Healing chronic back painPosted: July 31, 2022 Filed under: behavior, Breathing/respiration, CBT, cognitive behavior therapy, education, healing, health, meditation, relaxation, self-healing, stress management, surgery | Tags: back pain, Imagery, self-care, visualization 1 Comment
Erik Peper, PhD, BCB, Jillian Cosby, and Monica Almendras
Adapted from Peper, E. Cosby, J. & Amendras, M. (2022).Healing chronic back pain. NeuroRegulation, 9(3), 165-172. https://doi.org/10.15540/nr.9.3.164
In at the beginning of 2021, I broke my L3 vertebra during a motor cycle accident and underwent two surgeries in which surgeons replaced my shattered L3 with a metal “cage” (looks like a spring) and fused this cage to the L4 and L2 vertebrae with bars. I also broke both sides of my jaw and fractured my left shoulder. I felt so overwhelmed and totally discouraged by the ongoing pain. A year later, after doing the self-healing project as part of the university class assignment, I feel so much better all the time, stopped taking all prescription pain medications and eliminated the sharp pains in my back. This project has taught me that I have the skill set needed to be whole and healthy. –J.C., 28-year-old college student
Chronic pain is defined as a pain that persist or recurs for more than 3 months (Treede et al., 2019). It is exhausting and often associated with reduced quality of life and increased medical costs (Yong, Mullins, & Bhattacharyya, 2022). Pain and depression co-exacerbate physical and psychological symptoms and can lead to hopelessness (IsHak, 2018; Von Korff & Simon, 1996). To go to bed with pain and anticipate that pain is waiting for you as you wake up is often debilitating. One in five American adults experience chronic pain most frequently in back, hip, knee or foot (Yong, Mullins, & Bhattacharyya, 2022). Patients are often prescribed analgesic medications (“pain killers”) to reduce pain. Although, the analgesic medications can be effective in the short term to reduce pain, the efficacy is marginal for relieving chronic pain (Eriksen et al., 2006; Tan, & Jensen, 2007). Recent research by Parisien and colleagues (2022) reported that anti-inflammatory drugs were associated with increased risk of persistent pain. This suggest that anti-inflammatory treatments might have negative effects on pain duration. In addition, the long-term medication use is a major contributor to opioid epidemic and increased pain sensitivity (NIH– NIDA, 2022; Higgins, Smith, & Matthews, 2019; Koop, 2020). Pain can often be successfully treated with a multidisciplinary approach that incorporates non-pharmacologic approaches. These include exercise, acceptance and commitment therapy, as well as hypnosis (Warraich, 2022). This paper reports how self-healing strategies as taught as part of an undergraduate university class can be an effective approach to reduce the experience of chronic pain and improve health.
Each semester, about 100 to 150 junior and senior college students at San Francisco State University enroll in a holistic health class that focused on ‘whole-person’ Holistic Health curriculum. The class includes an assessment of complementary medicine and holistic health. It is based upon the premise that mind/emotions affect body and body affect mind/emotions that Green, Green & Walters (1970) called the psychophysiological principle.
“Every change in the physiological state is accompanied by an appropriate change in the mental emotional state, conscious or unconscious, and conversely, every change in the mental emotional state, conscious or unconscious, is accompanied by an appropriate change in the physiological state.”
The didactic components of the class includes the psychobiology of stress, the role of posture, psychophysiology of respiration, lifestyle and other health factors, reframing internal language, guided and self-healing imagery. Students in the class are assigned self-healing projects using techniques that focus on awareness of stress, dynamic regeneration, stress reduction imagery for healing, and other behavioral change techniques adapted from the book, Make Health Happen (Peper, Gibney, & Holt, 2002).
The self-practices during the last six weeks of the class focus on identifying, developing and implementing a self-healing project to optimize their personal health. The self-healing project can range from simple life style changes to reducing chronic pain. Each student identifies their project such as increasing physical activity, eating a healthy diet and reducing sugar and junk food, stopping vaping/smoking, reducing anxiety or depression, stopping hair pulling, reducing headaches, decreasing ezema, or back pain, etc. At the end of the semester, 80% or more of the students report significant reduction in symptoms (Peper, Sato-Perry, & Gibney, 2003; Peper, Lin, Harvey, Gilbert, Gubbala, Ratkovich, & Fletcher, 2014; Peper, Miceli, & Harvey, 2016; Peper, Harvey, Cuellar, & Membrila, 2022). During the last five semesters, 13 percent of the students focused reducing pain (e.g., migraines, neck and shoulder pain, upper or lower back pain, knee pain, wrist pain, and abdominal pain). The students successfully improved their symptoms an average of 8.8 on a scale from 0 (No benefit) to 10 (total benefit/improvement). The success for improving their symptoms correlates 0.63 with their commitment and persistence to the project (Peper, Amendras, Heinz, & Harvey, in prep).
The purposes of this paper is to describe a case example how a student with severe back pain reduced her symptoms and eliminated medication by implementing an integrated self-healing process as part of a class assignment and offer recommendations how this could be useful for others.
Participant: A 28-year-old female student (J.C.) who on January 28, 2021 broke her L3 vertebra in a motor cycle accident. She underwent two surgeries in which surgeons replaced her shattered L3 with a metal “cage” (which she describes as looking like a spring) and fused this cage to the L2 and L4 vertebrae with bars. She also broke both sides of her jaw and fractured her left shoulder. More than a year later, at the beginning of the self-healing project, she continue to take 5-10 mgs of Baclofen and 300 mgs of Gabapentin three times a day to reduce pain.
Goal of the self-healing project: To decrease the sharp pain/discomfort in her lower back that resulted from the motor cycle accident and, although not explicitly listed, to decrease the pain medications.
During the last six weeks of the 2022 Spring semester, the student implemented her self-healing practices for her personal project which consisted of the following steps.
1. Create a self-healing plan that included exploring the advantage and disadvantage of her illness.
2. Develop a step-by-step plan with specific goals to relief her tension and pain in her lower back. This practice allowed her to quantify her problem and the solutions. Like so many people with chronic pain, she focused on the problem and feelings (physical and emotional) associated with the pain. As a result, she often feel hopeless and worried that it would not change.
3. Observe and evaluate when pain sensations changed. She recognized that she automatically anticipated and focused on the pain and anxiety whenever she needed to bend down into a squat. She realized that she had been anticipating pain even before she began to squat. This showed that she needed to focus on healing the movement of this area of her body.
Through her detailed observations, she realized that her previous general rating of back pain could be separated into muscle tightness/stiffness and pain. With this realization, she changed the way she was recording her pain level. She changed it from “pain level” into into two categories: tightness and sharp pains.
