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Zuckweiler’s Image Imprinting in the Treatment of Phantom Pain: Case Reports

Zuckweiler, Rebecca L. MS, RN, CNS, BC

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JPO Journal of Prosthetics and Orthotics: October 2005 - Volume 17 - Issue 4 - p 113-118
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The three cases reported here were selected from a population of 14 amputee patients who participated in a study that tested the effectiveness of treating phantom pain and phantom sensation using the Zuckweiler’s Image Imprinting (ZIPS) intervention. No subject received prior or concurrent treatment for phantom pain and phantom sensation. As cited in Living in a Postmastectomy Body: Learning to Love and Live in Your Body Again,1 ZIPS has proven effective in treating breast phantom pain and phantom sensation with patients who have undergone mastectomy. This study attempted to extend the use of the ZIPS intervention to amputee patients.

ZIPS is a therapeutic process that leads the patient through several mental imagery steps during which the individual creates an accurate body image, thereby allowing the mind and body sensory messaging system to return to normal functioning. The intervention steps for the therapist are as follows:

1. Recognize phantom pain/sensation.

Help patient recognize phantom pain and phantom sensation by having the individual describe, in as much detail as possible, everything he/she knows about his/her phantom pain or phantom sensation. After the patient has given his/her description, questions should be asked such as: Do you experience phantom pain/sensation more at night or during the day; With or without activity; With or without wearing your prosthesis; and Under certain weather conditions? The patient should be asked how often he/she is experiencing his/her phantom pain and phantom sensation by picking a category that best describes the frequency of each phenomenon. The categories should be: always, many times a day, daily, many times a week, weekly, monthly or less, or never. The patient also should be asked to rate how distressed he/she feels regarding his/her phantom pain and phantom sensation on a scale of 1 to 10, in which 10 is most distressing and 1 is not distressed at all. These two ratings serve as a means to assess the effectiveness of treatment and readiness for termination.

2. Teach ZIPS.

a) Teach basic mental imagery skills. Have patient image a simple object such as an apple. Ask the individual to see himself/herself taking a bite out of the apple and be aware of how it looks, tastes, smells, feels, and sounds. b) Identify existing body image and the life force of phantom pain and phantom sensation. Instruct patient to close his/her eyes and describe the first picture of his/her body that comes to mind. Help patient define how he/she conceptualizes his/her life force (common methods of conceptualizing involve a form of energy, heat or a color). Guide patient in visualizing his/her current body with an applicable life force, including the area formerly occupied by the missing body part(s). c) Create accurate body image to redirect the life force. Instruct patient to create an accurate body image, such as a man who has had an amputation below the left knee visualizes his body missing his left leg below the knee. d) Identify what needs to change. Guide patient to compare his/her accurate body image with the image in which the life force extends below the residual limb to identify how his/her body image needs to change, so the life force is experienced only in the current body, such as the red energy is brought up into the existing tissue. e) Start and stop phantom pain and phantom sensation. Instruct patient to bring on phantom pain and phantom sensation by mentally focusing on them. Tell patient if he/she can create phantom pain and phantom sensation, then he/she can also get rid of them. Instruct patient to decrease or eliminate the phantom pain and phantom sensation by mentally drawing the life force that is associated with the phantom pain and phantom sensation, up through the limb and into the rest of his/her body, such as the patient sees the color red, a warm sensation, or a buzzy feeling moving up into the limb.

3. Practice ZIPS.

Have patient start and stop the phantom pain and phantom sensation several times. Send patient home with the following instructions: practice bringing on phantom pain and phantom sensation and then getting rid of them by drawing up the life force, each day, as often as he/she can remember to do so; create and hold an accurate body image for 15 to 60 seconds, each day, as often as he/she can remember to do so; and when he/she experiences phantom pain and phantom sensation, draw up the life force.

4. Identify mental blocks.

During subsequent treatment sessions, have patient identify mental blocks that are preventing him/her from being able to see the life force being absorbed into the existing tissue. Direct patient to continue to create new images that allow the elimination of the mentioned mental blocks. For example, if he/she has images of damaged or diseased tissue that was amputated, he/she may want to see the tissue healed before drawing up the energy. Suggestions of corrective images may be offered; however, the patient must feel complete ownership of the image used, instead of trying to make the therapist’s image work.

