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“Like a Normal Person Again”: A Qualitative Analysis of the Impact of Headache Surgery

Afifi, Ahmed M. M.D.; Schwarze, Margaret L. M.D., M.P.P.; Stilp, Emmaline K. M.S.; Orne, Jason Ph.D.; Smith, Jeremy P. M.D.; Abd-Elsayed, Alaa A. M.D.; Anderson, Brooke M. M.S.N.; Salem, Ahmed M.D.; Macdonald, Cameron L. Ph.D.; Israel, Jacqueline S. M.D.

Plastic and Reconstructive Surgery: October 2019 - Volume 144 - Issue 4 - p 956-964
doi: 10.1097/PRS.0000000000006071
Reconstructive: Head and Neck: Original Articles
Psychosocial Insights
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Background: Outcomes after migraine surgery have been previously assessed using quantitative measurements, including the migraine headache index. Qualitative methodologies offer the ability to analyze patients’ perceptions and pain experience, and may point to changes in domains not captured by quantitative instruments. The purpose of this study was to characterize individual patients’ experiences with migraines and to analyze how patients’ experience of headaches changes in relation to surgery.

Methods: Patients who previously underwent migraine surgery performed by a single surgeon participated in semistructured interviews at least 1 year after surgery. Purposive sampling was used to recruit patients [n = 15 (73 percent female)]. Interviews were transcribed verbatim. A multidisciplinary team with backgrounds in surgery, pain management, medicine, and health services research coded and analyzed transcripts.

Results: Participants reported improvements in one or more domains of pain following surgery, and changes in medication use and effectiveness. Even in individuals with persistent pain postoperatively, surgery appeared to facilitate an improvement in headache self-efficacy, including an ability to participate in daily activities. Migraineurs frequently described a new degree of control over at least one aspect of their pain.

Conclusions: Migraine surgery appears to positively impact patients’ lives in ways that support and expand on previously published outcomes. Patients report benefiting from surgery in ways that are not currently captured in commonly used metrics. This study’s findings support the need for more specific patient-reported outcome measures to help clinicians and patients understand the impact of surgery and which outcomes matter most to patients.

Madison, Wis.; Cairo, Egypt; and Philadelphia, Pa.

From the Division of Plastic Surgery, Department of Surgery, University of Wisconsin School of Medicine and Public Health; the Departments of Surgery, Medicine, and Anesthesiology, University of Wisconsin School of Medicine and Public Health; the Division of Plastic Surgery, Cairo University; Qualitative Health Research Consultants; the Department of Sociology, Drexel University; and Edgewood College of Nursing.

Psychosocial Insights for this Article are on Page 963.

Electronic poster presentation at the 2017 American Society for Peripheral Nerve Annual Meeting, in Waikoloa, Hawaii, January 13 through 15, 2017; and presented in part at the 63rd Annual Meeting of the Plastic Surgery Research Council, in Birmingham, Alabama, May 17 through 20, 2018.

Disclosure:The authors have no financial interest to declare in relation to the content of this article.

A “Hot Topic Video” by Editor-in-Chief Rod J. Rohrich, M.D., accompanies this article. Go to and click on “Plastic Surgery Hot Topics” in the “Digital Media” tab to watch.

Ahmed M. Afifi, M.D., Division of Plastic Surgery, University of Wisconsin School of Medicine and Public Health, G5/361 Clinical Sciences Center, 600 Highland Avenue, Madison, Wis. 53792,, Twitter: @ahmed_afifi2018

Prospective and retrospective studies have demonstrated the safety and efficacy of the surgical treatment of headache by means of deactivation of trigger sites, commonly referred to as migraine surgery.1–8 These studies have used outcome measures that are quantifiable, accepted, and accurate, including the migraine headache index (migraine headache index = frequency × intensity × duration) and validated migraine questionnaires.2,9–11 Other questionnaires have been used as well, and a recent study using the Pain Self-Efficacy Questionnaire found that patients undergoing migraine surgery demonstrated improved postoperative Pain Self-Efficacy Questionnaire scores, suggesting improvement in coping with pain.12 Although quantitative measurements are important and reproducible, they may not capture the entire patient experience, including an individual’s reasoning to consider surgery, the spectrum of changes produced by surgery, and decision regret. A qualitative study of outcomes after headache surgery may help to assess how patients perceive the effects of surgery, how changes in the parameters of migraine headache index translate into quality of life, and whether there are effects or complications of the surgery that are not captured by current questionnaires.13

