You can do hard things

Back in July, our (then 10-month-old) daughter, Ryan, started a form of survival rescue swim lessons called Infant Swim Resource (ISR). Maybe you've seen one of those videos on Youtube of a tiny baby just floating on their back in a pool? 

There is a parenting philosophy that has resonated with Craig and I from the start of Ryan's life, called "Respectful Parenting." We try, as best we can, to always validate Ryan's feelings. So when she gets upset, whether from an inevitable tumble on the hard ground or because she's REALLY not in the mood for a diaper change, rather than soothe her with a "it's okay, don't cry, you're fine" we try to simply acknowledge how she's feeling without judgement. "I know, you were having so much fun playing and didn't want to stop to have your diaper changed, did you?" It doesn't mean we agree with or share that emotion or that we're even trying to "solve" a problem for for her, rather, that we understand whatever it is she's feeling and we're there for her. 

So during our car rides to ISR every morning (yep, five days per week), I had gotten into the habit of giving Ryan a little pep talk. Despite her love for the swimming pool during the first ten months of her life, she had made it abundantly clear right from jump that she wasn't feeling this learn-to-float business. I couldn't really blame her. They're not meant to be splish-splashy fun pool sessions, but drowning prevention lessons. I'd calmly explain to her the reasons we were doing this; how these skills she was learning would help keep her competent, confident, and safe around water and how I would be there to support her the whole time. She would typically respond with a soft "baa. baa" (translation: put "Baa Baa Black Sheep on and turn that shit up.)

As we'd arrive at the pool and she'd start getting upset, I'd never tell her not to cry. I would just say, "Ryan, you are so brave. I know this is hard. You can do hard things."

This is hard. You can do hard things.  

And she did! It took about 8 weeks but the girl learned to float. And I can't tell you the peace of mind that gives us, as parents, especially here in Arizona where just about every backyard has a swimming pool. 

Anyway, all of this to say that I've had an incredibly difficult last few months of pain and can't tell you the number of times I've repeated that line to myself. Maybe it carries more weight than any all the inner dialogue that came before just because I'd feel like a complete hypocrite for not believing it. 

When I last posted in July, I was getting ready to have bilateral medial branch nerve blocks at C2-C5. I responded fairly well to those diagnostic blocks, which warranted the radiofrequency ablation (RFA). An RFA in a procedure where the physician uses heat from radio waves to treat inflamed facet joints. It's minimally invasive but still performed in the surgery center and because of the location of these specific nerves, requires conscious sedation (i.e. the first nap I've had in a long time). You lie face down on the table and under x-ray guidance, they insert a tube called a cannula into the spine, to the medial branch nerves. These are the nerves that carry pain signals from the facet joints to your brain. Once in place, an electrode gets pushed down through the cannula and heats the nerves with radio waves, blocking their ability to carry pain signals.  

I had my first RFA in September and the second side performed a few weeks later. My doctor had explained that it can take up to eight weeks to really feel the effects, so I stayed hopeful through the fall that this procedure might help, even if just a little. Oh what I wouldn't give for even just a little! 

Unfortunately, that wasn't the case. My pain levels haven't budged, with the exception of a few multiple week-long spikes where they shot above and beyond even my "normal" high levels. Interestingly, you can even see these flare-ups from the surface of my skin. We don't know exactly why this occurs, but hypothesize it has something to do with my body's sympathetic response. Kind of wild.

I can't explain how difficult it is to fall asleep at night, feeling absolutely suffocated by what feels like power drills gnawing through my temples, an unrelenting ache spread deep into my eye sockets, across my forehead, over my scalp, and crammed in to the base of my skull. With my head sandwiched between ice packs (that I'll replace throughout the night as they lose their numbing power), I wake up the next morning with the realization that a new day is starting the exact. same. way. No end in sight. No breaks. No breathing room. But also, a life waiting for me on the other side of the alarm clock. A body that needs to break a sweat; that needs more than anything to stay strong and resilient. A husband who loves me. A dog ready for her walk. A swing to push. Meals to cook. Books to read. A little girl who needs her Mama ... and Mama who needs it all the most.  

This is hard. You can do hard things.

I had a good acquaintance ask me recently whether I was still "getting my migraines." If only my pain was plural. That'd mean it went away and returned. But that'd still mean it went away. I gave her the most appropriate-length update to which she responded "well at least you can still function, right?" Ooof. I mean, I get it - especially when, from the outside looking in, I live such an active and full life. And of course appreciate her intentions/understand that maybe there is no "right" thing to say. But it still hit me like a ton of bricks. Still functioning? What exactly is the alternative? 

