C1/C2 fusion & craniectomy: 1 year later + headache update

Today is the one year mark of my C1/C2 fusion and craniectomy and I figured I owed it to myself to sit down and write. It's not something I've felt like doing in recent months, despite how all-consuming my headache has been. Or maybe that's why. My enthusiasm to hash out the details of my day-to-day struggle can best be summed up by a phone conversation I had with my friend a few days ago. He asked how I was feeling and I answered, without skipping a beat, "not very good, so tell me about this girl you're dating...." I guess the heavier the weight of my pain has felt, the less energy I have to spend talking about it. Feeling it has been enough. More than enough.

I never want to sound like I'm complaining about my pain, or projecting some kind of woe-is-me negativity, because despite the challenge I've been dealt, I know how many reasons I have to be thankful. There isn't a single day that goes by that I don't think about how different my chronic pain could be if I didn't have the support system and resources that I do or how just how many exponentially worse problems and forms of suffering exist. And despite how I feel physically, I've become increasingly thankful that I had the surgery a year ago. After talking to even more doctors, I've gained a greater appreciation for just how severe (life-threatening, had I gotten into even just a minor car accident) my cervical instability was.

Even all the gratitude and perspective in the world doesn't change how draining my headache has been, though. Drained is probably the best word to describe how I've felt these last few months. I remember telling Craig not too long ago during one of my all-too-frequent (sometimes daily) panic-induced-holy-shit-is-my-head-going-to-hurt-forever-how-am-I-going-to-live-like-this-I-don't-think-I-can-live-like-this sob fests that as much pain as I've been in over the last 4.5-5 years, it's never felt so hard. Like my resilience was just running dry. My sheer capacity to "deal with it" shrinking by the day.

And  the more I would tell myself that I just can't allow my headache to dominate my life, the more it rose to the challenge. The decision for Craig and I to get engaged and start planning our wedding was a really big deal for me. It meant that no matter how hard things are, we have to create the lives we want together, full steam ahead, no matter what. And then in September, I found myself sitting next to him in a rental car in a downtown Spokane, WA parking lot after a day of travel had pushed my headache over the edge. I felt like I was going to pass out from the pain and I just completely unraveled, crying on this shoulder harder than I maybe ever have. This is not how meeting your wedding photographer is supposed to happen. I know what you're thinking...typical bridezilla! Hah.

Because my headache is 24-7, I'm used to falling asleep and waking up with it, but there've been more and more mornings when I've gotten out of bed and just been so physically overwhelmed by my pain levels that I can't help but feel like I don't even have a chance at the day. But I know how important it is, on those mornings especially, to do whatever I can to not feel defeated because hopeless is a really shitty place to be, and the deeper into you fall, the harder it is to climb out. So, I make it my goal every day to do whatever it is I can to maintain that resilience. I exercise. I spend time outside. First, a long walk with my pup and then time in the gym or out on my mountain bike. I eat well. I sleep well. And I try to stay as engaged as possible in the rest of life, but have to balance that with my reality, which is that sometimes a Saturday needs to be spent on the couch with an ice pack and previously made plans with friends need to be cancelled (or maybe never made in the first place). That last one is tough because even though I think the people closest to me do understand, I often end up feeling like a total flake incapable of following through with commitment.

Well, that about covers a lot of what occupies my mind lately. I hope it doesn't come across as whiny and pathetic, rather, just kind of the whole raw, unfiltered truth that isn't super fun to talk about or unload on people when they ask how you're doing. Now on to the medical find-a-SOLUTION stuff, which is still as important and active as it's always been.

First, an update from where I left off last time. I had stopped hyperbaric oxygen therapy and just finished a series of sphenopalatine nerve blocks targeting the sphenopalatine ganglion, which is a group of nerve cells that's linked to the trigeminal nerve. They obviously didn't help. We were thinking the next step may be an accessory nerve block, but after talking more about it, that wasn't something that the doctor (or we) were very comfortable pursuing. Next, I saw a new pain doctor, Dr. Carlson at AZ Pain Specialists. We decided that even though I had had medial branch nerve blocks done several years ago without success, it may be worth re-trying them now that my cervical instability and compressed spinal cord have been corrected.

