Headache 360- “I Am Headache-Free” — Christine’s Headache Story

Announcer [00:04]: Welcome to the Headache 360 Podcast, a place to listen and learn about the diagnosis and treatment of chronic headache and migraine pain. Because information can be the best medicine.

Dr. Lowenstein [00:22]: Hello and welcome to the Headache 360 Podcast. This is your host, Dr. Adam Lowenstein, and my guest today is Christine McCullum. And Christine is actually one of my previous patients. Christine, thank you very much for joining me.

Christine McCullum [00:39]: And thank you for having me.

Dr. Lowenstein [00:41]: For this, I really want to get your story out to the world, and I’m not really planning on leading you very much, so I’m going to ask you probably some open-ended questions, and you know, I just kind of want to hear what you have to say. Let’s start with how you’re doing today. What’s going on in your life and in your head?

Christine McCullum [01:12]: Oh well, today I’m doing fantastic. I am headache-free. I am able to run and be active and go hiking. I am able to go to work full-time again, which I previously was not able to do. I can play with my kids, take them to practice, spot them in gymnastics, play catch with them, play video games, and all those things that I couldn’t do for quite some time.

Dr. Lowenstein [01:37]: It sounds like you’re busier than you need to be. In contrast with that, can we talk a little bit about what your life was like before you maybe even knew my name?

Christine McCullum [01:56]: Sure. Before I met you, probably in August of 2015, I started having severe headaches. They came on immediately. Nobody knew what they were from. It wasn’t MS, and it wasn’t a tumor. So I spent quite a long time trying to figure that out with a lot of doctors. I also had severe gait problems, which means that I had a really hard time walking. I had to use a walker for about a year of my life. I couldn’t walk down a long hallway without holding on to the wall. I didn’t really spin, but I couldn’t balance. When you stand on your two feet, your whole body balances. I couldn’t do that. I had to hold on to something else to be able to ambulate down the hallway. And for quite a bit of that time I was in so much pain, I was in bed. I couldn’t do bright lights, I couldn’t do sound, I really couldn’t read, I couldn’t think very well. A lot of my normal faculties were just super diminished, and I really couldn’t do much. I went to work for a couple of hours, sat there, did very menial work, and came home and got into bed, and just repeated that every day. On the weekends, I just stayed in bed. I really wasn’t able to do a lot of living or enjoying my family or anything else.

Dr. Lowenstein [03:28]: When did this all start, and what preceded it? There’s work, and then there’s what you do. It’s not like you’re digging ditches. Can you talk a little bit about your background and what your life was like before you started to have these headaches, and the difference thereafter?

Christine McCullum [03:59]: Sure. I have engineering degrees, and I work for a defense contractor doing a lot of space-related engineering: math, science, reading, putting things together, and analysis. That’s what I did for work. Clearly, it was a desk job, but it required a lot of mental work on my part to be able to do the job. I was really at the height of my career. I was in some special leadership programs with my company. I was on a really large program as chief systems engineer of a 250-person program, and my team was around 55 people. That’s what I was able to manage before the headaches. They found me a position I could do while I was coping with all of this, but it was nowhere near what I was capable of before the headaches started. They started toward the end of August 2015. Prior to that, I was doing a lot of CrossFit three times a week, about an hour every Monday, Wednesday, and Friday. I was doing Spartan races, the Bolder Boulder, which is a 10K, some 5Ks, and the Rugged Maniac, which is a small obstacle-course race in the mountains. I was pretty active with racing, running, and exercising, in addition to my job. My kids were, I think, in first and third grade at the time, so we did lots of activities with them outside and in the house.

Dr. Lowenstein [05:35]: So then your headaches came on. What happened next?

Christine McCullum [05:46]: Yeah.

Dr. Lowenstein [05:47]: So what’s next?

Christine McCullum [05:48]: What’s next? So you know, one week I started not feeling very well. I started having some numbness and tingling down my arms, really didn’t look well at work. It was a Thursday. My boss sent me home, woke up the next day and said, I really need to go to the doctor. And that’s really when it started. I really wasn’t moving very well, and my head hurt a lot. But it got to the point that day that my headache was so severe I couldn’t talk, I couldn’t move. I was trying urgently to text my husband to come home and take me to the emergency room because something was really wrong. So I went in, they did MRIs of my brain, my neck, blood work, you name it, but everything had come back normal. I did have quite a bit of hyperreflexia, so the doctors repeatedly checked my reflexes that day. But there were no explanations. They told me I wasn’t going to die. They found nothing immediately life-threatening and told me to go home and schedule an appointment with neurology, which was in about two or three weeks.

Dr. Lowenstein [06:49]: I think so far a lot of people are identifying with all of this, which is why I want you to go through it. I imagine that when you had these things happening, you were scared, puzzled, and also feeling alone, because it’s not something familiar. If you’re sneezing, you’ve seen other people sneeze and you know that’s okay. A lot of people I see have these histories and experiences, and they feel like nobody knows what they’re talking about. That’s why I’m trying to get you to talk about all of these different things, so patients can understand. I have patients all the time who say, ‘I’m dizzy. What is this? What does it mean?’ I tell them that’s not an infrequent thing—to have trouble with balance. But anyway, I’m interrupting and I’m going to stop there. So you keep going.

