It is not easy dealing with a neck, back, or spinal condition. The pain associated with these conditions is already difficult enough to manage. When you factor in the additional stress associated with properly educating yourself on the condition, determining treatment options, and deciding whether or not to have surgery, your ailment can consume your everyday life.
My advice — do not take this on alone.
Why Is Support Important To Your Treatment?
You need to focus as much of your energy on your treatment and rehabilitation. As such, proper physical and emotional support is paramount to lessen the burden of your condition and expedite your recovery.
Now before you dismiss this article as too “touchy-feely,” realize that psychosocial factors are gaining increasing focus in surgical outcomes research.
Psychosocial factors — such as your mood, temperament, personality, emotional well-being, perception of disease state, belief in treatment, work status, and coping strategies — can all combine and interplay to influence your treatment outcomes.
While admittedly, the available studies involve small cohorts of patients and as such, the statistical quality of the research is on the lower end, there are some interesting trends:
Life stress and lack of a reliable social support network have been associated with poor patient-perceived outcomes following lumbar spinal decompression surgery
Individuals who report occupational stress are less likely to return to work following lumbar spine surgery than individuals who deny significant occupational stress
Social support from a spouse, family member, or friend has been positively associated with long-term pain relief following lumbar spine surgery
The aforementioned trends make intuitive sense. If you have ever had to deal with a difficult decision or life event, more often that not you sought a loved one’s advice or at least vented about your fears and frustrations. Dealing with a medical condition and possible surgery should be no different. However, far too often, I see patients trying to “go it alone” and providing their family and friends with only cursory details about their condition and treatment. It is as if society has conditioned us to keep such medical information completely private so as not to burden others. While I am not advocating that my patients provide complete public disclosure of their medical condition, enlisting a few trusted pillars of social support can go a long way to improving treatment outcomes.
Your family, friends, primary care physician, and surgeon can all be potential sources of reliable support. Such support falls into three main categories:
Physical
Assistance with day-to-day activities
Transportation to medical appointments
Financial support
Intellectual
Medical advice and education
Assistance asking questions and processing medical information about diagnosis, prognosis, and treatment options
Emotional
Providing a “caring ear” to listen and understand what you are going through
Motivation to help you directly engage with the process of your recovery
What Is “The Better Way Back®?”
The Better Way Back® (www.thebetterwayback.org) is a unique and valuable online resource for anyone dealing with a neck, back, or spinal condition. It provides reliable information and diagrams about diagnosis and treatment options. The website’s particular strength is the online community of Patient Ambassadors. If you elect to join the community, you can be matched up to an Ambassador based on your age, gender, and diagnosis. Your Ambassador is someone who has dealt with a neck, back, or spinal condition that is similar to yours. They have volunteered to join the community and are available to offer information, insight into their own experience with treatment options, and support and encouragement during your own path to recovery.
The psychosocial support The Better Way Back® provides can be categorized as “Intellectual” and “Emotional,” and is a great option for individuals who may not know anyone else with a spine condition, do not want to burden family and friends, and want to strengthen their social support network.
While I am a proponent of The Better Way Back® and its Patient Ambassador program, there can be issues when seeking support from any resource.
What Issues May Arise When Seeking Support?
The following patient quotes illustrate some potential issues when seeking support:
“My neighbor had low back surgery 15 years ago. It did not go well, and he is in constant pain. Why would I want this to happen to me? I will NEVER have surgery.” - Patient #1
“My coworker just had surgery with you, and she feels great. She had an outpatient operation and was back to work in two weeks. Is this something you can do for me?” - Patient #2
“I was reading online about epidural injections. It seems that most people do not get better after the injection. Why should I get one if it doesn’t work?” - Patient #3
“My best friend hurt himself at the gym and suffered a herniated disc in his low back. He had severe pain for one week, and his surgeon recommended immediate surgery. He feels great now. Why are you not recommending surgery for me?” - Patient #4
While I am glad that these patients sought support and information regarding their medical condition and treatment options, over-reliance on one source of support or information can have negative effects due to some common themes:
Broadly applying another individual’s experience to your own condition
Every individual is different, and this certainly applies to medical diagnoses, treatment options, and response to treatment.