4. Ask questions of her unconscious through a guided practice of accessing an inner guide through imagery (For detailed instructions, see Peper, Gibney, & Holt, 2002, pages 197-206). In this self-guided imagery the person relaxes and imagines being in a special healing place where you felt calm, safe and secure. Then as you relaxed, you become aware of another being (wise one or guide) approaching you (the being can be a person, animal, light, spirit, etc.). The being is wise and knows you well. In your mind, you ask this being or guide questions such as, “What do I need to do to assist in my own healing?” Then you wait and listen for an answer. The answer may take many forms such as in words, a pictures, a sense of knowing, or it may come later in dreams or in other forms. When students are assigned this practice for a week, almost all report experiencing some form of guide and many find the answers meaningful for their self-healing project.
Through this imagery of the inner guide script, she connected with her higher self and the wise one told her to “Wait.” This connecting with the wise one was key in accepting that the project was not as daunting as she initially thought. She realized that pain was not going to be forever in her future. She also interpreted that as reminder to have patience with herself. Change takes practice, time and practice such as she previously experienced while correcting her posture to manage her emotions and edit her negative thoughts into positive ones (Peper, Harvey, Cuellar, & Membrila, 2022). Whenever she would have pain or feel discouraged because of external circumstances, she would remind herself of three things:
A. I need to have patience with myself.
B. I have all the healing tools inside me and I am learning to use them.
C. If I do not make time for my wellness, I’ll be forced to make time for my illness.
5. Practice self-healing imagery as described by Peper, Gibney, & Holt (2002) and adapted from the work by Dr. Martin Rossman (Rossman, 2000). Imagery can be the communication channel between the conscious/voluntary and the unconscious/autonomic/involuntary nervous system (Bressler, 2005; Hadjibalassi et al, 2018; Rossman, 2019). It appears to act as the template and post-hypnotic suggestion to implement behavior change and may offer insight and ways to mobilize the self-healing potential (Battino, 2020). Imagery is dynamic and changeable.
The process of self-healing imagery consists of three parts.
- Inspection the problem and drawing a graphic illustration of the problem as it is experienced at that moment of time.
- Drawing of how that area/problem would look when being completely well/whole or disappeared.
- Creation of a self-healing process by which the problem would become transformed into health (Peper, Gibney & Holt, 2002, pp. 217-236). The process focused on what the person could do for themselves; namely, each time they became aware of, anticipated, or felt the problem, they would focus on the self-healing process. It provideshope; since, the person now focuses on the healing of the problem and becoming well.
The drawings of inspection of the pain and problem she experienced at that moment of time are shown in Figure 1.
Figure 1. Illustration of the problem of the pain. Thorns dug deep, muscles tight, and frozen vertebrates grinding.
The resolution of the problem and being well/whole are illustrated in Figure 2.
Figure 2. Resolution of the problem in which her muscles are warm, full of blood, free of thorns, relaxed and flexible and being whole happy and healthy in which her spine is warm, her muscles are warm, her back is flexible and full of movement.
Although she utilized the first image of the muscles warm, full of blood, free of thorns and the muscles relaxed and flexible, her second image of her fully being healed was inspired through a religious statue of Yemaya that she had in her room (Yemaya is a major water spirit from the Yoruba religion Santeria and Orisha of the seas and protector of women). Each time she saw the statue, she thought of the image of herself fully healed and embodying the spirit Orisha. Therefore, this image remained important to her all the time.
Her healing imagery process by which she transforms the image of inspecting of the problem to being totally well are illustrated in Figure 3.
Figure 3. The healing process: The sun’s warm fingers thaw my muscles, lubricate my vertebra, thorns fall out, and blood returns.
For five weeks as she implemented her self-healing project by creating a self-healing plan, asking questions of her unconscious, drawing her self-healing imagery. She also incorporated previously learned skills from the first part of the semester such diaphragmatic breathing, hand warming, shifting slouching to upright posture, and changing language. Initially she paired hand warming with the self-healing imagery and she could feel an increase in body warmth each time she practiced the imagery. She practiced the self-healing imagery as an in-depth daily practice and throughout the day when she became aware of her back as described in one of her log entries.
I repeated the same steps as the day prior today. I did my practice in the early morning but focused on the details of the slowed down movements of the sun’s hands. I saw them as they stretched out to my back, passed through my skin, wrapped around my muscles, and began to warm them. I focused on this image and tried to see, in realistic detail, my muscles with a little ice still on them, feeling hard through and through, the sun’s glowing yellow-orange fingers wrapped around my muscles. I imaged the thorns still in my muscles, though far fewer than when I started, and then I imaged the yellow-orange glow start to seep out from the sun’s palms and fingers and spread over my muscles. I imaged the tendons developing as the muscle tissue thawed and relaxed, the red of the muscle brightened, the ice on and within my muscles started to melt, and the condensation formed as it ran down into collected droplets at the bottom of my muscles. I imaged the thorns lose their grip and fall out, one at a time, in tandem with the droplets falling. I continued this process and imaged my muscles expanding with warmth and relaxation as they stayed engulfed in the warmth of the sun.
At the end of my practice, I did a small stretch session. I felt extremely refreshed and ready for yet another extremely busy day between internship, graduation, and school. I would say I felt warm and relaxed all the way into the afternoon, about 6 hours after my practice. This was by far the most detailed and impactful imagery practice I have had.
The self-healing imagery practice provided me with the ability to conceptualize more than my problem as it showed me the tools to (and the importance of) conceptualizing my solution, both the tool and end result.
Pain and tightness decreased and she stopped her medication by the third week as shown in Figure 4.
Figure 4. Self-rating of sharp pains and tightness during the self-healing project.
At the 14-week follow-up, she has continued to improve, experiences minimal discomfort, and no longer takes medication. As she stated, I was so incredibly shocked how early on [in the project] I was able to stop taking pain medications that I had already taken every day for over a year.
This individual case example provides hope that health can be improved when shifting the focus from pain and discomfort to focusing on actively participating in the self-healing process. As she wrote, The lesson was self- empowerment in regard to my health. I brought comfort to my back. There is metal in my back for the rest of my life and this is something I have accepted. I used to look at that as a horrible thing to have to handle forever. I now look at it as a beautiful contraption that has allowed me to walk across a graduation stage despite having literally shattered a vertebra. I am reintegrating these traumatized parts of my body back into a whole health state of mind and body. Doctors did not do this, surgeries did not, PT didn’t and neither did pain medications. MY body and MY mind did it. I did this.
Besides the self-healing imagery and acting upon the information she received from the asking questions from the unconscious there were many other factors contributed to her healing. These included the semester long self-practices and mastery of different stress management techniques, learning how stress impacts health and what can the person can do to self-regulate, as well as being introduced to the many case examples and research studies that suggested healing could be possible even in cases where it seemed impossible.
