Visiting A New Migraine Specialist
As the cab headed for Mayo Clinic, Arizona, where I was to see a new migraine specialist, I said a silent prayer as familiar twinges of anticipation, anxiety, hope and apprehension danced in my stomach. I had been seeing my previous migraine specialist for about five years, and while I believe he is a good and competent doctor, it had become apparent to me that we were no longer the right fit. I have to admit this was a hard decision as I frankly don’t like change - and then there’s that saying about "better the devil you know than the devil you don’t." Don’t get me wrong - I’m not implying that my last migraine specialist was a "devil" - far from it. Yet, I knew there was a chance that my relationship and treatment with my new doctor wouldn’t be any different than the one with my former one. Was I ready mentally and emotionally to hear from another doctor that there wasn’t anything new we could do at this point?
It wasn’t something I took lightly. After all, doctors are neither magicians nor mind readers. I knew I needed to have realistic expectations about what I wanted in a doctor. So I made my list:
- A doctor who specializes in migraines and headaches and who gives forth a sense of really wanting to help his/her patients. I want to have a sense that this is more than a job, but also a calling. I want my doctor to have a sense of dedication and passion about helping me to gain a better quality of life. (See Migraine and Headache Specialist Listings.)
- A doctor who is actively involved in ongoing medical education and up-to-date and involved in the most recent research in “headache medicine” and who can put it into words that I can understand.
- A doctor who perseveres - who keeps trying even when traditional medicines/procedures fail or don’t work for me. I want a doctor who thinks outside the box, but can back up his/her out of the box thinking with research and clinical observation. I want a doctor who is invested in me getting better.
- A doctor who exudes hope - who lets me know that he/she isn’t going to give up on me - that we will keep trying things. (I understand that this will take patience and perseverance on my part and that my goal needs to be focused on baby steps of improvement rather than on "healing.")
- A doctor who is a team player - who will work with my other doctors and will include me as a part of the team, valuing and respecting my questions and input. I also need a doctor who will consider my other medical problems and treatment protocols and won’t put me in the position of having to choose which doctor’s directives to follow. I’m certainly not in a position to know if one doctor is right or wrong - I need my doctors to work together.
- A doctor who has a means for me to be in communication with him/her in a timely manner.
- A doctor who likes and respects me as a person and is patient with me. Now I know this isn’t on the "normal" list of things one wants in a doctor, but isn’t it really what we all want? If I believe my doctor believes in me as a person and wants to help ME, my whole perception of my treatment is dramatically different - more positive with much more chance of success.)
- Oh, I also need a doctor who isn’t planning on retiring in the next five years since I am just beginning to work with him/her.
After making my list, I then needed to make sure that it was reasonable. I did this by checking with physician friends of mine, a patient advocate (the Teri Robert), and a couple of friends who know me well. Given a thumbs up regarding the reasonableness of what I was looking for, I made an appointment with a doctor who seemed to meet these criteria. Now that I was finally in Phoenix, the question to be answered was how would my wish list compare with reality. I had already fully researched items one and two. I had also had the opportunity to meet, observe and interact with this doctor when I was at the 2nd Annual American Headache and Migraine Association (AHMA) conference in Los Angeles. I had a good feeling about him, but as I readied myself for my appointment, all the what-if’s bombarded me. What if I had made an error in judgement? What if I really wasn’t someone who could be helped? What if this doctor has no new ideas? What if this doctor doesn’t seem to care about me? As the what-if’s escalated, I took a couple of deep breaths and had a good talking to with myself. It was time to get off the roller coaster of doubt and head out the door to my appointment.
I arrived for my appointment and immediately saw a large display that read
“The best interest of the patient is the only interest to be considered.” William Mayo
Wow! How often do you see a statement like that emblazoned on the wall of the medical clinic into which you are walking? My anxiety dissipated even more, and I found myself ready to get on with the appointment itself.
So how did it go? First of all, everyone I encountered, from receptionists to medical professionals, were friendly and helpful. All of my medical records and necessary forms had been collected in advance so there was none of the tedium of filling out forms while sitting in a waiting room. I was promptly called back for my appointment and in walked my new doctor. Yes, this was the man I remembered observing at the conference with a friendly, encouraging, knowledgeable demeanor. He put me at ease immediately. The first thing he wanted to know is what I wanted from my appointment with him. Of course, I told him that I needed and wanted a magic wand! However, once we got down to reality, it seemed we were on the same page. Our mutual goal was to do whatever we could to reduce the frequency and severity of my migraines while acknowledging that I had tried a lot of things that hadn’t worked. When I told him that my last doctor had said that I was at the point of needing to consider decompression surgery (an experimental procedure), he assured me that there were many other things for us to try (without once demeaning the other doctor). It was as if he had handed me hope on a silver platter. He sealed the deal when he said that it might be a process of trial and error that would require patience and communication, but that he was committed to doing whatever he could do. I was impressed by how fluently he spoke with me about the mounds of medical records (well over seven years worth) that I had sent him. It was obvious that he was well familiar with them, and I didn’t have to spend time rehashing my entire medical history. Instead we focused on what was happening with my migraines and headaches at this time. In talking with him about things, he always treated me as a well-informed patient and asked for my opinions and input about things. Whenever I asked a question, he was willing to explain it in as much detail as I needed, knowing that I was curious and excited to learn rather than second-guessing or questioning him. While I know that he had a busy schedule for the day, I never felt rushed.
He did a thorough history of my migraines, as well as a neurological examination. I particularly liked that when I told him about different phenomena that I experience with my migraines that he was quick to tell me the underlying pathophysiology of it. He validated my experiences and never made me feel crazy or like a hypochondriac or drug-seeker. He also clearly understood that the headache part of the migraine was not always the most debilitating part.This was exceedingly important to me because although the pain is quite debilitating, there are other parts of the disease including nausea, visual disturbance, cognitive fogginess and sensory sensitivity that can often cause me the most angst. He referred me to a couple of other departments for appointments to rule out any other possible explanations for my symptoms or to look at possible comorbidities, but did not make me go through assessments and testing that I had already been through.
During my follow-up visit, I brought a friend with me who could have easily become the center of the appointment because of her notoriety in the world of migraine advocacy. Instead he continued to direct his comments and questions to me, while also being willing to answer her questions and concerns. When I walked out of my final appointment, I had a list of eleven new things to try or to investigate. He was also made sure that I understood and knew what my diagnoses were - chronic intractable migraines with and without aura and cluster headaches (as well as possible chronic paroxysmal hemicrania that was already being treated successfully with Gliacin) and how to get in touch with him in between appointments. Best of all, I left his office knowing that I had been listened to, heard, and accepted. I also knew that I had a doctor I could trust and with whom I could work. I was ecstatic that I had a doctor who appears to be committed to my treatment and well-being. All in all, I couldn’t have asked for a better experience, and, as of this time, we are batting 1000 when it comes to my doctor wish list. I’d love to know what constitutes a "good" doctor’s visit for each of you. What do you look for in a migraine or headache specialist?
Oh, by the way, that quote on the wall, "the best interest of the patient is the only interest to be considered" is not just rhetoric. My new doc personified that! When I called my dad to tell him about the appointment, he said that I needed to let the doctor know that "he had just made an old man very happy!" Dr Schwedt, thanks for making both my dad and me very happy! While I am far from migraine free, I received a fresh infusion of hope during my appointment - beats any other kind of infusion hands down!
Wishing you health, hope & happiness,
Cyndi Jordan wrote about Migraine as a Patient Expert for HealthCentral. She is a member of the American Headache and Migraine Association and a Migraine advocate.