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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:
Hello, and welcome to the Headache 360 podcast. This is your host, Dr. Adam Lowenstein. My guest today is Christine McCullum. Christine is actually one of my previous patients. Christine, thank you very, very much for joining me.
Christine:
Thank you for having me.
Dr. Lowenstein:
For this, I really want to try and get the world your story, and I’m not really planning on leading you very much. So, I’m going to ask you probably some open-ended questions. I just kind of want to hear what you have to say. Let’s just start off with how are you doing today? What’s going on in your life and in your head?
Christine:
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, and take them to practice, and spot them in gymnastics, and play catch with them, and video games, all those things that I couldn’t do for quite some time.
Dr. Lowenstein:
It sounds like you’re busier than you need to be potentially. In contrast with that, can we talk a little bit about what your life was like before you maybe even knew my name?
Christine:
Sure. Before I met you, probably August 2015 I started having severe headaches. They came on immediately. Nobody knew what they were from. It wasn’t MS. It wasn’t a tumor. So, I spent quite a long time trying to figure that out with a lot of doctors. I had some 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 onto 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 onto something else to be able to ambulate down the hallway.
Christine:
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. So, a lot of my normal faculties were just super diminished. I really couldn’t do much. I went to work for a couple of hours. I sat there and did very medial work, and came home and got in the bed and just repeated that every day. The weekends, I just stayed in bed. So, I really wasn’t able to do a lot of living or enjoying my family, or anything else.
Dr. Lowenstein:
When did this all start, and what preceded this? There’s work and then there’s what you do. It’s not like you’re not digging ditches. So, can you talk a little bit about your background and then what your life was maybe before you started to have these headaches and the difference thereafter?
Christine:
Sure. I have engineering degrees, and I work for a defense contractor doing a lot of space-related engineering. So, math, science, reading, putting things together, analysis, that’s what I did for work. Clearly, a desk job but a lot of mental work on my part to be able to do work. 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, Chief Systems Engineer of a 250 person program. My team was around 55 people, so that’s what I was able to manage pre-headaches. They found me a position to be able to do, while I was coping with all of these, but it was nowhere near what I was capable of prior to the headaches starting.
Christine:
They started towards 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, Friday. I was doing Spartan races, the Boulder-Boulder, which is a 10K, some 5Ks, the Rugged Maniac, which is a small obstacle course race up on the side of the mountains. So, I was pretty active doing racing and running, and exercising, and then my job. My kids were first and third grade at the time. So, we did lots of activities with them outside and in the house.
Dr. Lowenstein:
Then your headaches came on. Can you kind of, I guess next [crosstalk 00:05:43]-
Christine:
Okay. The next part?
Dr. Lowenstein:
Yeah. What’s next?
Christine:
What’s next? One week, I started not feeling very well. I started having some numbness and tingling down my arms. I really, really didn’t look well at work. It was a Thursday. My boss sent me home. I 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. Head hurt a lot. 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, really wrong.
Christine:
So, I went in. They did MRIs of my brain and my neck, blood work, you name it. Everything had come back normal. I did have quite a bit of hyper reflexes, so the doctors really had fun hitting my reflexes that day. No explanations. They told me I wasn’t going to die. I had nothing severe, and to go home and schedule an appointment with neurology, which was in about two or three weeks.
Dr. Lowenstein:
I’m thinking so far a lot of people are identifying with all of this, which is kind of why I wanted you to go through. I think a lot of people have this. I would imagine when you had these things happening, you were kind of both scared, puzzled and additionally just kind of feeling alone. This is not something that when it happens to you, you’re thinking, “Oh, I’m sneezing. I’ve seen other people sneeze. I know that this is okay.” I think that a lot of people that I see have these histories and these experiences, and they feel like nobody knows what they’re talking about. That’s kind of why I’m trying to get you to talk about all of these different things, so patients can understand.
Dr. Lowenstein:
I have patients all the time that say, “I’m dizzy. What does it mean?” I tell them that that’s not an infrequent kind of thing to not be able to hold your balance. Anyway, I’m interrupting and I’m going to stop there. So, you keep going.