So I went in for my first block, bilateral at C2-C5. This is a diagnostic procedure that's only meant to provide a few hours of relief. If it helps, the next step is usually a nerve ablation, where the nerve is actually burned to provide longer lasting pain reduction. I didn't feel any real change after the procedure, but woke up the next morning with a noticeable reduction. The doctor wanted to repeat the blocks to see if we could replicate that outcome, but unfortunately, I didn't have a similar result the second time around, which meant he didn't want to precede with the third round. The other treatment option that Dr. Carlson discussed with us, which having done some research on, is really not something I'm interested in pursuing is peripheral nerve stimulation. This consists of getting a small device implanted under your skin, which delivers low-level electrical impulses that interfere with the brain's perception of chronic nerve pain. At this point, I just can't fathom getting something else put inside my body, especially after learning about some of the side effects and associated risks (especially involving physical activity).

Here are the marks from my medial branch nerve blocks (marker where they inject the needle), starting at C2 and continuing through C5. You can also sort of see what my scar looks like a year later.

But on a somewhat similar note, I am re-trying a transcranial magnetic stimulation (TMS) device. This is something that I wrote about when I initially started using it just over two years ago. It uses a highly focused pulsed magnetic field, similar in type and strength to those produced by an MRI machine, to stimulate cortical neurons and effect neuroplasticity. Historically, it's been used (and pretty successfully) in the treatment of severe depression but is looking more and more promising as a pain management therapy too. My Mayo Clinic neurologist, Dr. Dodick, has been very involved in the research with TMS and migraines, so when I saw him a few weeks ago, he suggested that I give it another shot. When he leant me a device to try before, he was leading a study to help it get FDA approval, so I used it for just a little bit before giving it back. What they found in their research, though, was that the TMS can take up to 3 months of consistent daily use before having an effect on headaches and the results they saw were pretty profound. So the protocol I'm on right now is as follows:

Every morning, I give myself two "shocks" (see video below, which shows one). Then I wait fifteen minutes and do two more. At night, I repeat the same for a total of eight per day. The anticipatory expression on my face may suggest otherwise, but it doesn't hurt. Just feels like a little jolt.

As a special treat for those still reading, I saved the most optimistic part for last, which is my current physical therapy focus. I've always known about the dysfunction I have with my breathing (and have discussed it on here quite a bit). It seems like, if you're alive, you really should already have whole inhale-exhale thing nailed down, but it's not so simple (and even more so the case for people in chronic pain). Basically, the problem with my breathing mechanics is that I do a really poor job of breathing with my diaphragm and because my diaphragm doesn't do its job well, other accessory breathing muscles end up working in ways they're really not meant to work in.

There's no way to know if this is more a contributor to my pain or a result of my pain, but it's very likely a combination of both, and therefore very much worth addressing. This article, The Respiration Connection: How dysfunctional breathing might be a root cause of common upper body pain problems and injuries does a great job of explaining what's going on and how it could possibly be impacting my headache. It also could explain the chronic tightness I have in my scalenes, SCM, upper back, and pec minor.

"If it exists, the connection between dysfunctional breathing and pain is straightforward in principle: if the diaphragm doesn’t do its job well, muscles in the upper chest (pectoralis minor) and throat (sternocleidomastoid and scalenes) will try to help out.2 Unfortunately, these muscles aren’t built for routine respiration, and they get exhausted and tender (more on how this works below). If this occurs, it could trigger a cascade of uncomfortable consequences over time.

Right now, I'm trying to re-teach my body the correct way to breathe. Simple, but not so easy because your body gets really good at doing things the way it thinks it needs to do them. 

One reason that I'm so hopeful that these changes can help me is that I actually FELT some degree of HEADACHE RELIEF along with significantly improvement in overall neck tightness after a PT session last week just from working on this. The reduction in my headache only lasted a few hours, but that is a HUGE deal for me. Not only does it give me confidence that I'm on the right track (which counts for more than I can even communicate), but it confirms the intuition I've always felt in the connection between the "tightness" (that just doesn't change no matter how much it gets "worked on") and my headache.

