Back in September, I had traveled to see Dr. Centeno at the Centeno-Schultz Clinic just outside of Denver. I'm including this next blurb from my last entry as a refresher:
Dr. Centeno is an international expert and specialist in regenerative medicine and the clinical use of mesenchymal stem cells in orthopedics. I'd first learned about him a few years back after my initial C1/2 instability diagnosis led me to research regenerative ligament treatments. Before my eventual C1/2 fusion and craniectomy, I had undergone prolotherapy and platelet-rich plasma therapy (PRP) with Dr. Hauser in Florida. The outcome was unsuccessful and I had been assured (by several doctors, not just my neurosurgeon) that because my instability was so severe and because Dr. Hauser could only safely target the surrounding tissue and not the actual damaged ligaments (alar and tranverse), these types of injections just didn't have a chance of helping. I've since learned, though, that Dr. Centeno does have an alar ligament treatment for CCJ instability (worth checking out if this is relevant to you) but that doesn't really help me at this point.
My primary goal in meeting with Dr. Centeno in the fall was to learn whether I was a candidate for his upper cervical facet joint treatments: PRP and potentially, stem cell. Along with a physical examination and his review of my updated digital motion x-ray (DMX), this was determined through a series of four blocks at my CO-C1 and C1-C2 facet joints (bilaterally). Since these injections are performed under x-ray guidance, he's able to actually see the extent of damage to the facet capsule. And sure enough, the fluid he was injecting (a low-dose cartilage-friendly anti-inflammatory and an anesthetic) leaked right out of the my left side C0-C1 joint space, indicating a fair amount of damage. Then the same thing happened at C1/C2 on the right side.
The takeaway? My C0-C1 and C1-C2 facet joints are damaged. Regardless of anything that happened from this point forward, in terms of my response to these blocks, we knew this was an important finding.
When all of the tiny little nerve endings on these tiny little articulations are chronically inflamed, the result is (not-so-tiny-little) amount of PAIN. Pain in the form of migraine, tension-type headaches, or cervicogenic headaches. In my case, it's a brutal and unrelenting combination of all of those that affects me 24 hours a day, 7 days a week.
Then to further validate these findings, I experienced a significant degree of headache relief the following day (likely a delayed response to the anesthetic). And every little muscle back there, whose default setting is LOCK-DOWN as a means of protecting the inflamed joints, got the message too. Everything was calm, relaxed, supple. Two days later, my pain had spiked right back to its normal agonizing level, but I felt even more confident that my damaged facets were a primary source of my head pain.
In November, Craig and I eagerly traveled back to Colorado for my first PRP treatment. Again, as a refresher, PRP, or platelet-rich plasma, is when blood platelets are concentrated from whole blood. Platelets are a rich source of healing growth factors so taking a patient's blood, spinning out the platelets and re-injecting them into the damaged tissue, allows for enhanced healing.
The morning of, I had my blood drawn and then later that afternoon, after it had gone through a centrifugation protocol, back into my neck those platelets went. Heal baby heal. I was kind-of-sort-of put under for this one so it was MUCH more comfortable than the diagnostic injections had been. During this procedure, Dr. Centeno also observed that my unfused C1-C2 joint on the left side (which I had mentioned him calling out during the blocks in September), actually looked like it was in decent shape. He said the anti-inflammatory he had previously injected could very well have promoted that fusion. GREAT news for me because I was a little (a lot) freaked out by the idea of a screw hanging out in a joint with broken cartilage, which would likely have become arthritic over time.
On another positive note, Dr. Centeno had consulted with a radiologist about that weird lesion posterior midline of C1/C2 that had showed up on my most recent MRI. When I had my cervical fusion in 2015, Dr. Franck used a stem cell matrix to bridge the bony fusion, which was then patched up with my own crushed up bone from my craniectomy. So that's what they think the lesion is.
So that night, we flew home to Arizona and the waiting began. If it is coming, relief from PRP doesn't occur overnight. Dr. Centeno had given me a 6-12 week time period to measure progress. If some relief was felt in that window, a logical next step would be to repeat the procedure. If it wasn't, we'd begin a new conversation about stem cell treatment.
The next few months were tough for me. I wanted so, so badly to feel some improvement and when it didn't come, it was devastating. I knew pursuing stem cell treatment was an option, but it was also a lot to wrap my aching head around. Even though Craig has always assured me that whatever gets me out of pain is the best money we'll ever spend, this treatment is very, very expensive (and none of it is covered by insurance, keep in mind). There was a whole new timeline to consider too. Improvements from stem cell treatments can take much longer and I knew there are a chance I might need to travel to Grand Cayman, where Dr. Centeno is able to practice a much more effective form of this treatment (I'll get into that) but there are only certain times of year that he's there. On top of that, and I suppose one of the hardest parts of this all, was figuring out how to balance the pursuit of this treatment with the fertility treatment I had begun the previous year (but had needed to put on pause when I had begun seeing Dr. Centeno).
Sharing this feels a lot more personal than anything I've written about before, but it's also not an entirely separate part of my story.
It's difficult to put into words all the emotions wrapped up in it, and quite frankly, I could understand how easy it might be to make a judgement about our decision to try to have a baby in midst of my pain struggles. But almost eight years in to this headache journey, it was becoming increasingly clear to me that I just couldn't continue to put everything else that I want out of life on hold without knowing for sure when or even if I will ever be free of pain.
I know that getting pregnant is a challenge for a lot of couples, but it was really scary for me to realize new ways in which chronic pain was wrecking havoc on my body and potentially, further defining the trajectory of my life. Would having a baby even be possible? And what did it mean if it wasn't? The hope of starting a family had always felt like the light at the end of the hellish headache tunnel for me. Despite every aspect of my health that I have fought to maintain; my strength, my fitness, my mental-wellbeing, it felt like one more thing my headache was trying to rob me of.
