September 2018: chronic pain and hormone health, Blair technique, and a trip to CO to the Centeno-Shultz Clinic

Hello friends and strangers. It's that time again! 

Last I wrote, it was May and I was on my way back to San Francisco for another series of nerve blocks with Dr. Peled. He had decompressed both my right and left greater occipital nerves last July (along with decompressing both lesser occipital nerves and excising both third occipital nerves and then excising my left lesser occipital nerve in November) but based on the location and nature of my just-as-severe lingering pain, we decided that it was worth trying another round of diagnostic blocks to the GONs (using Lidocaine/Marcaine + some steroid for potential therapeutic purposes) along with some supraorbital nerve blocks. The outcome was....meh. Maybe a little improvement (?) but unfortunately nothing too substantial. We decided that the supraorbital might be worth repeating with a local doctor, though, so I found a Phoenix-based plastic surgeon who, at least according to his website, has experience with migraine surgery. I saw him a few weeks later but it was kind of a disaster. Not worth getting into but long story short, the wait lasted ninety minutes, the appointment lasted five minutes, tears were shed, and no nerve blocks were administered. 

At this point, I didn't really have a "next step" mapped out, which is challenging in more ways than one. As much emotional energy as it takes to tackle the next approach, the next doctor, the next appointment, the next procedure, the next medication, the next therapy, it takes even more to process the question of whether there even is a next. (Spoiler alert: there is! But I'll get to that in just a bit.) In the meantime, I continued focusing as best I could on what I could control. 

Since early 2018, I've been working with my naturopath, reproductive endocrinologist, and Chinese medicine physician (who specializes in women's and hormone health), to help regulate my endocrine system through a combination of medication, supplementation, herbs, and acupuncture. Woah, where am I going with this, right? 

Seven years in, I'm no stranger to the pain game, but it's become glaringly apparent over the past year especially, just how much havoc chronic pain can wreak on the entire body. Chronic pain is STRESS (obviously) but not just in the sense that it feels stressful in the hard, frustrating, overwhelming, life-altering sense. It's for sure all of those things, but physiologically, it has profound, far-reaching effects on the endocrine system. The endocrine system uses hormones to control and coordinate so many functions of the body that are necessary for homeostasis, so it's kind of important. I'm clearly no expert in this stuff, but am trying to wrap my head around it as best I can and am sharing what I've learned only because I know I'm not the only one trying to piece this puzzle together.

So on a very fundamental level: Stress activates the hypothalamic-pituitary-adrenal (HPA) axis, which is considered to be the major stress control mechanism of the body. Our bodies are smart! They produce more stress hormones when we're in stressful circumstances to mobilize and energize us. But this system isn't designed to protect us from acute stress/pain that turns chronic (example: a seven-year long headache).  When the axis is chronically stimulated beyond a healthy, acute pain response, the adrenals continue secreting cortisol and serum cortisol levels continue to rise. When cortisol creation dominates the pathways, it disrupts the balance of other hormones. The pituitary gland's thyroid function can be suppressed, as well as its ability to release LH, and estrogen/progesterone ratios can get thrown off, leading to a whole bunch of symptoms and issues that no one wants to deal with. 

The takeaway is: chronic pain can do a lot more to your body than make it hurt. And I guess the more you know, the more you can do to support it from all angles (which is what I'm trying to do). Aside from the medical approach I mentioned above, I've also made a concerted effort to dial back the load of higher intensity exercise this summer. I'm still working out, but taking more rest days and incorporating fewer metabolically-taxing workouts into my routine. Exercise has always been my physical and mental escape from pain, but unfortunately, good physical stress is still stress and it's become painstakingly clear that right now, my body just needs less of it. 

Okay, on to my head.

If you've been following my blog for a while, you know that for as many treatments as I've pursued, it always comes back to my upper cervical spine. And even after every upper cervical treatment and procedure that has failed, it's just hard to ignore what you feel in your own body. I would tell Craig over and over, "something is just not right in neck." So, in July, I found myself back in the office of yet another chiropractor (perhaps an indication of just how desperate I was). This practitioner utilizes the Blair Technique, which is a manual method of adjusting the first two cervical vertabrae (atlas and axis). Since I'm fused at C1 and C2, and because I haven't had success in the past with other upper-cervical focused techniques (atlas-orthogonal and NUCCA), I wasn't sure exactly how or if there way any shot of this helping. But, I was hopeful that maybe there was some work that could be done between C0 (my occiput) and C1. 