The other foundational components that was part of the class teachings included attending the weekly classes session and completing the assign homework practices. These covered discussion about placebo/nocebo, possibilities and examples of self-healing with visualization, the role of nutrition, psychophysiology of stress and factors are associated with healthy aging across cultures. The asynchronous assignments investigated factors that promoted or inhibited health and the role of hope. The discussions pointed out that not everyone may return to health; however, they can always be whole. For example, if a person loses a limb, the limb will not regrow. The healing process includes acceptance and creating new goals to achieve and live a meaningful life.
The possibility that students could benefit by implementing the different skills and concepts taught in the class were illustrated by sharing previous students’ successes in reversing disorders such as hair pulling, anxiety, psoriasis, and pain. In addition, students were assigned to watch and comment on videos of people who had overcome serious illness. These included Janine Shepherd’s 2012 TED talk, A broken body isn’t a broken person, and Dr. Terry Wahl’s 2011 TEDxIowaCity talk, Minding your mitochondria. Janine Shepard shared how she recovered from a very serious accident in which she became paralyzed to becoming an aecrobatic pilot instructor while Dr. Terry Wahl shares how she he used diet to cure her MS and get out of her wheelchair (Shepherd, 2012; Wahl, 2011). Other assignments included watching Madhu Anziani’s presentation, Healing from paralysis-Music (toning) to activate health, in which he discussed his recovery from being a quadriplegic to becoming an inspirational musician (Anziani, & Peper, 2021). The students as read and commented on student case examples of reversing acid reflux, irritable bowel and chronic headaches (Peper, Mason, & Huey, 2017a; Peper, Mason, & Huey, 2017b; Peper, 2018; Peper et al., 2020; Peper, Covell, & Matzembacker, 2021; Peper, 2022).
Although self-healing imagery appears to be the major component that facilitated the healing, it cannot be separated from the many other concepts and practices that may have contributed. For example, the previous practices of learning slow diaphragmatic breathing and hand warming may have allowed the imagery to become a real kinesthetic experience. In addition, by seeing how other students overcame chronic disorders, the class provided a framework to mobilize one’s health.
Lessons extracted from this case example that others may be able use to mobilize health.
- Take action to shifts from being hopeless and powerless to becoming empowered and active agent in the healing process.
- Change personal beliefs through experiential practices and storytelling that provides a framework that healing and improvement are possible.
- Teach the person self-regulation skills such as slower breathing, muscle relaxation, cognitive internal language changes, hand warming by which the person experiences changes.
- Provide believable role models who shared their struggle in overcoming traumatic injury, watch inspirational talks, and share previous clients or students’ self-reports who had previously improved.
- Transform the problem from global description into behavioral specific parts. For example, being depressed is a global statement and too big to work on. Breaking the global concept into specific behaviors such as, my energy is too low to do exercise or I have negative thoughts, would provide specific interventions to work on such as, increasing exercise or changing thoughts. In JC’s case, she changed the general rating of pain into ratings of muscle tightness and sharp pains. This provided the bases for strategies to relax and warm her muscles.
- Focus on what you can do at that moment versus focusing on the past, what happened, who caused it, or blaming yourself and others. Explore and ask what you now can do now to support your healing process and reframe the problem as a new opportunity for growth and development.
- Practice, practice, and practice with a childlike exploratory attitude. Focus on the small positive benefits that occur as a result of the practices. It is not mindless practice; it is practice while being present and being gentle with yourself. Do not discard very small changes. The benefits accrue as you practice more and more, just many people have experienced when learning to play a musical instrument or mastering a sport. Even though many participants think that practicing 15 minutes a day is enough, it usually takes much more time. Reflect on how a baby learns to walk or climb. The toddler practices day-long and takes naps to regenerate and grow. When the toddler is not yet successful in walking or climbing, it does not give up or interpret it as failure or blaming himself that he cannot do it, it just means more practice.
- Have external reminders to evoke the self-healing practices. In JC’s case, the small statue of Yemaya in her room was the reminder. It reminded her to thinks of the image of herself fully healed each time she saw it.
- Guide yourself through the wise one imagery, ask yourself a question and listen and act on the intuitional answers.
- Develop a self-healing imagery process that transforms the dysfunction to health or wholeness. Often the person only perceives the limitations and focusses on describing the problem. Instead, acknowledge, accept what was and is, and focus on developing a process to promote healing. What many people do not realize that if they think/imagine how their injury/illness was caused, it may reactivate and recreate the initial trauma. This can be illustrated through imagery. When we think or imagine something, it changes our physiology. For example, when one imagines eating a lemon, many people will salivate. The image affects physiology. Thus, focus on processes that support healing.
- While practicing the imagery, experience it as if it is real and feel it happening inside yourself. Many people initially find this challenging as they see it outside themselves. One way to increase the “felt sense” is to incorporate more body involvement such as acting out the imagery with hand and body movements.
- When having a relapse, remind yourself to keep going. Every morning is the beginning of a new day, do each practices anew. In addition, reflect of something that was challenging in the past but that you successfully overcame. Focus on that success. As JC wrote, I was also successful in that I gave myself slack and reminded myself that relapses will happen and what matters more is the steps I take to move forward.
- Make your healing a priority that means doing it often during the day. Allow the self-healing imagery and process to run in the back of the head all the time just as a worry can be present in the background. So often people practice for a few minutes (which is great and better than not practicing at all); however, at other times during the day they are captured by their worry, negative thoughts or focus on the limitations of the disorder. When a person focuses on the limitations, it may interrupt the self-healing process. The analogy we often use is that the healing process is similar to healing from a small cut in the skin. Initially a scab forms and eventually the scab falls off and the skin is healed. On the other hand, if you keep moving the skin or pick on the scab, healing is much slower. By focusing on the limitations and past visualization of the injury, self-healing is reduced. This is similar to removing the scab before the skin has healed. As JC stated, “If you don’t make time for your wellness, you’ll be forced to make time for your illness” was 100% a motivating factor in my success.
- Explore resources for providers and people living with pain. See Dr. Rachel Zoffness website which provides a trove of high quality articles, books, videos, apps, and podcasts. https://www.zoffness.com/resources
In summary, we do not know the limits of self-healing; however, this case example illustrates that by implementing self-healing strategies health and recovery occurred. As JC wrote:
To have broken a vertebra in my back and experience all the injuries that came with the accident when I already did not have the strongest mind-body connection was incredibly intense and really heartbreaking and discouraging in my life. And, that made things difficult because I was not able to 100% focus on my healing because I felt so overwhelmed by the feeling of discouragement that I felt. Experiencing this self-healing project, seeing the imagery that helped me not just feel so much better all the time but be able to stop taking all prescription pain medications and eliminate the sharp pains in my back has taught me that I have the skill set needed to be whole and healthy.