Christine McCullum [07:58]: So in the process of waiting my two weeks to go to neurology, I had seen my primary care physician again. He really thought that I had some kind of mental illness, I think, at that time, because I was having such a hard time standing, squatting, walking, and I was in so much pain, I just needed some relief. And so he prescribed some antidepressants to see if that would help with pain. They didn’t help me. He gave me amitriptyline to start with, but I had previously tried it for some nerve pain in my arm. It really didn’t help, and the side effects were so bad that it wasn’t a good option for me. So I waited. I was scared. Nobody in my family knew what was going on with me, and so I saw the neurologist, and he really had no answers. He scheduled a lot of blood work, which all came back normal. He was testing for vitamin deficiencies and lots of other things. Then, probably around October, he scheduled my first lumbar puncture. Here’s where it gets a little odd for me, maybe unique. That lumbar puncture resulted in a somewhat high spinal fluid pressure. They started me on Diamox because they thought I had too much cerebrospinal fluid, but the Diamox didn’t work. He told me to lose weight. I was a little overweight, but not morbidly obese by any means. I continued having lumbar punctures to drain spinal fluid, took massive doses of Diamox, and saw neuro-ophthalmologists to make sure my vision wasn’t impaired because of possible intracranial hypertension, which I ultimately really didn’t have. I had a lumbar puncture on June 30, 2017, and it ended up with a spinal leak, no relief, and a normal pressure. So clearly the neurologist was stumped. They no longer had a cause for my headache, and nobody could explain why I got relief from the lumbar punctures or why my pressure was only at the top range of normal. That continued for two years. I was mostly normal: I could go to work and function for the most part, but every six to eight weeks I’d have to go get my spinal fluid drained. That was a whole weird thing for two years. Then, in the summer of 2017, I really started doing research because I ended up on disability. I could no longer work full-time, and I really couldn’t run. I was at the beginning of a very difficult time living and functioning as a human, where I was a very high-functioning and high-performing person before that. I started seeing different doctors. I went to physical therapy. They did more MRIs of the rest of my spine, more MRIs of my brain and neck, and tried different treatments. I had more steroid injections. Those helped for a couple of weeks, but only with some of the headache pain and not the other symptoms. They did facet injections in six areas of my neck; those helped the first time but didn’t help the second time. It was incredibly painful. I took two different types of anti-seizure medications and a couple of different antidepressants, none of which helped or provided any relief. The side effects were so severe that I couldn’t take them anymore. I was nauseous all the time. This is where I really became bedridden and ended up on long-term disability, which I don’t think anybody really wants to be on. It’s very scary and quite depressing not to be able to function and to have to rely on long-term disability. I was very happy that I had that option as a benefit, but I never wanted to use it. Then I started on my journey to figure out what was wrong with me. It was clear that the doctors were stumped. I had seen a physiatrist, and you know, she works with neurosurgeons, trying to figure out why my walking was such an issue. I had seen a couple neurosurgeons. One couldn’t figure out why I was in his office. We went out to Mayo Clinic to see if we could get a different perspective from a neurologist there. He couldn’t find anything wrong with me and wanted to redo a lot of testing that I had done. I had also done an online neurosurgical consult with a place out in New York. The name escapes me right now, but he reviewed all of my x-rays and MRIs and everything else, and he really told me, ‘I can’t find anything structurally wrong with you.’ I said, ‘What do I do?’ And he said, ‘You need to start from the beginning again. Wipe everything off your diagnosis list, restart with your symptoms, and go find somebody to start fresh.’ At the time, I had probably 20 different diagnoses.

Dr. Lowenstein [13:26]: That’s also super unfortunate and very common. We get a lot of patients with that.

Christine McCullum [13:35]: It was frustrating because if you look at the symptom list and the diagnoses, there were lots of overlaps. They weren’t really true diagnoses; they were much more symptoms like tinnitus or nausea, or the gait issues and things like that, with no real cause. The pain doctors I had been seeing really couldn’t help me anymore. I started looking up headache pain maps, and I found one that looked exactly like mine. It was in my neck and in the back of my head. I said, ‘Oh my gosh, I think I know what’s wrong with me,’ and it was occipital neuralgia. I had seen a PA in neurology in the summer of 2017, maybe, and he said, ‘Occipital neuralgia.’ I kind of chuckled, and he looked at me and said, ‘Why are you laughing?’ I said, ‘Well, I was going to ask you about that, because that’s where my pain is. My pain doesn’t move; it’s always in the same spot every day.’ When I had flares, they would really wrap around my head and go much farther. So we started the nerve blocks, and I got relief.