It's hard to tell from this image because the misalignment is more rotational, but that's exactly what he ended up trying to do; improve the alignment between my skull and C1. I would definitely feel a sense of relief after the adjustments (in the sense that I didn't feel quite so "locked" and there was a correlation between my highest pain levels and my misalignment), but I've had a really difficult time holding the adjustments (meaning I would see him the next day and be right back where I was). 

Though they haven't been a game changer, these treatments have at least validated my intuitive feeling that these first few vertebra are still somehow driving my pain, which leads me to the latest development. 

Last week, Craig and I flew to Denver to see Dr. Centeno at Centeno-Schultz Clinic. Dr. Centeno is an international expert and specialist in regenerative medicine and the clinical use of mesenchymal stem cells in orthopedics. I'd first learned about Dr. Centeno a few years back after my initial C1/2 instability diagnosis led me to research regenerative ligament treatment. Before my eventual C1/2 fusion and craniectomy, I had undergone  prolotherapy and platelet-rich plasma therapy with Dr. Hauser in Florida. The outcome was unsuccessful and I had been assured (by several doctors, not just my neurosurgeon) that because my instability was so severe and because Dr. Hauser could only safely target the surrounding tissue and not the actual damaged ligaments (alar and tranverse), these types of injections just didn't have a chance of helping. I've since learned, though, that Dr. Centeno does have an alar ligament treatment for CCJ instability (worth checking out if this is relevant to you) but that doesn't really help me at this point. 

What could help me, though, are some other techniques he uses to help patients with chronic pain originating from the upper cervical spine (specifically, the facet joints, which I'll get to below). Here's a quick video of him explaining his joint injection technique at the C0/C1 level. 

After getting the required updated MRI and DMX (digital motion x-ray), Craig and I had a phone consultation with him in early August to discuss my case. If you're wondering what a fused neck in motion looks like, here's my DMX: 

After our phone consult, we made plans to travel to his office in Colorado for some facet joint blocks, the outcome of which would determine potential candidacy for stem cell and PRP treatment. Believe it or not, of all the diagnostic blocks I've had done over the years (several specifically focused on my cervical spine, including a C1 nerve root block, medial branch nerve blocks C2-C7, a bilateral pulsed radiofrequency medial branch nerve ablation C2-C7, and a dorsal root ganglion block) I've never had cervical facet blocks. Why? Well, Dr. Centeno offers a pretty astounding explanation for the premature demise of the C1/C2 facet injection. 

Facets are tiny little articulations (about the size of a finger joint). Just like any joint, they become inflamed when they're damaged and chronic inflammation to all of the nerve endings can become a source of chronic pain. Adult stem cells in your own body can renew themselves and turn into other cells, helping to repair damage as it occurs. So the idea behind this type of stem cell treatment is that by extracting them from an area of high volume in your own body and then re-injecting them into the damaged area, it can promote healing. Similarly, PRP works by taking out your blood, spinning out the red blood cells, and re-injecting the platelet-rich plasma in the targeted area, which has a stimulating effect on the stem cells there (meaning, the stem cells get an extra boost to do their healing thing). The PRP methods that Dr. Centeno's clinic uses are also different than what I've had in the past in that they're more pure and concentrated. And in case you're wondering why I'm traveling out of state when there are quite a few doctors locally who practice regenerative orthopedics, it all has to do with the site of damage and speciality. Dr. Cenento is the doctor performing this treatment at the C0/C1 and C1/2 level.

So, my visit with Dr. Centeno last week included a thorough review of my most recent imaging, a physical exam, and the diagnostic procedure. 

To start, we went over my MRI, where he identified a strange lesion posterior midline of C1/C2. You can see where its measurements are marked in the image below. At 1.44 x 1.96 cm, it's a pretty decent size. Fun! He really wasn't sure what it is (possibly scar tissue related to my first surgery?) so the next step is for me to get a more specialized MRI. That's scheduled for next week and hopefully will provide more information. 

