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.