and we wait

Greetings from Houston, TX! (Waiting for our connecting flight to TN.) I was really hoping for immediate relief after my pulsed RF nerve ablation on Thursday morning, so was envisioning this post-procedure update having lots of "!!!!!!!" and maybe even one of these guys ----> :)

So far, I haven't experienced any significant improvements, but we learned on Thursday that's to be expected. I may not have done such a stellar job at the expectation managing I mentioned in my last post. Craig actually had to call the doc to assure me that my unchanged pain levels were normal while I had a mini meltdown from the car upon leaving Biltmore Surgical Center. Unlike the diagnostic injections, which effectively numb the nerve, nerve ablations don't provide immediate relief. According to Dr. Schurgin, I should expect a reduction in my pain over the course of several days, or possibly even weeks. I'll liken my current state of impatience to sitting through a long flight in the very back of a plane, only to land and find that the last few stuffy, sweaty, I-have-to-pee-so-bad-and-how-is-everyone-taking-so-long-to-get-their-overhead-luggage-down-and-oh-wow-that-baby-sure-is-loud moments are the most unbearable. Haha...all joking aside, I'm just grateful that I was able to get the pulsed RF done. We ended up paying out of pocket for it because the pulsed version isn't covered by my insurance, but they billed them anyway just in case (fingers crossed that someone at United Healthcare is doing a half ass job reviewing claims). So I won't know what the final bill is until I hear from them, but Dr. Schurgin charged us $1,800, an 88% discount off his fees (and who says you can't get good deals right before Christmas?).

I do have a bit of increased pain/soreness today, due to inflammation from the procedure, but had some dry needling at PT yesterday to help resolve trigger point formation in the surrounding area. Now it's just a matter of waiting, and (lots) of positive thinking.

All I want for Christmas is...

...a pulsed radiofrequency nerve ablation! And Christmas has come early, my friends. Tomorrow is the big day :)

In my last post, I explained that I was scheduled to receive another diagnostic bilateral medial branch nerve block, this time at C2/C3/C4. That procedure, which I had last Thursday, was more successful than the prior week's block at C2/C3. I recorded up to 70-80% pain reduction in my 3 hour post-injection pain log, which was a lot more encouraging than the 40-50% from the first time around. When we saw Dr. Schurgin for a follow-up on Monday morning, he gave me the green light for the pulsed radiofrequency I had tentatively scheduled for this Thursday, contingent on the approval of Dr. Cohen, the TMJ specialist I would be seeing on Tuesday.

At Dr. Cohen's office (Southwest Pain Management), I had a consultation with Dr. Patel, DMD, who specializes in orofacial pain. Orofacial pain can include temporomandibular disorders, neurovascular pain, neuropathic pain, headaches, etc. As previously described, I wasn't totally aligned with the thought process of the first "TMJ specialist" I had seen, who proposed a treatment plan that would include building up my back teeth in order to change my bite and ultimately, position of my jaw. Despite my annoying jaw "popping", Dr. Patel's examination and review of imaging didn't reveal any significant pathology with my jaw joints or muscles, though. She even recommended I discontinue use of the mouth piece that I'd been wearing to bed, explaining that long-term use could potentially cause a bite change, which could lead to further problems. The fact that she didn't think my jaw issues are a SOURCE of my upper cervical and head pain was a huge POSITIVE in my book, and also confirmed what my PTs have been speculating - that the dysfunction at C2 is likely causing the dysfunction of my TMD joint above. Checking this box off also meant that we can go on ahead with tomorrow's procedure. (High five!)

I included this is a previous post but a little review, if you will...

"Radiofrequency neurolysis is a procedure in which sensory afferent nerve fibers are selectively destroyed with heat produced by radio waves delivered through an electrode. Treatment objectives are to eliminate pain, reduce the likelihood of recurrence and prolong the time to recurrence by selectively destroying pain fibers without inducing excessive sensory loss, motor dysfunction, or other complications. Radiofrequency (RF) neurolysis carries the potential risk of neuritis (nerve inflammation). Histological studies have revealed indiscriminate destruction of both small and large fibers following RF treatment.

Pulsed radiofrequency is thought to be a less destructive alternative to standard RF in that it applies RF energy with a pulsed time cycle that delivers short bursts of RF current instead of a continuous RF flow. By pulsing the electrical current, the needle remains relatively cool (up to 42 degrees celsius compared to temperatures of 60-69 degrees celsius with continuous RF) so that the tissue cools slightly between each burst, reducing the risk of destroying nearby tissue and preventing any long-term damage to the nerve. The reasoning behind this is transmission of impulses across small unmyelinated fibers is disrupted while larger fibers remain protected by the myelin sheath."

Certainly there are still potential risks of the pulsed variation (though neuritis is less likely). With tomorrow's procedure, Dr. Schurgin will be blocking the nerve that supplies my multifidus, shown in red on the image to the right. Impairing my multifidus just reinforces the importance of continued rehab for me, so it's all good. The bottom line, benefit exceeds risk.

I am a little nervous for tomorrow, but really just about the result, rather than procedure itself. I just so badly want it to help and am not sure what the next step is, from a pain perspective, if it doesn't work. So I'm trying to stay positive, but also manage my expectations...or as Craig calls it, staying "cautiously optimistic".

Like I've already explained, the goal of pulsed radiofrequency is to help with the pain. It doesn't correct the biomechanical issues going on in my neck, so tomorrow's result won't change my commitment to rehab, which currently consists of manual therapy with Veronika, ARP-wave therapy and DNS with Jeff, Pilates-based PT with Anna, and a recent addition - some deep tissue massage with a therapist named Todd. It's been a while since I've had much massage, so Veronika and I both thought it would be worth a try. Luckily, she communicated with him beforehand and told him exactly what she needed him to work on (which has been a HUGE relief for me to not have to try explaining everything). I saw Todd three times last week and will have two more sessions with him this week before Craig and I head to Tennessee on Saturday. It's basically impossible to pin point any one variable that's helping the most, because it's really the synergy of all, but I have had a few days here and there of "less than normal" pain in the past week or so. Saturday was the best - I got down to a 3/10 and it felt f-ing awesome, let me tell you. For the first time in a long time, I was focused on something other than my headache in my yoga class and finished off the day with a long mountain bike ride with Mark, Mark, and Craig. My pain has worked its way back up between then and now but it was still incredibly encouraging to know that my body is physically capable of less pain.

I'll plan to post again tomorrow or Friday. Fingers crossed!

post-nerve block follow up

This morning, I had my follow-up appointment with Dr. Schurgin. As I indicated in my last post, I was keeping my fingers crossed that my 30-50% pain reduction in the 3 hours after last week's nerve block would qualify me for the pulsed radiofrequency nerve ablation on the 19th.

After looking at my pain log, Dr. Schurgin explained to Craig and I that he really likes to see over 50% reduction and some insurance companies actually require it to be over 60-70%. This is so frustrating to me because any "pain scale" is so subjective (which he was the first to recognize and admit that the diagnostic process is far from ideal). I was pretty upset this morning because my "return to work" date is scheduled for January 9th, and after factoring in the appropriate notice of leave time (if it comes down to it), I'm realizing that I only really have a handful of days before I need to make a decision. My hope was that we would proceed with the ablation on the 19th and I could potentially be feeling relief by Christmas, not to mentioned early January. So thankfully, while these thoughts ran through my head and I worked on emptying another box of tissues, Craig was able to have a more coherent conversation with the doc.

Here are the takeways:
1. Dr. Schurgin suspects that zeroing in on C2/C3 could have actually been too narrow of a focus. After some poking and prodding at my neck, he proposed we schedule another diagnostic nerve block and this time hit C3/C4 in addition to C2/C3. When Craig asked if that would be different than the C3/C4 blocks I had done in the spring, Dr. Schurgin confirmed that the real value is in the aggregate effect. Luckily, we were able to get the procedure scheduled for this Thursday, with another follow up next week.

2. He also briefly discussed with us the emotional toll of chronic pain and its role in the pain cycle, specifically from a chemical perspective (which wasn't new information to us). Pathways in the brain that are responsible for receiving pain signals use some of the same neurotransmitters (like serotonin and norepinephrine) that regulate emotional function, which is how chronic pain is similar to chronic depression in that can alter the nervous system's function and operate in a perpetual cycle. He strongly suggested that we continue the conversation and that I start researching Cymbalta, an antidepressant commonly used for musculoskeletal pain in conjunction with the emotional effects that accompany it. I get it...and as I've already explained, I fully recognize that I'm not in a position to be close-minded to any particular approach. With that said, I still find this conversation so incredibly frustrating. I know this is completely irrational, but it FEELS like someone is telling me I need to take an anti-depressant because my broken arm is making me upset (not the same, just how it feels).

