He was the same doctor I remembered, yet he seemed more patient and thorough in his explanations and answers to my countless questions. I was much more educated about the subject now, so the things that he said actually made sense to me.
All of a sudden, I realized that Dr. Reich’s nonchalance was not due to the fact that he didn’t understand the severity of the situation; rather, it was to keep me as calm as possible. And what I had perceived as an unusual bedside manner was really just his way of conveying confidence in his own abilities to fix my back, thereby making me feel confident in him. I knew that he was tailoring his surgical recommendations to me, Chelsea—the person, the teacher, the 29-year-old single girl who wanted a family and kids in the near future. I knew for sure that I was an individual to him, not just another name on a list. I scheduled surgery the next day.
Two weeks later, on December 4, 2012, at age 29, I had my second spinal procedure at Robert Wood Johnson in New Brunswick, where I’d had my scoliosis surgery in 1994. The vertebrae at L4 and L5 (lumbar area) were fused, and this would limit my mobility—including teaching Zumba. But it would remove my pain.
Lumbar Spine Anatomy – Image at Spine-health.com © Veritas Health, LLC
“Lumbar” is derived from the Latin word “lumbus,” meaning “lion.” And the lumbar spine is built for both power and flexibility—lifting, twisting, and bending.
The lumbar spine has several distinguishing characteristics:
- The lower the vertebra is in the spinal column, the more weight it must bear. The five vertebrae of the lumbar spine (L1-L5) are the biggest unfused vertebrae in the spinal (vertebral) column, enabling them to support the weight of the entire torso.
- The lumbar spine’s lowest two spinal segments, L4-L5 and L5-S1, which include the vertebrae and discs, bear the most weight and are therefore the most prone to degradation and injury.
- The lumbar spine meets the sacrum (sacral region) at the lumbosacral joint (L5-S1). This joint allows for considerable rotation, so that the pelvis and hips may swing when walking and running. (Note: Chelsea may need to have this area fused in the future; see end of post.)
When I woke up from surgery, I was in a lot of pain. I felt scared and sad. But I walked for the first time only six hours later, and all my pain from before surgery was completely gone! Of course I had post-surgical pain, but that was nothing compared to how I felt upon entering the hospital. I had mentally prepared to stay in the hospital for six days, but I was sent home on the fourth day. I felt like a huge weight had been lifted from my shoulders, and my thoughts were no longer focused on continuing to cope with the pain, but rather with what I could do once I was recovered. My state of limbo was finally over.
How My Life Has Changed—Living into the Future
It has been four years since my surgery, and my nerve pain is 100% gone. My recovery was not half as bad as I anticipated. I did physical therapy three times a week for about four months, I walked around my neighborhood for extra exercise, and I slowly started going back to the gym. I returned to work in about three months with no restrictions.
One side effect that I did not expect was the sheer gratitude that I felt. I was, and am, grateful to my friends and family for all the support they gave me before, during, and after surgery. I am no longer angry that I had to have surgery again; instead, I feel thankful that my problems were fixable with surgery. I am also grateful to have a great job and medical benefits that carried me through that time. I am eternally thankful that Nick was my physical therapist, for without his physical and mental support I do know how much longer it would have taken me to make the decision that ultimately gave me back my life.
And most importantly, I am thankful for Dr. Reich. The admiration and respect that I have for him is indescribable. I feel like my whole two-and-a-half-year journey started with and led me back to him. It makes me feel like everything happens for a reason, and things happened the way they were supposed to. The personal attention he gave me in terms of my diagnosis, my hospital stay, and my recovery were completely above and beyond my expectations. He has completely changed my life by fixing my back and removing this incredible mental anguish that I was carrying. I can actually say that, despite his unconventional manner, I love him. In fact, he asked me to write this narrative, suggesting that if I could save even one person from the suffering I endured, it would make everything I went through worthwhile.
There are certain things that I am not allowed to do—high-diving into water, skydiving, tumbling, and any high-impact exercise—which, unfortunately, includes Zumba. I still feel a little stiff sometimes, and doing new things makes my muscles very sore. My back also gets tired very easily, and I try to avoid heavy lifting and excessive bending and twisting. But all this is a small price to pay to have my life back.
It is likely that I will need another fusion surgery in the future, probably L5-S1. (See the Spine-health.com information on lumbar spine anatomy above.) This thought undeniably scares me, but having Dr. Reich, Nick, and my family and friends in my corner makes it a little easier. If and when that time comes, I will not feel the need to seek out multiple opinions from other doctors. In my own time and when I am ready, I can say without hesitation that Dr. Reich will be the surgeon who will operate on me. He and his team will give me the best care I could ask for, and I will be confident in him and his recommendations.
Until then, you will find me living my life, pain-free and forever changed.
It has been a pleasure working with Chelsea on her story of spinal surgery and restored health. A vibrant, outgoing, enthusiastic person, Chelsea is obviously making the most of her pain-free life. Her regrets about post-surgical limitations are few because life is offering her so many more pathways to explore.
I share Chelsea and her doctor’s hopes that this narrative will benefit others considering what to do about severe back pain caused by degenerative disc disease. Please note that Chelsea and I are not offering medical advice to readers—individual patients must make their own informed decisions about their particular situations in conjunction with their healthcare practitioners.
To send Chelsea a comment or question, please use the Contact Form. Please also feel free to comment publicly below.
– Pamela Bond Contractor, Editor
Links Are Current as of November 1, 2016
The stories and resources on this site are intended to provide education, enlightenment, empowerment, and encouragement to inform your conversations with your healthcare team. They supplement—and do not replace—the advice of your clinicians.
Johns Hopkins Medicine: Scoliosis (includes comprehensive information, images, and video)
National Institute of Arthritis and Musculoskeletal and Skin Diseases: Scoliosis (includes comprehensive information and schematic images)
National Scoliosis Foundation – (List of) Helpful Links (patient-led nonprofit organization)
SCI-Recovery.com: Anatomy of the Spinal Cord (spinal cord injury recovery site; includes anatomy)
Book: Zumba®: Ditch the Workout, Join the Party! The Zumba Weight Loss Program. By Beto Perez (creator of Zumba®) with Maggie Greenwood Robinson, Ph.D. New York: Wellness Central, Hachette Book Group, 2009.