In the 2.5 years that I've been writing this blog (woah), three months has got to be the longest I've gone without an update. Where do I even begin?
Before I get in to my personal update, I want to share this community forum that I just created. Over the past few years, and in more so in the last few months, I've had so many chronic-headache sufferers from all over the world (mostly with upper cervical dysfunction) reach out to me after stumbling across this blog in a search for their own answers. It's actually pretty mind-blowing to realize just how many people are out there on such parallel journeys. And unlike so many other injuries or health conditions, there is no set roadmap to follow here. One doctor, as brilliant as he or she may be, likely doesn't have all the puzzle pieces to put together for you. This really is a patient-driven process; a search for the right answers, but also the right questions. So, my goal with the forum is to create a positive space that we can use to help each other by sharing any and all personal learnings, treatment options, and outcomes. And if nothing else, to just let each other know that we're not alone in trying to figure it all out. That last piece might be the most powerful.
Now for my update. The positives, to start...
I've continued to heal really well from surgery. Here's a picture of what my scars look like (5.5 months post-op). Side note: My reverse mullet is also growing out quite nicely. I don't think I've been so reliant on bobby pins since jr. prom.
Although my scalp still feels more sensitive on one side, it's no longer numb.
I've regained 100% of my flexion/extension and WAY more rotation in my neck than I was expecting. I have about 90 degrees of rotation to the left and 70 degrees to the right (90 is "normal").
I feel strong. Like probably as strong as I felt before surgery. I'm back in the gym, lifting a few times a week and not much is really even modified anymore. Overheard pulling (mostly pull-ups) seems to flare me up quite a bit, so that's going to take some work re-teaching my body and brain, but other than that, I've been able to start really pushing myself again. And though I can see how it may seem counterintuitive from the outside in, higher intensity exercise has always been and continues to be my best medicine.
There's a huge mental component to that, for sure. When you're stuck in chronic pain, it's easy to feel a loss of control over your body and mind. Even when I'm going through a seemingly ordinary day, my headache is always calling the shots. It's like a filter through which every waking moment and interaction with the world around me has to go through, and that's really f-ing exhausting (probably also why I have to take a solid 2 hour nap in the afternoon). But, somehow - when I'm in the gym, even on tough days, it's like I'm able to take control of the steering wheel - even if for just an hour. And the more I understand about about chronic pain as a nervous system condition (I'll get to that below), the more I can appreciate HOW exercise helps to relax my nervous system.
And now for the the stuff that still needs some work:
In case that wasn't obvious by now... my headache. Yes, I still have it. Very much so. The last two months haven't been easy for me. When I posted back in February, I had been experiencing some better days, which was obviously encouraging. Three months later, I'm no where close to where I had hoped I would be (pain-wise at least). I'll sporadically have some decreased pain days (sometimes a few days strung together), but haven't experienced one of those in probably about a month now. There's no way around it...it's frustrating as hell. It's discouraging, and on some days, downright panic-inducing to feel like I've done and continue to do all of the right things and still fall asleep every night and wake up every day morning in unrelenting pain.
But I know that I can't let myself get sucked into a spiral of stress and negativity because that'll only fuel the fire that I'm trying so hard to put out. Instead, I make a conscious decision every day to forge ahead, continue searching for answers, and refuse to accept that this headache is sticking around for the long-haul. I mean, come on. I've got shit to do. A lot easier said than done, of course, and that's where Craig continues to be my strongest source of hope and optimism. I know it's hard for him to watch me suffer every day and feel like he can't do more to help me, but I also don't think he realizes just how much he already does. As I know anyone on this journey can appreciate, intractable and chronic pain (especially pain that's "invisible" from the outside), can be incredibly isolating. And unless you're physically living it day in and day out, there's no way to truly understand the experience. But, sometimes you don't need someone to fully understand it - you just need to feel a sense of unwavering love and support. I know how fortunate I am to have that, but also recognize that not everyone has the same support system and resources at their disposal, and I'm hoping that's one of the ways that the FORUM can be helpful.
So, what's next for me?
I'll be coming up on my 6 month post-op mark soon. If I was pain-free (or at least right on track with pain reduction), I assume it would have been okay to do another virtual check-in with Dr. Franck like I did at the 3 month mark. But given that I'm not quite there, he wants me to travel back to FL for a another work-up (CT scan, MRI, X-Ray) to see if anything else shows up that could explain what's going on. That should be happening at some point in the next few weeks.
I continue to work with my PT, Jeff Beran, every week. Despite my pain, Jeff has been and continues to be a huge part of my recovery - and not just because of the work we do to restore function back into my system, improve tissue quality, and relearn proper movement mechanics, but because he is 100% invested in the process.
In the next few weeks, I should have more information about a few other potential treatments to pursue. The first is TMS, or transcranial magnetic stimulation, which uses a highly focused pulsed magnetic field, similar in type and strength to those produced by an MRI machine, to stimulate cortical neurons. If that sounds familiar, it's because I wrote about it back in the fall of 2014, when my Mayo neurologist, Dr. Dodick, lent me a handheld single pulsed TMS device that he was using in a study on migraines and cluster headaches (a study I didn't qualify to participate in, but he was kind enough to let me take it home and try it). Unfortunately, the device didn't help my headache, but single pulsed TMS is much different than that handheld device - instead of getting a single pulse, you're getting up to something like 50 pulses per second. Patients usually undergo 37 minute treatments, 5 days per week, for up to 4-6 weeks.
(Here's a video clip from 2014 when I tried the single pulse TMS.)
