A patient’s story – spine surgery gone bad

I had anterior/posterior surgery on election day 2008. I was taken directly to the furthest room from the nurse’s station with no monitors. My husband came in to visit me and I was not breathing. As he called out…I had an out of body experience watching the doctor enter the room and watched him yelling for nurses. They put me into ICU for 4 days.

A number of things happened including the doctor ignoring me when I told him of things I felt were wrong. When they sent me to rehab, they sent me sitting up in a wheelchair van. PAINFUL. I was an inpatient for three days. The 2nd day home I was sent to ER with MRSA, sepsis and three blood clots. In total, I was in hospitals for 2 months.

The end results were that I couldn’t sit for any length of time without pain forcing me to retire on disability….sex was and still is impossible. Even a slight jolt shoots pain through my back. Cannot motorcycle any longer. Can’t walk on uneven surfaces like beaches. Can’t walk long distances. And am permanently on 2 pain meds to be functional without pain. My whole life changed in many ways as a result of this surgery directly and indirectly. At one point they dropped me…hitting the NG tube and knocking it out. That damaged the interior of my nose, and it has never been the same.

I wish I’d never had it. But because I couldn’t walk for more than 3 days before I was in bed with debilitating pain, I didn’t feel I had a choice. I was fused from L2 to S1 (bottom four levels of the lumbar spine).

My perspective

I am going simply list the issues in this situation.

• This surgery was probably performed for degenerative disc disease and back pain. Disc degeneration is not a disease, is part of the normal aging process, and has been well documented to NOT be a source of pain.¹
• The success rate of a spine fusion (welding vertebrae together with metal and bone) for back pain is < 30%.² There is not one research paper that has ever shown that a lumbar fusion for chronic LBP is effective compared with thoughtfully implemented rehab.
• The data also shows that when you have an operation in the presence of untreated chronic pain, you can induce chronic pain at the surgical site (or make it worse) between 40-60% of the time.³ In other words, there is almost double the chance of making a patient worse than solving the problem.
• There is little attention paid to optimizing the chances of success of an elective spine surgery. One paper showed that only 10% of surgeons addressed the known risk factors for poor outcomes prior to surgery.⁴
  • For example, lack of sleep has been shown to CAUSE chronic low back pain. How many surgeons are attending to just that one detail prior to recommending surgery?⁵
• The more levels of the spine that are fused, the higher the complication rate. This person had four levels fused and was fused both through the front and back of the spine. This is a big operation.
• People will undergo surgery because “everything else has been done.” That is simply not true. By systematically addressing all of the factors that affect the complexity of chronic pain, it is a consistently solvable problem.
• 90% of all chronic mental and physical symptoms in your body are physiological and created by sustained exposure to flight or fight stress chemistry. When your body stays revved up, it will predictably break down. The solution lies in learning ways to regulate your threat physiology to that of safety.
• Many surgical decisions are made quickly on the first visit and sometimes you may not even meet the surgeon. This makes no sense. Chronic pain is complex, you are unique, it impossible to deeply understand a situation in any domain of life on one visit.
• We put all of our patients through a minimum of 12 weeks rehab before any elective surgery, and longer if the variables affecting pain weren’t successfully addressed. The process was called, “prehab.”

Do You Really Need Spine Surgery?

I could write a book on this situation, and I did. It is Do You Really Need Spine Surgery? Take Control with a Surgeon’s Advice.⁶ It breaks down the decision-making around spine surgery into two factors.

• The nature of the anatomy
• The state of the nervous system

You’ll fall into one of four quadrants and the choices are clear. If you have a specific anatomical problem with matching symptoms and your nervous system is calm, surgical outcomes are much more predictable. Every other situation is problematic but still solvable.

I am not just trying to sell a book today. My mission is to do what I can do to slow down the juggernaut of aggressive spine surgery.

I was a surgeon who was called a “salvage surgeon.” I would see patients that had many surgeries over their lifetime, and their lives were destroyed. I was able to help many of them out, but it was more with the rehab than with the additional surgeries. At the same time, I was seeing so many patients break free from the grip chronic mental and physical pain with the concepts presented in The DOC Journey, that I could no longer just sit on the sidelines. There were minimal costs, no risks, and patients would thrive. All of the treatments are based on effective and deeply documented modalities.