Christine:
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 and squatting, walking. I was in so much pain, I just needed some relief. He prescribed some antidepressants to see if that would help with pain. They don’t. They didn’t for me. He gave me Amitriptyline to start with, but I had previously tried to take that for some nerve pain in my arm and it really didn’t help, and the side effects were so bad that it wasn’t really a good option for me. So, I just waited.
Christine:
I was scared. Nobody knew in my family what was going on with me. 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. Probably around October I scheduled my first lumbar puncture. Here’s where it gets a little odd for me, maybe unique, that that lumbar puncture resulted in a semi-high spinal fluid pressure. They started me on Diamox, and they thought I had too much cerebral spinal fluid. The Diamox didn’t work. He told me to lose weight. I was a little overweight, but not morbidly obese by any means. That went on. I had lumbar punctures to drain spinal fluid, and massive doses of Diamox and seeing neuro ophthalmologists to make sure my vision wasn’t impaired, all side effects from this intercranial hypertension, which ended up I really didn’t have.
Christine:
I had a lumbar puncture June 30, 2017, and it ended up with a spinal leak and no relief and a normal pressure. So clearly now the neurologist was stumped. They no longer now had a cause for my headache, and nobody can explain why I got relief from the lumbar punctures, why my pressure was only at the top range of normal… So, that continued for two years. I was about mostly normal. I could go to work. I could function for the most part, but every six to eight weeks I’d have to go and get my spinal fluid drained. That was a whole weird thing for two years. In the summer of 2017, I really started doing research because I ended up on disability. I could no longer work full time. I really couldn’t run. I was really having what was the beginning of a very difficult time living and functioning as a human, where I was a very high functioning and high performant person before that.
Christine:
I started seeing different doctors. I went to PT. They did more MRIs of the rest of my spine. They did more MRIs of my brain, of my neck, all the different treatments that they were giving to me, more steroid injections. Those helped for a couple of weeks, but only with some of the headache pain and not the other things. They did Fossette injections in six areas of my neck. That helped the first time, but didn’t help the second time. It was incredibly painful. I took two different types of anti-seizure medications, a couple of different other antidepressants, none of which helped me and provided any relief. The side effects were so severed that I couldn’t take them anymore. I was nauseous all the time. This is where I really was bedridden.
Christine:
I ended up on long term disability, which I don’t think anybody in their life really wants to be on. It’s very scary. It’s quite depressing to not be able to function and have to go on that, and rely on it. I was very happy that I had that option as a benefit, but I didn’t really ever want to use it. Let’s see. 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. She works with neurosurgeons trying to figure why my walking was such an issue. I had seen a couple of 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.
Christine:
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. He really told me, he said, “I can’t find anything structurally wrong with you.” I said, “What do I do?” He said, “You need to start from the beginning again, and wipe everything off your diagnosis list and restart your symptoms, and go find somebody to start fresh.” At the time I had probably 20 different diagnoses.
Dr. Lowenstein:
That’s also super unfortunate and very common. We’ve got a lot of patients with that.
Christine:
And it was frustrating because if you look at the symptom list and the diagnosis, lots of overlaps, and so they weren’t real true diagnosis where they much more symptoms like tinnitus or nausea, or the gait issues and things like that. And no real cause. The pain doctors that I had been seeing really couldn’t help me anymore. I started looking up headache pain maps, and I found one. It looked exactly like mine. It was in my neck. It was 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. 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.”
Christine:
Then when I had flares, it would really wrap around my head and go much farther. So we started the nerve blocks. Got relief-
Dr. Lowenstein:
Christine, let me just ask you before… Just going back. You just talked about you had lots of different diagnoses. Had you been diagnosed with migraine?
Christine:
No.
Dr. Lowenstein:
Okay. Others?
Christine:
That wasn’t one of them.
Dr. Lowenstein:
Other types of headaches? Or was it all just variable-
Christine:
It was variable
Dr. Lowenstein:
Neurologic issues?