Here's a short clip of one of the basic diaphragmatic breathing exercises. My PT, Jeff, is physically holding my ribcage down so that I'm forced into a better position for proper inhalation.

And here's a before picture (top) of my obvious rib flare compared to just a few days of practice (bottom) You can see the improvement just by looking at the change in angle of ribs. The plan is to keep making progress and hopefully start feeling some changes in my headache. Stay tuned!

an ER trip, two sphenopalatine nerve blocks, PT, some Rick Simpson Oil, and hyperbaric oxygen therapy

Someday, I'll have to actually stop writing this blog - and not because I'm too frustrated to sit in front of my computer and put one more ounce of energy into thinking about my headache - but because there simply won't be one to write about.

Someday...just not today.

It's been a really tough last few months for me, pain-wise. I'm not sure how else to sum it up, and that in itself is hard for me because I hate feeling like I'm complaining or stuck in a negative place more than anything else. As always, remaining optimistic and hopeful that my headache has an expiration date requires a daily (sometimes hourly) conscious effort. It's more exhausting than I know how to explain, and everyday I think about all of the things I want to (and plan to) put that mental energy into instead. But for now, that's how it needs to be spent.

Despite the ongoing challenge, though, there's been some amazingly positive reason for celebration. During our much-needed vacation back to New England, the one-of-a-kind human who's been by my side through every up and down over the last five years asked me to marry him (to which I of course said, hell yes). If there's one bright light that's come from my all of my pain, it's the unrelenting strength of the relationship that Craig and I have built. I know I've said this before, but it's worth repeating: As anyone who's on this journey can understand, chronic pain is so much more than physical discomfort. It becomes a state of ongoing mental agony, fear, frustration, panic, and isolation. But Craig makes sure I never, ever, ever, feel like I'm in it alone, and that is like a whole different level of love. For so long, getting married was something that we put on the "other side" of my headache. We'd get me out of pain first, and then the wedding. But then we both realized that we couldn't let my headache have more control over life than it already did. So now, I can look down at my beautiful ring and be reminded not only of how strong our love and commitment to each other is, but also that my pain will not win. 

So, here's where my headache is at...

Just when I think my 24/7 headache can't get worse, it has a way of finding a new level of pain (just one reason why the standard 1-10 pain scale is completely worthless to me). I've had a couple of really severe pain spikes that, once subsided, continue to redefine my baseline "normal." In early June, I ended up in the ER after a horrible night of through-the-roof pain that kept me awake and vomiting. (An IV infusion of Toradol, Tylenol, Zofran, and Benzodiazepine got it under control enough to go home after a few hours.)

In an attempt to tackle what we suspect is centralized pain, I've also been experimenting over the last few months with some new strains of medical marijuana, including a few kinds of CBD oil and Rick Simpson Oil. In general, I've had some mixed results with marijuana - sometimes, it seems to take the "edge" off (though not substantially) but it also knocks me out pretty hard, making it impractical to use my vaporizer or ingest the oil orally any other time other than right before bed (and even then, it can negatively impact me the following day). The Rick Simpson Oil is pretty interesting and has gained some attention for its use in alternative cancer treatments. Granted, much of the claims are anecdotal (which is okay in my book given the potential risk-benefit). It may be worth looking into for any readers looking for some non-pharmaceutical pain management options (disclaimer: whoever designed that website was likely stoned). And here's a brief explanation of the difference between CBC oil and Rick Simpson Oil:

For good reasons, CBD and Rick Simpson oil are receiving attention. There is not shortage of studies and anecdotal reports that show the beneficial aspects of cannabis. However, there is some confusion surrounding CBD oil, and how it is related to Rick Simpson oil. While they are similar in many aspects, they are still very different products.