Qualitative methodology is not commonly used in plastic surgery. However, it can add significant value when assessing new procedures, such as headache surgery. It can answer questions such as, “What does a migraine headache index reduction of 50 percent actually mean to the patient?” and “Do patients experience changes in their headaches that are not currently captured by existing metrics” Although patients have continued to embrace and seek headache surgery,14 the medical community has been slower to accept it. Plastic surgeons have been observing changes in their patients’ lives that do not seem to be captured fully by quantitative measures. Perhaps allowing the patients’ voices to be heard and analyzed may shed light on how the surgery can affect their lives.15 We therefore used qualitative methodologies and a multidisciplinary team to (1) explore patient perceptions of migraines and the changes brought on by surgery, and (2) assess how these changes affected patients’ ability to function in daily life.

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Study Team and Design

The primary research team consisted of a plastic surgeon specializing in migraine surgery, a resident physician, and a team of qualitative research consultants. The study was designed using a theoretical framework and constructivist grounded theory methodology. Grounded theory methodology requires that concepts, or “codes,” be generated inductively from the patient’s responses to open-ended questions, and it is not bounded by a priori assumptions to guide data analysis.15

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Study Sample

Inclusion criteria necessitated that the patient was 18 years of age or older, had undergone surgery on at least two of three anatomical sites [occipital (greater and lesser occipital nerves), frontal (supraorbital and supratrochlear nerves), and temporal], was more than 1 year out from surgery, and was able to participate in an interview in English. Potential subjects were invited to participate by telephone or at a clinic visit. We used a purposive sampling approach so that participants with a range of experiences (e.g., those who viewed their surgery as successful and those who were less satisfied) were interviewed. To do so, we began by inviting all patients who met inclusion criteria. After completing interviews with 11 patients who met inclusion criteria, we found that all patients reported satisfaction with surgery. We then focused recruitment efforts on those who reported less satisfaction with the outcome of their surgery, to complete the sample. We conducted this strategic oversampling of unsatisfied patients to create a “maximum variation sample” to capture the broadest range of patient experiences.16 This purposeful sampling approach (intentionally seeking less satisfied patients) is considered a superior methodology to “convenience sampling” (having strict inclusion criteria). The constant comparative method was used during ongoing data analysis to assess the emergence of new themes from the data.17 Thematic saturation, or the point at which no new themes appeared in additional interviews, was reached after 15 interviews.18 No participants withdrew after initiating their interview. Demographic data are included in Table 1.

Table 1. - Participant Demographic Information
No. of participants 15
 Female 11
 Male 4
Age at interview, yr
 Mean ± SD 48 ± 13
 Range 28–72
Time between surgery and interview, mo
 Mean ± SD 25 ± 13
 Range 15–51

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Data Collection

We developed a semistructured interview guide, which is designed to ensure that all participants were asked the same questions, and also allow them to elaborate on experiences we might not have considered (Table 2). To minimize bias, we used neutral interviewers trained in qualitative research methods. In-depth open-ended interviews were conducted with 15 participants between July of 2015 and November of 2017. The interview guide was designed to last approximately 60 minutes. The mean interview length was 55 minutes (range, 45 to 120 minutes). Some participants elaborated in-depth on questions posed to them, whereas others offered brief answers. Interviews were transcribed verbatim.

Table 2. - Example Prompts from Semistructured Interview Guide*
Please tell me the story of your migraines.
Can you walk me through your experience of a typical migraine?
How did you treat those migraines?
Before surgery, how did your migraines affect your day-to-day life?
How have your headaches been after surgery?
Tell me about your worst migraine since surgery.
How do migraines affect your life now? What has changed?
How does surgery compare to other treatments you’ve used?
How does what you’ve experienced compare to your expectations?
The interview guide was modified throughout the course of the project, according to consolidated criteria for reporting qualitative research guidelines [Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007;19:349–357], to further probe themes that emerged in earlier interviews.