Christine:
Yeah, it was all very generic. I think they did… I can’t remember the name of it. It was the constant headache, or persistent headache-
Dr. Lowenstein:
Daily persistent headache.
Christine:
Daily persistent headache, yes.
Dr. Lowenstein:
Yeah.
Christine:
But nothing else in terms of a headache.
Dr. Lowenstein:
Okay.
Christine:
Just very generic things. That was probably the second headache diagnosis I got, was the ON, but it fit more. They had given me other medications to rule out the other types of headaches that would… What is it? Hemi-
Dr. Lowenstein:
Hemiplegic migraine.
Christine:
Yeah. They had given me some of those medications to kind of rule those things out, but they were really stumped and I wasn’t really responding well to most of the treatment they were providing. The nerve blocks worked for a couple of weeks at a time, which was a good relief. After about three times of that, they said, “That’s not the right treatment for you. Try something different.” They didn’t have anything else to offer other than Fossette injections, which I said really weren’t very helpful. This went on, and I started seeing lots of doctors. I just started scheduling with every doctor, different type of doctor that I could until I could get some answers.
Christine:
I had Kaiser. They sent me to their Pain Management Clinic. I got to see a pain doctor, a psychologist. They have a nurse, and then a PT. I think it’s a well over 16 week program. That doctor really advocated for me, so he did some additional testing. He got me to the University Hospital in Denver, and to a headache specialist there. He thought of some other ideas with [inaudible 00:16:53] and some other stability issues in the neck. Then he got me to the Chief Neurosurgeon at the University. Between the two of them, they walked… By then, I had one every testing and imaging imaginable, including upright MRIs and cervical spine X-rays, and everything else. The neurosurgeon really took a lot of time to walk through every single image, and why my nerve roots weren’t a problem, and really sold me on there was really nothing wrong with my neck, because that’s really what I thought was wrong with me.
Christine:
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:
I got to say, I think you got really, 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. So many of my patients have had previous C-spine surgery because they didn’t have neurosurgeons like you did, who said operating on your spine is not the first line. So again, really kudos to the surgeons that you saw. That was very fortunate for you.
Christine:
It’s probably worth noting, I had all of those small abnormalities that you would have. I was 40 when I saw that neurosurgeon. I was 38 when this started. 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:
But again, a lot of surgeons take that opportunity to operate.
Christine:
Yeah, thank goodness.
Dr. Lowenstein:
So really, that’s great that you didn’t have to go through that.
Christine:
That was January 2019. At that point, I had been doing the online research to figure out about decompression surgery. Really, my next step after seeing him was to contact somebody like you. I didn’t have any other options. I didn’t have any other doctors. I did ask the neurosurgeon about decompression surgery. He actually indicated that he had done it a couple of times, but he didn’t really get good results, and that that wasn’t really his specialty. So, that kind of reinforced that I needed to go find the right surgeon and the right person to help me. I started doing research on plastic surgeons that did decompression surgery. I found around five. One was on the east coast, and that was kind of too far for me. Some his patients, I didn’t really love the reviews.
Christine:
I found one in Texas, but I had a really difficult time connecting with that doctor. One up in Northern California, a really respected group in Sacramento. I didn’t really want to go to San Francisco because it’s just difficult to get around. Then I found you. It was great that you come to Denver. That was really an important thing for me. It was difficult for me to travel. So, I was very happy to do my consultation with you here in Denver. It made it so much easier. It was a big part of why I chose you, and your reputation, and all the care that you were being able to provide. 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:
I remember the first time we met very well. Literally, you were holding onto the couch, and holding onto the wall. You were in a whole other distress. I got to say, I like to usually get involved in these conversations, but you are just doing a great job of explaining a lot, which again, my goal is to get patients who feel like they are unique, and again everybody’s unique and I’m not trying to make anybody less special, but sometimes it’s good to know that there are other people like you. You’re doing a great job of talking about things that I hear from patients all the time. I guess the next thing is, 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 as far as our consultation, and how things went from there?