5. Terminate treatment sessions.

Using the category rating scale for frequency of phantom pain and phantom sensation and the 1 to 10 distress over phantom pain and phantom sensation rating scale used in step 1, assess the patient’s progress and confidence in his/her ability to reduce or eliminate phantom pain/sensation. Terminate treatment sessions when the patient feels confident he/she has permanently gotten rid of the phantom pain and phantom sensation or can quickly get rid the phantom pain and phantom sensation and is no longer distressed about them.

CASE REPORTS

CASE 1

A 79-year-old Caucasian woman with diabetes had two separate transtibial amputations, one occurring 2 years before ZIPS training and the second 1 year before ZIPS training. She had never worn prosthetic legs because she was already using a wheelchair after three hip surgeries. To help her recognize her phantom pain and phantom sensation, she was asked to describe them in as much detail as possible (step 1). She was experiencing phantom pain sometimes during the day, and it was waking her up and requiring that she use Tylenol twice every night. She was also experiencing phantom sensation on a daily basis, but the phantom pain occurred much more frequently. She described her phantom pain as feeling like her right toe was being pulled and her foot and ankle were being squeezed. Her phantom sensation felt like a twitching, similar to a facial tic that she felt mostly in her calves. She also described her knees being in a cramped, bent position that made her want to stretch her legs. On a 0-to-10 scale (0 = no distress, 10 = highest level of distress), she rated her level of being upset by her phantom pain at 8 and by her phantom sensation at 5.

She had no previous experience with mental imagery. She was asked to image an apple and then see herself biting into it (step 2a). When she was asked if she could feel, smell, taste and hear the crunch of it, she demonstrated that she could image quickly, using sight, taste, smell, and touch. She was instructed to close her eyes and see the first picture of her body that came to mind; she described her body without legs (step 2b). She was asked to describe her life force, which she conceptualized as energy. She was told to see her existing body filled with energy, plus see the energy extending into the space below her residual limbs. She was told to create an accurate body image (step 2c). She was asked to compare her accurate body image with the one that had the energy below the limbs and explain how her picture needed to change so the energy no longer extended below her residual limbs (step 2d). She could reason that the energy needed to exist only in her current body. She was told to bring on her phantom pain and phantom sensation (step 2e). After she reported feeling the phantom pain and phantom sensation, she was told that if she can create the phantom pain and phantom sensation, she can also stop it. She was instructed to bring on phantom pain and phantom sensation and then stop it by pulling the energy up through her limbs and into the rest of her body. She was able to bring the energy up from her feet to her limbs, but could not get the energy to go into the rest of her body. She was told to practice several times, starting the phantom pain and phantom sensation and pulling up the energy as far as she could (step 3). Because time allowed, she was then asked what was preventing the energy from going beyond the residual limbs (step 4). She saw a string tied tightly around her big toe. This picture represented the cramped muscle pain she felt in her toes. She was told to create an image that would allow the energy to enter her body. She untied the string and stretched out her legs, which allowed her to experience a tremendous amount of relief. She opened a trap door at the end of her right leg and was able to pull up the energy. She was sent home with the instructions to: 1) practice bringing on phantom pain and phantom sensation and then getting rid of them by drawing up the energy, each day, as often as she could remember to do so; 2) create and hold an accurate body image for 15 to 60 seconds, each day, as often as she could remember to do so; and 3) when she experienced phantom pain and phantom sensation, draw up the energy, life force.

Her second session was a week later, and she reported that she had practiced the images five to six times a day. During that week, she felt a prickly feeling in the left calf, and she had experienced only one phantom pain “attack” during one night. She imaged pulling up the energy during that phantom pain “attack,” and after four attempts she was able to get rid of the pain. Since her first session, she no longer needed to use Tylenol during the night. She had been free of phantom pain from Tuesday until the next Monday, but on Monday she had a new, sharp, jerking, shooting pain in her heel. She worked on the phantom pain, off and on all day, and was able to get rid of it by bedtime. The phantom pain was no longer there the next morning, which was the day of her third session. Throughout the last week, she had become aware of phantom sensation that felt like one leg was crossing over the other. She was going to target the phantom sensation during the next week. She went home with the same three instructions.