Both oils are made from the same plant: cannabis, respectively hemp. From a botanical perspective, cannabis and hemp belong to the same plant genus - cannabis. However, due to geographical factors and through breeding, the plant has developed into different species and strains, which produce a different harvest: Hemp produces few and small flowers with low cannabinoid content, but in exchange hemp produces high amounts of fibre, which are used in many industrial applications. Cannabis, on the other hand, refers to the recreational and medical plant which produces big and potent cannabinoid-laden flowers, but only small amounts of fibre. Again, they are botanically from the same plant family - just bred into different strains that yield another product. Further, the Rick Simpson oil is almost always made particularly from Cannabis indica strains, which have been shown to be more effective for physical ailments. 

And since my last post, I've continued my weekly physical therapy treatments. My range of motion, strength, and just movement in general have really improved, so these sessions have been focused primarily on manual modalities like dry needling, laser, and other soft-tissue work in an attempt to get the spasm through my neck muscles and traps under control (with the ultimate goal of affecting the pain that the spasm is undoubtedly causing, or at the very least, contributing to.) Most recently, I've added a few extra sessions per week, incorporating some needling work further down my spine and into my hips (desperately just trying to get my whole body in better condition so everything on top has a better chance of following). Excuse my white ass.

I've also been seeing a new pain doctor, Dr. Townes, for a series of sphenopalatine nerve blocks. The procedure basically consists of getting a very thin plastic tube stuck up your nose to insert numbing medication in and around the sphenopalatine ganglion (SPG), which is a group of nerve cells that's linked to the trigeminal nerve (the main nerve involved in headache). Like other nerve blocks I've had, the procedure is diagnostic - so IF it helped, the next step would likely be an ablation (similar to the dorsal root ganglion ablation I had a few years ago). Dr. Townes wanted me to do a series of 2-3 blocks, but didn't think it would be worth doing the third if I hadn't felt any relief after the second. I've had two now and haven't felt any change.

I do go back to see him this Thursday though to figure out where to go from here. My physical therapist (and Craig and I) really think that I could have some irritation with my spinal accessory nerve, so a block to that nerve is a potential next step to pursue. The accessory nerve (AKA cranial nerve XI) supplies the sternocleidomastoid and trapezius muscles, both of which are completely locked up for me. A functional convergence of sensorimotor fibers in the spinal accessory nerve and upper cervical nerve roots ultimately converge with the descending tract of the trigeminal nerve and might also be responsible for the referral of cervical pain to the head

There's one final treatment worth telling you about: Hyperbaric Oxygen Therapy (HBOT), which I started last week at Hyperbaric Oxygen Therapy of Arizona. Here's the gist (from their site)...

HBOT delivers 100% oxygen at a pressure greater than sea level atmospheric pressure while the patient is enclosed within a certified pressurized chamber. The patient breathes 100% oxygen while covered under a hood, or while wearing a mask.

When red blood cells deliver only a limited supply of oxygen to tissue cells, negative physiological changes occur. Injuries, infections and diseases can cause a drop in tissue oxygen level to almost zero. World wide research confirms that breathing 100% oxygen under pressure forces the oxygen to reach those tissues and body systems affected by injury, infection, or disease and accelerates the body's healing process. Statistics from Hyperbaric Oxygenation demonstrate tremendous improvements in hundreds of conditions such as slow healing wounds, migraines, brain injuries, chronic fatigue, spider bites, and even Cerebral Palsy.

Benefits of Hyperbaric Oxygen Therapy:

• Increases neuronal energy metabolism in the brain
• Can create sustained cognitive improvement
• Wakes up sleeping (idling) brain cells that are metabolizing enough to stay alive but are not actively "firing"
• Enhances the body's ability to fight bacterial and viral infections
• Deactivates toxins and poisons (e.g. side effects from some chemotherapy, spider bites, air pollution, etc.)
• Enhances wound healing by stimulating the growth of new capillaries into the injured area
• Creates an immediate aerobic state
• Removes free radicals
• Reduces tissue swelling
• Acts as an anti-inflammatory

Each session is 90 minutes long. I have my fourth one this afternoon, and will do at least 10 before I decide whether to continue with more. So far, I haven't felt any changes in my headache but it could very well take even more than 10 sessions (a recent fibromyalgia study, which resulted in drastic reduction and resolution of pain, required 40 HBOT sessions). If you're interested in learning more about HBOT for chronic pain and/or headaches, here're some helpful research I'd recommend checking out...