Be careful

Please do not jump into any spine surgery without really understanding the issues and maximizing your chances of success. Certainly, do not allow any decisions of this magnitude to be made on the first visit. This person had better choices, but they were not presented or implemented.

Chronic pain is a solvable problem, with or without surgery. Surgery is only an option if there is a surgical lesion. A normally aging spine is not in this category. Do not become one of the patients in this blog who has had their life destroyed. As bad as your chronic pain is at the moment, it can be made a lot worse with an ill-advised operation. It is even more tragic in that the solution, as many of my patients have said is, “disturbingly simple.” Do not just trust a physician you barely know. The basic step is to develop a relationship with him or her. Then take control of your decision, pain, and life.

There is still hope

I don’t want this article to end on a down note. As bad as this situation looks, it is still a solvable issue. Your brain is incredibly adaptable, and you can reprogram it in any direction you choose. I have seen many patients in this bad of shape eventually become free of pain. One gentleman had undergone 28 surgeries in 22 years and has now been free of pain for over six years. In fact, he says that “I have never felt better in my life.” Another woman had been in pain for 50 years and has done well for over seven years.

The main factor that determines success is simply your willingness to engage or as one my successful patients has said, “suspend your disbelief.”

Please share your story of a failed spine surgery. I am more than aware that there are many successes, even for chronic low back pain. It is just that the success rate is not high enough to justify the risks of surgery and there are alternatives that are so much better. The world needs to know the downside of a failed spine operation in order to make more informed decision.

Questions for your surgeon

References

1. Jensen MC, et al. Magnetic resonance imaging of the lumbar spine in people without back pain. NEJM (1994); 331:69-73
2. Carragee EJ et al. A Gold Standard Evaluation of the ‘Discogenic Pain’ Diagnosis as Determined by Provocative Discography. Spine (2006) 31: 2115 – 2123.
3. Perkins FM and H Kehlet. Chronic pain as an outcome of surgery: A Review of Predictive Factors. Anesthesiology (2000); 93:1123–1133.
4. Young AK, et al. “Assessment of presurgical psychological screening in patients undergoing spine surgery.” Journal Spinal Disorders Tech (2014); 27: 76-79.
5. Agmon M and Galit Armon. “Increased insomnia symptoms predict the onset of back pain among employed adults.” PLOS One (2014); 9: 1-7.
6. Hanscom David. Do You Really Need Spine Surgery? Take Control with a Spine Surgeon’s Advice. Vertus Press, Oakland, CA, 2019.

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No one thinks that a surgical complication will happen to them. During my spine fellowship, I witnessed a large number of major complications and I was sure that I was going to be better than them – even though they were considered some of the top spine surgeons in the world. I set out on a quest to go without any complications for a year. I did not give up easily, but of course I failed. There is an inherent risk of any surgery with it rising with the complexity of the case. For example, there is a trend in the United States to perform multiple-level fusions, sometimes the length of the spine. The complication rate in adults is high and a significant percent of them are devastating – catastrophic. (1) Over 32 years of performing complex spine surgery, I watched hundreds of patients, including my own, have poor outcomes – sometimes from a direct technical problem in surgery and often from medical problems that can occur from prolonged operative time and blood loss. Even without a complication the pain may persist or worsen. (2)

Do You Really Need Spine Surgery?

The purpose of this article is to admonish you to consider if you really need the surgery and will the benefits outweigh the risks?  Every day in clinic I had several patients tell me that if they had just understood how much worse off they could be after surgery, they never would have undergone the procedure. Most of the time the surgery went well but their pain was worse. Add in a complication and the resulting situation was often intolerable.

What is making the current surgical environment harder for me to deal with is that we witnessed hundreds of patients go to pain free by systematically implementing medically treatments with minimal risks. Back in Control,  provided a framework that organized the patients thinking and most of it was implemented on their own. We now have The DOC Journey, which reflects the successes of many patients. The key is you taking charge of your own care once you understand the nature of chronic pain. One of he worst parts of this scenario is that many of the patients who got stuck in this hole of a failed back surgery, had a normal spine for their age. Surgery should not have ever been offered to them since you can’t fix what isn’t broken.