At her fourth session, she was still reporting no phantom pain. She had been working on the phantom sensation, which she now described as her legs swinging back and forth under her chair. She found it to be a pleasant, comfortable, relaxing, curious sensation. She experienced it as a type of magic she could perform that was creative and self-entertaining. She was able to reason that she could not afford to keep this form of comfort and entertainment because it operated off an old mind/body connection that left her open to the return of the phantom pain. She was going to explore other behaviors that she could use to calm and entertain her, that would replace the sensation of the swinging legs. She was also instructed to start using quick imaging of bringing up the energy, so the repeated practice was more efficient and less demanding of her time. During that session, she started to identify images she could use to get rid of the sensation. She was going to experiment with suggested images of a switch to turn it off or a vacuum to pull up the energy.

She also realized that doing this could trigger some grieving as she let go of the last connection she had to her legs. At her fifth session, she still had none of the original phantom pain but could not get rid of the swinging legs. She was also having a new form of phantom pain caused from severe bladder pain that resulted in radiating pain down her leg and into a phantom leg. She was scheduled for bladder surgery in 3 weeks. She was going to work on getting rid of the bladder-related phantom pain and the swinging legs. At her sixth session there was no change. She decided to try seeing the energy falling away, instead of pulling it up. At her seventh session, she was very frustrated because she still had tremendous bladder-related phantom pain and swinging legs. During the eighth session, she saw her legs as wooden sticks with feet on them, and she imaged termites eating the stick legs from the top down. With the termite image she was able to get rid of a few inches of the phantom leg. At home she was going to complete the image in stages. She had had temporary bladder surgery, which left her with the same amount of pain.

Three weeks later, her ninth session was conducted via telephone. She was emotionally and physically very weak, so she was told to not practice imaging until she was stronger. By her tenth session, she had undergone her bladder surgery, and the pain was gone. She was left with only the phantom sensation of swinging legs. The swinging legs now looked like mechanical, prosthetic legs similar to the ones her amputee friends had. These legs she could take off, which eliminated the phantom sensation. Four times in the session, she was able to see herself taking the legs off and setting them aside. At her eleventh session, she said for the first 2 days after her last session she had practiced setting her legs aside every time she felt them; she got busy and forgot to practice. She was feeling the swinging legs about three to four times per week. She was instructed do the imaging quickly and with her eyes open, so she could do it quickly while she was doing her usual daily activities. In session, she was able to start the phantom sensation and stop it, four times in 55 seconds, with her eyes open, by setting the legs aside.

At her twelfth session, she reported that she had practiced taking off her legs about three times each day. During the session, she now saw the phantom legs as an old pair of useless garden boots that she left to drip by the back door of her house. At home, she continued to try to pull up the energy when she felt the phantom sensation. Two weeks later at her thirteenth session, she said her imaging was going well, but the phantom sensation was still coming back. She decided to take it one step further and see herself taking the boots out to the garbage, where the garbage man would pick them up. Two weeks later at her fourteenth session, she said she had been very motivated to practice and only had a slight sense of having legs three or four times each week, but no sensations of swinging legs. She could not image the garbage man taking them away, but the boots felt like they were gone once she put them out at the curb. She had noticed that she was frequently aware that she does not have legs. She wanted to work on reinforcing the awareness of not having legs while doing her daily activities.

Her fifteenth session was done 3 weeks later, at which time she reported no phantom pain or phantom sensation. All phantom sensation had been gone for 2 weeks, and phantom pain had been gone for several months. It was mutually decided to terminate the intervention (step 5). She had 15 sessions during a 20-week period. Her level of being upset about phantom pain had gone from 8 to 0 and phantom sensation from 5 to a 0. She was sleeping through the night and not requiring Tylenol. After 3 and 6 months post-treatment, she was still free of phantom pain and phantom sensation.