Patient #1 illustrates this theme. While it is unfortunate that his neighbor has ongoing pain, his neighbor may have a different diagnosis, been improperly diagnosed, or had a procedure that was not performed well. Surgery may in fact be an excellent option for Patient #1.
Patient #2 also illustrates this theme. While her coworker was able to have an outpatient procedure, Patient #2’s condition may require a more extensive surgery that is not amenable to the outpatient setting and requires a longer recovery period.
Utilizing primarily anecdotal evidence
All four examples utilize anecdotal evidence from an individual or individuals to guide their decisions. While anecdotal evidence has value, it pales in comparison to large-scale studies with long-term follow-up. Would you rather take the experience of one individual (no matter how trustworthy he or she is) over multiple, well-performed scientific studies with the experience of potentially thousands of patients? Sign me up for the latter.
Incorrectly assuming that coincidence implies causality
Patient #4 is a perfect example of this. While his best friend had resolution of his pain following surgery on a herniated disc, a vast majority of herniated disc symptoms will resolve with time. Surgery is reserved for individuals who have symptoms that have failed to respond to conservative treatment measures. As such, Patient #4’s best friend may have experienced relief of symptoms regardless of whether he had surgery or not.
Placing significant value on information obtained online
Online information is a double-edged sword. While it is important to educate yourself, it can be difficult to know the quality and reliability of online information. Furthermore, individuals who have had either a very positive or particularly negative experience are most likely to be motivated to post something online. As such, review websites (e.g. Yelp) and patient experience posts (e.g. blog, YouTube) should be taken with a grain of salt.
How Do You Avoid These Potential Pitfalls When Seeking Support?
You should be applauded for seeking out support. The evidence suggests that you are helping to create an environment that will facilitate a favorable treatment outcome. While not all pillars of support are created equal, you can overcome these potential pitfalls by using a discerning eye and the following tips:
Avoid over-reliance on one source of information
While this articles highlights The Better Way Back®, the website is not perfect. It is online, industry-sponsored, and utilizes patient experience pieces (potential for anecdotal and overly positive information). The point is for you to be able to recognize the relative strengths and weaknesses of each pillar of support and utilize multiple sources of support to create the best resource for you.
Analyze the quality, reliability, and applicability of information
When analyzing anecdotal information, ask about the person’s symptoms, what treatment options they considered, and what they discussed with their physician. This will provide insight into how applicable their experience is to your situation while also helping to outline your discussion with your own physician.
When analyzing online information, websites that may not have the most reliable information often have some combination of the following features:
a lack of references to scientific papers to support the cited claims
overly positive results without a discussion of the risks and alternatives
links to an online marketplace or articles with an overly commercial slant (e.g. encouraging you to purchase/use a particular brand or product)
Ask questions and have your surgeon provide you with high-quality, scientific evidence
While I encourage you to do your own research and support-seeking, it should only serve in a complimentary role to your personal communication with your surgeon. Your surgeon needs to act as your primary source of information, motivation, and support throughout the process of diagnosis, treatment and recovery. This will include a discussion of your prognosis and anticipated length of recovery. You should make sure to ask about what services you qualify for (e.g. Home Health nursing and therapy) to aid your recovery.
Your surgeon can help you interpret information you have read online or have heard from your family/friends. Your surgeon should also point you towards reliable online sources of information.
As always, the point is to ask your surgeon questions! Utilize all the resources available to you with an emphasis on quality, reliability, and applicability. Do not take your neck, back, or spinal condition on alone.
Share, comment, and ask questions below.
Disclaimer: Scott I. Lee, MD and Spinal Tap Blog have no industry, financial, or personal relationship to The Better Way Back® or its parent organization, Nuvasive, Inc. The information and opinions published on The Better Way Back® do not reflect those of Scott I. Lee, MD, www.ScottLeeMD.com, or Spinal Tap Blog.