Hyperbaric Oxygen Therapy: A New Treatment for Chronic Pain?

Hyperbaric oxygen could provide relief of chronic pain

So, that's where I'm at. From a pain management perspective, working out (including trying to spend more time back on my bike, when possible) continues to be the most effective way for me to keep my blood flowing, endorphins up, and sanity in full (or at least partial) supply. Hopefully I'll have some next steps mapped out after my pain doc appointment later this week. 

Thanks for reading! xo 

6 months post-op

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. 

The Nervous System and Metabolic Dysregulation: Emerging Evidence Converges on Ketogenic Diet Therapy

Treatment of central sensitization in patients with 'unexplained' chronic pain: An update

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! 

14 weeks post-op update

I think I've had a new entry browser open on my computer for at least 3.5 weeks now, putting off what feels to me like (though what not necessarily is) a redundant update of my post-surgical progress. As always, when I step back for a minute, I realize that much progress has been made, even if I'm not right where I want to be just yet.

So, in a nutshell...

I still have my 24-7 headache. I have some days that feel worse than my normal headache, some days that feel the same, and some days that feel better than average, but overall, I am trending positive. I'm making progress in my rehab and have every reason to believe that progress should start translating to less pain soon.

Here's the story behind those few sentences that have pretty much become my go-to response to anyone who asks me how I'm doing. At face value, I realize they may sound slightly delusional.

I started weekly PT visits with Jeff Beran in mid-January. I was still in my neck brace for the first month of rehab with him, which meant we were somewhat limited in what we could do from a movement perspective, but still had plenty to work on. Though it's progressing every week, the primary goal of my rehab (aside from the obvious regaining of mobility and strength) has been to re-establish proper movement patterns. By doing so, we're able to help decompress my spine and surrounding fascia, allowing it to move better and not hinge at particular fulcrum points or compress nerves that cause additional pain. To anyone reading this who's dealing with a C1/C2 instability with a tonsillar ectopia and chronic headaches: if you're considering surgery, you NEED to realize that the outcome will be just as dependent on your commitment to (the right kind of) therapy as it is to what happens in the operating room.

When people ask me if the surgery "worked", my answer is: Yes, it worked to fuse my C1 to C2 and remove a piece of my skull to help decompress my spinal cord. But getting rid of my headache is like building a house. The surgery was the foundation that needed to be built in order for everything else to be possible, but now I have a house to build. And that's a process that takes a whole lot of work.

Back to my PT: Some of the very first exercises I was doing, even before rotating, flexing, or extending my spine, looked like this:



Eventually, we started incorporating some light range of motion exercises (while still in the brace)...



Though nothing miraculous was happening from one day to the next, I had started to feel like a shift was occurring. Lower pain days were becoming more frequent - even multiple days strung together in one week. Waking up in less pain than I was used to started to feel less like a fluke and more like a trend, which in itself felt like a mini-miracle. I was still having some rough days, but overall, finally felt like perhaps I finally was moving in the right direction. On January 29, I sent Craig this message at work. It was the first time I had felt hope that didn't come just from trusting someone else's, but from what I felt in my own body. It's hard to put into words what that feels like, but I'd say his first response sums it up well.

When it comes to maintaining hope, I don't think my expectations are unreasonably high. I just need is a little positive feedback. I can deal with 1 stepforward, 0.9 steps backward. When your pain hasn't budged or only gotten worse in the last 4 years, 0.1 feels like an exponential leap in the right direction, which is why despite some rough patches here and there, I'm feeling more optimistic now than I ever have.