Before I get ahead of myself, I should mention that there's essentially no update on my stem cell reinjection. Grand Cayman's borders reopened in early fall but in limited capacity, which doesn't make medical tourism feasible. Dr. Centento's Regenexx office is hoping to reopen in early 2021, but like everything, the timeline is TBD. In the meantime, it's full steam ahead with any and all treatments that could possibly help make things more manageable. 

After reconvening earlier this week with Dr. O'Connor at AZ Innovative Pain (who performed my RFA), we decided the next step to try will be a cervical epidural. This will consist of injecting a steroidal anti-inflammatory (also under x-ray guided fluoroscopy) into the epidural space that surrounds the nerves. Interestingly, this injection actually targets the junction of C7-T1 (where the cervical and thoracic spine meet), and the medication disperses throughout the cervical spine. They use contrast dye so they're able to see exactly where it's traveling. 

I'll have my first of three cervical epidural injections in a couple of weeks and subsequent ones two weeks after each other. Dr. Cooper did explain that they have a cumulative effect. So we'll see how I respond to those and then go from there. 

On the non-interventional side of things, I had an evaluation earlier this week with a Z-Health practitioner. Z-Health is system of rehab based on functional applied neuroscience. Their "neurocentric training" approach can best be understood by these concepts...

3 basic steps are required for the human nervous system to create movement and control posture. The peripheral and central nervous system must: 

1. Receive input signals from sensory systems

2. Interpret the incoming signals and make a decision about what to do

3. Create a motor output 

The vestibular system is obviously one of the most important input systems into your brain and when issues arise, as they commonly do with head and upper cervical injuries, the peripheral aftermath can be significant. 

Though I don't at all have full blown vertigo like I did in the six months following my bike accident back in 2011, I do get dizzy way more easily than I should. And the higher my pain is, the worse it is. Even just watching someone else's movement from a distance can be enough to trigger me. Just the other night, we were sitting at the dinner table and Ryan decided to shake her head back and forth (she loves to feel those flowing locks, which I think grow an inch per week, brush against her face). A few seconds of watching her felt to me what it might feel like for you to get off a spinning ride at an amusement park. Not great, I know. So even though I've seen vestibular specialists in the the past and gone through a range of appropriate assessments and even some ocular therapy (remember when we traveled to the Hruska Clinic in Nebraska for my PRI treatment?), it still seems like this is something we've got to dig into a little deeper. I plan to write more about this after I have a few training sessions under my belt. Or should I say, under my fanny pack? (It's part of the Mom uniform and I love it.) 

So that's it for now. As always, here's to hoping some progress can and will be made soon. And in the meantime, I can do hard things. 

Cayman Stem Cell Update + 9 years later

Man. What a crazy, crazy time we're in. I’ve struggled with when/how/if to even write this post for months now. I think we can all agree that there is nothing quite like the reignition of a civil rights movement AND a global pandemic to shake us to our core. How could I possibly sit here, taking in all that is going on around me, and talk about my chronic headache without just feeling like... I don’t know, a complete ass?

As we all navigate this curveball that is 2020, you’ve probably seen or heard this saying: 

We are not all in the same boat. But we are all in the same storm.

The intent, at least my interpretation of is, is a reminder to simply be kind, compassionate, empathetic; as we suffer together, rally together, move forward together, to acknowledge that our individual experiences, perspectives, and personal adversities are all unique. 

Perhaps if you too suffer from chronic pain, you can relate to my next sentiment, which I’m struggling to articulate appropriately and will likely delete and then rewrite at least twelve more times. But here goes anyway. There has been something oddly familiar to me about the collective anxiety we seem to all be feeling these days. To clarify, I’m not in any way comparing my headache to COVID-19 and the tragic ripple effect it has had and continues to have on so many lives; simply this fog of uncertainty that looms over us and the toll it takes on our...sanity? This unexpected, unplanned-for thing that has the ability to totally disrupt the trajectory of your life, often leaving you with more questions than answers, and forcing you into a state of resilience because...well, what choice do you really have? In other words…

This is really hard. When will it stop being so hard? We don't know. But we just have to keep trying to make it less hard. 

That's grit, right? Keeping at something even when (especially when) there is zero immediate reward - no feedback to tell you that that what you are doing is paying off.

Just as chronic pain adds texture to life, making all the good stuff feel that much smoother, so too does this hardship. Over the last six months, I know I’ve felt more grateful for so many aspects of my life; all the rest of my health and wellbeing, my family, my strong, happy, growing baby girl, my loving and supportive husband, our financial stability and the treatment opportunities it makes possible, than ever before. But I don’t think comparative suffering accomplishes a whole lot. We’re all allowed to feel grateful beyond belief and frustrated as hell at the same time, so long as that hurt and frustration is channeled productively. 

On that note, I’ll give you a break from my stream of consciousness and dive into what’s been going on with treatments since January. 