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Data Analysis

The analysis process involved three stages.17 In the first phase, we convened a multidisciplinary team composed of providers from surgery, internal medicine, anesthesiology, and pain management to perform “open coding” on the first five transcripts.19–22 Open coding involves reviewing each transcript line-by-line and coming to agreement on the themes that appear in the data.17 Using this approach, termed “investigator triangulation,” minimizes bias by requiring that researchers from multiple disciplines agree on the codebook as it is developed. The codebook was developed, refined, and approved by all study team members, after which the second phase, “focused coding,” was performed by a team of trained coders on all transcripts using NVivo 11 (QSR International Pty. Ltd., Burlington, Mass.).17 In the third phase we printed out code lists of all quotes tagged with each theme across all respondents. Two members of the research team (J.S.I. and J.O.) reviewed all code lists for similarities and differences across respondents, created tables of representative quotes, and performed frequency distributions across all themes. All members of the research team reviewed and summarized the results.

All methodology was performed using the Consolidated Criteria for Reporting Qualitative Studies.20 The institutional review board approved this study.

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Although there was some variation in respondents’ postoperative headache experiences, we observed several recurring findings. Participants generally spoke favorably of at least one change that occurred after surgery, even when they were still experiencing head pain. We identified four recurring concepts, which in many individuals were interrelated. First, we found that individuals experience improvement in at least one of several domains of pain (e.g., severity, frequency, character). Second, nearly all participants reported a change in medication use patterns and/or medication efficacy after surgery. Third, for some, the various changes in pain after surgery resulted in improved predictability of pain, and a new ability to participate in daily activities. Fourth, many participants described improved mental functioning or coping, and increased self-efficacy (e.g., one’s ability to manage a condition or experience) (Table 3). Figure 1 represents a conceptual framework for understanding patients’ experience with migraine surgery.

Table 3. - Representative Participant Quotes*
Change in nature of head pain • Participant 2, 56-year-old woman, 32 mo after surgery: “I have more days without headaches than with, which was not the case before. When I do get a headache the pain is, the pain level is way more mild. I don’t think I’ve ever had a 10 [postoperatively].”
• Participant 7, 39-year-old man, 30 mo after surgery: “Just before surgery, I was daily living with an eight or nine out of ten kind of a migraine…and after the surgery, I was down easily to a four. And that was great! But it just, it slowly started ramping up by about a year, or a little more than a year after the surgery. I was back up to regularly a six or a seven out of ten, um, you know, and now I’ve, you know, had eights and nines, and occasionally a ten, but they’re not nearly as frequent as they were prior.”
• Participant 14, 51-year-old woman, 12 mo after surgery: “It’s not as sharp, but you know it’s still there, it’s like a nagging.”
Medication use and/or efficacy • Participant 9, 72-year-old woman, 29 mo after surgery: “Of course they had headache medicine for me, it was Fiorinal with codeine. That’s what I worked the best with. I just used a lot of that…I’m so glad that I don’t have to have [it] filled anymore!”
• Participant 2, 56-year-old woman, 15 mo after surgery: “If I wake up with [a migraine], put some ice on it, take some Aleve, I’m fine! Where before, that pain would just continue. And…I can’t even tell you the last time I’ve taken any Imitrex, or the Maxalt. So I consider that a plus right there.”
• Participant 4, 28-year-old woman, 17 mo after surgery: “Before surgery [medications] didn’t work at all…I tried multiple different ones, I tried Maxalt, I tried Relpax, I tried Imitrex, I tried Topamax, none of those helped…and now, I’ve had the Fioricet for right around a year now, I waited until, I think it was four or five months until after I had my surgery and then I went back and saw my PCP, and she just put me on the Fioricet as needed, and nine times out of ten it works.”
• Participant 3, 53-year-old woman, 19 mo after surgery: “Typically if I just have a headache because of dehydration or I’m just having a headache for who knows what reason, when I have taken my sumatriptan or my migraine medicine it goes away. And it never did that before. I mean, yeah, I would take meds, take meds, take meds and nothing. Now it works.”
• Participant 11, 40-year-old woman, 42 mo after surgery: “I still get [headaches]…but I usually just take Advil and they go away.”
Ability to participate in activities • Participant 8, 39-year-old woman, 17 mo after surgery: “I can do crossword puzzles, I can do stuff on my laptop again. I can look down, I can do my paperwork, I can sit for hours and do filing and do my reports and, you know, do stuff. I haven’t been able to do that stuff. In forever. I can do it now. Um, I can sit on the computer, I can work out in the garden, I can do my yard work, I can do my flowers, I can do everything like a normal person again! Like going on rides, and, um, took my niece and nephew to the beach this year, spent the whole day with them going on different rides and stuff at the park. And um, going on bike rides with my husband. And, it’s just, I have a life again! I pretty much didn’t have one, I couldn’t do anything, I didn’t do anything.”
• Participant 3, 53-year-old woman, 19 mo after surgery: “I just think I feel better and I think I’m healthier, I do more stuff…I mean I did stuff with the migraines before but now I really do stuff…now I’m fully involved.”
• Participant 10, 39-year-old man, 20 mo after surgery: “I couldn’t even plan a vacation because I didn’t know if I would…I would you know get a migraine attack. Now I can at least plan—and when you plan a vacation you feel better.”
Mental functioning and self-efficacy • Participant 1, 59-year-old man, 15 mo after surgery: “It’s definitely easier…I think it’s helped where I don’t really have to think about it. I’ve learned not to think about it. If one’s gonna come, it’s gonna come, and if you think about it, you’re just messing up your own life, you just gotta deal with it.”
• Participant 6, 33-year-old woman, 11 months after surgery: “Whereas before it just felt constant and random, and anything could trigger it…now it’s more like I know, stay away from smells, and when I fly, I’m probably gonna get a headache. You know, of course, if I have to sleep on a crappy mattress, I’ll get a headache type of thing. It feels much more controllable, I guess.”
• Participant 11, 40-year-old woman, 42 mo after surgery: “I think like my temper is a lot better cause I was just so short-fused all the time cause I just didn’t feel good…I didn’t realize how much it affected me until I felt better—And I was like wow! This is what it’s like to feel good.”
The participant number, their age in years, sex (female or male), and time since surgery (in months) are listed next to each quote. Each example quote relates to one of four recurring themes that emerged during data analysis: improvement in at least one of several domains of pain, a change in medication use and/or medication efficacy, a new ability to participate in daily activities, and improved coping or self-efficacy.