3. Dr. Schurgin is concerned that I haven't yet properly addressed my TMJ/TMD symptoms, which is perhaps playing a more significant role than we've thought. He referred me to a TMJ specialist that is his "go-to-guy", Dr. Cohen. I'm scheduled to see Dr. Cohen next Tuesday.

A frustrating day for me but as Craig continues to remind me, every step forward is closer to the answer. In the meantime, I'm continuing my rehab with Veronika (saw her yesterday), Anna (yesterday and tomorrow), and Jeff Beran (Friday). I'll write up a summary of that later this week. Here's a little sneak peak at my session with Anna, which included some good ole' cupping to try to open up my intercostals so I could expand my ribs better for breathing (attractive, huh?), followed by a shot of someone who REALLY loves that I am home from work :)

medial branch block diagnostic

Yesterday afternoon Craig and I headed over to Biltmore Surgical Center for my medial branch nerve blocks at C2/C3. We were there for a few hours but the actual procedure only took about 15 minutes. The injections really didn't hurt at all (less than the dry needling I had done that morning with Dr. Beran at PT). Dr. Schurgin explained to me beforehand that I'd be keeping a 3 hour pain log after we finished, recording my "percent improved" at each 30 minute increment. They didn't sedate me as much as the first time I had this done in the spring since the drowsiness can interfere with pain perception but I was feeling pretty groggy the rest of the evening...even stumbled a little when we walked in the house to keep things interesting. hah!

A few funny things that always happen when getting vitals and/or IV (which has been unusually common the last few months):
- Explaining the massive scar going up my forearm makes riding my bike into a tree that much more plausible.
- I have to assure every nurse that despite my resting pulse of 48 bpm, I'm very much alive.

The great news is that my pain definitely went down in those 3 hours. I recorded my percentage of improvement at a range of 30-50%, which tells us that (at least some of) the pain is coming from the facets. We won't know for sure if those numbers justify doing the pulsed radiofrequency until we meeting with Dr. Schurgin on Tuesday. I woke up this morning feeling pretty shitty, but I knew that was coming. Any relief the nerve blocks did provide would wear off after 3 hours and he warned me that bruising from the injection would likely increase my baseline pain. I did go to yoga this morning and was planning on playing tennis after with Tanis (we've been taking a "drill class" at La Camarilla) but had to skip out on that.

Now just looking forward to Monday so we figure out the next step!

how it all began: part 2

This post picks up where the last one (how it all began, part 1) left off, after Fall of 2012. When I started on this post last week, I thought I’d easily bang it out in one afternoon. But 6 days later, I was still writing...asking Craig questions...sifting through doctors notes, emails, and lab results…trying my best to pull all of the pieces together. But now I’m finally caught up to present-day, so all posts moving forward will be much concise and…fingers crossed…reporting more and more positive news!

Winter 2013
Over the course of time, to complement my persistent headache, I was also developing a nagging tightness just between my shoulders blades. Based on my dysfunctional breathing, it made a lot of sense that I was lacking mobility in my thoracic spine. I was still working out as much I could tolerate, but instead of lifting, was doing mostly yoga and a Pilates-based workout at a local studio called The Body Lab. Craig and I were mountain biking every chance we could get, and I had even started racing. The first race of the MBAA 2012 Series was in January and was followed by four more over the course of the next 3 months. (I was able to race in only three though). It's easy to develop poor ergonomic habits on a mountain bike, but I was really trying to maintain ideal posture with extension through my thoracic spine and a neutral cervical spine (which can be a challenge when climbing...my favorite part of riding!) Yikes, just writing that makes me realize how much much worse I’ve gotten in the last eight months because though I am still riding, there’s no way in hell I could race right now.

Having already tried quite a bit of different therapies, I had started exploring some other options. A friend of Craig’s mentioned that he’d had a positive experience working with a myopractor, which I had never heard of before so decided to check out. Here’s a brief summary of myopractics from the website of the practitioner I saw here in town, Ed Sheridan.

“Myopractics is an integrated type of manual therapy developed by Dr. William J. Huls. In its simplest concept Myopractics embraces any modality that restores subtle physical motion. Numerous aspects of bodywork including joint mobilization, massage, acupressure, trigger point, visceral manipulation, and other soft tissue techniques are employed to restore mechanical relationships. The overall approach of Myopractics embraces fundamental principles such as the pelvis being the structural foundation of the body, the bones being a system of levers and fulcrums that the muscles move, the pulses which guide our work, and others that make Myopractics unique.”

I saw Ed for a few sessions. He focused on realigning my facial bones and working on my jaw (with a glove, from the inside my mouth). One day he had me lay on the ground in front of him while he sat on a chair behind me and massaged my face with his feet. Yep, that happened.

But my head still hurt, and my neck wasn’t in good shape either. In addition to my traps feeling hard as a rock, my sternocleidomastoid and scaliness were super tight and knotty. The knots I was feeling are called trigger points, which can form in the muscle and adjacent muscle sheaths (fascia) for a variety of reasons - sometimes as a result of blunt trauma, or repetitive micro trauma, referred pain, or even as a protective mechanism. Trigger points send pain signals to the brain and contribute to this nasty pain-spasm-pain cycle. Over the winter, I started working with another massage therapist from Athletes' Performance, Eric Ford. He worked on my trigger points in an attempt break the spasm, and also did some work on my pecs (with the goal of restoring function and length on the front side of my body to effect what the tissue on the other side of my body was doing). He encouraged me to continue with some chest opening stretches from home, along with using a tennis/lacrosse ball on my pecs. Craig also ordered another self-massage tool off Amazon called the Thera Kane which allowed me to get deep into my upper back.

Since the clinic where I work had opened a few months prior and we were only just building our patient base, I had also been taking advantage of openings in the schedule with acupuncture treatments. Even though acupuncture tends to fall under the umbrella of “alternative” medicine, its really among the oldest healing practices in the world. In traditional Chinese medicine, practitioners insert thin needs through the patient’s skin to help regulate the flow of qi (vital energy) along pathways which are called meridians. Modern research is still learning about the biomechanisms of acupuncture for pain relief - one theory is that it activates opiod systems in the brain that respond to pain. So I was of course open to being a pin cushion…

But my damn headache just wouldn’t go away. When it comes to what I put in my body, I try to keep everything o’natural, so have never been quick to pop pills of any kind…but I was desperate enough to try anything over the counter. I’ll never forget how Dr. Sugarman (clinical neuropsychologist, psychologist, and Director of Applied Neuroscience at Athletes' Performance) responded to my concern about medication, reminding me that riding my bike full speed into a tree isn’t exactly a “natural” experience for the body either. Unfortunately, though, NSAIDs didn’t (still don’t) put a dent in the pain. Work was starting to pick up a bit and days filled with sitting across from patients in health coaching visits seemed to be getting more and more challenging.

In later winter, I had started trying something out at Athletes’ Performance, called Vasper, that seemed to actually be providing some bouts of decreased pain. The company, which is based in the bay area and works with different professional sports teams as well as NASA, created a technology that uses liquid cooled vascular compression to stimulate endogenous growth hormone. Here’s a quick description from their website:

“Vasper’s patented technology is based on liquid cooled compression cuffs that are placed over the body’s upper arms and thighs. The cooled compression cuffs place a gentle compression over the arms and legs, which increases the lactic acid burn feeling in the muscles that is typically experienced only with high intensity exercise. The user then performs exercise using a Vasper enhanced elliptical trainer and custom designed software protocols for 20 minutes. The Vasper experience is completed with a rejuvenating 10 minute cool down period with the user resting horizontally on a Vasper cooling bed.”

Here’s a short video if you want to see what it looks like in action.

So anyway, I was doing a few Vasper sessions per week for about a month or so (while they were testing it at AP) and after most sessions (sometimes immediately, sometimes the next morning), my pain levels were dropping. Was it the boost in growth hormone? The post-workout cooling? We didn’t know, but it sure was intriguing so I started experimenting with the cold plunge at AP too. **Side note: Headaches aside, I’m a total believer in Vasper - I’ve never felt better on my mountain bike as I did while training with it.

After a workout, I would submerge myself in the cold tub (a frigid 50 degrees F) from the chin down for 15-20 minutes. Not the easiest thing to do without an ice tub buddy so if there was no one else out there to distract me, I’d find a Ted Talk to watch on my phone (just the right amount of time). While I was in the water, my pain did seem to go down and sometimes, the relief reappeared the next day too. I then experimented with hot/cold contrast (alternating 30-60 sec in hot tub with 30-60 sec in cold plunge for 10-20 min) but that didn’t seem to have the same effect.