I had a total of four blocks done (C0/C1 facet joint and C1/C2 facet joint on right and left sides) using a low-dose cartilage-friendly anti-inflammatory and an anesthetic. They're diagnostic in terms of how I respond to them but also diagnostic in terms of what Dr. Centeno sees happening under x-ray while he's doing them. When he did the C0/C1 block on the left side, he could tell that there's damage to the facet capsule because when he injected me, fluid leaked out of the joint space. When he did the C1/2 block on the left, it was clear that although the vertebra are stabilized (screwed together), the joint has not fused. This is a little concerning because now there's a screw in the joint with broken cartilage and the joint will likely get arthritic over time. The right side has successfully fused though. When he blocked C1/C2 on the right, there was also clear damage to the facet capsule. What was interesting to me about these blocks is how painful they were. In all of the procedures I've had done (including my surgeries), I've never felt anything quite like that. But it seems like that makes sense, given how inflamed those joints are. 

So, maybe you don't read this all and think "hey, great news!" but it certainly validates that there's real damage in the very spots where I've felt something to be wrong for so long. And where there's a defined problem, there's actual hope for a solution. 

As far as my response to the blocks, I did feel some head pain reduction in the few minutes post-procedure, but it wasn't until the next day that I felt truly significant relief; a major improvement in my headache and a incredible sense of relaxation through my always-in-spasm levators and, well, basically every deep neck muscle that you see below. Even Craig was blown away by how different things felt just by putting his hands on my neck.  It totally makes sense that when the joint capsule is damaged, the surrounding musculature responds in the only way it knows how: stabilize, tighten, lock down! It knows there's damage and it's doing its job to protect against more of it. The best massage therapist in the world can't stop that. 

Because I experienced a more delayed response than anticipated, we thought perhaps the anesthetic hadn't done anything and it was the slower-acting anti-inflammatory taking effect. But after two days, my pain spiked right back to normal where it's sat stubbornly since, so I'm pretty confident it was the anesthetic. 

I don't have all of the details of my treatment plan worked out quite yet, including whether I'll start just with PRP or PRP and stem cell, but the tentative plan right now is go back to Denver in early November to begin treatment.

More updates soon!

5 months post second occipital nerve surgery

Long overdue.... but isn't it always?

I'll start with a timeline refresh. 

I'm currently five months out from my most recent surgery, where Dr. Peled performed an excision of my left lesser occipital nerve (you can read more about that in my 6-weeks post-operative post here, including experiences with my latest tries at Botox, trigger point injections, auriculotemporal nerve blocks, a vagal nerve stimulator, and Charlotte's Web (CBD). Six months prior to that surgery, Dr. Peled had already decompressed both my right and left greater occipital nerves and right and left lesser occipital nerves and excised both right and left third occipital nerves. Some patients have relatively immediate relief from these procedures (whether that's total resolution of or significant reduction in pain), but it's also not uncommon for recovery to be a longer, bumpier road, as nerves can take quite some time to heal. So as the weeks and months passed without improvements in my head pain, I tried to remain (still do) as cautiously optimistic as possible. 

In January, I started seeing a new physical therapist who specializes in visceral mobilization, which is a manual therapy consisting of gentle, specifically placed manual forces that encourage mobility, tone, and inherent tissue motion of the viscera (organs), their connective tissue and other areas of the body where physiologic motion has been impaired. I'd tried this with several practitioners over the years without success, but now that the primary mechanical drivers of my pain had hopefully been addressed, perhaps the outcome could be different. Unfortunately, it wasn't. I worked with this PT for about four months before deciding to call it quits. 

By late winter/early spring, my high pain days seemed to be getting more and more frequent. My headache, still throughout my frontal, temporal, and occipital regions, would "flare up" but then just not come down. Days then weeks would pass. I don't think I can use the word "flare up" anymore, I told Craig just a few nights ago. It implies there are ups and downs. I don't have the downs. 

