Very Disturbing Report on Scoliosis Surgery Pain–Recently Published (2013)
When severe scoliosis in teenagers progresses to a point at which lung and heart function are compromised, surgery can become a necessary intervention. Spinal fusion surgery is a very complex and invasive elective surgical procedure that can result in excruciating postoperative pain. A 2013 study detailed the experiences of patients (ages 8-25) who underwent corrective spinal surgery between 2004-2007 and the results were an unsettlingly consistent tale of extreme pain, debilitating nausea and an overwhelming sense of helplessness.
The study found, on average, most postoperative pain rated as severe and lasting for roughly 5 days. Of those adolescents, 60% also reported “persistent pain or recent onset pain 5-12 months after surgery”. Patients from the study detailed experiences of mismanaged and unbearable pain (most frequently while getting in and out of bed, standing and during chest tube removal).
“I felt like I was hung up on meat hooks.”
“Sometimes it feels like a knife is cutting into my back.”
As one can imagine, pain management is an essential part of recovery and can involve the administration of both oral and intravenous pain medications and spinal analgesics. However, systemic opioids have many side effects: nausea, constipation, pruritus (itching), urinary retention, sedation, respiratory depression and decreased blood pressure. Therefore, researchers also found nausea to be a common complaint. Nausea persisted for an average of 3 days–though some patients experienced it for the duration of their hospital stay or even after they were released. Parents reported drug treatment as ineffective and that the nausea only subsided when opioid medication doses were decreased. Some patients reported not eating while in the hospital due to nausea and some even felt the nausea was worse than the actual pain.
By far the most heartbreaking accounts were those of the parents who felt helpless as their children were suffering. Patients and their parents both described inadequacies of nursing staff, failure of pain control equipment, anxiety, nightmares and excessive time spent waiting for assistance. Researchers indicated that “symptoms of post-traumatic stress were vividly described in narrative interviews with some of the adolescents” and this is most obvious with the parental accounts:
“ She had fear in her eyes. We have never seen that expression before. She cannot express herself you know! I can’t remember whether she screamed or moaned or if she stared at us with pure fear trying to say–help me!”
“Everything was OK until the catheter with analgesics stopped functioning. After that there were several difficult days with severe pain. My daughter has had nightmares about pain since then.”
“It was terrible to see my daughter having so much pain and not being able to help her.”
What’s truly shocking though is that both parents and patients rated their overall hospital stay as satisfactory. The authors suggest that such a discrepancy may exist because satisfaction was based on other factors or that they simply expected such an experience.
Since this study, pain management techniques have been modified to include “patient-controlled epidural analgesia”. However, the authors are quick to add that the most painful instances occurred when the epidural catheters failed and when patients were switched from the catheters to oral medications.
Patient Controlled Analgesia (PCA)
“Patient Controlled Analgesia (PCA) pumps were developed to address the problem of undermedication. They are used to permit the patient to self-administer small doses of narcotics (usually Morphine, Dilaudid, Demerol, or Fentanyl) into the blood or spinal fluid at frequent intervals. PCA pumps are commonly used after surgery to provide a more effective method of pain control than periodic injections of narcotics.” (ppahs.org)
Video from the ECRI Institute:
A separate study, published the same year, on postoperative pain from spinal fusion surgery assessed pain scores, use of opioids, and the recovery process. It stated:
“the standard of care for pain management for spine surgery in children consists of continuous infusion of intravenous (IV) morphine supplemented with patient-controlled analgesia (PCA). However, to achieve satisfactory pain control with this method, high doses of opioids must be administered. Unfortunately, use of opioids is associated with serious adverse effects, including nausea, vomiting, pruritus, sedation, and respiratory depression, which often delay patient recovery.”
A real scoliosis surgery in progress:
WARNING VIDEOS CONTAIN VERY GRAPHIC CONTENT! (click to play)