Craig was having an ongoing dialogue with Dr. Sugarman (who’s based in Australia) at the time to get his take, from a neuroscience perspective, on what I was experiencing. He introduced us to something called the central governor theory, which is based on the premise that when in danger, your brain “has your back”. In less laymen terms, your brain will override your body’s physical ability to continue hurting itself and “shut the body down” before you’re able to do serious or permanent damage (by causing PAIN that prevents you from doing whatever is causing the problem). Here’s the series of events that Dr. Sugarman mapped out…

- Firstly, injury with concussive whiplash activates trauma centers with subliminal elements
- Mild TBI+Trauma = central governor activated
- Neglect of whiplash
- Treatment of whiplash
- Central governor remains protective
- Pain produced by central governor to limit functional risk
- Katie continues to risk by training hard **
- Central governor increases warnings to desist
- Cold pain induction
- Pain exceeds central governor threshold
- Central governor resets in relation to stressors, i.e. cold
- Central governor produces more violent reaction to protect organism from perturbation
- Cold reduced: Central governor remains stressed, until habituated to cold
- Sedona reduces stress of cold but resumes watch over relative lower loading as above
- The central governor is now confused as to the source of danger, and hence doesn’t know what to protect against

Hah…my poor brain…only trying to do its job and protect me from danger and now it’s just confused as hell. Eventually, I stopped getting any relief from the experimental hydrotherapy. One thing I was quickly learning was how incredibly complex pain is.


Spring 2013
Meanwhile, Craig had set me up to see another chiropractor in Phoenix, Dr. Jimmy Yuan, owner of Warrior Restoration (who used to do some work at Athletes’ Performance along with his colleague at the time, Dr. Silano.) Though I was struggling to stay optimistic with each new manual therapist I saw, I knew that Dr. Yuan would at least be evaluating me from a more holistic perspective. Over the course of a few sessions, he worked on my occipital region, where I was still convinced the source of my head pain was originating. When I hadn’t made any progress, he agreed that before continuing with more chiropractic care, it was worth getting some imaging.

I then scheduled a consultation with Dr. Sosinsky at Four Peaks Neurology, who ordered an MRI of my head and cervical spine. The images showed a left disc protrusion at the C4-C5 level as well as a mild bulge at C5-C6 and C6-C7. She didn’t think that these abnormalities would be causing my head pain, though (they’re actually not that uncommon at all). I suppose that’s the tough thing with any sort of post-injury imaging…what are you comparing it to? What did your body look like before? Oh, and my head images were totally fine. Big relief (of course) but also frustrating to not have more information to help direct the next steps.

As I’ve already explained, trigger points in the neck can cause referred pain into the head, resulting in “tension-like” headaches (which is how I would describe my pain). Dr. Sosinsky thought that seemed like a logical explanation. In an attempt to break up the fibrotic tissue responsible for the chronic spasm and pain, she thought it would be worth trying some trigger-point injections. Basically this consists of injecting a local anesthetic (Lidocaine) along with an anti-inflammatory (Toradol) into the muscles. She injected several spots along my posterior neck muscles but was more conservative on the anterior muscles (due to risk of getting close to arteries, etc.), though we kept our fingers crossed that this wouldn’t matter.

You should expect relief from this type of procedure within several days to a week later, so you can imagine how bummed out I felt when my pain persisted. Even though more natural, less-invasive treatments are my first preference, I continued researching “conventional” treatment options (I clearly couldn’t afford to be close-minded to anything at this point). I found a pain clinic here in Phoenix (which there are a TON of, by the way…a sad reality) called Desert Spine & Sport Physicians and scheduled a consultation with Dr. Deogun.

Off I went to my visit at Desert Spine & Sport. There’s something really depressing about sitting in a waiting room at a pain clinic. You can see suffering in people’s eyes…sometimes hear it in their breath. This is a generalization, of course, but I know that a lot of people go straight to pain doctors for injections, surgeries, medication, etc. before even trying less invasive treatments like physical therapy or chiropractic…which I think is just so unfortunate.

I’ll summarize my visit with Dr. Deogun with this excerpt from his notes:
“The patient’s history, physical examination and ancillary findings are consistent with chronic neck and head pain following whiplash injury (with no overt head trauma). Suspect cervicogenic headache from facet disease given mechanism of injury, occipital neuralgia, or pain from degenerative disc disease. Myofascial pain is also likely contributing. MRI brain is normal; MRI C-Spine shows mild DDD (facet disease not always evident on MRI with whiplash injuries). On exam she is neurologically intact. She has had extensive PT, trigger point injections, massage, myofascial release, and chiropractics but pain persists.”

Facet joints are the joint structures that connect your spine’s vertebrae to one another. Like every joint in your body, facet joints are lined with cartilage (which enables the bones to glide smoothy over one another) and a capsule that surrounds the joint. The job of facet joints is to provide support, stability, and mobility to your spine. When you get injured (especially via whiplash), the facet joints can “undergo a non-physiologic pinching motion, with compression posteriorly and distraction anteriorly, usually coupled with shear.” As a result of the abnormal stress on the joint, there can be damage to the joint capsule, the articulating structures of the joint, and sometimes intra-articular hemorrhage. You end up feeling pain (in the head) via a medial branch nerve that innervates the facet joint.

Dr. Deogun explained to me that in some cases, the pain can be relieved by actually burning that medial branch nerve. As you would hope, they don’t mess around with burning nerves though (which are called ablations), so they perform a diagnostic test first called a medial branch block. Well shit, sign me up. Oh, and he also gave me a prescription for the painkiller Tramadol, which I decided not to fill after researching it’s adverse effects (the most common of which include dizziness, nausea, constipation, vertigo, headache, vomiting, and drowsiness…ah, ok?)

I went in a few weeks later for the injection, which is performed under fluoroscopy. After sitting in comfy recliner chair and getting an IV filled with something that made me feel just a little bit drunk, I went into the procedure room where Dr. Deogun and another doctor and nurse injected an anesthetic bilaterally near the small medial nerves connected to C3/C4. A few minutes later, I was back in the recliner, where I needed to wait about an hour for my loopiness to wear off before driving myself home. I remember getting upset as I sat there waiting because the relief you should feel after this diagnostic test is supposed to be fairly immediate), and other than a numb neck, I felt nada. Not experiencing an immediate decrease/elimination of pain meant that my facet joints were NOT the source of pain which means I wouldn’t be a candidate for a medial branch ablation. I felt super discouraged, but Craig reminded me that we were just checking boxes off. Every thing that didn't work was one step closer to the solution.

So what now? Dr. Sosinsky and Dr. Deogun had both indicated medication as a logical next-step to pursue. Even though both the trigger point injections and medial branch block injections had been unsuccessful, I KNEW there was physically wrong with my head and having a conversation around how to “manage my pain” with medication was SO unbelievably frustrating. Here I am, an otherwise very healthy twenty five year old…I shouldn’t have pain TO manage.

I had heard good things about a chiropractor, Simon Billingham, DC, who worked out of Sonoran Naturopathic Center (also the office of Craig’s naturopath). I know it probably seems a little crazy that I kept trying chiropractic again and again, but I know from past experience that each chiropractor is different. In addition to ART, Simon is also a licensed practitioner of the Graston Technique, which I’d had a positive experience with post-hip surgeries a few years prior. The Graston Technique consists of using these different stainless steel tools to palpate the body in order to detect fibrotic tissue and then resolve those adhesions at a greater depth and specificity than bare hands are capable of. It’s typically not the most pleasant experience.

I saw Dr. Billingham on a pretty regular basis for maybe 2 months. Sharing my “let’s try everything just in case” mindset, he even started working on my hips. My hips had never been perfect after my labral repairs in 2010, so maybe the lack of mobility was causing some compensatory movement up the chain and contributing to the thoracic tightness and neck/head pain? The treatments we were doing seemed to make a lot of sense…but my pain wasn’t budging. Trying to juggle these appointments (which I was paying for out of pocket) with a full time job and not finding relief kind of forced me to eventually call it quits yet again.

There had to be a reason I wasn’t responding to any of this treatment. Even though I had already seen a neurologist, Craig and I decided it was probably worth seeing another for a second opinion. AP was just beginning to a build a sports medicine and human performance collaboration with Mayo Clinic, and Mayo’s driver of the relationship was David Dodick, M.D., neurologist and director of their Comprehensive Concussion Program. Dr. Dodick, who we soon learned is one of the top headache docs in the world, seemed like he would be our go-to guy.