Watch the interview will Jillian Cosby inwhich she describes her self-healing process.
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Treede, R-D., Rief, W., Barke, A., Aziz, Q., Bennett, M.I., Benoliel, R., Cohen, M., Evers, S., Finnerup, N.B., First, M.B., Giamberardino, M.A., Kaasa, S., Korwisi, B., Kosek, E., Lavand’homme, P., ; Nicholas, M., Perrot, S., Scholz, J., Schug, S., Smith, B.H., ; Svensson, P., Vlaeyen, J.S., & Wang, S-J. (2019). Chronic pain as a symptom or a disease: the IASP Classification of Chronic Pain for the International Classification of Diseases (ICD-11), Pain, 160(1), 19-27. https://do.org/10.1097/j.pain.0000000000001384
Von Korff, M. & Simon, G. (1996). The relationship between pain and depression. British Journal of Psychiatry, 168(S30), 101-108. https://doi.org/10.1192/S0007125000298474
Wahl, T. (2011). Minding your mitochondria. TEDzIowaCity. https://www.youtube.com/watch?v=KLjgBLwH3Wc
Warraich, H. (2022). Medicine has failed chronic pain patients. Here’s what they need. Pscyhe, Aeon, https://psyche.co/ideas/medicine-has-failed-chronic-pain-patients-heres-what-they-need
Yong, R. J., Mullins, P. M., & Bhattacharyya, N. (2022). Prevalence of chronic pain among adults in the United States. Pain, 163(2), e328-e332. https://doi.org/10.1097/j.pain.0000000000002291
Do self-healing firstPosted: May 27, 2019 Filed under: behavior, Breathing/respiration, emotions, Exercise/movement, health, mindfulness, Neck and shoulder discomfort, Nutrition/diet, Pain/discomfort, placebo, relaxation, self-healing, stress management, surgery, Uncategorized 2 Comments
“I am doing very well, and I am very healthy. The vulvodynia symptoms have never come back. Also,my stomach (gastrointestinal discomfort) has gotten much, much better. I don’t really have random pain anymore, now I just have to be watchful and careful of my diet and my exercise, which are all great things!” —A five-year follow-up report from a 28-year-old woman who had previously suffered from severe vulvodynia (pelvic floor pain).
Numerous clients and students have reported that implementing self-healing strategies–common sense suggestions often known as “grandmother’s therapy”—significantly improves their health and find that their symptoms decreased or disappeared (Peper et al, 2014). These educational self-healing approaches are based upon a holistic perspective aimed to reduce physical, emotional and lifestyle patterns that interfere with healing and to increase those life patterns that support healing. This may mean learning diaphragmatic breathing, doing work that give you meaning and energy, alternating between excitation and regeneration, and living a life congruent with our evolutionary past.
If you experience discomfort/symptoms and worry about your health/well-being, do the following:
- See your health professional for diagnosis and treatment suggestions.
- Ask what are the benefits and risks of treatment.
- Ask what would happen if you if you first implemented self-healing strategies before beginning the recommended and sometimes invasive treatment?
- Investigate how you could be affecting your self-healing potential such as:
- Lack of sleep
- Too much sugar, processed foods, coffee, alcohol, etc.
- Lack of exercise
- Limited social support
- Ongoing anger, resentment, frustration, and worry
- Lack of hope and purpose
- Implement self-healing strategies and lifestyle changes to support your healing response. In many cases, you may experience positive changes within three weeks. Obviously, if you feel worse, stop and reassess. Keep a log and monitor what you do so that you can record changes.
This self-healing process has often been labeled or dismissed as the “placebo effect;” however, the placebo effect is the body’s natural self-healing response (Peper & Harvey, 2017). It is impressive that many people report feeling better when they take charge and become active participants in their own healing process. A process that empowers and supports hope and healing. When participants change their life patterns, they often feel better. Their health worries and concerns become reminders/cues to initiate positive action such as:
- Practicing self-healing techniques throughout the day (e.g., diaphragmatic breathing, self-healing imagery, meditation, and relaxation)
- Eating organic foods and eliminating processed foods
- Incorporating daily exercise and movement activities
- Accepting what is and resolving resentment, anger and fear
- Taking time to regenerate
- Resolving stress
- Focusing on what you like to do
- Be loving to yourself and others
For suggestions of what to do, explore some of the following blogs that describe self-healing practices that participants implemented to improve or eliminate their symptoms.
Acid reflux (GERD) https://peperperspective.com/2018/10/04/breathing-reduces-acid-reflux-and-dysmenorrhea-discomfort/
Hot flashes and premenstrual symptoms https://peperperspective.com/2015/02/18/reduce-hot-flashes-and-premenstrual-symptoms-with-breathing/
Internet addiction https://peperperspective.com/2018/02/10/digital-addiction/
Irritable bowel syndrome (IBS) https://peperperspective.com/2017/06/23/healing-irritable-bowel-syndrome-with-diaphragmatic-breathing/
Math and test anxiety https://peperperspective.com/2018/07/03/do-better-in-math-dont-slouch-be-tall/
Neck stiffness https://peperperspective.com/2017/04/06/freeing-the-neck-and-shoulders/
Neck tension https://peperperspective.com/2019/05/21/relieve-and-prevent-neck-stiffness-and-pain/
Posture and mood https://peperperspective.com/2017/11/28/posture-and-mood-implications-and-applications-to-health-and-therapy/
Trichotillomania (hair pulling) https://peperperspective.com/2015/03/07/interrupt-chained-behaviors-overcome-smoking-eczema-and-hair-pulling/
Peper, E., Lin, I-M, Harvey, R., Gilbert, M., Gubbala, P., Ratkovich, A., & Fletcher, F. (2014). Transforming chained behaviors: Case studies of overcoming smoking, eczema and hair pulling (trichotillomania). Biofeedback, 42(4), 154-160.
Peper, E. & Harvey, R. (2017). The fallacy of the placebo-controlled clinical trials: Are positive outcomes the result of “indirect” treatment effects? NeuroRegulation, 4(3–4), 102–113.
Optimize success: Enrich treatment with placebo-the body’s own natural healing response*Posted: May 2, 2019 Filed under: behavior, health, Pain/discomfort, placebo, surgery, Uncategorized 2 Comments
When randomized controlled studies of pharmaceuticals or surgery find that the treatment is no more effective than the placebo, the authors conclude that surgery or drugs have no therapeutic value (Moseley et al, 2002; Jonas et al, 2015). Even though the patients may have gotten better, the researchers often do not explore questions such as, why did some of the patients improve just with the placebo treatment; what are the components of the placebo process; and, how can clinicians integrate placebo components into their practice to enhance the body’s own natural healing response.