CASE 2

A 37-year-old Caucasian woman underwent transtibial amputation of her right leg because of complications of childhood-onset diabetes 3 years before ZIPS training. As with the subject in case 1, she was asked to describe her phantom pain and phantom sensation in as much detail as possible, which she depicted as a constant feeling that she had her complete leg. She was taught to use the phantom foot to balance when she walked with her prosthetic leg. She was experiencing phantom pain many times a day, which was set off whenever her residual limb was bumped. She described her phantom pain as the same throbbing, stabbing pain that she felt when she wore a leg brace for 5 years before her amputation. She had phantom pain more at night. On a 0-to-10 scale, she rated her level of being upset about her phantom sensation at a 0 and phantom pain at a 10.

She had no previous experience with mental imagery, but was able to image quickly and use all five senses with her eyes opened or closed. She described her first body image as having both legs. She also reported that she dreamed of herself with both legs. She described her life force as the color red. She was instructed to visualize her current body with the red extending below her residual limb all the way down to her phantom foot. After creating an accurate body image and comparing it with her initial body image, she could reason that her body image would have to change to one without her lower leg and that phantom pain and phantom sensation really did not provide balance, so she could get rid of them. She as able to bring on phantom pain and phantom sensation, which was used to reinforce the idea that she was capable of altering her phantom pain and phantom sensation.

She was told to imagine drawing the red up through her limb and into the rest of her body. She practiced starting and stopping the phantom pain and phantom sensation in session and then was sent home with instructions to practice ZIPS.

During her second session a week later, she reported that she practiced imaging an accurate body image between 2 and 10 times a day and drawing up the red whenever she felt phantom pain, which had resulted in a significant decrease in the frequency of her phantom pain and phantom sensation. She was experiencing phantom pain many times a day, so she did not need to start and stop phantom pain and phantom sensation. She was asked to identify the block that was preventing her from absorbing all the red into her existing body. She said she associated the phantom pain with the very painful experience of wearing a leg brace for 5 years before her amputation. She decided she would get rid of the phantom pain and phantom sensation by throwing away her brace. She imaged taking off the brace and throwing it off a cliff. She also imaged taking off and putting on her prosthetic leg to reinforce the image of the empty space below her residual limb that existed when she was not wearing her prosthetic leg. A month later at her next appointment, she reported no phantom sensation and had only two episodes of phantom pain since her last session. She had been able to shortcut the process by simply telling herself that the lower leg no longer existed to make the phantom pain go away, which she could now accomplish in a few seconds. A month later, she reported no phantom pain or phantom sensation until she fell. She had a long history of frequent falls dating to childhood, with a strong mind/body memory of pain associated with the falls that obviously was stronger than her newly imprinted mind/body connection. It was suggested she work on imaging herself falling, feeling the phantom pain, and correcting it by pulling up the red during the fall. She worked the new image several times in session until she could see herself falling without experiencing phantom pain. At home, she practiced seeing herself falling without the pain by keeping her life force (red) contained in her existing body. Two weeks later she had no phantom pain or phantom sensation. Three weeks later she reported having a very bad day of phantom pain that she was unable to image away. When she got home and removed her prosthetic leg, to her surprise and relief, she realized she had not had phantom pain; rather, it was acute pain from a fresh cut behind her knee that resulted from the rubbing of her prosthetic leg.

After 3 more weeks of no phantom pain or phantom sensation, she terminated treatment. She had a total of eight sessions during a period of 17 weeks. After 3 and 6 months post-termination, she was still free of phantom pain and phantom sensation. Her level of being upset about phantom pain had gone from 10 to 0 and phantom sensation had remained at 0.

CASE 3

A 79-year-old Caucasian man underwent transtibial amputation of his left leg after a farming accident 61 years before ZIPS training. He was very hard of hearing. He reported experiencing phantom pain several times a day and phantom sensation about 75% of his waking hours. He experienced phantom pain and phantom sensation only a couple of times a year until 5 years ago, which is when he retired from farming and janitorial work. He was experiencing a great deal of residual limb pain from scar tissue that he was able to distinguish from the phantom pain. He described his phantom sensation as if he had toes on the end of his residual limb. Wearing his prosthetic leg did not affect his phantom pain or phantom sensation. He described his phantom pain to be burning, sharp, and shooting pains, and they were waking him up after about 3 hours of sleep. The phantom pain lasted between 1 second to 2 minutes. Walking and standing were the only things that helped alleviate his phantom pain and phantom sensation. He rated his level of being upset by his phantom sensation and phantom pain at 5.