The initial consult with Dr. Dodick on April 10th was a positive one right from the start. As more time had passed, the “story” I had to tell doctors became longer and more complex, but he sat in front of Craig and I, and listened to every word of it, tears and all. I can’t begin to explain how much I’ve come to appreciate listening skills and empathy as qualities in a health practitioner.

Based on my failure to respond to the extensive soft-tissue treatment and trigger point injections, Dr. Dodick speculated that I may be suffering from Central Pain Syndrome. By definition, central pain syndrome is a neurological condition caused by damage to or dysfunction of the central nervous system, which includes the brain, brainstem, and spinal cord. But he explained that in some cases, central pain can manifest without actual damage or dysfunction occurring. You see, when you’re in chronic pain, your pain receptors undergo physical changes, which result in the pain signals staying “turned on”. He likened the later with an amputee experiencing pain in their amputated appendage, which is also known as “phantom pain”. Dr. Dodick explained that back in the day, before doctors understood the physiological mechanism behind this type of central pain, they used to think those patients had a few screws loose, so to speak.(imagine how horrible that would have been??)

So we discussed the potential treatment options, which could include medication (he recommended an anti-seizure drug called Neurontin/Gabapentin, which is commonly used to treat central pain, along with a few anti-depressants) or Botox injections. I still wasn’t super pumped about going down the medication route, so he agreed that Botox would be a good place to start. I had no idea that Botox was used for medicinal purposes but apparently that was how it started and its cosmetics uses came later.

Botox (or Botulinum toxin) is actually a strong bacterial toxin, created from fermentation of clostridium botulinum. Its specific mode of action for pain relief isn’t totally understood and is likely multifactorial, but it’s speculated that injecting Botox somehow inhibits the release of acetylcholine and neurotransmitters that act on nerve conduction and peripheral and central sensitizations. The procedure was scheduled for a few weeks down the road.

In the meantime, Dr. Dodick also referred me to an Occupational Therapist at Mayo, Jeri Young, for a vestibular evaluation. Even though my post-accident room-spinning nausea was long gone, I was still experiencing some slight dizziness with rapid eye movement or head turning. I saw Jeri a few days later. She didn’t find anything too remarkable in the eval and gave me some gaze stabilization exercises to try at home.

At the end of April, I went back to Mayo for my first Botox injections. There’s a sentence I never thought I’d say… Hah! Dr. Dodick injected quite a few spots to cover his bases. Here’s an an overview of the procedure:

- 20 units in 4 injection sites across the frontalis.
- 15 units in 3 injection sites across the corrugator and procerus.
- 25 units in 4 injection sites in the right and left temporalis.
- 5 units in 2 injection sites into right SCM
- 5 units into 2 injection sites into left SCM
- 5 units into right spenius capitus at rostral insertion
- 5 units into left spenius capitus at rostral insertion
- 25 units in 6 injection sites in the left and right occipitalis.
- 20 units in a total of 4 injection sites in the cervical paraspinal muscles.
- 25 units divided evenly across a total of 4 injection sites in trapezius muscles

He let us know that it may take up to 2 weeks to kick in, so reminded me to be patient. The plan would be to call in one month with a progress report. If I responded well, we could repeat the procedure in 3 months.

The next day, I woke up with miraculously low pain (a 3/10 if I remember correctly). Craig and I were ecstatic…but reality sunk in over the next few days and weeks, as we realized the relief wasn’t there to stay and my pain was back up in its normally high ranges. Maybe the relief was just a fluke? Maybe he just hit the right trigger points with the needles to calm down the spasm? Who knows. I’d have to wait for my follow-up to see what the next step would be.

In the meantime, everyone I’d seen had agreed that there was certainly a myofascial element to my symptoms, and even though I’d tried various manual therapies and soft-tissue modalities, I hadn’t had any actual myofascial release (MFR). MFR is a therapy that helps to improve soft-tissue dysfunction by relaxing contracted muscles, improving blood and lymphatic circulation, and stimulating the stretch reflex in muscles.

To better understand how MFR works, here’s a summary of its underlying assumptions…

- Fascia covers all organs of the body, muscle and fascia cannot be separated.
- All muscle stretching is myofascial stretching.
- Myofascial stretching in one area of the body can be felt in and will affect the other body areas.
- Release of myofascial restrictions can affect other body organs through a release of tension in the whole fascia system.
- Myofascial release techniques work even though the exact mechanism is not yet fully understood.

There are different types of MFR. The direct method is more of a deeper tissue work, much like some of the massage I’d already tried. The indirect method involves a gentle stretch, with only a few grams of pressure, which allows the fascia to 'unwind' itself. The idea is that dysfunctional tissues are guided along the path of least resistance until free movement is achieved.

I started my research and learned that one of the “founders” and world-renowned teachers, John Barnes, PT, had a treatment center in Sedona, AZ (about 2 hours north of Phoenix) so I scheduled an appointment at Therapy on the Rocks for an upcoming Saturday morning. The treatment itself is SUPER passive. It literally feels like the therapist is just grazing their hands over your body…which took a lot of self-restraint on my part to not make judgements and keep an open mind. Recognizing that a single treatment wouldn’t be enough to unlock the puzzle, the therapist referred me to another PT in Phoenix, Peter Podbielski, DPT PT at Complete Physical Therapy, who was an “Expert MFR Practitioner”, trained in the John F. Barnes’ Myofascial Release Approach®. Once back in Phoenix, I started seeing him for treatments a few times per week on my lunch break for several weeks. I had no doubt the sessions were beneficial, especially because he was spending time on the mess that I call my hips…BUT…no changes in pain.

Craig and I had got back in touch with Dr. Dodick, who told us about a device that may be worth trying out called a Cefaly. If you click on the link you get a better visual, but it basically looks like a sci-fi headband that acts as a neurostimulator. It’s the “first cranial analgesic electrotherapeutic device to acquire ISO medical certification proven effective on migraine pain with no side effects.” Granted, my headaches were different than migraines but it was certainly worth a try. Cefaly hasn’t been approved by the FDA yet and is only available in Canada, so Craig immediately ordered one. I used it pretty religiously, 20 minutes at a time, a few times per day. It just felt like a regular TENS stim unit turned up super high. But…I wasn’t feeling any change so stopped after about a month or so.

With summer starting, my work schedule was really starting to ramp up and getting through each day was becoming more and more of a struggle. Many mornings started with me breaking down to Craig, him calming me down and reassuring me that the next step was always going to be there and that I could just leave that up to him to strategize. In between seeing patients at work, I’d lay down on my office floor with an ice pack behind my head. Thankfully, my coworkers were all really understanding but I still felt guilty asking for schedule changes and time off on what seemed like a weekly basis for different appointments. On really bad days, I would just give up and ask for my afternoon patients to be cancelled so I could go home to lay on the couch. It sounds silly but I’ve always prided myself in having a strong work ethic and I was beginning to feel like the bare minimum was all I was capable of doing.

Craig had arranged for me to see a new chiropractor, Dr. Silano at All Star Health Spine & Sports Care (who I mentioned earlier as one of the chiropractors that to work with athletes at AP). At that point, I hadn’t had any actual spinal adjustments in a while and based on the pattern of my pain, I was more confident than ever that there was something going on with C1/C2 and my jaw. So I drove out to his practice in Gilbert a few times per week for about 6 weeks. He focused the adjustments on my upper cervical spine, each of which was followed by some soft-tissue work by his massage therapist, and sometimes some Kinesio taping to help hold my muscles and joints in a more optimal posture. Dr. Silano also made some ergonomic suggestions, including adjusting the height of my computer monitor and changing pillows.

But still pain. Actually, worsening pain. I still hadn’t been able to find anything that provided even band-aid relief, though icepacks had been my go-to. Craig had bought me a cranial ice cap (appropriately coined my attractive “ice helmet”), an acupressure mat, peppermint essential oil to rub on my temples before bed, and Palo santo incense sticks to burn (which is supposed to help headaches).

Summer 2013

I knew that massage alone wasn’t going to unlock the rubix cube, but out of desperation for any kind of relief, I tried another massage therapist, John Hill at Space Massage Studio (who I’d highly recommend).

Around this same time, Craig and I went back to the drawing board and decided it was time to really go after my jaw. Maybe that was actually the source of pain, rather than a symptom? I did some research on local dentists who specialize in TMJ (not all do) and scheduled an appointment with Dr. Enrico E. DiVito at Scottsdale AZ Cosmetic Laser Dentists. After taking some x-rays of my jaw, Dr. DiVito explained that the articular disc of my temporomandibular joint was indeed worn down and he felt pretty confident that could be likely source of my headaches.