To explore these topics further, listen to Shankar Vedantam’s outstanding podcast, A Dramatic Cure, from the NPR program, Hidden Brain-A conversation about life’s unseen patterns. Also, read the background materials on the website https://www.npr.org/2019/04/29/718227789/all-the-worlds-a-stage-including-the-doctor-s-office
Placebo effects can be a powerful healing strategy as demonstrated by numerous research studies that have persuasively explored the central features of the placebo effect. The research has found that the more dramatic and impressive the procedure, the more powerful the placebo effect. For example, branded medicine with brightly colored packaging is more effective than generic medicine in plain boxes, an injection of a saline or sugar solution is more effective than taking a sugar pill, and placebo surgery is more effective than simply receiving an injection (Branthwaite & Cooper, 1981; Colloca & Benedetti, 2005). For a detailed exploration of placebo, nocebo and the important role of active placebo, see the blog, How effective is treatment? The importance of active placebos.
To see the effect of the placebo in action, watch the well-known British stage hypnotist and illusionist, Derren Brown’s video, Fear and Faith (https://www.youtube.com/watch?v=hfDlfhHVvTY). He magically weaves together a narrative that addresses the powerful influences of the natural, physical, and clinical environment and language used during a ‘therapeutic’ interaction. He shows how the influences of role modeling, the words that increase hope, trust and social compliance, and other covert factors promote healing. It uses the cover of a drug trial to convince various members of the public to overcome their fears using a placebo medicine called “Rumyodin” (which is a made-up name of a fake pharmaceutical) and demonstrates that the limits of experience are the limits of your belief.
This blog post serves as a reminder to ask ourselves as educators and therapists, ‘what can I do to include placebo enhancing components into my practice so that my clinical and educational outcomes are more effective?’ Explore ways to optimize your clinical environment, language use during ‘therapeutic’ interactions, and role modeling to increase hope, trust and social compliance and thereby optimize your clients’ own natural healing response.
Watch the video: Fear and Faith
Branthwaite A, Cooper P. (1981). Analgesic effects of branding in treatment of headaches. Br Med J Clin Res Ed. 282, 1576-8
Colloca, L. & Benedetti, F. (2005). Placebos and painkillers: is mind as real as matter? Nat Rev Neurosci. 6, 545-552.
Jonas, W. B., Crawford, C., Colloca, L. , et al.(2015). To what extent are surgery and invasive procedures effective beyond a placebo response? A systematic review with meta-analysis of randomised, sham controlled trials. BMJ Open, 5: e009655. doi:10.1136/ bmjopen-2015-009655
Moseley, J.B., et al, (2002). A controlled trial of arthroscopic surgery for osteoarthritis of the knee. New England Journal of Medicine. 347(2), 81-88.
*I thank Richard Harvey, PhD., for his constructive feedback and James Fadiman, PhD., for reminding me to reframe the term placebo into “the body’s natural healing response.”
Surgery: Hope for the best and plan for the worst!Posted: March 18, 2018 Filed under: Pain/discomfort, placebo, self-healing, stress management, surgery, Uncategorized | Tags: anesthesia, hernia, iatrogenic illness, technology, urinary retention 17 Comments
The purpose of this blog is to share what I have learned from a cascade of medical errors that happen much more commonly than surgeons, hospitals, or health care providers acknowledge and is the third leading cause of death in the US (Makary, M.A. & Daniel, M., 2016). My goal here is to provide a few simple recommendations to reduce these errors.
It is now two years since my own surgery—double hernia repair by laparoscopy. The recovery predicted by my surgeon, “In a week you can go swimming again,” turned out to be totally incorrect.
Six weeks after the surgery, I was still lugging a Foley catheter with a leg collection bag that drained my bladder. I had swelling due to blood clots in the abdominal area around my belly button, severe abdominal cramping, and at times, overwhelming spasms. For six weeks my throat was hoarse following the intubation. Instead of swimming, hiking, walking, working, and making love with my wife, I was totally incapacitated, unable to work, travel, or exercise. I had to lie down every few hours to reduce the pain and the spasms.
Instead of going to Japan for a research project, I had to cancel my trip. Rather than teaching my class at the University, I had another faculty member teach for me. I am a fairly athletic guy—I swim several times a week, bike the Berkeley hills, and hiked. Yet after the surgery, I avoided even walking in order to minimize the pain. I moved about as if I were crippled. Now two years later, I finally feel healthy again.
How come my experiences were not what the surgeon promised?
All those who cared for me during this journey were compassionate individuals, committed to doing their best, including the emergency staff, the nurses, my two primary physicians, my surgeon, and my urologist. However, given the personal, professional, and economic cost to me and my family, I feel it is important to assess where things went wrong. The research literature makes it clear that my experience was by no means unique, so I have summarized some of the most important factors that contributed to these unexpected complications, following “simple arthroscopic surgery.”
- Underestimating the risk. Although the surgeon suggested that the operation would be very low risk with no complications, the published research data does not support his optimistic statement and misrepresented the actual risk. Complications for laparoscopic surgery range from 15% to as high as 38% or higher, depending on the age of the patient and how well they do with general anesthesia (Vigneswaran et al, 2015; Neumayer et al, 2004; Perugini & Callery, 2001). Experienced surgeons who have done more than 250 laparoscopic surgeries have a lower complication rate. However, a 2011 Cochran review points out that there is theoretically a higher risk that intra-abdominal organs will be injured during a laparoscopic procedure (Sauerland, 2011). In addition, bilateral laparoscopic hernia repair has significantly higher risk than single sided laparoscopic hernia repair for post-operative urinary retention (Blair et al, 2016). My experience is not an outlier–it is more common.
- Inappropriate post-operative procedures. In my case I was released directly after waking up from general anesthesia without checking to determine whether I could urinate or not. The medical staff and facility should never have released me, since older males have a 30% or higher probability that urinary retention will occur after general anesthesia. However, it was a Friday afternoon and the staff probably wanted to go home since the facility closes at 5:30 pm. This landed me in the Emergency Room.
- Medical negligence. In my case the surgeon recommended that I have my bladder in the emergency room emptied and then go home. That was not sufficient, and my body still was not working properly, requiring a second visit to the ER and the insertion of a Foley catheter. Following the second ER visit, the surgeon removed the catheter in his office in the late afternoon and did not check to determine whether I could urinate or not. This resulted in a third ER visit.
- Medical error. On my third visit to the emergency room, the nurse made the error of inflating the Foley catheter balloon when it was in the urethra (rather than the bladder) which caused tearing and bleeding of the urethra and possible irritation to the prostate.
