Regenexx Cayman Update

Friends! I have EXCITING news!

As of last Friday afternoon, my mesenchymal stem cells...the ones that were aspirated from bone marrow in my pelvis in November of 2019, cultured, and cryopreserved in a lab on a Caribbean island for the last 2.5 years...are INSIDE my body. Inside my body getting to work to heal and repair damaged tissue that (fingers crossed) will ultimately help my head pain. 

Before I get into all the details, let me take a step back.

Way back in fall of 2018, Craig and I traveled to Colorado to see Dr. Centeno, founder and chief medical officer of Regenexx. Regenexx is a world leader in the field of orthopedic regenerative medicine based on scientific publications (Regenexx physicians have published over 44% of all orthopedic stem cell research) and is arguably the world's most advanced platform for in-office interventional orthobiologics. Dr. Centeno diagnosed my damaged facet joints via physical exam, MRI, digital motion x-ray, and x-ray guided blocks. He injected my facets with a low-dose cartilage-friendly anti-inflammatory + anesthetic, and could see it leaking straight out of the joint capsules. The damage was obvious. 

(Here's a little visual reminder of what the facet joints look like)

To help my facets, we started by injecting PRP (platelet-rich plasma therapy) into those joints, which yielded no relief. 

At that point, treatment with Regenexx was paused for a bit while I began the journey that is fertility treatment. They were resumed shortly after giving birth to Ryan. In November 2019, when Ryan was just 7 weeks old, the three of us flew to Dr. Centeno's Regenexx clinic in Grand Cayman. The reason we decided to skip a stem cell procedure in Denver and head straight his clinic overseas is because...

The procedures he performs in Colorado are same day (Regenexx SD), meaning the cells must be extracted from the body, cultured, and reinjected into the body all in the same day. Anything beyond that, and the FDA classifies those stem cells as a manufactured drug. In Grand Cayman though, they're not legally bound to the same time restrictions. Regenexx-C is able to culture those cells for an extended period of time. After the cells are extracted from the bone marrow aspirate, cell biologists culture-expand your stem cells, closely monitoring their health and growth rate. The end result yields up to 1,000 times the number of stem cells compared to other procedures. Once the culturing process is complete, samples are sent to an independent lab for sterility testing and karotype analysis (to ensure the cells haven't acquired any genetic abnormalities during the process). 

It's essentially the gold standard of stem cell treatments. And given the complexity of my condition and considering that either treatment is a huge out of pocket expense, it's just always made more sense for us to bypass the same-day U.S. procedure and go straight for the one that has the greatest chance of helping me. 

So if you've been following along for some time, you know that I had my BMA (bone marrow aspiration) in November 2019 and was scheduled to fly back in March 2020 for reinjection. Because you are a resident of planet Earth, you also know what happened in March 2020. Travel shutdowns to the island happened literal hours before our flight. Our suitcases were packed at the front door when we got the phone call. It was devastating. Of course at the time, I don't think anyone could have predicted it would take another 24 months for restrictions to lift. Grand Cayman is such a small island. Despite their local economy's reliance on global tourism, they couldn't afford to let Covid in. 

When we finally got the green light to book this trip, the island was in a phase of reopening that precluded those unvaccinated from entering (even children who are not yet eligible). Since that meant Ryan wouldn't be coming, Craig and I decided that it made the most sense for the two of them to stay home while my parents would fly in from Massachusetts to meet me. 

Back in February, Grand Cayman entered their next phase, allowing unvaccinated children to enter with their vaccinated parents. But between my treatment schedule and recovery time, it still seemed (and was) a heck of a lot easier for Craig and Ryan to stay behind. For Ryan, eight days without Mommy was....drumroll...a total breeze. Hah! So much for all of my worrying. I think it helped that we've been planning and talking about this trip for so long. And Ryan is just so aware. She understands that my head hurts and that I see doctors who try to help me feel better. She always asks, unprompted, how my appointments go. Sometimes at bedtime, she uses her little hands to give me "neck massages." And she understood how important this trip was for our family. 