I did have a little bit of dry needling on and alongside my incisions to try to help break up some of the scar tissue (these last two procedures, along with my C1/C2 fusion and craniectomy 2.5 years ago have left quite a bit of that) but I just felt like there was still something going on around the area of my left lesser occipital nerve. So in March, Craig and I decided to fly back up to San Francisco so that Dr. Peled could try a steroid injection at that site to help with inflammation. I could have seen a physician here in Arizona to do that, but just feel more comfortable this point under Dr. Peled's care.  Unlike the diagnostic blocks, this type of injection can take up to two weeks to "kick in" but unfortunately, that window came and went without any pain reduction. 

Soon after, I tried a month-long cyrotherapy experiment. I've done cryotherapy in the past at my naturopath's office, and have quite a bit of experience with cold-water immersion on my own but wanted to see if more consistent total-body cryotherapy along with local cryo treatment to my neck (which basically feels like a hairdryer blasting you with freezing air) had any effect on my pain. So I tried this daily for about thirty days. The chamber is a dry, oxygenated air set to -170 degrees F. You stay in there for 2.5-3.5 minutes (exact time determined by how long it takes your skin temp to drop 30-45 degrees). It sounds sort of brutal but actually feels much less cold to me than sitting in an ice bath. 

I'm fully aware that certain therapies like this raise some eyebrows, especially when packaged up into a monthly membership at a Scottsdale strip mall. BUT, whether or not all of their claims are grounded in hard science, there is something to the cold. It's invigorating, oddly calming, and certainly has an impact on the parasympathetic nervous system. But most of all, when you're a position like mine, you can't really afford not to try something. I'm glad I did, but will be sticking to the cold plunge from here on out. 

Most recently, I restarted some manual work with a new massage therapist and have begun seeing a new Chinese Medicine acupuncturist. I know more than anyone not to expect bite-sized miracles, but I've noticed that treatments like these, even the most gentle, can spike my pain in the hours, days, and sometimes weeks following, which can make the process extra challenging to navigate. 

I do have a next step mapped out though, which I'm actually feeling excited about. I decided, based on the nature and very specific location of pain I'm feeling in my suboccipital region to go back to San Francisco yet again for another series of blocks. I'm fairly confident that my greater occipital nerves are still causing problems (both of which were decompressed last summer, not cut). Dr. Peled is going to try these injections for diagnostic purposes (fast acting Lidocaine/Marcaine) and *hopefully* therapeutic purposes (meaning that he'll include some longer-acting steroid in there too.) Depending how I respond in the few minutes after these blocks, we may decide to try some injections in my supraorbital area as well. 

I realize that from the outside, you're probably wondering why the hell I'm chasing a solution (particularly an invasive one) that hasn't really proved effective for me thus far. It's hard to explain my reason, other than to say that all I can do is listen to my own body and trust my intuition. In almost seven years, I have never felt the (temporary) relief I experienced during my diagnostic nerve blocks prior to both nerve surgeries with Dr. Peled. I'm not ready to give up on that. 

On that note, while I may not yet be a shining example of a migraine surgery success story, I wholeheartedly believe in the promise of this treatment option for patients whose symptoms, medical history, and response to a qualified surgeon's diagnostic blocks make them candidates. I've come to know, first hand, too many people who've been given a second lease on life thanks to these procedures not to. 

In fact, the American Society of Plastic Surgeons (ASPS) just issued a statement regarding their official position on the utilization of peripheral nerve surgery for the treatment of chronic headaches/migraines. Based on a comprehensive literature search and review of a large body of peer-reviewed scientific evidence, they found that "peripheral nerve/trigger site surgery for refractory chronic migraine headache (MH) is safe and effective in the treatment of patients with a suspected peripherally-generated/centrally-conducted MH etiology" and concluded that the "long term effects of surgical intervention for refractory chronic migraine headache (MH) cannot be reasonably attributed to placebo." This is a big deal because critics of this surgery (i.e. most neurologists) will say that the body of peer-reviewed studies demonstrating efficacy owe their success to the placebo effect. Hopefully, this is a at least a step forward in bridging the glaring (and from a patient perspective, incredibly frustrating) gap between neurologists who treat MH patients and the plastic surgeons who specialize in this treatment. 