Christine:
Yeah, I’d be happy to. The first time I saw you, I’m pretty sure I was holding my breath. I know I was really nervous. This was like my last hope. If you told me you couldn’t help me, I’m sure I would have continued to find other avenues. I was really 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 me, I was very, very nervous. I think you relaxed me a little bit. You did your nerve blocking one at a time. I won’t like that it hurts a little bit, but in a different way than the constant headache.
Dr. Lowenstein:
Yeah.
Christine:
You did one injection at a time, and took the time to hear about all of the other things 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-
Dr. Lowenstein:
It was four.
Christine:
Yeah, I remember that one nerve. It wasn’t quite where we thought it was. By the end of the consultation the whole back of my head was numb, and I had no pain left. 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. That was the consultation. I think I had surgery exactly one month later, March 19th. 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 probably during the day. I 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:
I’m going to inject myself here.
Christine:
Sure.
Dr. Lowenstein:
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. A lot of people come from distance to see us, so we have kind of protocols. Right now as we’re recording this, we’re in a world of COVID right now, which has made all of this much, 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. I’ve got patients from Europe and Canada and whatnot, that are kind of waiting for things to get better before they can come.
Dr. Lowenstein:
The point of what I’m trying to say is, is while 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 really done well with staff who doesn’t really understand what we’re doing. So, when Christine says that she flew into Santa Barbara, stayed at a local hotel, is that right Christine?
Christine:
I did. Right down the street, maybe two blocks.
Dr. Lowenstein:
All right, right down the street, yeah. Okay, so I just wanted to clarify that. We did your surgery on a Thursday?
Christine:
Tuesday.
Dr. Lowenstein:
Tuesday. On a Tuesday, okay.
Christine:
It was a Tuesday.
Dr. Lowenstein:
Then you want to talk about how that was?
Christine:
Sure. I 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. It was like a little strip up the middle, so-
Dr. Lowenstein:
Yeah, I didn’t shave the whole back of your head.
Christine:
It wasn’t the whole back of my head. It was just a strip up the middle.
Dr. Lowenstein:
This is a strip in the middle, and then I put my initials, and then you also wanted something like the logo of the Denver Nuggets, so I put some of that on. No, I’m just kidding. It was just a strip on the back of your head that I shaved.
Christine:
That wasn’t a big deal. You got me ready for surgery, and your anesthesiologist came in and started my IV, and all that preop stuff. I remember him giving me some anti-nausea medication. 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 knew I was waking up.
Dr. Lowenstein:
That’s his job. I’m glad… That’s what you should remember, so that’s good.
Christine:
He did it well. I remember when I woke up, I think you were there right away. You wanted to know if I could walk. That was how I woke up, you asking me if I could walk. I think I told you I had just woken up and I needed to try.
Dr. Lowenstein:
I’m an anxious guy. I like to make sure that we’re helping people immediately. So, all right. Fair enough.
Christine:
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. 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 postoperative pain that I may have felt if it wasn’t numb. Your team got me up and emulating, and I remember I was able to walk again. I went back to the hotel. I was not allowed to walk. He wouldn’t let me walk down the street to the hotel, so we caught a ride and went back to the hotel.
Christine:
At that point, I know I remember I felt 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. I got up and my husband said, “We need to eat.” So, we were walking down the stairs at the hotel to the market right across the street. Chad said, “You’re not holding on.” Chad is my husband. I said, “Oh, you’re right.” I had some 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. 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, really good even though I had just had surgery for I think four and a half hours.
Christine:
I don’t know if you want to interject?
Dr. Lowenstein:
Yeah, a couple of things. You know it’s not that you can’t throw up whatever you do. I don’t remember saying that. I may have said that, but that’s also may just how you remember it. We give you medication to try and-
Christine:
Not throw up.
