Last I wrote, it was May and I was on my way back to San Francisco for another series of nerve blocks with Dr. Peled. He had decompressed both my right and left greater occipital nerves last July (along with decompressing both lesser occipital nerves and excising both third occipital nerves and then excising my left lesser occipital nerve in November) but based on the location and nature of my just-as-severe lingering pain, we decided that it was worth trying another round of diagnostic blocks to the GONs (using Lidocaine/Marcaine + some steroid for potential therapeutic purposes) along with some supraorbital nerve blocks. The outcome was....meh. Maybe a little improvement (?) but unfortunately nothing too substantial. We decided that the supraorbital might be worth repeating with a local doctor, though, so I found a Phoenix-based plastic surgeon who, at least according to his website, has experience with migraine surgery. I saw him a few weeks later but it was kind of a disaster. Not worth getting into but long story short, the wait lasted ninety minutes, the appointment lasted five minutes, tears were shed, and no nerve blocks were administered.
At this point, I didn't really have a "next step" mapped out, which is challenging in more ways than one. As much emotional energy as it takes to tackle the next approach, the next doctor, the next appointment, the next procedure, the next medication, the next therapy, it takes even more to process the question of whether there even is a next. (Spoiler alert: there is! But I'll get to that in just a bit.) In the meantime, I continued focusing as best I could on what I could control.
Since early 2018, I've been working with my naturopath, reproductive endocrinologist, and Chinese medicine physician (who specializes in women's and hormone health), to help regulate my endocrine system through a combination of medication, supplementation, herbs, and acupuncture. Woah, where am I going with this, right?
Seven years in, I'm no stranger to the pain game, but it's become glaringly apparent over the past year especially, just how much havoc chronic pain can wreak on the entire body. Chronic pain is STRESS (obviously) but not just in the sense that it feels stressful in the hard, frustrating, overwhelming, life-altering sense. It's for sure all of those things, but physiologically, it has profound, far-reaching effects on the endocrine system. The endocrine system uses hormones to control and coordinate so many functions of the body that are necessary for homeostasis, so it's kind of important. I'm clearly no expert in this stuff, but am trying to wrap my head around it as best I can and am sharing what I've learned only because I know I'm not the only one trying to piece this puzzle together.
So on a very fundamental level: Stress activates the hypothalamic-pituitary-adrenal (HPA) axis, which is considered to be the major stress control mechanism of the body. Our bodies are smart! They produce more stress hormones when we're in stressful circumstances to mobilize and energize us. But this system isn't designed to protect us from acute stress/pain that turns chronic (example: a seven-year long headache). When the axis is chronically stimulated beyond a healthy, acute pain response, the adrenals continue secreting cortisol and serum cortisol levels continue to rise. When cortisol creation dominates the pathways, it disrupts the balance of other hormones. The pituitary gland's thyroid function can be suppressed, as well as its ability to release LH, and estrogen/progesterone ratios can get thrown off, leading to a whole bunch of symptoms and issues that no one wants to deal with.
The takeaway is: chronic pain can do a lot more to your body than make it hurt. And I guess the more you know, the more you can do to support it from all angles (which is what I'm trying to do). Aside from the medical approach I mentioned above, I've also made a concerted effort to dial back the load of higher intensity exercise this summer. I'm still working out, but taking more rest days and incorporating fewer metabolically-taxing workouts into my routine. Exercise has always been my physical and mental escape from pain, but unfortunately, good physical stress is still stress and it's become painstakingly clear that right now, my body just needs less of it.
Okay, on to my head.
If you've been following my blog for a while, you know that for as many treatments as I've pursued, it always comes back to my upper cervical spine. And even after every upper cervical treatment and procedure that has failed, it's just hard to ignore what you feel in your own body. I would tell Craig over and over, "something is just not right in neck." So, in July, I found myself back in the office of yet another chiropractor (perhaps an indication of just how desperate I was). This practitioner utilizes the Blair Technique, which is a manual method of adjusting the first two cervical vertabrae (atlas and axis). Since I'm fused at C1 and C2, and because I haven't had success in the past with other upper-cervical focused techniques (atlas-orthogonal and NUCCA), I wasn't sure exactly how or if there way any shot of this helping. But, I was hopeful that maybe there was some work that could be done between C0 (my occiput) and C1.
It's hard to tell from this image because the misalignment is more rotational, but that's exactly what he ended up trying to do; improve the alignment between my skull and C1. I would definitely feel a sense of relief after the adjustments (in the sense that I didn't feel quite so "locked" and there was a correlation between my highest pain levels and my misalignment), but I've had a really difficult time holding the adjustments (meaning I would see him the next day and be right back where I was).
Though they haven't been a game changer, these treatments have at least validated my intuitive feeling that these first few vertebra are still somehow driving my pain, which leads me to the latest development.
Last week, Craig and I flew to Denver to see Dr. Centeno at Centeno-Schultz Clinic. 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 Dr. Centeno a few years back after my initial C1/2 instability diagnosis led me to research regenerative ligament treatment. Before my eventual C1/2 fusion and craniectomy, I had undergone prolotherapy and platelet-rich plasma therapy 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.
What could help me, though, are some other techniques he uses to help patients with chronic pain originating from the upper cervical spine (specifically, the facet joints, which I'll get to below). Here's a quick video of him explaining his joint injection technique at the C0/C1 level.