Dr. Lowenstein [14:46]: And Christine, let me just ask you before just going back, and you talked about you had lots of different diagnoses. Had you been diagnosed with migraine?

Christine McCullum [14:57]: No.

Dr. Lowenstein [14:58]: Okay.

Christine McCullum [14:58]: That wasn’t one of them.

Dr. Lowenstein [14:58]: Other types of headaches, or was it all just variable?

Christine McCullum [15:06]: It was all very generic. Yeah, it was all very generic. I think they did the — like I can’t remember the name of it. It was the constant headache or persistent headache.

Dr. Lowenstein [15:18]: Daily persistent headache.

Christine McCullum [15:21]: Daily persistent headache, yes. But nothing else in terms of a headache—just very generic things. So that was probably the second headache diagnosis I got, occipital neuralgia, but it fit more. They had also given me medications to rule out other types of headaches, including —

Dr. Lowenstein [15:45]: Hemiplegic migraine.

Christine McCullum [15:45]: They were really stumped, and I wasn’t responding well to most of the treatments they were providing. But the nerve blocks worked for a couple of weeks at a time, which was good relief. After about three times, they said that wasn’t the right treatment for you. Try something different, and they didn’t have anything else to offer other than facet injections, which I said really weren’t very hopeful. And so this went on, and I started seeing lots of doctors, and I just started scheduling with every doctor, different type of doctor that I could until I could get some answers. Then I had Kaiser. They sent me to their pain management clinic, where I saw a pain doctor, a psychologist, a nurse, and a physical therapist. It was, I think, a 12- or 16-week program. That doctor really advocated for me, did some additional testing, and got me to the university hospital in Denver and to a headache specialist there. He thought of some other ideas involving atlas instability and other stability issues in the neck, and then got me to the chief neurosurgeon at the university. Between the two of them, they went through everything. By then, I had done every kind of test and imaging imaginable, including upright MRIs, cervical spine X-rays, and everything else. The neurosurgeon took a lot of time to walk through every single image, explain why my nerve roots weren’t a problem, and convince me that there was really nothing wrong with my neck, because that’s what I thought was wrong with me. I just thought it was in my neck. I thought they could fix my neck, and then my nerves would be happy, and I could just go on and be a normal kind of person again.

Dr. Lowenstein [17:38]: And I have to say, yeah, I mean, I think you’ve got really good neurosurgical care because a more common thing is that even small changes that are seen pretty much in everybody’s neck are interpreted as the problem. And so many of my patients have had previous C-spine surgery. Because you had neurosurgeons who recognized that operating on your spine was not the first line. So again, kudos to the surgeons you saw. That was very fortunate for you.

Christine McCullum [18:18]: And it’s probably worth noting, I had all of those small abnormalities that you would have. You know, I was 40 when I saw that neurosurgeon, I was 38 when this started. And you know, I thought it was a disc. And it wasn’t. I had all those little bulging things and arthritis, but that really wasn’t the root cause of my headaches.

Dr. Lowenstein [18:44]: But again, it’s you know, a lot of surgeons take that opportunity to operate. So it’s great that you didn’t have to go through that.

Christine McCullum [18:55]: That was January 2019, and at that point I had been doing online research about decompression surgery. My next step after seeing him was to contact somebody like you. I didn’t have any other options or any other doctors. I did ask the neurosurgeon about decompression surgery. He actually indicated that he had done it a couple times, but he didn’t really get good results and that wasn’t really his specialty. And so that kind of reinforced that I needed to go find the right surgeon and the right person to help me. And I started doing research on plastic surgeons that did decompression surgery. I found around five surgeons. One was on the East Coast, and that was kind of too far for me. I didn’t really love some of the patient reviews. I found one in Texas, but I had a really difficult time connecting with that doctor. One was up in Northern California, a really respected surgeon. I grew up in Sacramento and didn’t really want to go to San Francisco because it’s difficult to get around. Then I found you, and it was great that you came to Denver. That was really important for me. It was difficult for me to travel, so I was very happy to do my consultation with you in Denver. It made it so much easier, and it was a big part of why I chose you and your reputation and all the care that you were being able to provide. So I remember I sent your office an email at the end of January and heard back the next day and started scheduling time to meet with you.

Dr. Lowenstein [20:49]: I remember the first time we met very well because you were literally holding on to the couch and the wall. You were in a whole world of distress. I usually like to get involved in these conversations, but you’re doing a great job of explaining a lot. My goal is to help patients who feel like they are unique—and everybody is unique—understand that sometimes it’s good to know there are other people like you. You’re doing a great job of talking about things that I hear from patients all the time. So, we found each other. Can you talk a little bit about what it’s like from a patient perspective to come in, what the experience was like during our consultation, and how things went from there?