As critical as the neck brace was for the healing process, it was becoming painstakingly obvious that forced immobility was a roadblock to my pain progress. Basically, the collar was removing the the requirement for my neck to actively stabilize my head. Immobility creates weakness, which leads to tightness and guarding, which causes pain. So as grateful as I was for the brace allowing my fusion to heal and laying the foundation for my road to recovery, I welcomed that 12-week post op date when I could take it off with open arms. If I count the 6 weeks I spent in a hard collar earlier this fall while undergoing regenerative ligament treatment (prolotherapy and PRP) with Dr. Hauser, I had spent 4.5 out of the last 6 months in a collar. I was more than ready to be free when February 8th rolled around and it was time to shed the brace. It also happened to be my 28th birthday, which made for a pretty kickass gift from the universe.

I took my brace off that morning and enjoyed a solid 8 hours free from medical attention. Then around 5pm, I sliced my hand open on an effing vegetable mandolin while making dinner. Eight stitches later and all Craig and I could do was shake our heads and laugh at the irony. Such is life, eh?

As I sat waiting my turn in the urgent care waiting room though, I couldn't help but have a flashback to last summer's vacation (we'll use the word vacation lightly): sitting in the bustling ER of Mass General Hospital with kidney stones and a soon-to-be blood infection, in some of the worst pain of my life that wasn't due to the famously intolerable flank pain but a rebound headache I had developed from a pain killer that I had been given for the stones. It was like my normal headache on steroids and with every minute that passed, I became more convinced that my headache was, in fact, trying to kill me. So as I sat in urgent care last week, with a blood-soaked dish towel wrapped around a hand that was responsible for making my kitchen look like rather gruesome crime scene just 30 minutes prior, that feeling of panic and despair hit me again. My head hurts worse than my hand right now. They'll stitch up my hand. They'll fix the problem. It'll be good as new in a few days, but my head will still hurt. 

As big a milestone as removing my neck brace was, I learned over the next few days that going cold turkey wasn't my wisest move. So after a PT session that Wed. evening, I decided to make a more gradual transition out of it. Now, I put it back on for a few hours each day (especially if I'm working on the computer) just to give my newly-working-again neck muscles a break. Holding up a 10-12 lb head all day is no joke. 

Right now, I'm still seeing Jeff at least once per week and working on my rehab at home and in the gym. I've also been seeing Veronika for visceral work about once every two weeks. Just in the last few weeks, I've made some major progress with my range of motion. I've pretty much regained full flexion, and my rotation improves every day. It's been a lot easier to turn my head to the left, but my rotation to the right has increased quite a bit since February 8. In the video below, which was taken last week, you can see where I'm at with my movement. The reason that I push my head into my hands when I go into extension is because I get some pretty significant discomfort when I extend my head back on its own, but as soon as I give it some proprioceptive feedback, the pinching sensation totally disappears. It's kind of trippy, but actually makes a lot of sense.



We started playing around with this a little in PT this week and found that I can make the extension-induced discomfort disappear just by activating other muscles (with a cable pull-down shown here), which changes the neural input to my shoulder and allows for more segmental movement through my spine.



What's going on at that level of my spine (C6-C6 area) also explains the chronic tightness through my shoulder blades that I've always felt has been connected to my headache but that I've never been able to resolve despite all of the soft-tissue work I've undergone: the long thoracic nerve, which arises from three spinal nerve roots at C5, C6, and C7, can cause pain several different muscles, including those between the shoulder blades like the rhomboids. This is a good visual to check out



So, that's where I'm at now. I'm taking each day at a time...finding hope in every better day I have and using that to carry me through the tougher days that require just a little more (and sometimes a lot more) patience. I've had an unusually painful last week and a half, but I think I've had a sinus infection on top of everything, which has likely added an extra layer of pain to my headache. The positive is that as more times goes on, I'm able to do more in physical therapy, which should only help me gain more traction. In the last week or so, Jeff's started scraping my and dry needling closer to my incisions (in addition to using the cold laser), which all help to break up scar tissue that's been keeping everything so bound down.

This week, I also have a massage with a new soft-tissue therapist, new x-rays scheduled to ensure everything's still healing like it should be, and a float-therapy session scheduled (to hopefully help reset my nervous system, but if nothing else, just relax).