Dr. Lowenstein:
So you don’t throw up. When you throw up, you increase your blood pressure. So, whenever operating in the head and neck, if we can avoid people throwing up, we do because we don’t want to… I mean, it’s not a pleasant thing for the patient in the first place, but we also don’t want you to increase your blood pressure and whatnot in and around your incision. When we do the surgery, I put a bunch of local anesthesia around the incisions itself so that you’re hopefully not in a whole lot of pain afterwards. I love this story about you not holding on. I actually hadn’t heard this.
Christine:
You may not know the next part either. 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. 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. We ran into one of your staff at the market.
Dr. Lowenstein:
Oh, I don’t know about this. Okay.
Christine:
He said, “What are you doing?” 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. 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:
This is just a little shout out to McConnell’s Market. That’s what it’s called. It’s a great spot.
Christine:
It was great. It was great. It was perfect. We ate a little bit and then we went back to the hotel, and I’m pretty sure I took some pain medication and slept. I did bring my pillow. I brought my favorite little blanket as well, so that I could be comfortable and just have a couple of things from home. 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. That was Tuesday. I think I saw you Wednesday at some point so you could check the incision and things, and see how I was doing.
Dr. Lowenstein:
That sounds right.
Christine:
I think I saw you Friday morning, and then we Uber’d to In-And-Out. I had a cheeseburger. Then to the airport.
Dr. Lowenstein:
Let me tell you a really funny story. This is all great, but I’m going to tell you a very funny story. This is 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. I’m actually from Washington, DC, and there was a meeting in Washington, DC. So, we went to this place called Citronelle, which it’s no longer there, but it was a great restaurant. 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.
Dr. Lowenstein:
So, we’re just talking to him, and it turns out that he had previously been here in Santa Barbara to try and open a branch of this restaurant many, many years before. This is so totally irrelevant to your story. He was telling us about being in Santa Barbara and trying to train people for the restaurant here. So, I asked him, I said, “Listen, just I’m curious, you’ve been to Santa Barbara. What do you think the best restaurant/the best food in Santa Barbara is?” What did he say?
Christine:
In-And-Out.
Dr. Lowenstein:
In-And-Out Burger. So, there you go. All right, that’s my little caveat there. Okay, so you went to In-And-Out Burger and-
Christine:
We went to In-And-Out, and then we went to the airport.
Dr. Lowenstein:
Keep going.
Christine:
Yep, so we went to the airport. I think we had, I don’t know, a 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. 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. Mostly, it was just Tylenol and maybe some Advil, but I felt really good. So, traveling really wasn’t a problem. I had my husband to carry my backpack and purse, and luggage because that was a big no-no.
Dr. Lowenstein:
Right. I don’t like people carrying… Yeah, doing that kind of stuff right after surgery.
Christine:
We got home. That was Friday. I think after that, I went for some walks during the day, maybe a mile/a couple of miles to get out 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. I felt so good. I needed to make sure that I didn’t overdo it. So, I had to make sure I took my nap, I rested, I had some good food, and wasn’t going out running. But walking seemed to be really good. It was spring/summer, so it was beautiful outside. That was my recovery. I went back to work six weeks later. I think I went-
Dr. Lowenstein:
Didn’t you get a new job?
Christine:
That was later. That was after the second surgery. I remember I went back after six weeks. That was what was authorized with the disability company. I did go back part-time. I think it’s important for everybody to remember, being in so much pain and having so many bizarre symptoms and for such long periods of time, your body really needs to recover. So, I wanted to make sure that I was recovered, because there was no way I wanted to go through the last four years again. By this point, it was almost four years. So, I took the six weeks off. I recovered. I went back part-time. I can’t remember how long, maybe a month, and part-time was about I think 15-20 hours a week, to make sure that I wasn’t overdoing it, because I was still tired. My body was still trying to heal.
Christine:
Then I do remember I know I saw you probably every month for the next four or five months. I remember at one point my headache did come back, and you did give me a couple of injections of steroids, I think.
Dr. Lowenstein:
No, it was [crosstalk 00:36:07]-
Christine:
Maybe just Lidocaine.