A life changing complication

I remember the moment my surgical life changed many years ago. I was in clinic about 11 o’clock in the morning when the ICU nurse called me and told me that my patient I had done surgery on yesterday couldn’t see. I had seen him earlier on rounds and he seemed fine. I rushed over to the unit and he was completely blind. He told me that he thought someone had placed a cloth over his eyes as part of his post-operative care. We had done an eight-level fusion on him for what we call, “flatback.” He had lost the curvature of his lower back from degeneration of his discs and he was tilted forward. He was experiencing a lot of pain.

The surgery had gone well and my colleague and I complemented each other on how well it went. However, one of the risks of any spine surgery in the face- down position is the blood supply to the eyes. For reasons that are unclear the flow was compromised and the nerves to his eyes were damaged. He never regained any of his vision. Needless to say, everyone was devastated. The only inspiring part of the situation was his attitude. He walked into my office about three months later and said, “This is the deck of cards life has dealt me and I am going to play it.”

He returned to see me about ten years later to have some of the hardware removed that was prominent. I was learning more about chronic pain and the effect that stress has on the body’s chemistry and perception of pain. I talked to him for a while and found out that just prior to his surgery, he was under extreme marital and family stress that eventually culminated in a divorce. I was so convinced that surgery was the answer that I did not pick up on it. I was not aware at the time how stress translates into changes in the body’s chemistry, which creates many different symptoms. what a critical factor

Didn’t need it

Today, in my practice, he wouldn’t have been a candidate for surgery. His flatback was not as severe as many I have seen rehab successfully without surgery. I would have had physical therapy stretch out his hips and get him into the gym. His sleep and stress would have been addressed and he would have done well. As I didn’t know how successful a structured approach could be, I did not offer these options to him. I would have certainly waited until his life stresses calmed down. He is blind from an operation that could and should have been avoided.

“If I Were Your Spine Surgeon”

Please read this book, Do You Really Need Spine Surgery? Take Control with a Surgeon’s Advice. Within a couple of hours you will understand the reasoning behind the decision to undergo a spine operation or not. There are two factors to consider; 1) Is there a structural abnormality that is amenable to surgery? 2) Is your nervous system in a calm or hypervigilant state? You will be able to place yourself into one of four quadrants with each one have a specific treatment approach. Watching many patients having their normally aging spines destroyed by ill-advised surgery is what caused me to quit my practice to pursue bringing proven effective treatments into the public domain. There are thousands of research papers documenting what should be done to treat chronic mental and physical pain that is not being widely implemented. Sustained levels of inflammatory markers are the hallmark of chronic disease. Surgery for inflammation cannot and does not work. There is not one paper in the last 60 years that shows that fusing someone’s spine for pain works.

It appears to me that many people put more effort in buying a car than they do making a decision about undergoing spine surgery. Although they are informed of the potential complications, there is no way to comprehend how bad life can be trying to live with a failed spine surgery. You are the one with the pain. No one else can accurately make the final decision whether the pain you are experiencing is worth the risk. Video: Get it Right the First Time

Anxiety

BTW, is the pain you are trying to solve your mental or physical pain? Please read this post I wrote, “Am I operating on your pain or your anxiety?” Anxiety does respond to the treatments outlined in The DOC Journey. As the anxiety drops, nerve conduction slows down and your pain drops. (3) Surgery will not solve anxiety even if the operation relieves your physical pain.

Don’t play roulette with your life. There is no turning back on this decision and there is no need to gamble. Once you understand the issues, you can make the correct choice for you.

1. Cho SK, Bridwell KH, Lenke LG, Yi JS, Pahys JM, Zebala LP, Kang MM, Cho W, Baldus CR. Major complications in revision adult deformity surgery: risk factors and clinical outcomes with 2- to 7-year follow-up. Spine (Phila Pa 1976). 2012 ;37(6):489–500
2. Perkins FM and Henrik Kehlet. “Chronic Pain as an Outcome of Surgery.” Anesthesiology (2000); 93: 1123-1133.
3. Chen X, et al. “Stress enhances muscle nociceptor activity in the rat.” Neuroscience (2011); 185: 166-173.

The post Comprehending the Downside of Spine Surgery first appeared on Back in Control.

The post Comprehending the Downside of Spine Surgery appeared first on Back in Control.