Christine McCullum [22:06]: Yeah, I’d be happy to. The first time I saw you, I’m pretty sure I was holding my breath. I was really nervous. This felt like my last hope. If you had told me you couldn’t help me, I’m sure I would have continued looking for other avenues, but I was running into dead ends everywhere and didn’t have many options left. As much as I was praying and holding my breath that you were the one who could help me, I was very nervous. I think you relaxed me a little bit. You did your nerve blocks one at a time. I won’t lie, that hurts a little bit, but in a different way than the constant headache. And you did one injection at a time and took the time to hear about all of the other things, you know, in between while we were waiting for the rest of my head to go numb. I can’t remember how many injections you did, but it was quite a bit, because yeah, I remember that one nerve. It wasn’t quite where we thought it was. And you know, by the end of the consultation, the whole back of my head was numb and I had no pain left, and I remember you saying that you could help me. And that it was my choice. I’m pretty sure I didn’t cry, but probably wanted to. And so that was the consultation and I think I had surgery exactly one month later, March nineteenth. I actually remember some of these dates very well, because they were life-changing for me. So March 19, 2019. I flew in the day before. I think that was a Tuesday. So my husband and I flew in on Monday night, or Monday, probably during the day.

Christine McCullum [23:54]: Saw you late afternoon, and you did a couple more nerve blocks to make sure we had the right area. You talked me through the surgery and what you were going to do and got me all ready. I had all my medications that I brought with me that you prescribed for before, during, and after the procedure.

Dr. Lowenstein [24:15]: And then I’m going to interject here. One of the things that may not be clear is I saw you in Denver. I have my surgery center that I do the surgeries is in Santa Barbara. So that’s why you were flying. I have a lot of people come from a distance to see us. So we have kind of protocols. And right now, as we’re recording this, you know, we’re in the world of COVID right now, which has made all of this much more difficult. I wish I could have patients just fly in and two days later operate on them because now we have to get COVID tests and some periods of isolation. And you know, I’ve got patients from Europe and Canada and whatnot that are kind of waiting for things to get better before they can come. But the point of what I’m trying to say is, I do see patients in various areas, we do the surgery here because we have a team here that really knows what they’re doing. It’s not an operation that’s done well with staff who don’t really understand what we’re doing. So when Christine says she flew in, she flew into Santa Barbara and stayed at a local hotel. Is that right, Christine?

Christine McCullum [25:47]: I did, right down the street, maybe two blocks.

Dr. Lowenstein [25:50]: Yeah. I just wanted to clarify that. So, we did your surgery on a Thursday?

Christine McCullum [25:50]: Tuesday.

Dr. Lowenstein [25:50]: Tuesday. On a Tuesday, okay. Do you want to talk about how that was?

Christine McCullum [26:11]: Sure. So came in early in the morning, and you drew a whole bunch of lines on my head and my neck and shaved the back of my head. And you know, it was like a little strip up the middle.

Dr. Lowenstein [26:25]: Yeah, I didn’t shave the whole back of your head.

Christine McCullum [26:27]: It wasn’t the whole back of my head, it was just a strip up the middle.

Dr. Lowenstein [26:30]: It’s just a strip in the middle. I put my initials there, and you wanted something like the Denver Nuggets logo, so I put some of that on. No, I’m just kidding. It’s just a strip in the back of your head that I shaved.

Christine McCullum [26:43]: Yep, and you know, that wasn’t a big deal. You know, you got me ready for surgery, and your anesthesiologist came in and started my IV and did all that pre-op stuff. I remember him giving me some anti-nausea medication, and at that point I don’t remember a whole lot other than walking into the operating room, getting on the table, and then the next thing I know I was waking up.

Dr. Lowenstein [27:12]: Well, that’s his job, so I’m glad that’s what you remember. That’s good.

Christine McCullum [27:18]: He did it well. I remember when I woke up, I think you were there right away, and you wanted to know if I could walk. That’s how I woke up. You asked me if I could walk, and I think I told you I had just woken up and needed to try.

Dr. Lowenstein [27:34]: And I’m an anxious guy. I like to make sure that we’re helping people immediately. All right, fair enough.

Christine McCullum [27:42]: But I can tell you that my headache was gone immediately. My head was numb, quite a bit numb. People kind of say it feels like a helmet head. You know, I don’t really remember all of that now, but I remember it being fairly numb, not being able to feel it, which is probably a good thing. I think it helped with a lot of the post-operative pain that I may have felt if it wasn’t numb. Your team got me up and ambulating, and I remember I was able to walk again. I went back to the hotel, but you wouldn’t let me walk down the street to get there, so we caught a ride. I remember feeling a little nauseous, and you said, ‘Do not throw up.’ Whatever you do, don’t throw up. So I remember taking an anti-nausea pill and sleeping for several hours. Got up, and my husband said, We need to eat. And so we were walking down the stairs at the hotel to the market right across the street.

Dr. Lowenstein [28:44]: Yeah.

Christine McCullum [28:44]: And Chad said, You’re not holding on. And Chad is my husband, and I said, Oh, you’re right. You know, there were things that I had to do before surgery to be able to walk, which was I really had to look at my feet. I had to hold on to handrails, and I was walking normally again, and it was immediate. It wasn’t a waiting period for me. My walking came back right away, and I felt really good, even though I had just had surgery for, I think, four and a half hours. I don’t know if you want to interject.