So that's that. I'll do my best to update after my trip to San Francisco. 

For the most part, sharing this unplanned headache journey of mine over the last few years has been highly therapeutic. Lately it has just been feeling less so. I think it's just that I'm so over the pain. So over feeling it, living it, thinking about it, talking about it, and naturally, writing about it. There's something else, though, too, which is that the longer this chapter of my life becomes (just two months shy of seven years), the harder it feels to effectively articulate it. Especially because there's nothing I hate more than feeling like I'm complaining. 

Everyone knows what physical pain feels like. A lot of people (too many) know what chronic or recurring pain feels like. But most people also know what it feels like for pain to go away, and that knowing - that guarantee - that however uncomfortable or intolerable it may feel, it isn't permanent - changes the entire experience. 

I was picking up a few things at Target recently (said no one, ever) when I couldn't help but overhear a conversation between a few ladies shopping next to me. 

"I had a migraine this morning." 

"Ugh, migraines are the the worst." 

"But I ate lunch and it went away." 

She ate lunch. It went away. On to the next topic. Without warning, my eyes welled up with tears. Emotional breakdowns in Target now? Really? This is supposed to be my safe space. Hah. I beelined for all things Hearth & Home. Crisis averted. But you get point.

Then there's the question I struggle with the most: What does it feel like? 

Earlier this week, I sat facing my new acupuncturist who, as part of any normal evaluation, asked about the nature of my headache. "Is it a sharp pain? Or dull?" 

Sharp's never been the right word...but man oh man do I loathe the D word. A dull ache. "Dull" to me is the epitome of mild, lame, ho-hum. An adjective that belongs attached only to uneventful meetings, stale first dates, or worn-out blades hardly capable of inflicting damage. But pain that spreads across your head like some kind of wet, heavy blanket, covers your brows and envelopes your eyes deep into their sockets, squeezes your temples, and gnaws on the base of your skull with every inhale and every exhale of every minute of every day of every week of every month of every year for almost seven years straight?

No, I wouldn't call that dull. 

It seems that no matter how descriptive or thorough I am in explaining my pain or relaying my never-ending hunt for a solution and all of the fear, stress, and frustration it carries, words will never suffice. But I guess if I stop trying, that's guaranteed. 

When head pain is chronic and intractable, it becomes the background noise of life. Imagine sitting in in a restaurant having dinner with friends and there's some pretty awful music playing from the surround sound speakers (literal background noise...see what I did there?). You can't really tune it out, but you can still enjoy dinner. What happens though when the volume gets turned up, and keeps increasing until it's blasting in your eyes. You can't hear a single word that anyone's saying, your exhausted from screaming over the music just to be heard, frustrated that you can't just turn it off (or even down!) These awful sounds aren't tolerable background noise anymore. It's dinner with friends that has become the background noise. 

That might be the best way for me to explain this battle for me. I wake up with the pain turned up high and do everything in my power to keep normal life stimulation from pushing it past the threshold. Because once that threshold's been crossed, it's just pain blasting at full volume with everything else forced into background noise. And holy shit is that exhausting. So it just means I have to do all I can to control my environment, my routine, and as much input and stimulus to my system as I can. On the surface, it can look like a pretty relaxing day; a long morning walk with Charlie, a sweaty workout, a healthy meal, an afternoon nap. But it can also be really discouraging too, especially when it means not pursuing opportunities or choosing to skip out on things that I don't really want to miss, like one of my closest friend's weddings, or my sister's bachelorette party weekend and countless others. Luckily, those closest to me are always so understanding and supportive, for which I'm most grateful. 

Fingers crossed that my next set of blocks will bring some relief and at the very least, provide more direction for the road ahead! Until then, I leave you with my always reliable, tried and true mood booster. 

Six weeks post lesser occipital nerve excision

And just like that, I'm six weeks into my last (as in most recent, and hopefully also, final) surgery. Maybe the green light to start working out again this week was what I needed to lift the the fog of writer's block that's been plaguing me since late fall. Endorphins, my friends. They're no joke.