More to come soon.

7 weeks post-op

I'm 7 weeks (and 2 days) post-op and figured it was time for another update. I guess I had sort of been waiting for a big breakthrough moment in my recovery before a new post, but decided a new year was reason enough. And I have been pretty busy at work trying to become pain-free, so here goes...

Actually - first, to balance out the highly impersonal anatomy diagrams that fill the rest of this post, a late happy holidays and new year from Craig, Charlie and I.

You'll notice I'm sans-neck brace when this photo was taken on our front porch on Christmas day, which just means it was preceded by...me convincing Craig I needed to take it off because despite him telling me that he only thinks happy, healing thoughts when he sees me in a neck brace (have to love him for it), there was no way I was taking a family picture with it on...and proceeded by me strapping the hard collar back on as fast as possible without moving a muscle. Hah!

And here's our Charlie girl posing in front of the tree.

And my 3 most effective forms of medicine on New Year's day: hiking, Craig, and my pup.

Now the pain update: Headache is still here. I've had a few less-than-normal pain days and a few worse-than-normal pain days, but for the most part, a lot of normal pain days. As I explained in my last post, I do really still feel like it's coming from the soft-tissue (versus the area around my C1/C2 instability that I felt prior to surgery). And I'm still choosing to interpret that as a POSITIVE sign.

Just over two weeks ago, Craig and I flew back to Tampa for my 6-week follow-up with Dr. Franck. Man, I am so over flying to Tampa. I had x-rays taken here in Arizona that Saturday so they were ready for Dr. Franck to review by Tuesday morning when we met. Getting the x-rays felt like a big step because my hard collar came off and for the first time since before surgery, I had to move my neck around to get the different views. It wasn't particularly painful, but very stiff.

After looking at the films that Tuesday, Dr. Franck told Craig and I that he was happy with how I'm healing (which is awesome). You can see the placement of the hardware in the pictures below, and also the white kind of blurry area between C1 and C2, which is the matrix of new bone growth from my donor stem cells.

I got the go-ahead from Dr. Franck to transition out of the hard collar and into a soft collar. As uncomfortable as the hard collar was, it really hadn't bothered me a whole lot since waking up in it on November 17th. Maybe it was just the conscious decision from the start that I wasn't going to let it bother me (because how miserable would that be if I had woken up every morning for the last month and a half obsessing over how uncomfortable a brace was?)...or, maybe it was because the brace felt like it was part of the solution and therefore something I couldn't hate...or, or maybe it was because my headache has been bad enough since surgery (and the 3.5 years prior to surgery) that it just hasn't allowed the inconvenience of a neck brace to qualify as discomfort (if that makes sense). Don't get me wrong, though, it did feel damn good to take off, especially because it meant I could finally take a shower without a brace on my neck. I think I may have taken 30 minute showers for the first few days after that. Also, I can drive now!

So back to my pain. My biggest concern at this point wasn't that I still have my headache (recovery is a process, I get that), but just that my recovery (at least pain-wise) seems to be taking longer than most people who have had this procedure. In the literature Dr. Franck's published, headache intensity was reduced on average by 96% at the 6-week postoperative interval.

(This is from The Craniocervical Syndrome and MRI)

When I voiced my concern about this to Dr. Franck, he agreed that I was definitely taking longer than most patients to experience a reduction in my headache, but also said that like Craig and I (and all of the therapists I've seen in the last 1.5 months, he's encouraged about the changes I feel in the SOURCE of my headache. He told me to start a few isometric strength exercises (literally just resisting the push of my hand into my head in 6 different directions) and gave me the green light to start a bit more structured physical therapy (without coming out of the soft collar though). He also instructed me to continue wearing the bone growth stimulator around my neck four hours per day for another 4 months. I'll have new x-rays taken in February before I come out of the soft collar (about 5 weeks from now), which he'll be able to review without us having to travel back to FL (!!!), and then we'll fly back at the 6-month post-op mark (May) for another visit.