Dr. Lowenstein [29:17]: Yeah, a couple of things. It’s not that you absolutely can’t throw up. I don’t remember saying that, although I may have. We give you medications to try to prevent nausea and vomiting. When you throw up, you increase your blood pressure, so whenever we operate in the head and neck, if we can avoid people throwing up, we do. It’s unpleasant for the patient, and we also don’t want to increase blood pressure in and around the incision. When we do the surgery, I put a lot of local anesthesia around the incisions, so you’re hopefully not in a whole lot of pain afterward. I love this story about you not holding on. I actually hadn’t heard that.

Christine McCullum [30:10]: So you may not know the next part either. So we walked across the street to the market, and the market right next to the hotel is great. They had some chicken salad, which I think is what I had. And some crackers and Gatorade. I mean it was a great little market to have right across the street when you have surgery, because they had everything I needed, and it was fresh food, so that was nice. And we ran into one of your staff at the market.

Dr. Lowenstein [30:32]: Oh, I don’t know about this. Okay.

Christine McCullum [30:32]: And she said, What are you doing? And I said, he told me to walk and he told me to eat. So I’m walking and I’m eating. So we got our food, and at that time we sat outside just to get some fresh air. They had a little picnic table outside and we could eat outside, so we had a little bit of food and walked back over to the hotel.

Dr. Lowenstein [31:00]: A little shout-out to McConnell’s Market. That’s what it’s called. It’s a great spot.

Christine McCullum [31:06]: It was great, it was perfect. And we ate, I ate a little bit, and then we went back to the hotel, and I’m pretty sure I took some pain medication and slept. And I did bring my pillow. I brought my favorite little blanket as well so that I could be comfortable and just have a couple things from home. And you know, the hotel was fine. I was comfortable. It was a little hard sleeping on the back of my head, so I slept on my side. And so that was Tuesday. I think I saw you Wednesday at some point so you could check the incision and things and see how it was doing. And then I think I saw you Friday morning, and then we took an Uber to In-N-Out, had a cheeseburger and then to the airport.

Dr. Lowenstein [31:54]: I’m going to tell you a really funny story separate to this. I have some friends in plastic surgery, and when we go to the plastic surgery meetings, we always pick a really nice restaurant locally to eat at. And I’m actually from Washington, D.C. And there was a meeting in Washington, D.C. And so we went to this place called Citronelle, which it’s no longer there, but was a great restaurant. And the wine guy, the sommelier, was a very famous sommelier, and he had just gotten what’s called the James Beard Award, which is about the biggest award you can get in food. And so we were talking to him, and it turns out that he had previously been in Santa Barbara trying to open a branch of the restaurant many years before. This is totally irrelevant to your story, but he was telling us about being in Santa Barbara and trying to train people for the restaurant here. And so I asked him, I said, listen, just I’m curious, you know, you’ve been to Santa Barbara, what do you think the best restaurant, the best food in Santa Barbara is? And what did he say? In-N-Out. In-N-Out burger. So there you go. All right, that’s my little caveat there. Okay, so you went In-N-Out burger.

Christine McCullum [33:18]: We went to In-N-Out, and then we went to the airport. Yep, so we went to the airport. I think we had a, I don’t know, mid-morning, early afternoon flight and flew back to Denver. I remember the flight being okay. I don’t remember being in much pain by Friday. But my post-surgical pain was pretty minimal. I didn’t really take the narcotics very long, maybe a few days and then maybe a few nights. But mostly it was just Tylenol and maybe some Advil, but I felt really good. And so traveling really wasn’t a problem, and I had my husband carry my backpack, purse, and luggage because that was a big no-no.

Dr. Lowenstein [33:58]: I don’t have people carrying or doing that kind of stuff right after surgery.

Christine McCullum [34:04]: So we got home that Friday. After that, I went for walks during the day—maybe a mile or a couple of miles every couple of days—to make sure I was moving. My mom lived around the corner at the time and would come over and make sure I was good because my husband had to go back to work. But I felt so good, I needed to make sure that I didn’t overdo it. And so I had to make sure I took my nap, I rested, I had some good food, and you know, wasn’t going out running, but walking seemed to be really good, and it was spring or summer. So it was beautiful outside. So that was my recovery. And I went back to work six weeks later. I think I went —

Dr. Lowenstein [34:46]: Did you get a new job?

Christine McCullum [34:46]: That was later. That was after the second surgery. And so I remember I went back after six weeks. That was what was authorized with the disability company. I did go back part-time because I think it’s important for everybody to remember that, after being in so much pain and having so many bizarre symptoms for such a long period of time, your body really needs to recover. I wanted to make sure that I recovered because there was no way I wanted to go through the last four years again. By this point it had been almost four years, so I took the six weeks off, recovered, and went back part-time. I can’t remember how long—maybe a month. Part-time was about 15 to 20 hours a week so I wouldn’t overdo it, because I was still tired and my body was still trying to heal. I remember seeing you probably every month for the next four or five months. At one point my headache did come back, and you gave me a couple of injections of steroids, I think.