Historically, TMS therapy has been used in the treatment of depression (which is what it's currently approved for) but looks like it could be a promising therapy for the treatment of pain too, given that certain pain conditions involve very similar brain pathways as depression (ex: centralized pain). When we reached out to a local provider here in town, the doctor told us that he's attending a national convention of TMS providers in mid May and wants to gain some insight on pain protocols used and potential outcomes before we proceed with discussing treatment options. So I should know more about that soon. In the meantime, here's some more info on TMS...
The second thing on the horizon is a pain doctor based in San Francisco, who we were turned on to by Dr. Sugarman, one of Craig's colleagues who is a neuropsychologist/director of neuroscience at EXOS. Dr. Sugarman told us that Dr. Moskowitz is on the "bleeding edge" of chronic pain science through his work with neuroplasticity. I know I've talked about this before, but neuroplasticity is really the constant process by which the brain changes. It undergoes change in response to our senses, thoughts, beliefs, memories, emotions, and movement, but also to injuries, disease, trauma, stress, and pain. And when I use the word "change," it's not referring to some abstract concept, but actual PHYSICAL changes in the anatomy of the brain. Here's an excerpt from a workbook that I ordered from Dr. Moskowitz' website, www.neuroplastix.com...
"In persistant pain our brains change due to the constant pain signaling loop between the brain and the body. The changes in the brain occur in numerous ways. We have identified sixteen places in the brain where pain signaling is received. Nine of these places are in the conscious part of the brain, the cerebral cortex. In these nine places, only 5% of of the nerve cells are normally dedicated to pain processing, but in chronic pain this expands to 15-25% of the cells. To accomplish this, pain signaling cells use the three principles of neuroplasticity. Essentially the brain learns pain. As with any type of learning, the process of repetition reinforces the strengthening of brain pathways, causing a genuine anatomical change."
Basically, what that means is that I'm really good at being in pain. Like if having a headache was an olympic sport, I'd have a f-ing gold medal. But it also means that the same mechanisms of neuroplasticity that the brain learn pain can be exploited to make the brain unlearn pain, and that's the goal of Dr. Moskowitz work. We reached out to him and should know more very soon about when we'll be able to go out to SF for a consult.
The truth is, it's taken me some time to fully embrace this notion that my brain could be processing very real pain even though it's not in danger any more, but the more I understand about the science of pain, the more sense it makes. The purpose of pain is, after all, to serve as a self-protective mechanism against danger. But when the pain gates in my brain are stuck open, that self-protective mechanism is going haywire. Even though my cervical spine instability has been resolved and my brainstem is no longer compressed, the pain persists.
A few other things I've been trying in an effort to attack this centralized pain:
After taking over a year long break from it, I've started experimenting a little bit with a few new strains of marijuana. This process in itself is tricky because it's comes down to trial and error. Also, I really hate feeling any of kind of high and am super prone to sleepiness - and not in a relaxing way, like in a Will-Ferrel-tranquilizer-gun-to-the-jugular way. So I can really only use my vaporizer right before bed, and usually feel wiped out the next morning, which, on top of my headache, is tough.
I'm also in the process of experimenting with a ketogenic diet, which is basically a high-fat, moderate protein, low carbohydrate approach to eating; a combination that changes the way energy is used in the body by relying less on glucose and more on fat for energy. I'd read some fascinating research in the past about the ketogenic diet in the context of cancer treatments and in the treatment of neurodegenerative diseases like Parkinsons, Alzheimers and dementia, but it wasn't until recently, when Craig's mom (who suffers from dementia) had an episode of jaw-dropping lucidity following several days of not being able to eat (which we hypothesized might be due to her body going into a ketogenic state), that I accidentally stumbled across some articles about the ketogenic diet as a potential treatment for chronic pain.
Other than my transition from a plant-based vegan diet to a plant-based paleo-ish diet, I really haven't made any substantial changes to my nutrition over the last few years. Eating an organic, whole-foods, nutrient-dense, refined-carbohydrate-free, anti-inflammatory diet has always been super important to me, long before my bike accident and so I've never really felt like there was much more room for improvement in the way that I ate. Who knows, maybe this little experiment will have absolutely no impact on my pain, but maybe it will, so how could I not at least give it a fair shot? Heck, if I thought that eating pencil erasers and tree bark might help my headache get better, I'd be asking for seconds at every meal.
So I'm really only a solid week into it, and am kind of learning as I go. Luckily, my baseline diet was already pretty high in fat and low(er) carb, so the adjustment has been very easy. The biggest change this past week has been cutting back on my intake of fruit and other starchy vegetables like sweet potatoes and upping my fat even more. I'll plan to get into this more in a separate post, where I'll cover the specifics of my day-to-day eating and supplementation and also how I'll be monitoring my body's ketone levels. I'll also plan to start a new thread in the forum for this topic, where I'll post any new findings/research that I come across.
Lastly, I'm trying to just be patient with myself. It takes a concerted effort every single day to find a balance between living my life in a way that I need to live it to be happy and fulfilled without creating circumstances that make my headache worse. I need to be active, I need to see friends, I need to feel some sense of adventure, I need to feel purpose. So, I work out early in the morning before my headache exhaustion stops me. I'll meet up with a friend for lunch and avoid making plans at night because I know that my ability to deal with my headache is at its lowest by dinnertime. I don't have a real "job" but focus on my energy on my environmental health blog or freelance writing when I'm feeling up to it. It's a fine line to walk. Some days I step over it, and that's when patience and self-compassion is most important.
So, that's where I'm at. This post was way too long. I promise I won't wait 3 months before the next!