Ultimately, Craig and I made the decision to put my treatment with Dr. Centeno on hold while resuming my fertility treatment. This came with some supplemental interventions aimed at returning my dysfunctional hypothalamic pituitary adrenal (HPA) axis to a healthy state. (The HPA axis is our central stress response system. Think of it as an intertwining of the central nervous system and endocrine system). This included about a year of regular acupuncture treatments, a lot of supplement support with my naturopath, and a very real break from intense exercise. Several months of just walking and pilates with no lifting and zero high-intensity anything.
And with an insane amount of gratitude for modern medicine, I'm BEYOND happy to say that it worked! Craig and I (and Charlie, clearly) are expecting a baby girl in September!
(Yes, I know it's ridiculous that I have her entire nursery finished already, but the whole process has brought me so much joy that I just couldn't wait.)
I'm sure my perspective will shift a million times over in the coming months and years, but as I approach the mid-way point of pregnancy, I can't help but reflect on all of the ways in which my journey through pain has already impacted this new chapter of life.
Gratitude, of course. Immense gratitude that just seems to take on a whole new life when the road to get here hasn't been the most direct. But it goes beyond that too.
The irony of chronic pain is that for as hard and as often as it knocks you down, it has a way of somehow building you up. It's not easy to appreciate this, even as it's happening to you...especially as it's happening to you, but every now and then you find yourself in these situations, looking around at what everyone else is calling "hard" or "painful" and you think "Holy shit. This is considered 'hard?'"
And that's not to minimize anyone else's experience with pain or any form of suffering; just to say that when you make a full time job of enduring physical agony, it becomes almost impossible to classify something that is temporary as pain. So long as it is not permanent, I can get through anything. It's not overconfidence (by any means, trust me) but it is an empowering feeling to carry with you, not just though the inevitable discomforts of pregnancy or the anticipation of childbirth, but of everything that lies ahead; each and every unknown that will be this wild adventure of parenthood.
So where does that leave my headache treatment?
Regenerative treatment with Dr. Centeno is off the table during my pregnancy, BUT I am scheduled to travel to Grand Cayman to begin stem cell therapy soon after she's born. Welcome to the family, kid! Sometimes we travel nice places to see doctors! Because stem cells have the ability to replicate and develop into healthy, new tissues, I'll be having my own stem cells injected into my facet joints to repair the damage (and ultimately, hopefully, help my pain). Stem cells work similarly to PRP but are a much more advanced treatment option for injuries and conditions that might not be effectively treated with PRP procedures.
There are two different types of stem cell treatments that Dr. Centeno performs; one is Regenexx-SD (same day) and the other is Regenexx-C (cultured) and I'll be getting the cultured form. Dr. Centeno does do same day stem cell procedures at his clinic in Broomfield, CO...but isn't legally able to do the Regenexx-C in the U.S.
Why, you ask?
To make a long story short, a number of years ago, the FDA decided to classify cultured stem cells (which are cultured over a certain amount of weeks to increase the concentration of stem cells, thereby increasing the healing potential of what's reinjected into the patient) as a DRUG, claiming that Regenexx was producing an "adulterated and misbranded biologic product" and weren't following drug mass manufacturing standards. Spoiler: they weren't, and they've published ample safety data (confirmed with independent research) supporting the safety of Regenexx procedures over more invasive orthopedic procedures that patients are able to avoid. If you're interested, you can check out this short video where Dr. Centeno discusses the FDA's stance on cultured stem cells and how the same-day procedures performed in the United States by Regenexx and the Regenexx Physician Network were never part of the case that focused on a single cultured stem cell procedure, which has not been performed in the United States since August 2010.
Luckily, at Regenexx Grand Cayman, Dr. Centeno and his colleagues ARE able to culture patients own mesenchymal stem cells with higher success rates than same-day (particularly for more complex cases, like mine) so that's why we're bypassing the same-day option in CO.
During this first trip in November, I'll have my blood drawn and then undergo a bone marrow aspiration (BMA), where mesenchymal stem cells will be extracted from my hip area ("mesenchymal" just means derived from bone marrow). Those cells will be cultured over a few weeks time so a more concentrated dose can be re-injected precisely into my facet joints. The only down side is that because he works out of his Colorado office for most of the year and only travels to GC at certain times, I won't be able to have my cells reinjected until March 2020. So after having a good cry about that timeline (it happens), I realized that if I've come this far, what's another six months?
What's also cool (pun intended...wait for it) about this process is the option to cryopreserve the stem cells that are harvested, which basically means they get frozen and their current biological age and can be used for future treatments if needed.
Why adult stem cells vs. embryonic?
If you're still with me, congratulations! And maybe that means this stem cell stuff is interesting to you, which is why I think this is worth sharing. With all the buzz around stem cells as the "future of medicine," chances are you've heard about amniotic or umbilical cord "stem cell" treatments. Unfortunately, this is an industry rich with deception. Despite what their advertising promises, and unlike adult stem cells from your own bone marrow, these treatments do not contain live cells. The longterm safety and outcome data of adult stem cells is also leaps and bound ahead of these alternative forms. Lastly, there is much less likelihood of adverse events, including less rejection, when the cells are coming from your own body vs. someone else's. Bottom line, if you're pursuing orthopedic stem cell treatment, do your homework.
For more info, I'd recommend reading this:
Umbilical cord stem cell scams are often caused by people who don't know what they don't know
and watching these two videos:
I think that about covers it all! I'm not sure how much new information I'll have over the next few months, but I'll be sure to post if something does come up.
As always, thanks for reading and especially for all of your continued love and support from near and far!