In my last post, I talked about  Frequency Specific Microcurrent (FSM) and my upcoming appointment with a local physician who uses it in her practice to treat a variety of conditions, including chronic headache. To recap, FSM is a technique for treating pain by using low-level electrical current. A frequency is the rate at which a sound wave or electronic pulse is produced (measured in hertz) and various frequencies can be used to potentially reduce inflammation, repair tissue, and reduce pain. One explanation of how FSM works, according to the Cleveland Clinic, is by potentially increasing the production of ATP - by as much as 500% in damaged tissues! (ATP is the major source of energy for all cellular reactions in the body). I had a handful of sessions with Dr. Sosnowski but didn’t feel any benefit whatsoever. Soon after giving it a shot, I was put in touch with the founder of FSM, Dr. Carolyn McMakin, who just so happened to be traveling to the Phoenix area to teach a course. She kindly welcomed me to participate as a case study. Despite my experience with the treatment leading up to this point, I couldn’t pass up the opportunity to be treated by Carolyn herself, as I knew from talking to a friend who’d seen her that Dr. McMakin’s approach would be much less “cookie cutter” in terms of experimenting with various frequencies, compared to Dr. Sosnowski’s. Not to mention, I’d have the chance to tell my story to a conference room full of practitioners (which ran the gamut from dentists to radiologists to massage therapists to osteopaths) in hopes that maybe someone would possibly have some insights or ideas that have been overlooked. So I drove down to this resort in Mesa for a few nights to play guinea pig. Worth it? Of course, but unfortunately nothing helpful came from it, including the treatment itself. 

In my last post, I’d also mentioned some ongoing conversations with Dr. Cooper in Ohio, specifically around near infrared laser therapy, or photobiomodulation (class 4 laser that uses light energy to penetrate 3-5 cm through the scalp into the neurons' mitochondria for energy (ATP) with the goal of increasing blood flow and help the tissue create new blood vessels). The plan Craig and I decided on was to hold off on a trip to Columbus until after my stem cell reinjection with Dr. Centeno in Grand Cayman in March and in the meantime, I’d try some less-targeted laser therapy here in Arizona. So that’s what I did. I think I had about 10 of those sessions. It certainly wasn’t helping, and actually seemed like the laser was causing my pan to flare even beyond baseline (which is real shitty when baseline itself is so high). My theory was reaffirmed later this spring when, out of sheer desperation to manage really out-of-control pain spikes, I was getting some treatment from my physical therapist. Dr. Cooper had given us some guidance on some more specific laser protocols to try (literally via Facetime while I lay face-down on the treatment table). Again, after a handful of sessions, there seemed to be a definite pattern of pain spikes from the laser. How could something that is simply promoting circulation be making me feel worse?? 

The only explanation we could theorize was that the laser was increasing blood flow to the damaged tissue around my cervical facets and surrounding tissue was responding to that by locking down even more, compressing on all the nerves and blood vessels and causing my head pain to skyrocket. I mean, FUCK. Sometimes there are no other words for it.  

Speaking of that word, let’s rewind back to March. We were set to travel to Grand Cayman so Dr. Centeno could inject my stem cells that were harvested back in November into my damaged C1-C2 facet joints, along with my superficial cervical plexus (a network of nerve fibers that originates from the upper neck spinal nerves and travels to various locations throughout the head. When I say we were set to travel, I mean we were quite literally hours away from take off. Baby gear packed, suitcases zipped, Charlie at the dog trainer’s, while our eyes and ears were glued to the developing COVID-19 news, which seemed to be getting more concerning by the minute (you remember that weekend?). We had got word Saturday morning that my cells had come out of cryopreservation. Our biggest concern was that they’d be unfrozen, the trip would be called off, and we’d lose them. Sure enough, by late afternoon, it was indeed a no-go. LUCKILY, my cells were in good enough condition that they were able to refreeze them, which was a huge relief. Even still, I was devastated. To think that just the possibility of a significant step towards relief was within reach and then had slipped away was such a hard blow. 

Since March, I’ve been struggling so much with my pain levels. I used this analogy recently with Craig: you know that feeling when you’re crouched down until a table or something like that and you stand up and just BONK your head so hard? And the pain kind of takes your breath away for a few minutes and then slowly subsides, maybe leaves a little bump, and then is gone the next day? Well my baseline, normal, 24 hours-a-day feeling is that first minute after you bonk. That sensation is what permeates through my temples, across my forehead, behind my eyes, over the top of my head, and deep, deep into the base of my skull through my upper cervical spine. 

I can’t count the number of times in nine years that I’ve felt my “worst.” Somehow, it always seems to find a way to outdo itself. And whenever July rolls around and I’m reminded that another year has passed (this year marks nine), it takes a real toll on my emotional state. Ryan really has been my saving grace in every possible way.  