He laid out his proposed treatment plan, which consisted of me wearing a retainer-like device for several months that would be adjusted once per week. Eventually, he would build my back molars up with porcelain to change my bite and alleviate pressure that was wearing down the disc. The whole process was going to be somewhere just shy of $5K. Oh, and dental insurance doesn’t cover TMJ-related treatment…haven’t quite wrapped my head around that one yet.

I decided to hold off on the dental plan for a bit. I recognized that there was clearly something going on in my jaw, but I intuitively felt whatever was happening in my occipital area was effecting my jaw, rather than vice-versa. Especially because I had never had jaw dysfunction until after the accident!

Through a work contact, Craig had been connected to another local physical therapist who is highly esteemed for treating some complex medical conditions. Veronika Campbell, PT, MPT, CSCS, NSC, owner of Integrated Manual Physical Therapy, uses manual therapy and visceral mobilization, which is unlike anything I’ve ever experienced (and I think we can all agree, there’s been a lot).

Visceral Manipulation is based on the specific placement of soft manual forces to encourage the normal mobility, tone and motion of the viscera and their connective tissues. Through gentle manipulations, the therapy can potentially improve the functioning of individual organs, the systems the organs function within, and the structural integrity of the entire body. Developed by world-renowned French Osteopath and Physical Therapist Jean-Pierre Barral, VM is used to treat everything from acute injuries, musculoskletal issues, and post-op pain to digestive disorders, women’s and men’s health issues, pediatric issues, and even emotional issues. It’s truly fascinating.

“VM assists functional and structural imbalances throughout the body including musculoskeletal, vascular, nervous, urogenital, respiratory, digestive and lymphatic dysfunction. It evaluates and treats the dynamics of motion and suspension in relation to organs, membranes, fascia and ligaments. VM increases proprioceptive communication within the body, thereby revitalizing a person and relieving symptoms of pain, dysfunction, and poor posture.”

Veronika found limitations in range of motion in my cervical spine and trunk, shoulders, and hip internal rotation. My upper and lower extremity nerve tension tests were positive, with positive misalignment to C1/C2. She also found restrictions in my cranial sutures (crazy!), my scalp, and my suboccipital and cervical fascia. I know it seems a bit complex, but for the first time, what she was “finding” actually made sense to me!

Over the next 8 sessions (spread out over the course of the summer and early fall), which sometimes lasted close to 2 hours each, Veronika would treat the following primary structures:

- Diaphragm to plural fascia and ribcage fascia on L and Phrenic nerve link
- Suspensory ligament of Treitz with esophagus and vagus nerve fascial link at anterior cervical triangle
- Joint mobilization to C1 and C2 for correction of left shear with slight right rotation and anterior shear
- Cranial Sutures L>R, maxillary and trigeminal nerve fascia, orbital fascia with eye tracking for neuro re-ed
- TMJ tracking techniques, sphenoid to palatine and intraoral fascia
- Clavipectoral fascia linked with neurovascular fascia sheath of subclavian to brachial and cervical fascia
- L tentorium cerebelli fascia to temporal bone via mastoid fascia and connection with dural fascia at brachial plexus, femoral nerve, sciatic and pudenal nerve

After each treatment session, I demonstrated (sometimes drastically) positive changes in my range of motion and neural signs. As far as pain goes, my headaches fluctuated with the most positive response to treatment sessions after cranial and cervical structures were addressed in combination with neurovascular fascial structures. Even if my pain levels weren’t quite where they needed to be, we knew my body was definitely making some good changes.

Still searching for that “key” to unlock the next piece, I scheduled an appointment with Jewel Caara, an energy heeler that Craig turned me on to back when we first started dating. Jewel’s work, which includes Spiritual Response Therapy, Spiritual Restructuring, Emotional Freedom Techniques, and Integrated Energy Therapy, may seem a little “out there” for a lot of people (which I get), but it’s actually pretty amazing. I’ve had several phone visits with her over the last few years, which have focused on finding and “clearing” past life energies, subconscious blocks, and negative energies. I’ve always felt more peace of mind and mental clarity after speaking to her. This visit was no different, even though I didn’t have any “aha!” moments regarding my headache.

Still recognizing that there was some neurological dysfunction going on, the next thing that Craig and I decided to pursue was something called Brainwave Optimization® with a local company called Brain State Technologies. Here’s an explanation of the process….

Brainwave optimization can be used for performance enhancement (including athletic performance as well as creative thinking, etc.), plus a host of other “life conditions” like anxiety, stress, depression, poor energy, chronic pain and fatigue, learning problems, inability to focus…and the list goes on. “Chronic pain” is a pretty wide umbrella though, so the success rate is obviously dependent on other variables (in my case, the true mechanism of my pain). I had one full-day and 2 half-day sessions at Brainstate and listened to my CD of “healthy brainwave sounds” from home. Part of the experience was relaxing, but I also found myself getting really frustrated. I would sit in this comfy reclined chair in a dark room with the headphones on and the lights out for a few hours, and every ten minutes or so, the tech, Jeremy, would come in to readjust the position of the electrodes and ask me how I was feeling. I was so sick of not having a different answer to that question that I would eventually end up breaking down in tears. Poor guy.

In early July, Craig and I had taken a trip home to visit my family in Massachusetts (and a much-needed vaca in Maine!) While I was home, I had two visits headache visits scheduled. The first one was with my long-time chiropractor, John Marchese at Marchese Sports Therapy, who I talked about in my previous post. After evaluating me and hearing the progress (or lack there of) I had made since our last visit, he recommended that I try to find a Functional Neurologist in Phoenix.
Functional neurology (AKA chiropractic neurology) looks at the nervous system (brain, spinal cord, peripheral nerves) from a functional or physiologic perspective. It embraces the concept of “neuroplasticity”, which means the brain is able to change its function via different environmental stimulation (which could include visual, auditory, and olfactory stimulation, heat, eye movements, eye exercises, and other modalities may be used to increase brain firing). Dr. Marchese also told me that if he was treating me, he would be using something called ARPwave Therapy (Accelerated Recovery Performance), a proprietary electrical stimulation modality which I’ll talk more about later.

My second appointment in Boston was with a physical therapist and cranial sacral practitioner that my mom was seeing at the time, Felice Lazarus. Cranial sacral therapy s defined as “a gentle, hands-on method of evaluating and enhancing the functioning of a physiological body system called the craniosacral system - comprised of the membranes and cerebrospinal fluid that surround and protect the brain and spinal cord. Using a soft touch generally no greater than 5 grams, or about the weight of a nickel, practitioners release restrictions in the craniosacral system to improve the functioning of the central nervous system.” My visit with Felice was interesting - she spent very little time on my head and most of the treatment on my sacrum, explaining that even though whiplash injuries can manifest as neck/head pain, the sacrum plays a key role (which makes sense - it’s just the opposite end of the spine). Felice also encouraged me to try some cranial sacral therapy back in AZ.

So I found a functional neurologist in Phoenix, Timothy F. Martin DC, DIBCN at Chiropractic Rehab and Neurology. Craig and I were both less than impressed with the visit, which consisted of a recap of my history to date, a few minutes on a Hanoun (BTE) Multi Cervical Rehab Unit, and a few more minutes on a hydromassage bed. Granted, I was a little on edge at this point but I didn’t have the patience for paying to lay on a massage bed.

I wanted to give this a shot though, so found another functional neurologist in town, Dr. Heimlich of Heimlich Institute. From what I could read about him, his approach seemed a little more aligned with what I was looking for. Dr. Heimlich suspected there was some autoimmune issue going on and wanted to start out by giving me a mix of different supplements to try and running some blood tests. I was starting to feel a little overwhelmed because I had also just started seeing Craig’s naturopath, Dr. Brian Popiel at Sonoran Naturopathic Center and just had blood work with him. I decided to hold off on the functional neurology thing for a bit to see what came of working with Dr. Popiel.

Jumping back to the cranial sacral work for a minute - I also found a therapist in Phoenix named Maria Elena Cairo, whose background in body and energy work includes being a teacher of Advanced Cranial Sacral Therapy, a Reiki Master, and a practitioner of Hellerwork and Oneness Deeksha. I saw Maria for just one session. I was open to the “energy work”, but I also found it frustrating because it wasn’t making me feel any closer to a solution.

At Dr. Popiel’s, the first step was to get blood work done. The results didn’t show anything too remarkable, with the exception of some mineral and vitamin D deficiencies. He encouraged me to up my intake of sodium by sprinkling pink Himalayan sea salt on my food (I don’t purposely avoid sodium but just don’t eat any processed foods) but that was the only real dietary change he advised making. Dr. Popiel also had me start a supplement regimen, which consisted of the following: Vitamin D, my Vitamin Code multi-vitamin, fish oil, Detox Essentials (detoxification and hormone balance blend), ADR (adrenal support), Ferronyl (iron with vitamin C), and Merivia (a curcumin phytosome). Were any of these things on their own going to “cure” my headache? Of course not. But the goal here was just to create the most favorable healing environment possible in my body.