SO, that went about as well as it could have. Now the question of how to keep doing everything I can to keep moving in the right direction and hopefully start feeling some substantial relief soon...

I've been seeing a physical therapist, Kara, at EXOS about twice per week for a few weeks now. She's been dry needling my upper traps to try to break up some pretty serious knots, and doing some light massage on my scalp and around my incision to help with the scar tissue. Next week, I'll start a once-weekly appointment schedule with Jeff Beran (the PT I've seen in the past) and will gradually be able to start transitioning to some movement-based rehab. I know my neck is really weak right now, and I know that weakness causes tightness and tightness causes pain, so hopefully I'll be able to start breaking that cycle and address some of the other dysfunction I have going on in my movement mechanics. I'm also looking forward to him using the K-laser on my surgery site. I seemed to have a better day following some laser treatment with him a few weeks back. The laser uses specific wavelengths of light to increase circulation and decrease swelling, inflammation, and scar tissue formation.

And on Tuesday, I saw Veronika Campbell, another PT I've worked with on and off over the last few years, who specializes in manual therapy, neural, and visceral mobilization. She worked on the link between my ophthalmic nerve and greater occipital nerve at the coronal suture where they together. This felt really good because that area of my scalp (shown below where the coronal suture is) is very tender/tight feeling. I can't find a great diagram to show both of these, but the red line on this image indicates where they come together at the suture line.

She also worked on the attachments of my falx cerebi (a small sickle shaped fold of dura mater that you can see in the diagram below) into my cranium...

...and the fascia at the insertion near the jugular foramen and the suture (look about half way down the right side.)

Lastly, she did some nerve mobilization to the accessory and dorsal scapular nerves.

Sorry the image overload, but if you're a visual person like me, maybe that's helpful.

I had been having a pretty strong flare up in pain on Monday and Tuesday, and since Tuesday (when I had PT at EXOS in the morning and PT with Veronika at night), that seems to have settled back down. The spike in pain was probably my own fault - I think I had done a little too much workout-wise over the weekend, including a few things I'm probably not ready for yet (like versa climbing and pilates arm work). Live and learn.

So there's the update. Hoping that next week is better than this one and the week after that is better than next.

Someone asked me the other day during my workout if I've gotten used to being in pain. A valid question, but a tricky one to answer. After having a 24/7 headache for somewhere between 1,000 and and 1,300 days in a row (I'm not sure the exact date they transitioned from intermittent to constant), yes, I have gotten used to it. Of course my threshold for pain has increased (how could it not?) But, (and I think about this often), If I didn't have the headache I have now and I just woke up one morning with this headache and knew it would be gone the next day like most headaches are, I would stay home from work. I would skip my workout. I'd ask Craig to take Charlie for a walk and to pick up dinner on his way home. I'd lay down...maybe watch some TV. Basically, it'd be a bummer of a day. When that becomes your everyday reality, though, you have no choice but to get better at dealing with pain...to go on with life with the most positive attitude you can muster. But becoming better at dealing with it doesn't make the pain hurt any less. I hope that makes sense. And THAT is why I'm ready for this thing to be gone for-ev-er.

Almost done. Here's one final picture of what my scars look like today. They're definitely healing well, and as more time goes by, we'll be able to get a little more aggressive scraping them to help break up the scar tissue. For now, it's mostly light massage and pinching the skin around the incisions. My beautiful buzz cut is growing out quite nicely too.

Lastly - Over the last few months, I've had quite a few people send me emails who are on similar headache paths and have come across my blog in their quest for answers. When I started recording my story over two years ago, I never imagined there were so many people out there, in pain, asking the same kinds of questions, seeing the same kinds of doctors, trying the same kinds of treatments, and facing the same roadblocks along the way. I didn't think it was possible to feel more motivated to get rid of my own headache until hearing the stories from strangers who I share this journey with. So to all of the people who have communicated with me after reading this, thank you. It's pretty amazing how impactful the support of strangers can be and I hope my story (which is not over yet) can provide the same kind of inspiration to you as yours have to me.