A glimpse into what my side of the bed often looks like in the morning… ice, ice, and more ice.

And on so-much-needed brighter note....my girl!

So, when can we get back to the island? As of this week, Grand Cayman announced the reopening of their borders to international travel starting September 1st. This will come in phases and could be complicated a bit by the logistics of required COVID-19 testing, quarantining upon arrival, etc. BUT we’re hopeful that Regenexx will be able to hold their fall clinic in November and that we’ll be Caribbean-bound as soon as we’re physically able. Worst case, we will travel back to Denver for the same-day stem cell procedure, in which the bone marrow aspiration and reinjection are performed on the same day. Without the time to culture, this doesn’t have as great of a chance of helping me, but is certainly better than nothing. 

As we’ve sat in limbo over the past few months, I’ve had some telemedicine visits with Dr. Centeno to discuss my worsening symptoms. Due to my first and second cervical vertebrae being fused, I’m likely experiencing increased pain due to overload at C0-C1 (where the occiput and spine come together), along with damaged occipital nerves (I’ve had multiple nerves decompressed and excised but they do of course regenerate) and damage to the superficial cervical nerves, which is why he’ll also inject that plexus with my stem cells, as mentioned above. We also decided it’s worth injecting my myodural bridge, which is the (somewhat recently discovered) fascial connection between the dura mater (covering the brain) and the suboccipital muscles, namely the rectus capitis posterior major and minor muscles. 

Last week, I had another cervical MRI just so we could have an up-to-date picture of what’s going on and to rule out any structural changes since my 2018 imaging. Fortunately, things look about the same - not great, but also not worse. My Grabb-Oakes (a measure of how far the odontoid process is encroaching into the upper spinal canal) is still at about 12 mm (anything above 9 is considered abnormal). My clivo-axial angle (CXA), or the measurement of the angle between the inside front on the bottom of the skull and the back of the dens (C2) is 127 (anything below 135 degrees is considered pathological). 

I’ve also recently begun seeing a new pain physician locally to explore some “in the meantime” treatment options. Craig and I saw Dr. O’Connor at Innovative Pain and Wellness just a few weeks ago (our first time out together alone since March...so romantic!). From a minimally-invasive procedure standpoint, it’s hard to imagine that there’s been any stone left unturned, but I was especially interested in learning about stellate ganglion blocks, which have been known to help with sympathetically-driven pain (and they’re one of the only nerve blocks I haven’t had). With such a long and complex medical history, it can be incredibly overwhelming to step into a new doctor’s office, but Dr. O’Connor was super helpful. He read (actually read) through ALL of my notes, which I always include as an addendum to new patient paperwork. We talked through it all and he offered an approach that Craig and I were immediately on board with; basically to take a step back and try treating me like a patient who had come in to see him seven or eight years ago presenting with these symptoms. Has some very basic step been overlooked? Or is there something very basic worth revisiting, given how much time has passed and how my anatomy has of course been altered with all of my surgeries? Ironically, it turns out I was a patient at his previous practice back in 2014 and the first step we’ve decided to revisit next week - medial branch nerve blocks - was a procedure I had there. Medial branch nerves supply the facet joints, so the goal of these blocks is diagnostic; an anesthetic is injected to help determine the potential source or at the very least, contributor of pain. If the blocks yield a positive response in the two hour window post injection, the next step would be a radiofrequency ablation. This is a longer lasting procedure, in which heat generated from a radiofrequency current is used to cut the nerve tissue that’s sending pain signals to the brain

In reading back through my own blog posts, which (not surprisingly), are much more thorough than my actual medical records, I had reported no improvement on my left side and maybe a tiny bit of improvement on the right (but not enough to warrant additional steps).  I’d actually had a pulsed radiofrequency ablation on my medial branch nerves with another pain doctor  PRIOR to those failed diagnostic blocks at Dr. O’Connor’s old practice, which obviously didn’t help. But the RFA that Dr. O’Connor would perform uses heat to cut the nerve, which is more effective than a pulsed RFA (which uses cold to stun the nerve). If your brain is spinning reading this, just imagine mine. 

So that’s the plan for next week: a bilateral medial branch nerve block at C2-C5. Depending how I respond, we’ll decide how to proceed. If an RFA isn’t warranted, we’d consider injecting PRP into my C1-C5 facet joints, a cervical epidural, or a C2 dorsal root ganglion block. 

I joked last night that now we’re just at the point of recycling back through old procedures, which seems kind of depressing, but I actually do feel it’s the smart course of action. My head and neck have been through so much over these last few years that it feels good to have a bit of a fresh start. I’ll post an update after next week’s blocks! 

As always, thanks for reading and for all of your support.