Here’s a display of the supplements I’ve taken to date (a few more were added since my initial visit with Dr. Popiel).

I’ve never been a HUGE fan of supplementation but shit, if I can eat like I do and still have deficiencies or imbalances that could be impacting my body’s ability to feel its best, sign me up. With that said, all “natural supplements” aren’t created equal so it’s important to me that I’m using quality brands, free from artificial additives, fillers, etc.

Because my magnesium levels were a bit low, I also started some magnesium IV therapy at Sonoran Naturopathic Center. Magnesium is the most powerful “relaxation mineral” there is. I’ve read that it’s responsible for over 300 enzyme reactions in your body and although it’s found throughout your whole body, it’s predominantly found in your bones, muscles, and brain. Magnesium functions in helping cells to make energy, enabling various chemical pumps to work, stabilizing membranes, and helping muscles to relax.

The first day that I did IV therapy, I also tried out their cryosauna. In whole body cryotherapy, the temperature is set SUPER LOW (-200 to -240 F) and you stand naked in the single person chamber for 1.5 - 3 minutes. It was first used in Japan in the late 70s to treat rheumatoid arthritis, but has since been studied to be used in the treatment of inflammatory disorders and injuries.

So at least I knew that my body had to be reaping these benefits on SOME level. But somehow, my pain continued getting worse. My answer to Craig’s daily question, “what’s the number?” was becoming a consistent 7-8/10.

Since we hadn’t followed through with the dental procedure but didn’t want to discard it completely, Craig set me up to see an an orthodontist friend who works out at AP, Dr. Will Saavedra at E&S Orthodontics. After hearing my story, he agreed that the proposed dental procedure seemed a bit extreme, and that he would prefer to start with a more conservative step. After taking some images, his plan was to have me wear a retainer to sleep that would prevent my back teeth from touching. If taking the pressure off my jaw was the magic key to my pain, then we’d go from there. So I wear the retainer every night and still go back to see him for periodic adjustments. Although it hasn’t seemed to change my pain, I know it’s still a good idea because I think just being in constant pain makes me clench my jaw more.

I went back to Dr. Popiel’s to try another procedure that he thought was worth a shot - neural therapy. Neural therapy is a technique that involves injecting local anesthetics into autonomic ganglia, peripheral nerves, scars, glands, acupuncture points, trigger points, skin and other tissues. In my case, he injected them across the back of my neck, as you can see from this photo below. According to Ferdinand Huneke, M.D., the founder of Neural Therapy, there can be interference fields that cause dysfunction of the autonomic nervous system. An interference field is any pathologically damaged tissue, which acts as a stimulus to the autonomic nervous system. Neural Therapy works by correcting the dysfunction in the autonomic nervous system by stopping the interference field. Once this occurs the organs, glands, and body tissues can function better, eliminating chronic disease condition.

Unfortunately… (ok, you probably know what I’m going to say)…no relief.

Out of desperation (let’s be honest), I decided it was time to re-explore some mind-body techniques. I had done some research on hypnosis for chronic pain and found a psychologist, Dr. Jeffrey Zeig, PhD. This isn’t like on-stage performer hypnosis…it’s really just a way of tuning out the conscious part of your brain as you focus on relaxation and let go of distracting thoughts (similar to meditation). Dr. Zeig led me through a guided hypnosis and then explained how self-hypnosis works (essentially the same process but without him talking me through it). It was certainly relaxing and at this point, I was starting to really recognize and appreciate how stress could exasperate my symptoms (ex: getting busier and busier at work while pain continues to increase) so relaxation techniques were helpful tools to have in my arsenal. A friend, Mark Miller, even came by the house one day when I was home from work and taught me some meditation techniques to use.

At the beginning of August, a friend of ours put us in touch with a new Traditional Chinese Medicine doc, Dr. Ing Wong. Until then, I had only been getting acupuncture sporadically at work, and we thought that perhaps there were some other eastern medicine therapies worth trying too (herbs, etc.) I only ended up having one session with Dr. Wong. He felt there was blood stagnation in my uterus and ovaries and proposed that we start a weekly treatment schedule and explained that the herbal remedies he would prepare would cost (an additional) $375 per month. I left the treatment feeling discouraged and frustrated. The body works as a whole…I get it, but there was something WRONG with my head.

In late summer, I went back to see Dr. Dodick at Mayo. The appointment was actually scheduled for a second series of Botox injections, but based on my (lack of) response to the first round, we decided at the appointment it probably didn’t make much sense to do more. That conclusion brought us back to a conversation around medication. Dr. Dodick was understanding of my resistance to starting on a pharmaceutical drug, but explained to me that if I did decide to try it, this wouldn’t be a long-term solution - maybe 6 months, tops. The goal would be to help break the pain cycle. At this point, what did I have to lose? I filled my prescription for Neurontin (that anti-seizure drug I mentioned earlier) but only ended up taking it a for a few weeks. Not only did it not help my headache, but it made me feel drowsy, lethargic, and fuzzy-headed (not the ideal complement to 24/7 pain).

Fall 2013
Veronika (who I was continuing to see every few weeks), had also referred me to Dr. Brad Williams, MD, who practices medical acupuncture. Since I was making structural changes with Veronika that just weren’t “sticking”, she thought that the acupuncture treatments would help to sustain some of those positive changes. I started seeing Dr. Williams approximately once per week, and he and Veronika would communicate with each other in between sessions to make sure they were they were both on the same page. I was (and still am) so appreciative of all of their extra efforts to help me. I’ll never forget my second appointment with him. While taking my vitals, the nurse asked how I was feeling since the first treatment a week prior. When I told her my head still hurt the same, she said, “Oh my goodness, you poor thing…you’ve had that headache for a whole week?” And…cue the emotional breakdown.

Meanwhile, I had also decided to follow up on a referral from the cranial sacral therapist, Maria, and schedule an appointment with a local osteopathic physician, Dr. Steve Davidson, DO. A little background info first: In addition to providing all of the benefits of modern medicine like drugs, surgery, etc., osteopathy can include the hands-on diagnosis and treatment of disease and injury through a system of therapy known as osteopathic manipulative medicine. Not all DOs are manipulative medicine doctors - many docs who work in conventional medical settings are trained in osteopathy.

Anyway, manipulative medicine is obviously what would make sense for me, so we went to see this guy. According to Dr. Davidson, my body’s inability to heal was likely due to lowered resilience from previous traumas, including my 2 hip surgeries, hardware in my arm, nerve damage, etc. His thought process made sense, but it was the worst doctor’s office experience I’ve had yet. I’ve had my fair share of bizarre bedside manner, but he took it to a whole new level. I’ve never been compelled to provide a doctor feedback, but this is the email I sent him after my 60 minute, $450 consult:

Hi Dr. Davidson,
I appreciate your time last week, though I did not feel the visit was a positive one. Over the past 2 years of seeing various practitioners, all of which have differed in their specific treatments, there is nothing that I value more than a fresh perspective and an objective, realistic approach. At this point in my journey, money isn't really an issue and less than perfect bedside manner isn't something I can afford to let get in my way of healing. With that said, it's also important to me that there is an element of support and empathy, which I felt to be considerably lacking during my visit with you. Given that you are a highly esteem practitioner, I assume that you welcome such feedback.
Best regards,
Katie Dalton

Meanwhile, Dr. Billingham at Sonoran Naturopathic Center had just started using a cold laser and was having some great success with it so asked if I wanted to come in for some free treatments to try it out. Cold laser therapy (AKA phototherapy and low level laser therapy), consists of applying low power laser light to the injured spot. At certain wavelengths, the light can penetrate the tissue and elicit photochemical and photo-biological responses. The absorbed light is supposed to accelerate the formation of ATP (the cells’ energy/fuel source) in your mitochondria. Increasing ATP production is then supposed to increase immune response, reduce inflammation, lower pain, and facilitate the healing process. We tried it for a few sessions, but nada.

In late September, there was a continuing education physical therapy course through the International Academy of Orthopedic Medicine that Athletes’ Performance was hosting. The topic was focused on upper cervical injuries, so Anna and Tony (another PT at AP) generously coordinated my participation as a subject for the instructor, Gail. So on a Sunday afternoon, I sat on a stool in front of a classroom full of physical therapists, trying to keep my shit together. While Craig tried to listen via Skype from Tennessee, Gail examined me while others asked questions to guide the evaluation. Gail thought that my C4-C5 disc may be the cause, or at least a contributing factor. The disc can refer pain to the head and/or down to the thoracic area.