- Drawbacks of the ER as the primary resource for post-surgical care. Care is not scheduled for the patient’s needs, but rather based on a triage system. In my case I had to wait sometimes two hours or more until a catheter could be inserted. The wait kept increasing the urine volume which expanded and irritated the bladder further.
- A medical system that does not track treatment outcomes. Without good follow-up and long-term data, no one is accountable or responsible.
- A reimbursement system that rewards lower up-front costs. The system favors quick outpatient surgeries without factoring in the long-term costs and harm of the type I experienced.
Assuming the best and not planning for the worst.
Can I trust the health care provider’s statement that the procedure is low risk and that the recovery will go smoothly?
The typical outcome of a medical procedure or surgery may be significantly worse than generally reported by hospitals or medical staff. In many cases there is no systematic follow-up nor data on outcomes and complications, thus no one knows the actual risks.
In the United States medical error results in at least 98,000 unnecessary deaths each year and 1,000,000 excess injuries (Weingart et al, 2000; Khon et al, 2000). The Institute of Medicine reported in 2012 that one-third of hospitalized patients are harmed during their stay (Ferguson, 2012; Institute of Medicine, 2012).
One should also be intelligently skeptical about positive claims for any specific study—it is important to know whether the study has been replicated with other populations and not just a particular group of patients.
To quote Dr. Marcia Angell (2009), the first woman editor of the highly respected New England Journal of Medicine, “It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.”
The evidence for many procedures and medications is surprisingly limited
- Research studies frequently select specific subsets of patients. They may exclude many patients who have other co-morbidities.
- Clinical trials may demonstrate statistical significance without providing clinically meaningful results. For example, between 2009 and 2013 all most all cancer drugs that were approved for treatment in Europe showed upon follow-up no clear evidence that they improved survival or quality of life for patients (Davis et al, 2017; Kim & Prasad, 2015).
- Pharmaceuticals are tested only against a passive placebo. In some cases, the patient’s positive response may actually be the placebo effect, due to physical sensations induced by the medication or its side effects, thus inspiring hope that the drug is working (Peper and Harvey, 2017).
- Negative side effects are significantly underreported. The data depend on self-report by both the patient and the health care provider.
Many published studies on the positive clinical outcome of pharmaceuticals are suspect. As Dr. Richard Horton (2015), Editor-in-Chief of The Lancet, wrote in 2015, “A lot of what is published is incorrect … much of the scientific literature, perhaps half, may simply be untrue. Afflicted by studies with small sample sizes, tiny effects, invalid exploratory analyses, and flagrant conflicts of interest, together with an obsession for pursuing fashionable trends of dubious importance, science has taken a turn towards darkness.”
Most studies, including those on surgery, lack long-term follow-up.
The apparent short-term benefits may be not beneficial in the long term or may even be harmful. For example, doctors and patients are convinced that SSRIs (serotonin re-uptake inhibitors—antidepressants such as Paxil and Prozac) are beneficial, with resulting global sales in 2011 of $11.9 billion. However, when all the research data were pooled, metanalysis showed that these drugs are no more effective than placebo for the treatment of mild to moderate depression and increase suicides significantly among young adults (Fournier et all, 2010; Kirsch, 2014).
Consider long-term follow-up in my case: the surgeon will report a successful surgery, despite the fact that it took me almost two years to recover fully. (I did not die during surgery and left in seemingly good shape.). Although I called him numerous times for medical guidance during my complications, the outpatient surgical facility will report no complications since I was not transferred from that facility during the surgery to a hospital for continuing care. My insurance carrier that paid the majority of the medical bills recorded the invoices as separate unrelated events: one surgery/one bill, but three separate bills for the emergency room, an additional visit to my primary care physician to check my abdomen when my surgeon did not return my call, and the ongoing invoices from the urologist. They all reported success because the iatrogenic events were not linked to the initial procedure in the data base.
In my case, following surgery, I had to go to the emergency room on three separate occasions due to post-operative urinary retention, placing me at risk of permanent detrusor muscle damage. For more than 18 months, I was under the care of a urologist.
Over the past two years, my symptoms have included gastrointestinal inflammation, spasms, and abdominal bulging, which are only now disappearing. Even my posture has changed. I am now working to reverse the automatic flexing at the hips and leaning forward which I covertly learned to reduce the abdominal discomfort. This level of discomfort and dysfunction are new to me. Reading the research on laparoscopy, I realized that excessive internal bruising, large hematomas, and internal adhesions are fairly common with this type of surgery. However, soft tissue injuries are difficult to confirm with imaging techniques.
My complications were also a direct result of inappropriate post-surgical recommendations and treatment. The symptoms were further compounded by faulty patient discharge procedures performed by the outpatient surgical facility. Since this was my first general anesthesia, I had no idea that I would be one of the people whose outcome were not what the surgeon had predicted. Thus, hope for the best, but plan for the worst.
SCHEDULING MEDICAL PROCEDURES
The following are recommendations may help reduce post-surgical or medical procedure complications.
- Schedule elective medical procedures or surgery early the morning and in the middle of the week. Do not schedule procedures on Mondays, Fridays, or in the afternoon. Procedures performed in the afternoon have significant increase in complications and errors. Anesthesia complications, for example, are four times higher in the afternoon than in the morning (Wright et al, 2006). Our biological rhythms affect our ability to attend and focus. In the morning most people are able to concentrate better than in the afternoon (Pink, 2018).
- Avoid weekends. Procedures performed on weekends (as compared to those done in the middle of the week) increase the risk of complications or dying. For example, babies born on the weekend have a 9.2% higher infant mortality than those born during the week, while those born on Tuesdays have the lowest death rate (Palmer et al, 2015). It is possible that on Mondays medical staff are recovering from weekend binging, while on Fridays they are tired and looking forward to the weekend? If elective procedures are done on a Friday and complications arise, the emergency room is the only option, as the medical staff may not be available over the weekend. In my case the procedure was done on a Friday, and I left the surgical outpatient facility at 2 pm. When complications occurred, it was after 5:30 pm—phone support from the advice nurse and the surgeon on call were my only option until the following Monday. Thus, I had to go the emergency room late Friday evening and again the next evening because of urinary retention, with a long delay in a busy waiting room. Since, I wasn’t bleeding or having a heart attack, that meant I had to wait, wait and wait, which significantly aggravated my specific problem.
- Schedule medical procedures at least one or two weeks before any holiday. Do not schedule surgery just before or during holidays. Medical staff also take holidays and may not available. In my case, I scheduled the procedure the Friday before Thanksgiving because I thought I would have a week of recovery during my Thanksgiving break from teaching. This meant that medical staff were less available and more involved in their holiday planning.
- Schedule procedures so that you are released early in the day. This can allow you to return to the facility in case complications arise. I was released at 2 pm and the complications did not occur until early evening. The facility was closed, so the only option was the ER. When possible, schedule medical procedures or surgery in a facility that is able to provide post-operative care after 5 pm.