Stem Cell Update, Motherhood, 8.5 Year Summary, Post-Concussion Syndrome + New Treatments

Doesn't that title just have such a nice ring to it? 

Hello! I've missed you! I've been wanting to catch you all up on here for a while now but it turns out that finding big chunks of time to sit down and write can be tricky with a new baby. Who knew? So, I've resorted to a new approach: type like a madwoman in 15 minutes increments until this post is complete. Apologies in advance if it reads as choppy as it was written! 

Speaking of that newborn life...(before I get into the most recent updates, including a recap of our trip to Grand Cayman in the fall for my bone marrow aspiration and some new treatments on the horizon)...

Last time I posted was in March 2019 and I was four months pregnant. Today, our baby girl, Ryan Grace, is four months old! Wow. What a whirlwind it is has been, in all of the best possible ways! She's a strong, healthy, happy babe with bright blue eyes and a full head of hair. Craig and I (and Charlie) are so deeply in love. 

Has my head pain made new parenthood extra challenging? In some ways...yes, absolutely. Without a doubt. But you know how sometimes a light gets turned on in a room that you didn't even realized was dimmed? That's the best way to describe it. 

That being said, the entire journey into motherhood has been such a stark reminder of just how severe my physical pain has become over the last 8.5 years. Truth be told,  I loved being pregnant. I loved that I was able to grow and nourish Ryan; to witness and appreciate this ultimate capability of my body...a body I had mounting reason to otherwise resent. 

The hardest part of it all? My head, unequivocally so. The real kicker here though is that pregnancy didn't actually make it worse. We're talking just baseline pain. Perhaps a blessing in disguise (or a silver lining? or a desperate grasp at optimism?) was my tolerance for discomfort. When I'd hear others mamas-to-be lamenting the physical struggles of pregnancy, it reminded me that "oh right, most people don't feel unrelenting pain every second of the day." I was smart about it, for sure, but I was able to maintain my daily 6am EXOS workouts through the entirety of pregnancy. I even lifted the morning before my due date, going into labor that night (which I also credit a very easy postpartum recovery to). But even so, I went to sleep every night with two icepacks situated on each temple...just as I've done every night before and every night since. 

And I don't say any of that to minimize the challenges of growing, birthing, or raising a human. Clearly that shit is hard. But, "hard" is all relative, isn't it? 

Even as I approached my unmedicated labor and birth, my greatest fear was not the pain of pushing a baby out of me. I was afraid of an ungodly spike in my head pain, similar to my experience with my Topomax-induced kidney stones-turned blood infection that landed me in Mass General several years back. It seems that when my body is under any kind of extreme stress, it takes my headache from bad to so much worse. 

And it sure did! Forty hours of labor took an incredible toll on my head. But for the first time, I was experiencing secondary pain that carried with it something unfamiliar and magical: a light at the end of the tunnel. Holding Ryan in my arms. That made getting through it, headache and all, worth every ounce of agony. 

Side note, if you or any expecting parents you know could benefit from this nugget, check out Evidence-Based Birth! Having so little control over my pain levels twenty four hours a day, it was important for me to eliminate, or at least mitigate, as many stressors as possible throughout pregnancy and childbirth. Craig and I wanted to feel informed and empowered to make the best decisions along the way; decisions that aligned with our values and were rooted in evidence-based medicine (which surprisingly, is not always reflected in standard of care in most U.S. hospitals). Over the last decade, we've learned the importance of advocating for yourself as a patient and being a smart consumer of healthcare. So Craig and I took that class early on and feel it was instrumental in preparing us for a natural childbirth. We really can't say enough good things about it.

So, now I'm on the other side of the "fourth trimester." Days - even the ones that feel infinitely long - morph into weeks that just continue flying by. Craig and I are finding our footing as parents, our girl is thriving, and I'm looking ahead to my upcoming treatments with a renowned sense of hope...and let's be honest...plea to the universe that I can finally gain some traction on my quest for relief. 

Craig is such an incredible Dad, just as I knew he would be. Though I don't recommend chronic pain as a prerequisite to parenthood, my headache journey has made Craig and I such a rock solid team. He is hands down, the strongest, most loving, supportive partner I could ever ask for. This little lady sure is a lucky one. 

So before diving in to what I'm currently doing and have scheduled for the coming months, I thought it might be helpful to include a summary to date. Since I've been communicating with a few new practitioners over the last month and even revisiting some "previously checked boxes," I've found a step back (because 8 years, holy shit) to be helpful. 

Here goes...

January 2020 

I have been suffering from a severe and intractable 24/7 headache for the last 8.5 years following a mountain bike accident. The bike wreck was non-contact in nature. I attempted to ride over a tree that had fallen across the trail but my front tire hit the tree, my bike immediately stopped, and I was pitched off to the side. I did not go over my handlebars and did not hit my head. I know understand the mechanism of injury to be more whiplash in nature. The day following the wreck, I developed severe vertigo and vomiting, which lasted about a week. The vertigo continued, especially with rapid head movement, but resolved gradually over the next six months.