Christine McCullum [36:05]: Maybe just lidocaine.

Dr. Lowenstein [36:05]: Yeah, it was just lidocaine.

Christine McCullum [36:09]: Lidocaine. And I think you remember telling me that my nerve may have just been angry from the surgery because you had done a lot of work on it. And that did the trick.

Dr. Lowenstein [36:18]: So for the first three to six months after surgery, it’s not uncommon for people to have recurrent headaches. That’s not a predictor of how the long-term outcome is. So I think this is very important for people to understand that. So you did have some headache after surgery.

Christine McCullum [36:36]: I did. It certainly was not as bad as before. Mine, I think, was on the right side. You did the injections, the pain went away right away, and I don’t remember it ever coming back that way again.

Dr. Lowenstein [36:51]: And actually, Christine, I’m just going to interject one more thing here. I don’t even think we actually talked about what surgery that you had. So you know, there’s more surgery to be had here in a little bit, you guys as a spoiler alert, but we did your bilateral greater occipital nerve decompression, right?

Christine McCullum [37:11]: Yes.

Dr. Lowenstein [37:12]: And lesser occipital nerve, right?

Christine McCullum [37:15]: You — I remember you cut the third and the lessers.

Dr. Lowenstein [37:18]: Yeah, so you decompress the greaters. So this is all occipital surgery. So, okay. So go on…

Christine McCullum [37:26]: At that point I still had really bad ear pain, especially in my right ear, and it had come back. You and I spent quite a bit of time talking about why and what could cause it. You had done some nerve blocks of my great auricular nerve, and the ear pain had gone away, and I remember you asking me if there’s one thing you can do to help me, what would it be? And I said, just cut that nerve, just cut it out. I don’t need it anymore. I just needed the ear pain to go away.

Dr. Lowenstein [38:05]: And that was the great auricular nerve. That’s not a common problem. A lot of people will complain of ear pain, and addressing the lesser occipital nerve can help. But in your case, you had persistent ear pain, and I wasn’t sure what was causing it, so I thought maybe it was the great auricular nerve. And the great auricular nerve is a more superficial nerve and it comes down below the ear, and it’s not something usually addressed in headache surgery. But when you responded to the nerve block, that was an indication to me that this was a nerve that needed to be addressed. The great auricular nerve is actually a nerve that, as plastic surgeons, we learn to stay away from during facelifts because if you cut it accidentally, your ear goes numb. When you don’t have an ear problem and you get a facelift and wake up with a numb ear, you’re often not very happy. Plastic surgeons have gotten pretty good at staying away from that nerve. But in your case, I thought it was a good idea to find it and, like you said, cut it. So that was round two—the next surgery we did, right?

Christine McCullum [39:27]: That was round two, in July. The first surgery was in mid-March, and then Chad and I flew out again. This one was tricky because you did some nerve blocks the day before surgery, and we really weren’t getting it. Maybe it was the day of surgery, but I remember we had a hard time figuring out exactly where that nerve was to make the pain go away. Then I had surgery again. I think it was a much shorter surgery.

Dr. Lowenstein [40:01]: And I remember a bigger incision, but a smaller surgery, right?

Christine McCullum [40:05]: It was a bigger incision. I did ask you not to cut behind my ear, so I was happier with the larger incision on my neck. Just, I guess, personal preference. I didn’t think I wanted stitches right behind my ear. And so I talked to you about that. And you can’t see this, you can’t see it from the front, so it was okay with me, and actually nobody ever sees it. My hair covers it. Although the incision is long, it’s very thin and not noticeable.

Dr. Lowenstein [40:39]: Just to revisit this: can anybody see the scars from your first surgery?

Christine McCullum [40:50]: Only if I point them out and show them.

Dr. Lowenstein [40:52]: Yeah, and most of it is back in your hair, right?

Christine McCullum [40:56]: Yeah, that’s a big one in my hair.

Dr. Lowenstein [40:58]: Right. Yeah. But when we do this surgery, and again, it’s a very specialized circumstance, but this is a surgery kind of near the ear that we have to address, the nerve that feeds the ear. So anyway, I’m sorry. Go on—I’ll stop interrupting.

Christine McCullum [41:16]: So I remember waking up and you said, Can you feel your ears? This is from my perspective. And I could still feel my ears, and I know that both of us were nervous. I don’t remember being in pain, but I think we were both nervous because I could still feel my ear. I remember you couldn’t really find the big trunk on the left side. You had cut some of the smaller branches that come out. I remember seeing you Friday, and there was a big parade in Santa Barbara. I was feeling amazing again—my ear didn’t hurt. I was able to go home shortly after that. I saw you maybe one or two more times after that—probably two more times. But we were running out of reasons to see each other because my pain was gone and my incisions were healed. After that surgery, I stayed home, I think, for four weeks. I really didn’t need a full six weeks, and then I ended up going back full-time, and that was the first time in almost probably two years that I was able to go back 40 hours a week. And I think the week I went back is when I gave my notice and I switched companies because I started my new job in — until mid-September. It was amazing because the surgery gave me the opportunity to go do some new things that I really wanted to do in my career.