Looking back on the last two years, I'm able to appreciate the gift of time a little more. My most recent surgery in November 2021 (my third occipital nerve surgery, if you're keeping track) was 200% the right decision to make. Dr. Peled cut both my right and left lesser occipital nerves. I'd already had those nerves cut in a previous surgery, but this time around, he tackled an aberrant branch of those nerves - branches not present in every patient (about 10% he estimates) and I'm so glad we took the chance a second time. 

After going on eleven years of this headache, I've reached a point of knowing that a cure is not and never will be a silver bullet. It's not that I don't believe better days are possible (because I do), but I know that solutions don't come packaged neatly with a bow. Relief is multifaceted. One treatment...one procedure...one therapeutic journey, gives the next one a fighting chance. It's also one of the most exhausting realities of battling chronic pain - the work you put in today doesn't always make tomorrow easier. But it might give legs to the work you put in tomorrow (or the next day).

Four months post op, I've definitely experienced a positive change. The "hot spots" I could pinpoint with my fingers are completely gone. Actually (snip snip) gone - those were my angry lesser occipital nerves! That's huge. Aside from having some time on my side, I've also been working with a physical therapist to strengthen my deep neck flexors. To prove my point above, these are really basic DNS exercises I've done time and time again over the last 6 or 7 years post C1/C2 fusion and craniectomy. But for the first time ever, they seem to actually be making a difference.

This third video in particular shows how engaging my deep flexors helps take the load off my overworked erectors, ideally improving the overall mobility and function of my cervical spine. 

As far as the redness/blotchiness you see on my neck, I have no idea. It comes and goes. We think that's the complex regional pain syndrome (CRPS) I seem to have developed over the last few years. 

So great progress but the relief hasn't translated as much as I would have hoped to the rest of my head pain - still suboccipital but primarily frontal/temporal (i.e. the holy shit my head is going to explode kind of pain), but I'm hopeful that this week's treatment can be a big step forward. 

I've consulted with Dr. Centeno over the last year so heading into this trip, we knew some definite reinjection sites, but the final treatment plan wasn't set in stone until I met with him in person this past Tuesday. 

So here was the week...

We flew in to Grand Cayman on Monday. The next morning was the start of Regenexx-C Phase 2. I needed a fresh blood draw three days prior to my reinjection to collect platelet lysate (PL), which was needed to grow my cells. My stem cells themselves have been cryo-preserved at their biologic age but too much time had elapsed for PL since my blood was last collected. 

Then I sat down with Dr. Centeno to go over our plan of attack. We discussed the relief I've experienced from my last ON surgery and reviewed some imaging. He performed a physical exam (including diagnostic ultrasound). We had quite a bit to work through because I have also been dealing with some chronic hip issues that we planned to treat. Sort of separate...but also sort of related to my head. I have a history of labral tears and moderate osteoarthritis in one of my hips. Both were surgically repaired over a decade ago but one has become increasingly problematic over the few years and hasn't responded well to physical therapy and some different interventional procedures (including PRP). The mechanical dysfunction from my head down my spine and beyond seems to only create more problems as time goes on. 

The final reinjection plan was:

Cervical spine: C0/C1 (right), C1/C2 (left), C2/C3 (bilateral), myodural bridge* (see note below on MDB)

Lumbar spine/SI joint: sacroiliac ligaments (bilateral), interspinous and supraspinous ligaments, iliolumbar ligament, QL tendon (left), greater tronchanter, multifidus, SI joint (left), and S1 nerve. 

He also injected tendons and ligaments in my right knee, which have recently become affected by that Si nerve irritation. Ugh. 

Dr. Centeno also pointed out what appeared to be a possible cyst of some kind (see that solid mass where his pen is pointing?) that could be compressing my third occipital nerve. If it was a fluid-filled cyst, his plan was to drain it, but it ended up being scar tissue. The unfortunate price I'm paying for having four surgeries in that area. Hopefully, some of what he injected will have a positive impact on that space.