Fig. 1.

Fig. 1.

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Change in One or More Domains of Head Pain

Participants frequently described postoperative changes in one or more domains of head pain. The descriptions of changes were elicited by means of open-ended questions, and not prompted by the interviewer. All except two participants reported a positive change in head pain frequency, duration, severity, and/or character, even including the four individuals (patients 12, 13, 14, and 15) who were thought to have a less successful clinical outcome (Table 4). Although not every participant experienced the same changes, the change in pain provided a perceived sense of “manageability” that was not present preoperatively.

Table 4. - Content Analysis of Whether Participants Mentioned a Positive, Negative, or Unclear Change in One of Four Domains of Pain Postoperatively*
Participant Frequency Severity Duration Character
1 ~ ~
3 O
4 ~
6 ~ O
7 ~ ~ O
9 ~
11 ~
12 O
13 ~
15 ~
, positive mention; ↓, negative mention; ~, unclear; O, no mention.
The majority of participants reported a positive change in at least one domain of pain. Even in individuals with a perceived suboptimal clinical outcome (patients 12, 13, 14, and 15), all but one individual described a positive change.

One participant noticed a change in the character of the head pain, from a shooting pain preoperatively to a less intense, “more of an ache” pain after surgery (participant 2, 56-year-old woman, 32 months after surgery). Similarly, participant 1 noticed that postoperatively the pain was “a totally different feeling,” and “the piercing pain is gone, and that is such a relief” (participant 1, 59-year-old man, 15 months after surgery). Most participants reported improvement in multiple domains (such as frequency and severity) (Table 3).

The account of participant 7 differed from any other interviewee, but there was still an improvement in one domain of head pain: frequency. Postoperatively, the pain severity decreased temporarily. Over subsequent months, the pain worsened and the severity returned to preoperative levels. However, the frequency remained improved (Table 3). Even though the migraine severity had returned to preoperative levels, this individual reported that the decreased frequency of the pain provided more control over migraines than preoperatively. In each example, regardless of whether the postoperative change reflected decreased severity, an improvement in character, or decreased frequency, the shared experience was that the change provided new control over, or ability to manage, the pain.