Dr. Lowenstein [43:00]: Can you say who you work for, or is that allowed or is that a security issue?

Christine McCullum [43:04]: No, it’s not a security thing. I work for Ball Aerospace right now. And we moved a few weeks after I had surgery, so you know I couldn’t do a lot of the lifting or things like that. So I had a lot of help moving with my family and things like that. But we were able to move. I started a new job, the kids started new schools, you know, probably thirty-five, forty minutes away from where we lived, and it was much closer to my husband’s work as well in Boulder. But if I hadn’t had the surgeries, there was no way that we would have been able to consider moving and changing jobs. Because I was just so disabled.

Dr. Lowenstein [43:52]: Can you also talk a little bit about your physical activity? So again, with restrictions of COVID and daily, you know, activities of raising children and things like that. But I think this is important because I think people lose sight of what is possible when you know when you’re just having problems with your balance and problems with the pain and whatnot.

Christine McCullum [44:20]: Sure. Somebody asked me whether I was nervous to be active again after surgery. The honest truth is that I was, probably for about a year. I’m almost two years out now from my first surgery. I was quite nervous. That October I did a 5K. I was starting to try to run, and that was probably a little too soon and a little too much, so I walked it with my daughter. It was right at the end of October for Halloween. I walked 3.1 miles. I would never have been able to do that without the surgery. That was triumph number one. I was a little upset I couldn’t run, but my legs didn’t want to run at that point. I needed a little more conditioning and weight training to get my body back into doing that. So four months after surgery, I walked a 5K, and then COVID happened in March, and so all the races that I had signed up for last year got canceled. And so I said, okay, well, I can go hiking. So I’ve been on six mile hikes up in the Rocky Mountains, literally straight uphill and straight downhill. Not sure what I was thinking on some of those, but I’ve been —

Dr. Lowenstein [45:51]: No railings, though.

Christine McCullum [45:51]: No railings. No, in fact, the last one that I did, I had to like climb up some rocks and shimmy down, and my daughter had broken her hand, so my niece and I were picking her up and pulling her up and down because she could only use one hand, and there were some pretty bizarre places on this trail. We don’t pick easy ones. We look at the trails and say, ‘Oh, that’s really interesting—and that’s the hardest one. Let’s go do that one.’

Dr. Lowenstein [46:20]: And you know, there’s a lot around where you are, so there’s a lot of good options around Denver and Boulder and such.

Christine McCullum [46:28]: While I’m not running road races right now because of COVID, I’m going out and enjoying the outdoors. I can spot my daughter and her gymnastics in our basement with our little mock gym and things like that. And so I couldn’t do any of those things before. I’m not really scared anymore about, you know, disrupting all the things that you fixed in the back of my head. But there is that thought, and it took me probably a good year to get over it, which is I don’t want to mess this up again. So I’m cautious. I’m not doing CrossFit anymore. I probably will never do CrossFit again. But I do go to the gym and the rec center with all the proper precautions, of course, and you know, do some weight training in the basement. I picked up a barbell for the first time probably three or four months ago and did some 50-pound deadlifts. I was probably doing 150 to 200 pounds on deadlifts before, but I can go do things again. It’s in moderation.

Dr. Lowenstein [47:31]: Conditioning needs to come back gradually. This is true after any kind of surgery. I had a patient once who got upset with me—she didn’t even have migraine surgery; she had something else. Afterward, I told her that after a month she could gently start activity again, but she needed to start slow. Again, but you have to start slow.

Christine McCullum [47:56]: Yep.

Dr. Lowenstein [47:56]: She said, ‘Before surgery I could do 300 sit-ups, and now I can only do 75.’ And I’m sitting there going, ‘You shouldn’t be doing 75 sit-ups three days after I release you.’ You should do five, then ten. After you take a month off for surgery for any reason, conditioning is a big deal.

Christine McCullum [48:23]: It’s everything in moderation. Will I ever be as strong as I was before? I don’t know if I have that desire, but I know I can run and do conditioning and weightlifting within moderation. Every now and again I’ll get a headache from stress at work, and I can take a couple of Tylenol and a few Advil, and it goes away. I couldn’t do that before. I don’t mean that I’m literally 100% headache-free, because I think everybody, even without this condition, will get a headache—a tension headache, a regular headache, or whatever.

Dr. Lowenstein [49:03]: Normal headaches are normal. If I can get everybody back to normal headaches, that’s the goal.