A few weeks after the initial bike accident, I started developing neck tightness and intermittent headaches which increased over time in frequency, length, and severity. I also developed a significant TMJ popping after the accident, which has since resolved. My headache progressed to 24/7 pain in October 2012. The pain covers my entire head, including my occipital, temporal, sphenoid, frontal, and supraorbital regions. I have always felt that the pain has been driven by something in my upper cervical/lower occipital region. On a scale of 1-10, my “normal” pain ranges from a 6-9 and has become progressively debilitating over the past several years. I stopped working in 2013 due to my pain. 

At this point I have seen over 150 practitioners of varying disciplines:

• Physical Therapists
• Neurologists
• Spinal Surgeons
• Neurosurgeons
• Pain Management Doctors
• Naturopathic Physicians
• Osteopathic Physicians
• Neuro-optometrist
• Dietitians
• Massage Therapists/Soft Tissue Specialists
• Chiropractors
• Chinese Medicine Doctors
• Psychologists
• Mind-Body Practitioners
• Functional Neurology Chiropractors
• Dentists/TMJ Specialists
• Orthodontist
• Energy healer
• Medical Intuitive

I have tried a myriad of therapies, none of which provided any repeatable relief:

Medications, including 

• NSAIDS
• Gabapentin
• Topamax
• Lymbril
• Cymbalta
• Benzodiazepine
• Dilaudid
• Toradol
• Zofran
• Cambia
• Miloxicam
• Tramadol
• Tizanidine
• Methylprednisone Dosepack
• Migraine infusions
• Ketamine infusions
• Medical marijuana
• Lose Dose Naltrexone (LDN)
• Magnesium infusions
• Butterbur
• Gliacin
• + tons of supplements

A host of non-invasive treatments, including...

• Cefaly migraine device
• Vagal Nerve Stimulator 
• Eneura Transcranial magnetic stimulation
• Corrective Exercise
• Manual Therapy
• Craniosacral Therapy
• Brain Integration therapy
• Biofeedback
• Immobilization (soft and hard neck collars)
• Myofascial Release
• Active Release Technique (A.R.T.)
• Scraping
• Trigger Point Release
• PRI Therapy (Postural Restoration Institute)
• Ozone Infusions
• NUCCA Chiropractic
• Anti-inflammatory Diet
• Ketogenic Diet
• Atlas-Orthogonal Chiropractic
• Gravitational Pattern Alignment (GPA) Chiropractic
• EMDR
• Craniosacral Therapy
• Eastern Acupuncture
• Western Acupuncture
• Cupping
• Dry Needling
• Ultrasound
• Neurofeedback
• Cold Laser
•  Infrared Sauna
• Hypnosis
• E-stim
• Hyperbaric Oxygen Therapy
• Cryotherapy

And a number of more invasive procedures, including:

• Botox injections
• Trigger point injections 
• Prolozonetherapy
• Prolotherapy
• Platelet-Rich Plasma Therapy (PRP)
• C1 nerve root block
• Medial branch nerve blocks (bilateral c2-c7)
• Pulsed radiofrequency medial branch nerve ablation- bilateral c2-7
• Dorsal root ganglion block
• Sphenopalatine blocks
• Occipital field block
• Supraorbital block
• C1/C2 fusion and craniectomy 
• Occipital nerve decompression/excision surgeries 

Up until 2017, the only definitive diagnosis I'd received was from Dr Joel Frank, a neurosurgeon in Tampa, FL. He identified compromised alar and transverse ligaments with an upright MRI and severe C1/2 instability with a digital motion x-ray. The DMX showed 7.5 mm of excursion on my right side and 10 mm on the left. Also included in his findings was cerebellar tonsillar ectopia and C1 capsular synovitis with associated compression on my brain stem (which was thought to be restricting cerebral spinal fluid flow).

In 2015, Dr Frank performed a C1/2 fusion and craniectomy. Two 4 mm diameter titanium screws were guided from the insertion points to connect C1 and C2. Two square cm of bone from my occipital skull base were removed. In addition to the screws, they also added bone matrix material (with stem cells from a donor), directly on C1 and C2 to help create a bony fusion. He had performed the procedure on 150 patients with similar histories and imaging as mine with all but one experiencing a reduction in symptoms, but unfortunately, I didn't get any relief from the procedure. I have completely recovered from the surgery with no activity limitations, but since the surgery, my pain has gotten progressively worse.