Dr. Lowenstein:
It was just Lidocaine.
Christine:
Lidocaine. 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. That did the trick.
Dr. Lowenstein:
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 longterm outcome is. I think this is very important for people to understand that.
Christine:
Mm-hmm (affirmative).
Dr. Lowenstein:
You did have some headache after surgery. That’s normal.
Christine:
I did. It certainly was not as bad as before, and it was really… Mine, I think it was on the right side. So, you had done the injections and the pain went away right away. I don’t remember ever coming back that way again.
Dr. Lowenstein:
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. 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:
Mm-hmm (affirmative), yes.
Dr. Lowenstein:
Lesser occipital nerve [crosstalk 00:37:14], right?
Christine:
I remember you cut the third and the lessers.
Dr. Lowenstein:
Yeah.
Christine:
And you decompressed the greater.
Dr. Lowenstein:
So this is all occipital surgery. Okay, so go on.
Christine:
At that point, I ear pain, really, really bad ear pain, especially in my right ear. That 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. I remember you asking me, “If there’s one thing you can do to help me, what would it be?” I said, “Just cut that nerve. Just cut it out. I don’t need it anymore.” I just needed the ear pain taken away.
Dr. Lowenstein:
So the great auricular nerve… Yeah, that’s not a common problem that you had with that. A lot of times people complain of ear pain and we can take care of the lesser occipital nerve, and that helps things. 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. The great auricular nerve is a more superficial nerve, and it comes down below the ear. It’s not something that’s 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.
Dr. Lowenstein:
The great auricular nerve is actually a nerve that we as plastic surgeons, when we’re learning face lifts, we learn to stay away from this nerve because if you cut it accidentally, your ear goes numb. When you don’t have a problem with your ear, and you get a face lift, and you wake up with a numb ear, you’re often not very happy. So we as plastic surgeons have gotten pretty good at staying away from that. But in your case, I thought it was a good idea to go and find it and like you just said, and cut it. So, I guess that was round two. That was the next surgery that we did, right?
Christine:
That was round two. That was July. The first one was mid-March, and then Chad and I flew out again. I remember this one was tricky because you did some nerve blocks the day before surgery. We really weren’t getting it. Maybe it was the day of surgery, but I remember we had a hard time figuring out right where that nerve was to make that pain go away. So, I had surgery again. It was a much shorter surgery. I remember-
Dr. Lowenstein:
Yeah, it’s a bigger incision, but a smaller surgery, right?
Christine:
It was a bigger incision. I did ask you not to cut behind my ear. I was happier with the larger incision on my neck. I guess personal preference. I don’t think I wanted stitches right behind my ear. So, I talked you into that. You can’t see it from the front, so it was okay with me. Actually, nobody ever sees it. My hair either covers it, but it’s not… The incision, although it’s long, it’s very, very thin and it’s not noticeable. Anyway, so-
Dr. Lowenstein:
Just to again, just to revisit this, the surgery that… The scars from your first surgery, can anybody see those scars?
Christine:
Only if I point them out and show them.
Dr. Lowenstein:
Yeah, and most of it is back in your hair, right?
Christine:
Yeah, it’d been going in my hair.
Dr. Lowenstein:
And it’s growing back since we shaved it, right?
Christine:
Yep.
Dr. Lowenstein:
When we do this surgery, and it’s a very specialized circumstance, but this surgery kind of… The ear that we have to address, the nerve that feeds the ear. Anyway, I’m sorry. Once again, [crosstalk 00:41:13] go on. Stop interrupting.
Christine:
I remember waking you and you said, “Can you feel your ears?” This is my perspective. 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.
Dr. Lowenstein:
Yeah.
Christine:
I remember you couldn’t really find the big trunk on the left side, so you had cut maybe some of the smaller branches that come out.
Dr. Lowenstein:
Right, the smaller branches.