Christine McCullum [49:10]: I’m not freaked out about getting a headache. Occasionally, I do get one, and I take some Tylenol and I’m good to go. But I know how to treat it, and I can treat it, which I couldn’t do before. It just didn’t work before. My daughter says she didn’t remember who I was because she was in first grade when it started, and she’s eleven now, in sixth grade, and she loves having her mom back. And I’m sure my son enjoys it too when he’s not playing his video games. But it had a really big impact on my daughter. She was five or six when it started, and she loves hanging out with me and playing, and you know, my husband loves having me back because I can do stuff around the house with him now. And so it’s wonderful.

Dr. Lowenstein [50:05]: That’s great. That’s all you can ever want to hear as a surgeon—to have been able to be involved in something like that. I’m very appreciative of your comfort in sharing all of this with people, and I certainly hope that it gives some hope to people who have situations like you did. I think the hopelessness and isolation—the feeling that there’s nowhere to look for help—is one of the worst parts of migraines, occipital neuralgia, and these kinds of headache syndromes. And you know from my standpoint, it sounds like you had really good care before you came to see me, which is fortunate. There’s just not really much to do except what we did for you that would make you better. So it’s not the fault of the people who helped you before you saw me, because there’s not really much they could have done to make things better. But you know, you had a good diagnosis. I think a lot of people who have pain in the back of their head and potentially, you know, again on the side and their ears and whatnot are getting all different kinds of headache diagnoses, migraine diagnoses. And you know what we find is that these nerves in the back of the head and some in the front — in your particular case, you didn’t have issues with the nerves in the front of the head, but you know, we treat everybody individually, and a lot of people have neuralgias of the occipital nerves or the supraorbital nerves above the eyes and things like that. And it’s just finding somebody who can understand what’s going on can be a really difficult thing when you’re getting all of this different information and nobody’s really helping.

Christine McCullum [52:14]: I saw a lot of doctors—over 20 in a two- to three-year period—and I had such odd symptoms. They didn’t put them together or think they could be connected. Some people out there might have been diagnosed with a functional illness. I had one doctor who told me that if I learned how to breathe, I’d be able to walk again, even though she didn’t know why I had all the other symptoms. It was really unfortunate because I knew there was something wrong with me, and all of my symptoms started at the same time. And I didn’t want to be on disability. I wanted my life back. You know, I did have good care, but my doctors were at a total loss of how to help me. They just didn’t know what to do for me.

Dr. Lowenstein [53:16]: That’s when people tend to stumble into my office. The people who have not been able to find help with other physicians. I hear people say all the time that they’ve been to 20 doctors and nobody can help them, and they are very skeptical about seeing me as well because they don’t think I can help. I can’t help everybody, but honestly, we can help the majority of the people we see. That’s a fortunate thing for us. I really appreciate you sharing your story with us, Christine. I wish you all the best. Hopefully the COVID situation will get better soon, and we can all go back to enjoying our lives to the best that we can.

Christine McCullum [54:16]: Well, thank you for having me. I hope this helps people relate a little bit.

Dr. Lowenstein [54:26]: You’ve done a fantastic job of explaining a lot. I think it’s going to help a lot of people, and I really appreciate it.

Christine McCullum [54:37]: You are so welcome, and thank you for helping us get back to normal.

Dr. Lowenstein [54:43]: Well, that’s absolutely my pleasure. You have a great family, and it’s an absolute pleasure to work with you. Thank you. All right. Again, thanks to our listeners for tuning in, and I hope this was helpful. Please, if you get a moment… I don’t even remember how this works. You either like a podcast or, I think, subscribe to it. Most of my world is spent actually operating on people as opposed to being a professional podcaster. So do what everybody else asks you to do when you listen to podcasts. Please feel free to get a hold of us at our offices. Our website is headachesurgery.com, and our phone number is 805-969-9004. There’s a lot of information online, and we really try to keep the website as educational as possible. I encourage people to check things out there. And again, thanks to Christine, and until next time, again, thanks for listening.

Dr. Lowenstein [55:53]: Hey everybody, this is Dr. Lowenstein once again, and I have two last things to ask of you. Firstly, the thing you can do for fellow headache sufferers is to please remember to subscribe and rate our podcast. The more ratings and subscriptions that we get, the more visibility that we’ll get, and the more listeners will be able to find us, and the more help and information we’ll be able to provide to the huge population of people who suffer from headache pain. Secondly, please remember that the treatment of headaches of all types is very individualized. The purpose of this podcast is not to give medical advice, so please use the information here on this podcast and elsewhere that you hear on the internet to broaden your knowledge, but consult with your physician before acting on any information that you hear on podcasts, see on YouTube, or read anywhere on the internet. I, as a physician, don’t necessarily endorse the opinions or practices of my guests. If you have particular questions that you’d like to consult with me directly about, please call our Headache Surgery Center. Our phone number is 805-969-9004, or you can email us at info@headachesurgery.com, and my staff will set up a consultation so we can discuss your specific case over the phone or in person. Our website is filled with information as well, and that is headachesurgery.com. Thanks and best wishes from all of us here at the Headache 360 Podcast.