- Do not schedule elective procedures during the month of July in an academic teaching hospital. During this month mortality increases and efficiency of care decreases because of the end of the academic year and subsequent changeover to new personnel (Young et al, 2011). Medical school graduates with limited clinical experience begin their residencies and experienced house staff are replaced with new trainees. This is known as the July effect in the U.S. and Killing season in the United Kingdom. During the month of July in any given year, fatal medication errors, for example, increase by 10% at teaching hospitals, but not at neighboring hospitals which do not experience this turnover in medical personnel (Phillips & Barker, 2010).
- Have procedures performed at a medical facility in which the health care professional has no financial interest—take economics out of the equation. When health care practitioners have financial interest in a facility, they tend to order more tests and procedures than health care providers who have no financial interests (Bishop et al, 2010). In my case the surgeon had a financial interest in the outpatient surgical facility where I received surgery. Had I had the operation across the street in the hospital where the surgeon also operates, I probably would not have been released early, avoiding the problems in follow-up care.
STRATEGIES TO OPTIMIZE OUTCOMES AND HEALTH
Organize your support system. Assume that recovery could be more difficult then promised.
Before your procedure, ask family members, friends, and neighbors to be prepared to help. If you did not need them, thank them for their willingness to help. In my case I did not plan for complications, thus my wife was my entire support system, especially for the first three weeks when I was unable to do anything except rest and cope. I was very fortunate to have numerous family, friends, and colleagues who offered their expertise to help me understand what was going on and who assumed my responsibilities when needed.
- Bring an advocate to your appointments. Have your advocate/friend keep notes and ask questions, especially if the health care provider is a respected authority and you are suffering, exhausted, and/or anxious. Record any detailed instructions you must follow at home as a video or audio file on your cell phone or write them down (be sure to ask the health provider for permission). Under stress one may not be able to fully process instructions from the health care provider.
- Make a list of questions and concerns before seeing your health care provider. Talk to your partner and close friends and ask them if there are questions or concerns that you should raise with your provider.
- Ask for more information when tests or procedures are proposed (Robin, 1984).
- Why do you recommend this particular test/procedure/intervention for me and what are the major benefits?
- What are the risks and how often do they occur, in your experience and in the research literature?
- What will you do if the treatment is not successful?
- Ask your provider if there is anything that you should or should not do to promote healing. As much as possible, ask for advice on specific efforts you can make. General statements without instructions such as, “Relax” or “Don’t worry,” are not helpful unless the practitioner teaches you specific skills to relax or to interrupt worrisome thoughts. Many health professionals do not have the time to teach you these types of skills. In many cases the provider may not be able to recommend documented peer-reviewed self-care strategies. Often they imply—and they can be correct—that the specific medical treatment is the only thing that will make you better. In my case I did not find any alternative procedures that would reverse a hernia, although there may be habitual postural and movement patterns that could possibly prevent the occurrence of a hernia (Bowman, 2016). Being totally dependent upon the medical procedure may leave you feeling powerless, helpless, and prone to worry. In most cases there are things you can do to optimize self- healing.
- Think outside the box. Explore other forms of self-care that could enhance your healing. Initiate self-care action instead of waiting passively. By taking the initiative, you gain a sense of control, which tends to enhance your immune system and healing potential. Do anything that may be helpful, as long as it is not harmful. In my case, future medical options to resolve urinary retention could include additional medications or even surgery. Researching the medical literature, there were a number of studies showing that certain herbs in traditional Chinese medicine and Ayurveda medicine could help to reduce prostate inflammation and possibly promote healing. Thus, I began taking three different herbal substances for which there was documented scientific literature. I also was prescribed herbal tea to sooth the bladder. Additionally, I reduced my sugar and caffeine intake to lower the risk of bladder irritation and infection.
- Collaborate with your health care provider. Let your provider know the other approaches you are using. Report any interventions such as vitamins, herbs, Chinese medicine. Ask if they know of any harm that could occur. In most cases there is no harm. The health care professional may just think it is a waste of time and money. However, if you find it helpful, if it gives you control, if it makes you less anxious, and if it is not harmful, it may be beneficial. What do you have to lose?
- Assume that all the health care professionals are committed to improving your health to the best of their ability. Yet at times professionals are now so specialized that they focus only on their own discipline and not the whole person. In their quest to treat the specific problem, they may lose sight of other important aspects of care. Thus, hope for the best, but plan for the worst.
PREPARING FOR SURGERY
Assume that the clinical staff will predict a more positive outcome than that reported in the medical literature. In most cases, especially in the United States, there is no systematic follow-up data since many post-surgical complications are resolved at another location. In addition, many studies are funded by medical companies which have a vested interest and report only the positive outcomes. The companies tend not to investigate for negative side-affects, especially if the iatrogenic effects occur weeks, months, or years after the procedure. This has also been observed in the pharmaceutical companies sponsoring studies for new medications.
Generally, when independent researchers investigated medical procedures they found the complication rate three-fold higher than the medical staff reported. For example, for endoscopic procedures such colonoscopies, doctors reported only 31 complications from 6,383 outpatient upper endoscopies and 11,632 outpatient colonoscopies. The actual rate was 134 trips to the emergency room and 76 hospitalizations. This discrepancy occurred because the only incidents reported involved patients who went back to their own doctors. It did not capture those patients who sought help at other locations or hospitals (Leffler et al, 2010).
The data are even worse for patients who are hospitalized; in the U.S. 20% of patients who leave the hospital return within a month while in England, 7% of those leaving the hospital return within a month (Krumholz, 2013).
- Ask about possible complications that could arise, the symptoms, and what the physician would do if they occurred. Do not assume the health professional will have the time to explain or know all the possible complications. In my case when the surgeon removed the catheter at 4 pm during my second emergency room visit, I had to ask, “What would happen if I still cannot urinate?” Again, the emergency room was the only answer. However, I know now that he could have taught me simple self-catherization which would have eliminated the long waiting in the emergency room, the excessive stretching of the bladder and the subsequent emergency room medical error on my third visit to the ER. It would also have reduced the medical costs by a thousand-fold.
- Get a second opinion. In my case, the surgeon came highly recommended, is very experienced, and has done many hernia repairs. I trusted his judgement that I needed a bilateral hernia repair although I only felt the bulging in the right inguinal area and did not feel bulging or sensations in the left inguinal area. Despite my feeling of trust, I should have asked for a second independent opinion just to be sure. In many moments of despair when suffering the significant complications, I even started to wonder if the bilateral laparoscopic surgical repair was really necessary or just done to increase the income of the surgeon and the outpatient surgical facility in which he had a financial interest. My surgery resulted in large hematomas, irritation of internal organs, and possible damage to the GI track. This type of complication did not occur for a close friend who had a single-sided hernia repair by the same surgeon in a hospital where the surgeon had no financial interests.