Christine:
I remember seeing you Friday, and there was some big parade in Santa Barbara. I was feeling amazing again. My ear didn’t hurt. Yay. So, I was able to go home shortly after that. I remember I saw you maybe one or two more times. I think two more times after that. I think we were running out of reasons to see each other, because my pain was gone and my incisions were healed. That surgery, I stayed home I think for four weeks. I really didn’t need a full six weeks. Then I ended up going back full-time. That was the first time in almost probably two years that I was able to go back 40 hours a week.
Christine:
I think the week I went back is when I gave my notice, and I switched companies because I started my new job in mid-September. I actually had… Yeah, it was amazing because it gave me the opportunity to go do some new things that I really wanted to do in my career.
Dr. Lowenstein:
Can you say who you work for? Or is that allowed? Or is that a security issue?
Christine:
No, it’s not a security thing. I work for Ball Aerospace right now. We moved a few weeks after I had surgery, so I couldn’t do a lot of the lifting or things like that. I had a lot of help moving with my family and things like that. We were able to move. I started a new job. The kids started new schools, probably 35-40 minutes away from where we lived. It was much closer to my husband’s work as well in Boulder. 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:
So now can you also chat a little bit about your physical activity?
Christine:
Sure.
Dr. Lowenstein:
Again, with restrictions of COVID and activities of raising children and things like that. I think this is important, because I think people lose sight of what is possible when you’re just having problems with your balance and problems with the pain and whatnot.
Christine:
Somebody had asked me was I nervous after I had the surgery, to be active again. The absolute honest truth is I was probably for about a good year. I’m almost two years out now from when I had my first surgery. So I was quite a bit nervous. That October, I did a 5K. I was starting to try to run and that was probably a little too soon, a little too much, but I walked it with my daughter. It was the Eerie-Erie, and it was right at the end of October for Halloween. I walked 3.1 miles. I would have never been able to do that without the surgery. That was triumph number one. I was really a little upset I couldn’t run, but my legs just didn’t want to run at that point.
Christine:
I needed to do a little bit more conditioning and weight training to get my body kind of back into doing that. That was the first four months, I walked a 5K. Then COVID happened in March, and so all the races that I had signed up for last year got canceled. I said, “Okay, well I can go hiking.” So, I’ve been on six mile hikes up in the Rocky Mountains. It was literally straight uphill and straight downhill. I’m not sure what I was thinking on some of those, but I’ve been able to-
Dr. Lowenstein:
No railings though.
Christine:
No railings. No, in fact the last one that I did, I had to climb up some rocks and shimmy down. 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. There were some pretty bizarre places on this trail. We don’t pick easy ones. Like, “Oh that’s really interesting. That’s the hardest one? Let’s go do that one.”
Dr. Lowenstein:
There’s a lot around where you are.
Christine:
There are.
Dr. Lowenstein:
So you’ve got a lot of good options around Denver and Boulder and such.
Christine:
Where I’m not running road races right now because of COVID, I’m going out and enjoying the outdoors. I can spot my daughter in her gymnastics in our basement with our little mock gym, and things like that. So, I couldn’t do any of those things before. I’m not really scared anymore about disrupting all the things that you fixed in the back of my head, but there is that thought. 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 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 dead lifts. I was probably doing 150 before, to 200 pounds on dead lifts before. I can go do things again. It’s in moderation.
Dr. Lowenstein:
With conditioning, it needs to… I mean, this is a… [crosstalk 00:47:35] whenever we do any kinds of surgery. I had a patient once who got upset with me because it’s not… She didn’t even have migraine surgery or headache surgery, she had something else. She asked afterwards, I say a month, “After a month you can start to gently start activity again, but you got to start slow.”
Christine:
Yep.
Dr. Lowenstein:
She said, “Before surgery, I could do 300 sit ups, and now I can only do 75.” I’m sitting there going, “You shouldn’t be doing 75 sit ups three days after I release you. You should do five, and then 10, and then-” after you take a month off for surgery for any reason, conditioning is a big deal.
Christine:
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 that I can go run. I know that I can go do some conditioning and weight lifting within moderation. Every now and again I’ll get a headache from stress at work, and I can take a couple Tylenol and a few Advil and it goes away. I couldn’t do that before.