He had a very difficult time imaging. He was able to see an apple and hear the crunch as he bit into it but was unable to use the other senses. The first picture of his body that came into his mind was an accurate image with a missing lower left leg. He conceptualized his life force as energy. He was instructed to image his existing body filled with energy along with the energy extending into the missing space below the leg, which he was able to do. By comparing a body image with extended energy to his accurate body image, he was able to reason that the energy would need to stop at the end of his residual limb. He was able to start the phantom pain and phantom sensation. When he imaged drawing the energy up into his limb, he reported that the phantom sensation was less intense. He practiced starting and stopping the phantom pain and phantom sensation several times and then was sent home with instructions to practice the three steps of ZIPS. Because of his age and hearing loss, he was asked to repeat the instructions, and they were given to his wife and son, who had accompanied him, in written form. A week later during his second session, he reported that he practiced pulling up the energy whenever he felt the phantom pain and phantom sensation and also a couple more times every day. He had also been picturing himself with an accurate body image. He reported that his phantom pain and phantom sensation were occurring less frequently, and the intensity of his phantom pain had lessened and was no longer occurring at night, which was allowing him to sleep through the night. He asked if we could also try treating his residual limb pain the same way. Although treating limb pain was not intended to be a part of the study, working on it was agreed upon.

He seemed to relate to his limb pain as part of his phantom pain and phantom sensation, so his desire to work on the limb pain was interpreted as his block to being able to get rid of the phantom pain and phantom sensation. He described his residual limb pain as an electrical nerve that went from his knee to the end of the limb. He decided he would stop the pain by stopping the flow of electricity, which he did by imaging a switch being turned off, and then he saw the nerve curl up. Shutting off the current resulted in decreased limb pain and less phantom pain and phantom sensation. At the end of his session and at home he practiced pulling up the energy and turning off the current to the limb. Because of the history of his phantom pain and phantom sensation occurring when he was doing less walking, he was shown how to stretch his hips and told to do daily walking. A week later, during his third session, he reported that he had been pulling up the energy and he was completely free of phantom pain and phantom sensation and was still sleeping well. He continued to be bothered by limb pain, so he was encouraged to try Aleve and a cold cloth to relieve the burning. He also tried shaking his limb to redirect the blood flow and decrease the muscle cramping. At his fourth session, he still had no phantom pain or phantom sensation. His limb pain persisted, and it was now hindering his sleep, so it was recommended that he ask his neurologist to prescribe amitriptyline 10 mg to treat his chronic pain and sleep disturbance. He terminated treatment after five sessions because he remained free of phantom pain and phantom sensation. He began taking amitriptyline 10 mg and was now sleeping through the night. Walking was the only thing that positively affected his daytime limb pain. After 3 and 6 months post-treatment, he continued to be free of phantom pain and phantom sensation. His level of being upset over phantom pain and phantom sensation had gone from 5 to 0.

DISCUSSION

The 14 subjects of this study were all told by medical professionals that there was no treatment for phantom pain; it would either go away with time or after he/she reached a psychological state of acceptance of his/her loss. There have been many attempts at trying to explain phantom pain and phantom sensation but little success with treating it, so subjects came with many different ideas about how it worked and what purpose it served. Many had been told that their phantom pain was an inevitable result of residual limb pain or nerve activity. Some were told to use their phantom sensation to provide balance that could protect them from falls. Some were led to believe that they would not be able to walk well with their prosthetic leg if they could not use the phantom sensation to feel the foot.

The cases presented here clearly show that phantom pain and phantom sensation are treatable and the success of treatment is not influenced by the passage of time between when phantom pain and phantom sensation are first experienced and when they are treated, or by the person’s ability to resolve grief. Advancing age, hearing loss, lack of experience with mental imagery, or limited imaging ability were also not hindrances to eliminating phantom pain. None of the subjects started out as “believers” that they could accomplish getting rid of their phantom pain or phantom sensation. They were told right from the beginning that believing in the process was not necessary. They could think the researcher was “off her rocker” as long as they were willing to give it a try by attending the sessions and practicing the mental imagery between sessions. On the other hand, the researcher operated on the assumption that she needed to convey a very strong, matter-of-fact attitude that the process would work. They did not have to believe in it–the researcher did. She had used the process to eliminate her own breast phantom pain and phantom sensation many years ago.