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Medication Use Patterns and Medication Efficacy

All participants described some form of change in medication use after surgery. In some individuals, overall medication use decreased postoperatively, reflecting an improvement in severity of duration of migraines. However, other patients used more medications postoperatively, as they were found to be newly effective (where preoperatively no oral medication could “touch” the pain). For example, one participant reported that abortive medications (e.g., sumatriptan) became beneficial after surgery, resulting in an increase in medication use (participant 4, 28-year-old woman, 17 months after surgery). Other individuals were no longer reliant on prescriptions and instead used an increased quantity of over-the-counter medications, because they found them to be effective (Table 3). Increased medication use postoperatively (because of improved/new medication efficacy) was a welcomed outcome for the patients, as it reflected their improved ability to manage their headaches effectively.

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Predictability and Ability to Participate in Activities

Subjects reported an improvement in their personal and professional lives because of an ability to participate in more activities after surgery, often resulting in less strain on their relationships. In several interviews the participant described how surgery facilitated an ability to “do things,” such as exercise, hobbies, sleep, work tasks, family dinners, group outings, outdoor activities, and chores (Table 3). One participant described a new ability to sit and do work and go on bike rides, referring to herself as “a normal person again,” able to live life without being as incapacitated from her migraines (participant 8, 39-year-old woman, 17 months after surgery).

In some cases the participants reported the postoperative change as more subtle, but the improvement was linked to participation in daily activities. Participants would describe the ability now to do “things that I really couldn’t do before” (participant 5, 68-year-old woman, 18 months after surgery; participant 3, 53-year-old woman, 19 months after surgery) (Table 3). Another participant who did not appreciate a significant change in his work life, and who was still taking daily abortive migraine medication postoperatively, placed particular meaning on a new ability to travel for leisure, emphasizing the freedom associated with an ability to control his personal time (Table 3).

Many patients reported that surgery provided a new ability to engage in activities, even if headaches were not completely cured. Patients became able to “work around” the pain and engage in work- and family-related activities and intimate relationships (participant 14, 51-year-old woman, 12 months after surgery).

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Coping and Improved Self-Efficacy

An overarching concept present in all interviews is that surgery provided an ability to “deal with” an aspect of the participant’s life and/or headaches that was not present previously. Postoperative changes in the physical experience of pain were associated with a need for a shift in mentality or attitude toward the pain (Table 3). This sentiment was described by one individual who noted, “I’m actually starting to plan, ‘Okay instead of at night after work going to bed right away, I can come home and I can take a walk: I can do this, I can do that.’ I have a new life that I’m still adjusting to” (participant 12, 60-year-old woman, 13 months after surgery). In this individual and in others, a change in the pain experience resulted in a change in mental attitude, sometimes inviting/necessitating adjustments in behaviors and attitudes.

For many participants, the summation of the physical and psychosocial changes in head pain after surgery appeared to impact self-efficacy positively (e.g., the ability of an individual to use actions and attitudes to cope with, or manage, an experience such as chronic head pain).23,24 Although in some individuals the pain was not completely gone, there was an observed shift in their perceived ability to cope with the pain. Participants mention mental strategies such as self-hypnosis and positive affirmations, using words like “mind over matter” (participant 1, 59-year-old man, 15 months after surgery). When asked whether they have noticed a difference in the ability to prevent migraines postoperatively, one participant emphasized an ability to just “deal with it” (Table 3).

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Using qualitative methodology, we have found that not only does headache surgery positively impact patients’ lives, but we have learned how it affects aspects of pain and individuals’ ability to function. These include specific changes in one or more “domains” of head pain, such as pain duration and pain character. In addition, we observed that many patients reported improved medication efficacy after surgery. Several patients described that, before surgery, they had “given up on” over-the-counter and prescription medications (both abortive and preventive) because they were ineffective. Following surgery, these patients found that the medications they had previously abandoned were newly effective in preventing or reducing their headaches. Thus, postoperative medication use may have actually increased. Even in individuals who are still experiencing head pain postoperatively, many described improvements in their quality of life, attributable to improved predictability of pain and/or a capacity to “deal with” the headache experience, thus appearing to facilitate a change in self-efficacy.