My neurologist at Mayo Clinic (Dr David Dodick) has always believed my pain to be due to central sensitization, but I've always felt very strongly that something is still wrong in neck. I can point to specific spots on my neck and the base of my skull where I feel the pain is coming from.

In 2017, I saw a plastic surgeon in San Francisco, Dr. Ziv Peled, who specializes in the treatment of occipital neuralgia headaches/migraines with peripheral nerve surgery. After a very positive response to a series of diagnostic occipital nerve blocks, I underwent a decompression of both my right and left greater occipital nerves, right and left lesser occipital nerves, and an excision of both right and left third occipital nerves. A few months later, I underwent excision of my left lesser occipital nerve. Unfortunately, my head pain persisted, along with what can only be described as a chronic tightness/spasm throughout my neck (specifically my splenius capitis, semisplenius capitis, rectus capitis, and obliquus capitis).

In 2018, I traveled to CO to see Dr. Centeno at the Centeno-Schultz Clinic (founders of Regenexx). He performed a series of blocks (under guidance) in my CO-C1 and C1-C2 facet joints and along with review of my updated DMX and physical exam, determined that there was clear damage to my C1-C2 facet capsules (the fluid he injected leaked right out of the joint space). I soon returned to CO to have Dr. Centeno perform PRP injections into those joints as a first step. During that procedure, the leaky joints had started to fuse (likely as a result of the anti-inflammatory included in he diagnostic block, which was a good thing). Unfortunately, the PRP didn't provide relief so we decided to move forward with a cultured stem cell procedure. I had to take a big break before beginning treatment because I (thankfully!!) got pregnant in 2019.

In November 2019, I traveled to Dr. Centeno's practice in Grand Cayman, where, unlike in the U.S. per some wonky FDA regulations, he's able to culture stem cells for longer than a single day (making them more potent and effective). The purpose of this first trip was just to extract the stem cells via a bone marrow aspiration in my hip. After being isolated from the bone marrow, they're cultured to larger numbers and after the culturing process, are thoroughly tested for quality assurance, including testing for sterility and karyotype analysis to ensure they're safe and healthy for reinjection. 

So off we went to the Caribbean. Ryan traveled like a champ, earning her first passport stamp at just seven weeks old! The procedure wasn't bad at all. I opted for just a local anesthetic since I'm breastfeeding and didn't want to deal with anything else passing through my system. The only real discomfort I felt was some bone soreness a few days after (small price to pay). 

Craig, Ryan, and I will head back there in March for the actual treatment. Dr. Centeno will reinject my stem cells into my C1-C2 facet joints, along with my superficial cervical plexus. To summarize Dr. Centeno's explanation of its relevance in chronic headache patients: the superficial cervical plexus is a network of nerve fibers that originates from the upper neck spinal nerves. It exits the body behind the sternocleidomastoid muscle (SCM) and travels to: 

1. Back of the head - the plexus gives rise to the lesser occipital nerve 

2. Side of the neck - the transverse cervical nerve also comes from this spot 

3. Near the collar bone - the supraclavicular nerves also come from here 

4. Ear/front of ear the back of the temple 

Irritation of the superficial cervical plexus can contribute to pain in the back of the head, pain in the side to front of the neck, and collar bone area pain. The plexus can become irritated by an overly tight SCM, as a result of injured C1-C2 facet joints. Story certainly checks out for me, so worth a shot (pun intended) to include it in this treatment. 

Here's a visual I found helpful. (source) 

Now for some additional developments. 

Earlier this month, thanks to the referral of a tenacious fellow chronic pain warrior-turned-friend, I consulted telephonically with a new physician in Columbus, OH, Dr. Cooper. At Dr. Cooper's practice, NeuroRadiance Health Initiative, he uses an integrative approach to treat patients suffering from a variety of neurological issues, from neurodegenerative disease to traumatic brain injuries and other headache/migraine conditions. 

Dr. Cooper underwent a thorough review of all of my neck and brain imaging to date and saw some things that have never been called out before. Most notably, he believes there is thinning (not atrophy) of my brain's parietal cortex. In other words, the MRI signal that is coming from the existing parietal cortex is decreased with respect to normal, but the volume of tissue and cortex there is okay. The theory here would be that there is less blood flow to these areas of my brain than the other brain regions and thus it shows up differently. This gives us reason to believe that although I may not have hit my head on an outside force in that bike wreck, my brain very much hit the inside of my skull pretty damn hard. This is essentially (at least in part) a post-concussion condition. With that said, Dr. Cooper believes my current symptoms could very well be a combination of a traumatic neck injury (which I've known to be true) AND a traumatic brain injury. And because I've never struck the perfect balance of treatment for both, perhaps that is why I've never gained any real traction in my recovery. 