The researcher went into the study with a very open mind about what might work for each individual and allowed the subjects to create and direct their own treatment. This prevented her from imposing her limited concepts and personal experience onto them. It also gave them a greater sense of control over their outcome. She tried to provide a creative, playful, fun environment that was nonthreatening and that guarded against performance anxiety. She was mindful along the way to not interpret their temporary discouragement and lack of progress as a sign that they had reached maximum benefit. Grieving was considered one of many possible reactions to the process of treatment, instead of the cause of the phantom pain or sensation. Case 1 was the most complicated case and was the final subject in the study. The researcher was more relaxed, trusting of the process and creative as she worked with this patient. She suggested several tips from other patients that proved to be helpful to this woman. If Case 1 had been one of the earlier subjects, the researcher may have terminated her treatment prematurely.

These three cases were consistent with the other study subjects in that phantom pain responded more quickly and more easily to ZIPS than did phantom sensation. More creative imaging and practice were required to eliminate phantom sensation. It may be true that, whenever possible, ZIPS should be started before the amputation to begin changing the mind/body sensory connection, so there is less phantom pain and phantom sensation to treat. This theory was tried with a man within the first 24 hours of losing part of his finger. He was taught ZIPS before he experienced phantom pain and phantom sensation and was able to get rid of his phantom pain and phantom sensation within 3 days of when he first experienced phantom pain and phantom sensation. He used ZIPS again just before he had more of his finger removed and had no phantom pain or phantom sensation after that surgery. Patients who completed the training program but were distracted from regular practice between sessions because of very demanding lives, experienced less of a reduction in their phantom pain and phantom sensation. Good candidates are those who are highly motivated to be rid of their phantom pain and phantom sensation and are willing and able to give time to doing the mental imagery practice outside of their sessions.

FUTURE APPLICATION

These cases are offered as a starting point to understanding how to successfully treat phantom pain and phantom sensation. The biggest obstacle to be anticipated will be to change the way the medical profession thinks about phantom pain and phantom sensation, so appropriate referrals can be made. We need to stop thinking phantom pain cannot be treated and that phantom sensation is not disturbing to the patient. Many prosthetists strongly believe phantom sensation is a positive phenomenon that is necessary for proper prosthetic usage. The subjects could recognize the illusion that the phantom helped them and easily shifted to using their prosthetic devices without the phantom sensation. One man who had learned to operate his mechanical hand with phantom sensation shifted to a reality-based image of how his forearm muscles triggered the hand to open and close. This allowed him to use his prosthetic hand and be free of phantom pain and phantom sensation.

CONCLUSION

ZIPS is a nonintrusive, inexpensive, patient-empowering, effective treatment for phantom pain and phantom sensation. This intervention can be taught to patients using easy mental imagery techniques and simple logic. Clinicians can use ZIPS to teach amputees how to reduce and eventually eliminate their phantom pain and phantom sensation.

ACKNOWLEDGMENTS:

Greg Gruman, CP, President of Winkley Orthotics & Prosthetics, compassionately understood the importance of this research to his patients, generously funded the project, trusted the researcher with his patients, and allowed the use of his facility. Two other Winkley staff members, Jill Marshall, CP, and Al Ingersoll, CP, identified subjects and provided many hours of case consultation. Merrie J. Kaas, DNSc, RN, CS, University of Minnesota, Graduate School of Nursing, Associate Professor, spent endless hours guiding the author through the process of turning the data into an article worth publishing. The author thanks the subjects for their participation and permission to anonymously share their stories.

REFERENCE

1. Zuckweiler RL. Living in the Postmastectomy Body: Learning to Live in and Love Your Body Again. Point Roberts, WA: Hartley & Marks; 1998.
Keywords:

body image; mental imagery; phantom limb pain; phantom sensation

© 2005 American Academy of Orthotists & Prosthetists