Around this same time, I started seeing another psychologist in Scottsdale, Dr. Bettina Lehnert to try a technique called Eye Movement Desensitization and Reprocessing Therapy (EMDR). Although originally developed for PTSD patients, it can be used for a host of different health issues. The psychotherapist who I work with at the clinic uses it quite a bit, so I was open to trying. The idea is that when something traumatic or distressing happens to you, it may overwhelm your normal cognitive and neurological coping mechanisms. The memory and associated stimuli are inadequately processed and stored in an isolated memory network. The objective of EMDR is to process these distressing memories or thoughts, which reduces their lingering effects and allows you to develop more adaptive coping mechanisms.

My experience with EMDR was similar to hypnosis in that I liked it, it was relaxing, and I felt calmer and more at ease after. But as far as my headache was concerned, I just knew there had to be something I was missing. The search continued.

A friend of Craig’s had referred us to another neurologist in town, Dr. Seth Kaufman. In this friend’s experience with Dr. Kaufman, he seemed to be a bit more open to non-drug treatment options, so we figured maybe he had some ideas that had been overlooked at the Mayo Clinic. That was another water-works visit for me…because one of the first things he said to Craig and I was “You’ve already been to see Dr. Dodick? That’s who I send people to after they’ve seen me.” Dr. Kaufman did give me some new supplement recommendations, though, which included Co-Q10 and Riboflavin (which are both commonly used in migraine prevention). On a quick supplement note, I had also added a few more to my daily regimen: Petadolex/Butterbur (per the recommendation of the MD I work for, Heidi Rula), and Neuroplex (per the recommendation of Dr. Williams).

Dr. Kaufman also gave me a trial pack of Cambia, a nonsteroidal anti-inflammatory that’s used to treat migraine attacks that have already started. I tried it, but not surprisingly, it didn’t help. Dr. Kaufman did say to Craig and I that given my circumstances, I could walk into an ER at any time and they would be able to give me a cocktail of stronger drugs to bring the pain down. Maybe if it was just a matter of breaking the pain cycle, that wasn’t such a bad idea?

Over the next few days, my pain continued creeping up, and finally after a short interval workout on the versa climber at AP one morning, I started feeling like I might throw up from the pain, so off we went to the ER at Mayo. As we were arriving, Craig had gotten through to Dr. Dodick, who had arranged for me to go to the infusion center for a 3 day migraine treatment protocol (granted, I don’t have migraines…but maybe it would still help?). Each day, I received a cocktail of different drugs, including Toradol, DHE, Lorazepam, Ketorolac, and a narcotic pain killer called Promethazine. I had an awful reaction to the Promethazine on the first day - even though I was half asleep, I felt like there were ants crawling all over my body. With the exception of knocking me out and making me super nauseous… no change in my condition. I did, however, realize that you know someone really loves you when they sit next to you in the hospital for 8 hours at a time and hold the bag you’re throwing up into.

About a week later, I woke up on Sunday morning in the worst pain I’d experienced to date. Craig and I went back to ER at Mayo. This time I was given an IV with a different anti-inflammatory. That was a looong day in the ER (for both of us) with little sleep and no pain relief.

Meanwhile, Veronika and Dr. Williams had another PT/craniosacral therapist in their professional network, Carol Ristau, PT, who they recommended I start seeing. I’ve been seeing Carol regularly all fall. She’s been working on the fascial quality around my nervous system related to cranial sutures, alignment of my skull, face, and spine, and the flow of my cerebral spinal fluid.

Veronika had kindly agreed to come with Craig and I to the appointment so that she and Carol could work on me together. The treatment felt super passive - even though I had four hands on me, the pressure was incredibly light (not a bad thing…that’s how this therapy is supposed to be). They both felt like my cerebral spinal fluid wasn’t circulating my brain very well…almost like it was dehydrated. When I left, something really strange happened. It started out with me feeling a bit dizzy. Craig was driving the car home and we swung by Whole Foods to grab some groceries. I was okay walking in but started feeing worse and worse by the minute and pretty soon was telling him not to leave my side. By the time we arrived home, I was in the worst state of pain I’ve ever been in my life. It didn’t feel like normal dizziness though - I could only describe it as the feeling of my brain being scrambled by an electric mixer, which felt as gross as it sounds. Craig got me situated on the couch with ice and helped me focus on breathing until I fell asleep. When I woke up a few hours later, the scrambled brain feeling had subsided but it took me a few days to recover.

After consulting with Veronika and Carol, we speculated that my cerebral spinal fluid must have played a role in the episode. Carol was concerned that I may have had a tear in my dura (the tissue that surrounds the brain and the spinal cord and is responsible for keeping in the cerebrospinal fluid), which could explain a potential leak of the cerebral spinal fluid. My usual headache didn’t match the description of a typical CSF leak headache, but we needed to rule it out. I hadn’t had any imaging done since January, and because my headache had progressed quite a bit since then, it probably wasn’t a bad idea anyway.

I went back to see Dr. Dodick at Mayo to get his take. He explained that the chances of a dural tear were slim, but agreed that more imaging would be a logical next step to rule out anything serious. He ordered both an MRI (which would show a dural tear) and an x-ray. Here’s what the imaging found:

- No evidence of epidural fluid collections (great news)
- T4-T5 has a central disc protrusion (probably not a big deal)
- Minor bulge at T6-T17 and T8-T9 (probably not a big deal)
- No abnormal findings on x-ray (great news)

So we were happy to check off another box…but what next?

Throughout the past few months, many of Craig’s coworkers were aware of what was going on. He would come home from work and tell me how many people (some that I know well and others that I’ve never met) were thinking of me and sending healing thoughts, which I’ve been so grateful for. His coworker’s wife, Cindy, is a nurse practitioner in the Department of Neurosurgery at Barrow Neurological Institute and she had recommended that we see one of the highly respected neurologists that she works with, Dr. Kerry Knievel, DO. It was going to take quite a long time to schedule, so we actually ended up going through Barrow’s ER to get in to see her (another fun 8 hour day in the ER). Dr. Knievel suggested we try some occipital and supraorbital nerve blocks, which consists of injecting a local anesthetic and a steroid around the base of my head and above my eyebrows. It numbed me up for a few hours…but my headache persisted.

Over the course of past few months, Craig had also been in communication with NASA astronaut/flight surgeon, Dr. Yvonne Cagle (who he knew through work). Here’s another perfect example of someone I’ve never met who was going above and beyond to help me. After learning that I’d had a positive response to Vasper months prior, Dr. Cagle had sent us some homemade compression straps to see if we could recreate the same response. She and Craig had also started a conversation around gut-health. With the additional help of Dr. Sugarman, Veronika, and an nutritionist friend, Patti Milligan, MS, RD (who works with one of AP’s partners, Tignum), we started to explore the gut-health connection.

Both Dr. Cagle and Dr. Sugarman suggested that the adverse reaction to one of the drugs I got in the ER could be related to serotonin somehow. The majority of serotonin is produced in the gut, which is also where Veronika had been been working on my fascia. She felt adhesions in the fascia of my lower torso and also felt that my left kidney was bound down significantly, which could also influence my Vitamin D levels (which were low). If it sounds confusing, that’s because it is…but more and more research has been surfacing connecting gut health to brain function. I started working with Patti to figure out if I had some bacterial imbalance that could somehow be impacting my body’s homeostasis (and in turn, ability to heal).

Patti ordered me a GI Effects Profile through Genova Diagnostics. The tests came back without any major abnormalities, though Patti had a few recommendations for me, including adding to my supplement regimen: Olive Leaf, a B-Complex, and an antioxidant complex (NAC) to up regulate glutathione, along with continuing to drink Kombucha.

As my pain had continued increasing into the fall, it was becoming clear that struggling through my full time job wasn’t exactly conducive to the healing process we were trying so hard to progress through. After researching what my options, I decided that a medical leave made the most sense. Through FMLA (Family and Medical Leave Act), I would have a maximum of twelve weeks off. Though unpaid, my employer is legally obligated to hold my job for me while I’m gone. It was a decision I that struggled to make, because a part of me felt like leaving my job meant my chronic pain was “winning”, but it didn’t take long for me to realize that was far from true. Starting in early October, my full-time job was to get better.

Stumped by the lack of progress I was making with acupuncture, Dr. Williams had referred me to a medical intuitive, Jay Caliendo. I would normally be a bit skeptical, but Dr. Williams spoke highly of Jay and if there was even a chance that his insight could shed light on the missing piece of the puzzle, I was on board. The session with Jay happened over the phone and wasn’t quite what Craig and I were expecting. After asking a few basic questions and collecting minimal information about my case, we sat in silence on the phone for about 20 minutes (while he was “reading my energy field”) and then started asking me if I had ever been electrocuted because that’s what he was picking up on. It was probably my own fault for putting so much hope into this, but I was feeling more discouraged than ever.