So I'll pick up where I left off in November. I was preparing to head back to San Francisco in mid December for Dr. Peled to cut my third occipital nerve, which had been decompressed back in July but was showing obvious signs of lingering damage.

I had a few other procedures scheduled here in Arizona prior to surgery, though. First, was more Botox. This was my third round in six months, and I can't say I was super optimistic going into this one, given that I hadn't felt any improvement until then (coupled with the fact that I didn't have a positive outcome the first time I tried it close to four years ago either) BUT, my Mayo neurologist and his PA had reminded me that for some of their patients, it really does take multiple rounds for the Botox to make a dent. On some of the online occipital neuralgia support groups and forums that I belong to, I often see people talk about how painful these injections are for their migraine treatment (or how much they dread or fear procedures like this). Maybe it's a testament to how many times my head and neck have been poked and sliced into, or maybe I'm just a complete wacko, but there's something about the feeling of a half inch needle going into my sore head that actually feels good. Almost like a massage therapist digging into just the right spot. Unfortunately, that feeling leaves with the needle.

Here's a breakdown of the Botox injection sites: 
5 units in the procerus
5 units in 2 injection sites in the corrugators
20 units in 4 injection sites across the frontalis
20 units in 4 injection sites in the right temporalis
20 units in 4 injection sites in the left temporalis
25 units in 5 injection sites in bilateral parietal region
20 units in 2 injection sites in bilateral masseter muscles
15 units in 3 injection site to the right occipitalis
20 units in 4 injection sites in the left occipitalis
20 units in 4 injection sites in bilateral cervical paraspinal muscles
30 units divided evenly across a total of 6 injection sites in trapezius muscles

In early December, I went back to Mayo for bilateral auriculotemporal nerve blocks and a series of trigger point injections.  You can see the location of the auriculotermporal nerve below. The area over bilateral temporoauricular nerves was injected with 2.0 mL of 0.5% Bupivacaine. 0.5 mL was injected 2 cm anterior to each tragus bilaterally. An addiontal 0.5 mL was injected into each of two tender spots in the temporal region which followed the nerve distribution bilaterally.  As a side note, this is the only nerve block procedure I've ever had (and I've had a lot) that has left lasting tenderness at two of the injection sites near each temple. Weird.

And here's a breakdown of my trigger point injections:

The area over 12 trigger points were identified in bilateral cervical paraspinal and trapezius muscles, followed by a 30-gauge 1/2-inch needle 0.5% bupivacaine. 0.5 mL of 0.5% bupivacaine was injected into each of 12 identified trigger points. 

Then, just a few days later, it was time for Craig and I to fly back to San Francisco for surgery. Dr. Peled's office is in the city, but this time we opted to stay in the east bay where the surgery center is. We knew we'd rather spend any downtime getting some fresh air in Walnut Creek. If surgery-eve sunset hikes are your thing (no? just me?), Acalanes Ridge is where it's at. 

On December 11, we reported to the surgery center first thing in the morning. (Thank God, because meal skipping is not my strength.) 

This procedure didn't take quite as long as the one in July because instead of having four nerves decompressed (right and left greater occipital nerves and right and left lesser occipital nerves) and having two excised (right and left third occipital nerves), I was only having my left lesser occipital nerve excised. Since I was under for less time, I also had a much easier time waking up from anesthesia this go around. 

Like my first surgery, I woke up feeling surprisingly good. Drowsy, but perfectly capable of walking into Whole Foods and eating most of the prepared foods bar on our way back to the hotel. I spent the rest of the afternoon just resting with ice packs in rotation (wrapped up to keep my incision dry). I had filled the prescriptions for the pain killers that Dr. Peled had written (and then forgot them at home...and then had them refilled in CA) but just like last time, I really didn't have enough discomfort to warrant taking them. I did stay on a regular dose of CBD oil (not sure how much, if any, it helped) Then I rested the majority of the next day, but even went for some short walks in town (lying stiff in bed always feel so uncomfortable to me). 

On Wednesday morning, Craig and I met with Dr. Peled for a follow-up before flying home. You can see here what my incision looked like (day 3) as he removed the bandage to change out the steri strips.  