Dr. Lowenstein:
That’s awesome.
Christine:
100% headache-free I think is an unrealistic goal, because I think everybody even without this condition will get a headache, a tension headache, or a regular headache, or whatever.
Dr. Lowenstein:
Normal headaches are normal. If I can everybody just back to normal headaches, that’s a goal.
Christine:
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. 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. She’s 11 now in sixth grade. She loves having her mom back. I’m sure my son enjoys it too when he’s not playing his video games. 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. My husband loves having me back because I can do stuff around the house with him now. It’s wonderful.
Dr. Lowenstein:
That’s great. Well, yeah that’s all you can ever want to hear as a surgeon, to have been able to be involved in something like that. I really am very appreciative of your comfort in sharing all of this with people. I certainly hope that it gets some hope to people who have situations like you do. I think that that hopelessness and isolation, or feeling isolated, and like there’s nowhere to look for help is one of the worst parts of migraines and occipital neuralgia, and these kinds of headache syndromes. It sounds from my standpoint, 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.
Dr. Lowenstein:
You had a good diagnosis. I think a lot of people who have pain in the back of their head and potentially again on the side and their ears and whatnot, are getting all different kind of headache diagnoses, migraine diagnoses. What we find is that these nerves in the back of the head and some in the front, that your case didn’t have issues with nerves in the front of the head, but we treat everybody individually and a lot of people have neuralgias of the occipital nerves or the super orbital nerves above the eyes and things like that. It’s just finding somebody who can understand what’s going on can be a really difficult, difficult thing when you’re getting all of this different information and nobody’s really helping.
Christine:
No, and I saw a lot of doctors. A lot, like over 20 in a two to three year period of time. I had such odd symptoms, they didn’t put them together. They didn’t think that they could be connected. People out there might have diagnosis with functional illness. I had one doctor who told me if I learned how to breathe, I’d be able to walk again and that 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 my symptoms started at the same time. I didn’t want to be on disability. I wanted my life back. 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:
That’s when people tend to stumble into my office.
Christine:
Mm-hmm (affirmative).
Dr. Lowenstein:
It’s the people who have not been able to find help with other physicians. I hear all the time people say that they’ve been to 20 doctors and “Nobody can help me,” and are very skeptical about seeing me as well because they don’t think that I can… I can’t help everybody, but honestly the majority of the people that we see, we can help. So that is a fortunate thing for us. Again, I really, really, and lots more reallys, really appreciate you sharing your story with us, Christine. I wish you ongoing best. Hopefully all this COVID stuff will get better soon, and we can all go back to enjoying our lives to the best that we can.
Christine:
Yes, well thank you for having me. I hope this helps people relate a little bit.
Dr. Lowenstein:
You’ve done a fantastic job of explaining a lot. I think this is going to help a lot of people, and I really, really appreciate it.
Christine:
You are so welcome. Thank you for helping us get back to normal.
Dr. Lowenstein:
Oh, well that’s absolutely my pleasure. You’ve got a great family, and it’s an absolute pleasure to work with.
Christine:
Thank you.
Dr. Lowenstein:
All right, well again, thanks to our listeners for tuning in. I hope this was helpful. Please if you get a moment, to… I don’t even remember how this works. You got to like a podcast, or I think you subscribe. Again, most of my world is spent actually operating on people as opposed to being a professional podcaster. Do what everybody else asks you to do when you listen to podcasts. Please feel free to get ahold 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, so we really try to keep the website as educational as possible. I really encourage people to check things out there. Again, thanks to Christine. Until next time, again thanks for listening.
Dr. Lowenstein:
Hey everybody, this is Dr. Lowenstein once again. 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 then more listeners will be able to find us, and the more help and information we’ll be able to provide 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 or see on YouTube, or read anywhere on the Internet.
Dr. Lowenstein:
I as a physician don’t necessarily endorse the opinions or practices of my guests, and 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 and 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.