After speaking to Jay, Dr. Williams explained to Craig and I that even though Jay’s reading seemed a little “out there”, he wasn’t speaking in medical terms, so from a medical acupuncture perspective, Jay did actually provide some helpful information. Honestly, it’s just been difficult for me to appreciate when something is “helpful” when it doesn’t change the way I feel.

Dr. Williams also had another doctor friend that he put me in contact with, a physiatrist named Dr. Porter. Dr. Porter is a physical medicine doc, meaning he’s an expert in treating biomechanical disorders and injuries (ideally through non-surgical means). So Craig and I went to see Dr. Porter at Maricopa Integrated Health System. Right from jump, Dr. Porter disagreed with my initial diagnosis of central pain syndrome (which is good, because so did I). He suspected that there may be some laxity in my alar ligaments, which attach the skull to the C2 vertebra (via the dens) and function to check side-to-side movements of the head when it is turned. If this was the case, the excess motion at C2 could be irritating nerves coming out that area and could easily explain my relentless head pain.

(See the alar ligament in green)

My x-rays came back normal, but of course ligament laxity wouldn’t be detected in a static image. Dr. Porter explained that what I needed was a digital motion x-ray, which is exactly what it sounds like (though I didn’t even know such a thing existed). The next day, I met up with a guy from Motion X-ray LLC in the parking lot of Dr. Williams’ office and we did the fluoroscopy in his big x-ray truck (sounds shadier than it was).

For the first time in a long time, we felt like we were finally on the verge of gaining traction. Before we received the radiology report, we had a few different people take a look at the video, and here was their take…

1. Amy, a PT friend of Anna in Utah watched it and thought C2/C3 was not moving which will disrupt how C1 sits in space. This would be explain headaches and TMJ problems. Trigeminal nerve involvement would be secondary and would explain my vertigo and neurological symptoms throughout my history. Since I didn’t sustain a trauma, that would lead her to upper cervical instability that is "true", but symptoms can appear as such if C2/3 is "locked". Fluoroscope side bending did not show instability. She noted that only a very detailed exam of my upper cervical and cervical spine and trigeminal nerve would be sufficient to clinically prove her conclusion.

2. Carol Ristau, PT agreed that the instability up above was likely due to C2/C3 being “locked”. This confirmed what she was feeling when she worked on me too. One morning, after a treatment where Carol was able to release the fascia around C1, enough to allow her to “lift” my skull off of C1 and reduce some of the swelling, I woke up feeling better than I had in a long time (3/10 on pain scale). Veronika agreed with this suspicion, based on what she was feeling with her hands during my treatments.

The week we got the results back, I had two other appointments already scheduled, one with a spinal surgeon and one with a pain doctor at Mayo, who Dr. Dodick had referred me to. We figured we’d bring the video x-ray to both visits and see what each of them thought too. Dr. Christopher Yeung at Desert Institute for Spine Care (team spine surgeon for the AZ Diamondbacks and LA Dodgers) wasn’t super familiar with reading motion x-rays, but the good news was he didn’t think surgery was appropriate (check). Dr. John Freeman in Mayo’s pain clinic recommended we try facet nerve blocks, which was the procedure deemed inappropriate last spring with Dr. Deogun after I didn’t respond to the diagnostic medial branch blocks.

Ok. More deep breaths…

Finally I went back to see Dr. Porter to see what HE thought of the motion x-ray. Dr. Williams had sent the imaging to a radiologist and Dr. Porter had already reviewed the report, which found a bilateral abnormal lateral subluxation of the lateral masses of C1 on C2, 4 mm on the right and 3 mm on the left. This was suggestive of bilateral alar and accessory ligament damage, left greater than right.

So to sum this all up…
- I have a excess motion at C1/C2 and hypomobility at C2/C3.
- I don’t know if the excess motion above is causing the “locked” vertebrae below, or if the “locked” vertebrae below is causing the excess motion above.
- IF the first scenario is correct and I had true instability at C1/C2, the solution is a tricky one, because unlike muscles, you can’t strengthen ligaments. The first course of action would probably be Prolotherapy, which is an injection technique that stimulates the body’s own cells to repair and replace degenerative tissue. But the instability above is really coming from the hypomobility below, Prolotherapy could potentially make things worse.
- IF the second scenario is correct and the real source is coming from down below, we could try facet nerve blocks to help with the pain, which would be the same procedure I had done in the spring but in a new spot (hopefully the right spot this time). If facet joints were the issue, it would make sense that my headache would be referred pain.

Dr. Porter explained that the facet nerve blocks would the better place to start. He referred me to one of the pain docs he works with at Comprehensive Pain Management, Dr. Schurgin. We felt better about going to see Dr. Schurgin not only because of Dr. Porter’s strong referral, but also because Dr. Schurgin can perform pulsed radiofrequency ablation, which is a bit different than traditional radiofrequency ablation. Here’s a good explanation…

“Pulsed Radiofrequency involves giving short pulses of radiofrequency waves (waves with a frequency of about 500,000 cycles per second, compared to the 60 cycles per second of standard electricity) twice a minute. This technique differs from standard radio frequency procedures in that the tissue is seldom brought up to temperatures above 42 degrees Celsius…Temperatures this low does not damage the cells, so that pulsed radiofrequency works by a different mechanism than does regular radiofrequency. The precise mechanism is uncertain, although there is some evidence to suggest that pulsed radiofrequency toggles ionic channels in the nerve membrane on and off.”

What’s CRAZY is that regular radio frequency is covered by my insurance and pulsed is not. Ahh.

In the midst of all of this, I’ve started working with another physical therapist, Dr. Jeffrey Beran, PT, DPT, ATC at Evolution Physical Therapy (I’ve been seeing him for about 3 weeks now). We found Dr. Beran in our search to find someone who uses the ARPwave, which is what Dr. Marchese, back in Boston, had recommended. Here’s a brief description of ARPwave from Dr. Beran’s website…

“All injury is the direct result of the muscle’s inability to absorb force. The muscles of the body are driven and controlled by electricity and when they are injured, it develops a type of “short-circuit” in the muscles electrical system. ARPwave technology can locate the actual origin of that short-circuit (often not where you think it would be) and then rapidly repair it. By understanding and working in harmony with the body’s muscular system, ARPwave can help your body heal itself, naturally. ARP uses a patented bio-electrical current, simultaneously with active range-of-motion and other exercise techniques, to significantly speed up the body’s natural recuperative ability. ARP is an acronym for Accelerated Recovery Performance, a system comprised of proprietary technology and protocols created by Denis Thompson founder of ARPwave. ARP treatment is indicated for the treatment of all muscle related injuries and post-surgical rehabilitation. Treatment Protocols are usually 10 – 15 sessions over 2 – 4 weeks. The goal of these treatments are to return you to full function as quick as possible without a burdensome home exercise program.”

In addition to using the ARPwave, I’ve also been doing some DNS work with Dr. Beran. DNS (Dynamic Neuromuscular Stabilization) is a rehabilitative approach based on developmental movement principles. It’s about re-establishing developmental movement patterns that infants go through and retraining the body on how to move properly.

Just as Anna and Veronika had been focused on helping me correct, Dr. Beran’s first priority after evaluating me was to help me re-establish the connection between my diaphragm and pelvic floor and also to re-establish dynamic stabilization patterns.

After a few sessions with him, along with sessions with Anna (which have included working on my lower abdominal breathing in maintaining intra-abdominal pressure and forced exhalation “ha” breath to help settle my ribs, scraping, dry needling, and some Pilates rehab) my ribs are looking a lot better. It’s encouraging for me to see visual progress when working with Dr. Beran, Anna, and Veronika because even though I can’t yet feel it in form of pain reduction, I know my body is improving.

So I had my consult at Dr. Schurgin’s 2 weeks ago and go in this Thursday for the diagnostic medial branch block. I’m hoping and praying that I feel relief within 3 hours of the procedure because that means that we can go ahead with the pulsed radiofrequency. Just to be optimistic, I already scheduled that procedure for next Friday.

Even though the pulsed radiofrequency doesn’t address some of my biomechanical issues, but simply takes my pain away, that would still be amazing because..
1. The pain-spasm-pain cycle has a fighting chance to STOP.
2. I can regain some sanity while I continue working with physical therapists to address my structural and movement dysfunction.

If I don't feel relief, it just means that the pain isn't coming from my facet joints. So either way, tomorrow will give more information.