- Request medical personnel who are highly experienced in the intervention. Mortality and complications rates are significantly lower for practitioners who have done the procedure at least 250 times.
- Don’t assume the worst but be prepared for the worst. Ask your health care provider about the various side effects of surgery, including the worst things that could happen, and then develop a pre-emptive plan.
The most common problems associated with surgery and general anesthesia include:
- Urinary retention. Following general anesthesia, neural enervation to the bladder and gastrointestinal tract are often affected. The general risk for postoperative urinary retention (POUR) for all types of surgeries ranges from 7% to 52% (Tammela et al, 1986; Petros et al, 1990; Petros et al, 1991; Gonullu et al, 1993; Tammela, 1995). For patients who have surgery for hernia repair 24.4% will experience postoperative urinary retention (Keita et al, 2005)—one in four. The risk for older males is even higher (Blair et al, 2017). Do not leave the medical unit until you have urinated or have a Foley catheter inserted with a leg bag and appropriate follow-up managed by a urologist. In my case, neither the surgeon nor the outpatient hospital checked to determine whether I could urinate—they just discharged me the moment I was conscious. Discharging a patient who has had general anesthesia without checking to determine whether they can urinate goes against all medical guidelines and standard hospital policies and constitutes malpractice. As this was my first surgery, I had no idea that urinary retention could occur. Thus, I did not recognize the symptoms nor did the advice nurse or the surgeon when called for advice before I checked into the emergency room.
- Expect constipation and plan to eat a high roughage diet that supports bowel movements. In case bowel function is slow in resuming, you may want to have on hand simple over-the-counter supplements such as magnesium capsules, psyllium husks, and aloe vera juice or gel, all available at any health food store. Liquid magnesium citrate (GoLytely® solution available at drug stores), can be useful, but tends to be a little stressful to take. Check these over-the-counter supplements with your provider to avoid supplement-drug interaction.
- Infection. Many patients pickup hospital-induced infections (nosocomial infections). In my case, I after four weeks with a Foley catheter, I got a mild bladder infection and had to control it with antibiotics. While in the hospital, avoid direct physical contact with other patients and staff, wash and rewash your hands. Remember medical staff tend are less attentive and wash their hands 10% less in the afternoons than in morning. Ask the medical staff to thoroughly wash their hands before they examine you. If you do get an infection, contact your medical provider immediately.
- Pace yourself. Assume that recovery could be slower than promised. Although your body may appear to be healed, in many cases your vitality could be significantly reduced for a number of months, and you will probably feel much more fatigued in the evening. The recovery from general anesthesia has been compared to recovery from a head-on car collision.
- Identify your support system in case you cannot take care of yourself initially. Organize family and friends to help you. In my case, for the first two weeks I did not have the energy to do anything for myself—the overwhelming abdominal spasms and the three episodes in the ER had drained my energy. I was very lucky that I had my family and friends to help me. For the first few weeks I was so distracted by the pain and discomfort that I did not drive or take care of myself.
- Have a plan in case you need to go to the Emergency Room in the evening. Know its location and have someone who can take you.
- Assume that you will probably have an extensive wait in the ER unless you are desperately ill. Do not try to “tough it out.” Be totally honest about your level of pain, so you can get the best possible care. In my case, I had horrible abdominal pain and spasms with urinary retention, but still acted as if I were okay. When the admitting nurse asked me how I felt, I rated my discomfort as a 5 on a scale from 0 to 10. In my mind I compared the pain with that I had experienced after a skiing accident, which was much worse. What I had forgotten was that the ER is triage system, so I had to wait and wait and wait, which was phenomenally uncomfortable.
- In the ER, ask which medical specialist can follow up with you if further issues develop. A general hospital usually has specialists on call. In my case, if I had requested care from a specialist, I would have been treated directly by a urologist. I would not have had to follow the advice of the surgeon who said, “When you go to Emergency Room, have them empty the bladder and then go home.” Almost all urologists would have recommended keeping the Foley catheter in for a few days to allow the side effects of the anesthesia and the trauma caused by the bladder expansion to ameliorate and then test whether urination was possible.
- Have a medical advocate with you at all times who can observe that the procedures are done correctly. There is a four-fold increase in errors during the evenings and nights as compared to the morning. The more medical staff is multi-tasking, the more likely they will make errors. Have the medical personnel explain any procedure before they perform it—why and how they will do the procedure and what you will experience. You also need to know if they are experienced in that particular procedure? If the answers do not make sense, stop them and ask for another staff member.
- In the ER, record the instructions on your phone. Have medical staff explain and demonstrate to you and your support person what you will need to do at home. Then repeat the instructions back to them to be certain you have it right.
- Remind yourself that errors can occur. In my case, during the third ER visit for urinary retention, the nurse delayed the anchoring of the catheter and it had slipped down into the urethra. As she began to pump, I could feel my urethra tearing and I alerted her to stop. This was immediately followed by another procedural error on her part, so I had to again alert her to stop, which she finally did. All this occurred at 1 am in the morning. As the patient, I had to take charge at a time when I was totally exhausted. As the nurse retreated, I was left sitting on the gurney waiting for someone to come and follow-up. I waited and waited and when I finally stood up, the catheter dropped out and I began bleeding.
Lesson learned: hope for the best but prepare for the worst. In my situation, after eight weeks and numerous visits to the urologist, he removed the catheter. He did this at 8:30 in the morning. This way I could go home and in case something happened, I could go back to his office for further care. Before leaving the office, I planned for the worst. I asked what would happen if I could not urinate later in the evening and requested that he give me a few catheters, so if problems developed, I could catheterize myself.
The urologist gave me the catheters and explained how to use them, although I did not actually practice on myself. Still, I felt better prepared. During the day, I become more and more optimistic because I had no problems; however, at 2 am I woke up unable to urinate. For the next hour, I felt very anxious about inserting the catheter, since I had never done it myself. Finally, my discomfort overcame my anxiety. To my surprise, it was easy. After waiting a few minutes, I removed the catheter and went to bed feeling much more comfortable. The next morning after breakfast and a cup of coffee, I found that my body was working fine without the catheter.
Had I not planned for the worst, I would have once again gone to the Emergency Room and probably waited for hours, risking a repeat of tremendous discomfort and irritation. This simple planning reduced my medical cost more than a thousand-fold from $1700 for the emergency room to $2 for some single-use catheters.
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 I think my family, friends and colleagues (Karen Peper, Norihiro Muramatsu, Richard Harvey, David Wise, Annette Booiman, Lance Nagel and many others) who generously supported me during this journey.