*I've mentioned the myodural bridge before, but it's not a very commonly talked about structure (even for those of us who live in the world of upper cervical injury), so here's a recap. 

The MDB is the connective tissue connecting the suboccipital muscles and cervical spinal dura mater (remember that the dura is the outermost/toughest/most fibrous membrane that covers the brain and spinal cord). This soft tissue bridge anchors the spinal cord during passive and active cervical spinal movements. It was first reported in 2011 by Dr. Frank Scali. 

And in a very random turn of events (thanks Jeff!), I ended up speaking to Dr. Scali on the phone last Friday (actually just hours before my reinjection). My brain's no where near smart enough to pick his, but we did have a really interesting conversation. He basically lives and breathes upper cervical anatomy and the MDB (technically bridges, as he explained to me) is a major focus of his research, including their role in a dural tension monitoring system to prevent dural infolding and maintain patency (opening) of the spinal cord. (This also impacts cerebral spinal fluid flow.) And it makes sense that hyperflexion extension injuries (aka whiplash aka riding my bike into a tree) have the ability to send a damage those bridges. 

As someone who tries to the best of my (limited) ability to grasp these concepts simply out of desperation for my own health, I'm really appreciative to Dr. Scali for taking the time to chat with me. 

After Tuesday's appointment, we had some downtime until Friday's procedure. And hey, there are worse places to have downtime. My parents and I relaxed on the white sands of Seven Mile Beach, swam in salty, crystal clear, turquoise water that is the perfect temperature to lose track of time in. We ate some incredible meals (there's no shortage of healthy options), and went on an epic excursion. We snorkeled over coral reef, stopped at a sandbar where we hung out in waist deep water with stingrays, and explored Starfish point. 10/10 recommend! 

On Friday morning, I was back over at the Regenexx clinic for another blood draw. This blood was used to prepare my cells for reinjection. And by Friday afternoon, it was GO time! 

I was under conscious sedation for the reinjection, so about 10% aware and 90% out of it. I know the procedure lasted quite a while just because of the number of injection sites (and getting everything set up under x-ray guidance takes time too). I remember feeling a bit of discomfort but overall, compared to what I've been through, it was a piece of cake. The only rough part of the whole ordeal was the nausea from the Oxycodone a few hours later. It was one and done on the heavy pain killer for me (I never tolerate them well) and luckily, I didn't need them anyway. Post-reinjection pain and discomfort have been quite minimal. 

What now?

The first few days of recovery is a balance of R&R (including use of an infrared heating pad) with light movement, including some stretching and mobility work along with walking up to 30 minutes or so. This morning, on our way to the airport, we stopped back at Regenexx for my final appointment. Dr. Centeno injected PRP into my knee and hip this morning, which will help with healing. (These post procedure injections aren't part of the upper cervical protocol.)

After a Regenexx-C procedure, tissue healing progresses through 3 phases. 

1. Inflammation (week 1): when other healing cells are being recruited to the area to begin the healing process 

2. Proliferation (day 4 to week 6): when collagen and the building blocks for the injured tissue are being laid down 

3. Remodeling (week 2 to 3-6 months): when the tissue is constantly improving to become stronger, functional, and closer to normal

I'll resume physical therapy when I get home and gradually return to normal activity over the next few weeks. 

Full healing can take 6-12 months for stem cell procedures and data outcome suggests peak functionality at 1-2 years after Regenexx-C treatment, but Dr. Centeno told me that I should have a good sense of its outcome over the next few months. 

So there we go! With what felt like never ending obstacles standing in the way, I can't tell you how good it feels to be on the other side of this procedure. Now just one more flight to go to get home to my babies. 

These photos just needed a place. Taken the day before my departure - Ryan's first (balance) bike race...she crushed it!