For the first few weeks after surgery, numbness around my incision and throughout the lower portion of my scalp and behind my ear was at an all time high (which, truthfully, doesn't both me at all) and pain throughout my head was at an all time low. Then, the "honeymoon period" ended and I started having increased pain along the top, frontal, temporal, and supraorbital regions of my noggin. But I knew from my first surgery that this wasn't an uncommon occurrence. When nerves are decompressed or cut, part of the recovery process often involves other nerves becoming hypersensitive in response. Kind of a "what the hell is going on back there?" reaction. That made for some tough days (which, I can't really say are over just yet) but the most important thing was that the area around my lesser occipital nerve was ..and still IS...feeling good. That in itself is my greatest source of optimism, especially given that those other regions of my head did calm down with the pre-operative diagnostic block to that nerve. In other words, I have good reason to believe that in time, everything else should start feeling better. 

The steri strips fell off about two weeks later, and here's what this beautiful neck of mine looked like then. Still some inflammation around the incision, but not bad. 

Over the last month, the theme for me has been patience. Of course that doesn't mean I've felt patient or acted patient (sorry, Craig) but I know this recovery just takes time. 

A few weeks ago, I had a follow up with my neurologist, Dr Dodick. It's been an interesting experience navigating this occipital neuralgia diagnosis and occipital nerve surgeries without the full support or participation of my neurology team. I understand the need for more research and more data supporting the efficacy of this treatment, but it's frustrating to realize how little collaboration there is. Peripheral nerve surgery is obviously not the solution for every migraine patient. But I mean, shit, there are A LOT of people whose lives it is saving (yes, saving)...people like me who have exhausted virtually every other conventional and alternative treatment and are left with very few answers and very little hope. Isn't that at least worth paying attention to? 

Anyway, Dr. Dodick advised against continuing with a fourth round of Botox (something we had previously discussed) and against retrying a newer model of the Cefaly device, the Cefaly Dual (something I had talked about how his PA back in November). I first tried the Cefaly back in spring of 2013 without success. This device attaches to your forehead and generates very precise electrical impulses to stimulate the nerve fibers selectively. Dr. Dodick explained that he's actually had some chronic daily headache patients get worse on the Cefaly and then not rebound back. What a treat that must be. 

Pretty confident that it wouldn't make things any worse, he did want me to try the gammaCore non-invasive vagal nerve stimulator a shot though. Currently, the gammaCore is only FDA-approved for cluster headaches but it will be approved later this year for migraines and he's had some anecdotal success using it with patients of various headache disorders. So although no yet covered by insurance (AKA not cheap), we figured it was worth a shot. 

gammaCore activates pain-relieving power through non-invasive vagus nerve stimulation

gammaCore (nVNS) activates your vagus nerve with a patented, gentle electrical stimulation, providing relief from cluster headache pain in a very different way than drugs.1

• The vagus nerve is an important highway of communication between your brain and many parts of the body2
• The vagus nerve plays an important role in regulating pain2

Non-invasive vagus nerve stimulation with gammaCore is believed to help block the pain signals that cause cluster attacks.2,3

• Unlike traditional vagus nerve stimulation therapies, gammaCore stimulates the nerve non-invasively through the skin1
• Avoids many drug-like side effects and the injecting, inhaling, or ingesting associated with medications1
• gammaCore is FDA-cleared and has been used in Canada and Europe for several years4

The gammaCore is supposed to be something you use for at least a month (sometimes more) before really knowing if it's helping, but it became very clear after a few days using it that I wasn't responding well. I had some MAJOR flares in my frontal pain, which seem to subside when I'd been off it it for a week or so. So that's done with. 

So right now, at the six week mark, I'm slowly start easing back into my regular workouts ("take off like an airplane, not a rocket" as Craig said yesterday morning before I practically skipped out the door at 5:30 am to the gym). In physical therapy (and on my own), I'm also working to improve some of the issues I have going on down the chain. I have so much neural tension through my left shoulder and arm that in order to allow for movement of my head, my left levator scapulae becomes over active. As a result, my long thoracic nerve is irritated. Layered on top of my head pain, all of these issues seem overwhelming (at least to me) but ultimately, I know it's all connected (whether to my original injury or just a product of all of the trauma my body's been through in the last 6.5 years. The lower I can get my head pain, the more manageable everything else seems. Like all of life actually. 