After getting the required updated MRI and DMX (digital motion x-ray), Craig and I had a phone consultation with him in early August to discuss my case. If you're wondering what a fused neck in motion looks like, here's my DMX:
After our phone consult, we made plans to travel to his office in Colorado for some facet joint blocks, the outcome of which would determine potential candidacy for stem cell and PRP treatment. Believe it or not, of all the diagnostic blocks I've had done over the years (several specifically focused on my cervical spine, including a C1 nerve root block, medial branch nerve blocks C2-C7, a bilateral pulsed radiofrequency medial branch nerve ablation C2-C7, and a dorsal root ganglion block) I've never had cervical facet blocks. Why? Well, Dr. Centeno offers a pretty astounding explanation for the premature demise of the C1/C2 facet injection.
Facets are tiny little articulations (about the size of a finger joint). Just like any joint, they become inflamed when they're damaged and chronic inflammation to all of the nerve endings can become a source of chronic pain. Adult stem cells in your own body can renew themselves and turn into other cells, helping to repair damage as it occurs. So the idea behind this type of stem cell treatment is that by extracting them from an area of high volume in your own body and then re-injecting them into the damaged area, it can promote healing. Similarly, PRP works by taking out your blood, spinning out the red blood cells, and re-injecting the platelet-rich plasma in the targeted area, which has a stimulating effect on the stem cells there (meaning, the stem cells get an extra boost to do their healing thing). The PRP methods that Dr. Centeno's clinic uses are also different than what I've had in the past in that they're more pure and concentrated. And in case you're wondering why I'm traveling out of state when there are quite a few doctors locally who practice regenerative orthopedics, it all has to do with the site of damage and speciality. Dr. Cenento is the doctor performing this treatment at the C0/C1 and C1/2 level.
So, my visit with Dr. Centeno last week included a thorough review of my most recent imaging, a physical exam, and the diagnostic procedure.
To start, we went over my MRI, where he identified a strange lesion posterior midline of C1/C2. You can see where its measurements are marked in the image below. At 1.44 x 1.96 cm, it's a pretty decent size. Fun! He really wasn't sure what it is (possibly scar tissue related to my first surgery?) so the next step is for me to get a more specialized MRI. That's scheduled for next week and hopefully will provide more information.
I had a total of four blocks done (C0/C1 facet joint and C1/C2 facet joint on right and left sides) using a low-dose cartilage-friendly anti-inflammatory and an anesthetic. They're diagnostic in terms of how I respond to them but also diagnostic in terms of what Dr. Centeno sees happening under x-ray while he's doing them. When he did the C0/C1 block on the left side, he could tell that there's damage to the facet capsule because when he injected me, fluid leaked out of the joint space. When he did the C1/2 block on the left, it was clear that although the vertebra are stabilized (screwed together), the joint has not fused. This is a little concerning because now there's a screw in the joint with broken cartilage and the joint will likely get arthritic over time. The right side has successfully fused though. When he blocked C1/C2 on the right, there was also clear damage to the facet capsule. What was interesting to me about these blocks is how painful they were. In all of the procedures I've had done (including my surgeries), I've never felt anything quite like that. But it seems like that makes sense, given how inflamed those joints are.
So, maybe you don't read this all and think "hey, great news!" but it certainly validates that there's real damage in the very spots where I've felt something to be wrong for so long. And where there's a defined problem, there's actual hope for a solution.
As far as my response to the blocks, I did feel some head pain reduction in the few minutes post-procedure, but it wasn't until the next day that I felt truly significant relief; a major improvement in my headache and a incredible sense of relaxation through my always-in-spasm levators and, well, basically every deep neck muscle that you see below. Even Craig was blown away by how different things felt just by putting his hands on my neck. It totally makes sense that when the joint capsule is damaged, the surrounding musculature responds in the only way it knows how: stabilize, tighten, lock down! It knows there's damage and it's doing its job to protect against more of it. The best massage therapist in the world can't stop that.
Because I experienced a more delayed response than anticipated, we thought perhaps the anesthetic hadn't done anything and it was the slower-acting anti-inflammatory taking effect. But after two days, my pain spiked right back to normal where it's sat stubbornly since, so I'm pretty confident it was the anesthetic.
I don't have all of the details of my treatment plan worked out quite yet, including whether I'll start just with PRP or PRP and stem cell, but the tentative plan right now is go back to Denver in early November to begin treatment.
More updates soon!
As far as my response to the blocks, I did feel some head pain reduction in the few minutes post-procedure, but it wasn't until the next day that I felt truly significant relief; a major improvement in my headache and a incredible sense of relaxation through my always-in-spasm levators and, well, basically every deep neck muscle that you see below. Even Craig was blown away by how different things felt just by putting his hands on my neck. It totally makes sense that when the joint capsule is damaged, the surrounding musculature responds in the only way it knows how: stabilize, tighten, lock down! It knows there's damage and it's doing its job to protect against more of it. The best massage therapist in the world can't stop that.
I don't have all of the details of my treatment plan worked out quite yet, including whether I'll start just with PRP or PRP and stem cell, but the tentative plan right now is go back to Denver in early November to begin treatment.
More updates soon!