One of his primary treatment modalities is near infrared laser therapy, or photobiomodulation. This is a Class 4 laser that uses light energy to penetrate 3-5 cm through the scalp into the neurons' mitochondria for energy (ATP). The goal in treating specific areas of the brain is to increase blood flow and help the tissue create new blood vessels. 

I'm still learning about how this all works and its potential application for me, and still consulting with Dr. Cooper (who has been incredibly generous and resourceful with his time), but here's his overview of how photobiomodulation can decrease inflammation and improve pain levels: 

Reduces Inflammation

PBM is a particularly powerful anti-inflammatory agent because it affects the inflammatory process in 3 different ways:

1. Increases certain components of the inflammatory cascade (macrophages, lymphocytes, neutrophils). This accelerates the process of inflammation which in turn leads to more rapid resolution of inflammation
2. Increases levels of the powerful anti-oxidant Superoxide Dismutase (SOD) in living tissues, which helps resolve high levels of inflammatory free radicals that contribute to the pain and severity of inflammation.
3. Decreases Interleukin-1 and other agents (cytokines) responsible for producing and prolonging inflammation

Pain Relief

The reason PBM is so effective at decreasing pain and has so many clinical studies confirming its efficacy against pain of many different types from many different causes is because it works against pain through FIVE different mechanisms:

1. Decreases bradykinin – this decreases overall nerve sensitivity and ’pain pathways’
2. Stabilizes and normalizes ion channels that become ‘out of balance’ and contribute to pain
3. Releases endorphins – the body’s natural analgesic
4. Releases enkephalins – related to endorphins and contributes to pain relief
5. Blocks synaptic pain signals – decreases sensitivity of many types of nerve fibers In order for photons of light energy to have biological effects, they must first be absorbed by biological/living tissues.

Of course, there's no guarantee this will help me, but given that my current symptoms could, at least in part, still be driven by post-concussion syndrome and considering how low-risk/non-invasive the therapy is, how could I not try? 

In addition to treating my brain, it could even be quite beneficial to target to my upper cervical spine, where those damaged facet joints are getting reinjected. In fact, there's even research showing laser application to significantly increase in proliferation in vitro to the mesenchymal stem cells (MSCs) isolated from bone barrow or cardiac stem cells." In other words, the laser helps activate cells to create the right kind of environment for the stem cells to succeed in. No plans have been finalized yet, but we're thinking it'll make the most sense to travel to Ohio AFTER my reinjection for a series of treatments with Dr. Cooper. Logically, that seems to make the most sense to maximize my stem cell treatment. We'd stay there for a week and get in two treatments per day for five days before reassessing future treatment. 

Through all these discussions, Craig and I decided, just sort of as an experiment, to try some class 4 laser treatments here in town (at Arizona K-Laser Neuropathy Center) while we wait for March to roll around. I have been treated with this kind of laser before in physical therapy, but we figured a series of concentrated sessions (right now, 3 per week) would be worth a shot. This doctor has been treating just my general c-spine area; it's not a targeted brain-approach like it will be with Dr. Cooper. 

And there's one final therapy that I'm just beginning to explore right now, called Frequency Specific Microcurrent (FSM). This was another referral from the friend mentioned before, who recently was treated by the founder, Dr. Carolyn McMakin, with some really positive outcomes. 

Microcurrent is a technique for treating pain by using low-level electrical current. A frequency is the rate at which a sound wave or electronic pulse is produced (measured in hertz) and various frequencies can be used to potentially reduce inflammation, repair tissue, and reduce pain. One explanation of how FSM works, according to the Cleveland Clinic, is by potentially increasing the production of ATP - by as much as 500% in damaged tissues! (ATP is the major source of energy for all cellular reactions in the body). 

It's a modality used by chiropractors and physical therapists but what I'm learning is that different conditions (including post-concussion syndrome and facet joint injuries) require very specific frequencies and protocols so it seems like it's worth seeing someone who has a high level of training and experience with those. I'll plan to dedicate an upcoming post to this soon because I've only had a phone consultation with a local physician, Dr. Sosnowski, and am scheduled to see her for my first treatment in a couple of weeks. In the meantime, I'll plan to chip away at some literature I have access to: two publications written by Dr. McMakin - Frequency Specific Microcurrent in Pain Management and her more patient-geared book, The Resonance Effect: How Frequency Specific Microcurrent in Changing Modern Medicine. The latter was recommended to me by Dr. Sosnowski, as she herself suffered from chronic headaches (also after a mountain bike accident!) and is a case study in the book. Pretty wild, huh? I'm really looking forward to seeing her. 

Okay, nap time is ticking away and Ryan's music class departure time is fast approaching so time to wrap this up. As always, just doing my best to piece this ridiculous puzzle together. One day at a time. I'm hopeful that sharing it can help someone else along the way, as others' stories continue to do for me.