Headache surgery positively changes aspects of individuals’ experience of head pain and personal and professional lives in ways that support and expand on previously published outcomes reporting success rates after migraine surgery.7,8 Quantitative assessment alone, such as calculating headache frequency or medication quantity, would not have captured these changes. The findings in this study are important because they suggest that the current standards for both clinician-reported outcomes (e.g., complication rates) and patient-reported outcomes (e.g., migraine headache index, headache questionnaires) after migraine surgery might not be fully capturing important concepts that matter to this patient population. An inability to characterize these patient experiences and priorities may, as a result, undervalue the surgery and its impact.

We observed that surgery may facilitate improved headache self-efficacy, defined as the thoughts and behaviors individuals use to cope with migraines. The Pain Self-Efficacy Questionnaire is a validated survey instrument that has been used to study individuals with a variety of chronic pain disorders.25,26 Gfrerer et al. administered the Pain Self-Efficacy Questionnaire to 90 individuals before and after headache surgery, finding a significant improvement in scores postoperatively.12 Compared with other common conditions causing pain, such as chronic back pain, arthritis, and carpal tunnel syndrome, migraine patients had the greatest degree of postoperative improvement in scores.12

The effects of headache/migraine surgery are complex and varied, and may not be fully captured by reviewing headache diaries or calculating the migraine headache index alone. The notion that surgery may allow one to feel more “normal” is in itself complex, and individuals may have very different perceptions of what constitutes living a normal life. Certain domains, such as perception of self and daily functioning, seem to be impacted after migraine surgery and warrant further study.12 This study was not designed to (nor does it claim to) find that certain patient factors are or are not associated with a certain outcome. The present study is an initial attempt to analyze the patient’s narrative and develop a conceptual framework from which to guide future health services research related to headache surgery (Fig. 1).20,27–30

So how will this study affect surgeons offering headache surgery, and how will it affect individuals who are skeptical of headache surgery? Like any qualitative study, the aim is not to improve diagnostic or prognostic criteria or evaluate the surgical technique. The nature of qualitative studies inherently limits the number of participants. However, the depth of qualitative methodology and its focus on the patient perspective allow previously unknown patterns of experience to emerge. For headache surgeons, it is important to realize that patients will have a large spectrum of results, and not one single outcome will be achieved. For example, a patient with the same migraine headache index preoperatively and postoperatively but who has stopped all medications is different from—but may have a result that is as equally as positive as—a patient who has increased their medication use and has a decrease in postoperative migraine headache index. It is also important for involved clinicians to realize that a patient who is still having pain postoperatively does not necessarily reflect a “failed operation,” and many patients will have pain postoperatively but their lives will still be positively impacted. Guyuron et al. chose a 50 percent improvement in migraine headache index as the cutoff for surgery to be considered a success.2,7,8 We question whether the patients with a less than 50 percent improvement actually consider the surgery to be a “failure” or rather experience other improvements that are not fully captured by quantitative measures.

When we purposefully recruited patients thought to have little to no clinical improvement postoperatively, we found that all but one individual reported improvement in one or more aspects of their head pain. Despite ongoing pain or dissatisfaction with the degree of change postoperatively, the underlying changes often mirrored those of satisfied patients (Table 4). We demonstrate, using the patient’s voices at a mean of approximately 2 years postoperatively, that headache surgery can provide real and valuable changes to patients.

There are some limitations to this study. Although the clinical team took part in assessing outcomes in this study, we limited bias on the part of the study team by including individuals from multiple specialties who collectively provided varied perspectives during data analysis. All patients underwent surgery performed by the same surgeon (A.M.A.) at the same institution, and the study may not provide generalizable results. However, our findings may resonate with other individuals who have undergone headache surgery, and provide a framework for ongoing study of patient experiences and the outcomes that matter most to patients.

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Patients with migraine experience meaningful differences after surgery, including improvement in symptoms of head pain, a change in medication use and efficacy, a new ability to participate in activities, improved mental functioning, and improved self-efficacy. Assessing postoperative headache frequency and severity alone as outcomes of surgery may tell only part of the story. Insight gleaned from interviews helps inform clinical conversations and may one day facilitate the development of an assessment tool specific to migraine surgery.

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This work was funded in part by the Plastic Surgery Foundation. The authors acknowledge and appreciate Abdulmalik Alajroush, Diana Gutierrez-Meza, Emma Carpenter, and Qualitative Health Research Consultants for assistance with data collection and analysis.

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