Aside from the infrared sauna (which I try to get in daily), I've started getting back in the cold plunge regularly. Cold immersion (including contrast with hot), especially when preceded by short interval sprints (:20 on the bike with pretty high resistance) just seems to give me some better days. I'm not sure if it's a hormonal response or what but I'll take it. 

I also just started taking these Charlotte's Web capsules from CW Simply. I've used Charlotte's Web in oil form before but through a work introduction, Craig recently spoke to a neuroscientist whose primary research focus is using cannabis to treat pain and in his experience, he's found these tablets to be most effective as compared to the various other forms. So, I'm only on day #2 but I'll keep you posted as to whether it seems to help. 

Lastly, I came across this blog post a few weeks ago...written by another CA-based plastic surgeon who performs the same procedures I've had with Dr. Peled. It's titled "Head Trauma, Whiplash, and Migraine Headaches" and it caught my attention for obvious reasons. Since I know that many of the people who land on my blog are dealing with chronic head pain for the very same reasons, I thought it was worth sharing. Dr. Lowenstein provides an excellent explanation of exactly how occipital neuralgia can develop in patients like us. There aren't words to describe just how difficult it is to live with this kind of pain (some of us, for so long) yet still not understand or be be able to explain what exactly is even causing it. 

Thanks to Dr. Peled, I now have understanding, validation, and (almost...I'm getting there) resolution of mine. 

Here's an excerpt below, but it's worth the whole read. 

"...in many cases, it is the second part of the head trauma, the neck whiplash that can be the culprit in ongoing, chronic, or recurring migraines and head pain.  Imagine what happens to the muscles of the neck when head trauma is imminent… the neck’s role in the human body is to keep the head stable.  When there is unusual motion or the body senses that there is about to be trauma to the head, the neck’s role is to tense up and try to prevent the head from hitting anything, and if it has his something, the neck is supposed to prevent the head from bouncing back or hitting something again. 

In these cases, the main stabilizing muscles of the neck become tense and strong and try to keep everything safe.  The forces of the heavy skull and brain moving in one direction while the neck is working hard to stabilize things is what creates the whiplash injury.  Duriare this situation, the tissue of the muscles- both the muscle cells themselves as well as the fascia, or connective tissue, in and around the muscles can become damaged.  This damage can come in the form of micro-stretches or even tears of the muscles or fascia tissues.

The occipital nerves run through the muscles of the neck.  From the level of the spine, the nerves course through and around several muscles including the splenius capitus, the trapezius, and the sternocleidomastoid muscles.  All of these muscles tense up in order to stabilize the head in cases of trauma.  Tightening of these muscles around the nerves is a common circumstance in head trauma, and anyone who has experienced head trauma can describe the sore muscles associated with the days or weeks following the event.  What is actually happening is the same kind of thing we see when we “pull” a muscle- stretching and tearing of the muscles tissue creates soreness, and the muscle is then repaired in time, often with some degree of scar tissue.

Athletes who experience “pulled” muscles often go through physical therapy and massage.  These therapies are meant to re-stretch the muscle tissue and loosen up scar tissue.  But do patients who have a history of “head trauma” go through the same muscle care?  Sometimes, but not often, and not often early enough to prevent chronic scarring.  The neck tissue that is stretched and torn heals with scar tissue and often creates the permanently tight tissue that can compress the nerves going through it.  Tight muscles and fascia, often associated with scar tissue and even chronic inflammation, cause compression to the occipital nerves in both the short and long-term after these head traumas.  Studies have shown that this nerve compression can often be the triggering signal that sends a distress call to the brain, triggering head pain and migraine headaches.

It is no surprise that we often see that patients with a history of head trauma have migraine headaches develop either immediately or shortly after their injury.  While a subset of these patients has primary brain issues that cause short and long-term head pain, many of these patients actually have a condition that is correctable by migraine surgery."