We flew in Tuesday night and were scheduled to see Dr. Franck on Wednesday afternoon. The appointment got delayed a few hours due to an emergency surgery he was called into, so we didn't end up seeing him until around 5-ish. Dr. Franck had already reviewed my DMX (digital motion x-ray) before we scheduled this appointment and had ordered an upright MRI so we already knew that his initial interpretation of my C1/C2 instability warranted a further conversation, but we were eager to understand the full picture. What exactly did he see in my films? What did he consider to be the mechanism of pain? How does his C1/C2 fusion correct the instability? How many patients have had the C1/C2 fusion? How similar have their cases been to mine? What are the outcomes like and has their relief lasted? What are the risks? What kind of post-op lifelong implications or restrictions would I need to consider?
Fortunately for us, Dr. Franck is an incredibly thorough, committed and compassionate practitioner. Craig and I sat in his office until 9:45 pm hashing out the details of my case. I'll break down the take-aways, but first...
I've included this video in multiple posts already but here it is again for anyone interested in watching. One thing I will say is that if you're reading this because you or someone you know is suffering from chronic cervicogenic headaches (or as is the case with me, one singular 24/7 headache) - whether it's post-trauma like whiplash or not - and you haven't had a digital motion x-ray of your cervical spine, you need to figure out how to get one ASAP- even if your neurologist has never head of it. Then you need to figure out how to find a doctor who knows HOW to read it. I can't tell you how many top neurologists, physical therapists, neurosurgeons, orthopedic surgeons, etc. have watched this video and said "Wow, that's interesting. But I'm not sure what it means because I've never seen one before."
There are 22 major ligamentous structures in the cervical spine and the upper 30% of of the cervical spine gets its stability from ligaments only. Digital Motion X-ray is the only test that will detect sub-failure ligament injuries. MRIs and traditional x-ray's CANNOT detect the stretching or an elongation of a ligament.
Dr. Franck pointed out the rocking of my C1 in the nodding view with my occiput barely moving (it should be the other way around). When I go into flexion, instead of seeing a nice even curve distributed throughout each vertebra, you can see how C5 acts as a fulcrum. In the open mouth view, my atlantoaxial instability is pretty glaring. We originally thought the excursion of these vertebra measured 4 mm on my left and 3 mm on my right, but Dr. Franck showed us (by looking at the lateral atlantodental interval), that it's actually more like 6 mm on the left and 5 mm on the right. You can see the lateral mass of my C1 banging into my odontoid process. What does this mean? Basically that my C1 and C2 are really loose - even worse than we thought.
Next we reviewed my regular MRI. If you've been following along for a while, you might remember me writing about the concern we've had around the "kink" in my spinal cord (see yellow arrow)- an observation that's caught the eye of a few practitioners but has ultimately been written off as insignificant.
But in Dr. Franck's mind, the kink is totally significant. He explained that because my ligaments are damaged at C1/C2, my dens (i.e. the bony process where C1 and C2 articulate) is being pushed backwards. As a result, there's inflammation occurring around the surrounding bursa of synovial fluid. You can see that inflammation where the black space is in the photo below (see pink arrow). It ends up pushing into my spinal cord, causing the kink. Aha!
He's also concerned about this cerebellar tonsillar ectopia, as shown by the blue arrow. This is where the tonsils of my cerebellum are sinking too low. He hypothesizes that this is a result of damage to my denticulate ligaments, whose function is to stabilize the spinal cord within the vertebral canal.
Unfortunately my upright MRI wasn't much help to us because the place I went to get it here in AZ failed to take the correct positional views, so if I move forward with surgery we'll get one done in Tampa first.
The million dollar question is obviously WHAT is causing my headache. We talked through a few possible mechanisms of pain:
1. Compression of my spinal cord (caused by the capsular synovitis is pushing into it) could be interfering with the flow of my cerebral spinal fluid.
2. My vertebral artery is compressed as a result of the instability. The vertebral artery provides huge flow to the brain stem, so when that supply is occluded, it causes poor circulation of cerebral spinal fluid.
Dr. Franck is incredibly confident that his C1/C2 fusion surgery can help me. He's performed it on 95 patients so far who have presented with very similar history and symptoms and 94 of them have had lasting improvement/complete resolution of their pain. That in itself is obviously encouraging, and I felt even better after learning that I could be expected to return to my normal activity as soon as 6 months post-op.
This fusion is a bit different than standard C1/C2 fusions, where the fusion traditionally includes the occiput and c3. Here's an overview of what the procedure would entail:
At surgery, you will be gently anesthetized for general anesthesia and be monitored closely.
You will be carefully placed face down on the operating table. We will use an ultra hi-tech radar guidance system, called the STEALTH, in combination with an intra-operative CT scanner, called the O-Arm, to target C1-C2.
A small incision will be made at the top of the cervical spine, below your skull, and two small insertion points at the base of your cervical spine.
Using the STEALTH radar system, Two 4 mm diameter titanium small screws will be carefully guided from the insertion points, by a minimally invasive technique to connect C1 and C2.
Bone fusion material will be directly placed on C1 and C2. Finally, two square centimeters of bone from the occipital skull base at the top of the spine will be removed if needed, in order to remove the pressure on the base of the brainstem shown on the upright MRI.
The operation will take about four hours start to finish and during surgery I make a point of letting your family know how things are progressing in a timely fashion.
Here's an x-ray showing where the screws would be placed:
Post, op, I'd stay in Tampa for about 2 weeks. I'd wear a hard-collar for 6 weeks and then transition to a soft-collar for another 6 weeks, using a bone stimulator a few hours each day to help with healing.
SO, as we left the parking lot of his office just before 10 pm, grabbed a quick dinner at Chipotle and got back on the road for the 2 hour drive to Fort Myers, we had a lot to think about. Overwhelming...yes, but I think in the best way possible. As awful as the physical pain of my headache is, the biggest stress/frustration/fear I experience on a daily basis is always related to what I don't know: What's causing my headache? Will I ever find a solution? Does a solution even exist? What is the rest of my life going to look like if I have to live with this? Being able to have such a conversation where these questions could actually be addressed in a concrete and straightforward way, rather than throwing arrows at a dart board and hoping for the best, gave both Craig and I more hope than I think either of us have had until this point.
Thursday morning came just a few hours later and off we went to Caring Medical for my visit with Dr. Hauser. As optimistic as we were about the surgery, it still seemed like it made the most sense to give the regenerative treatments that Dr. Hauser had to offer a chance. We knew that he shared the same ideas around my C1/C2 instability and the mechanisms of pain that we'd discussed with Dr. Franck, but that the interventions were obviously less invasive. After going through a consult and exam, Dr. Hauser decided that instead of prolotherapy, platelet-rich plasma therapy (PRP) would be most appropriate. PRP involves extracting blood from the patient's arm, putting the blood into a centrifuge and spinning the blood about 6 minutes to separate the red and white blood cells and the platelet-rich plasma (which is full of growth factors). Then that plasma is injected back into the body to promote tissue healing.
Here's an excerpt from Dr. Hauser's website:
How does Platelet Rich Plasma work?
Platelets play a central role in blood clotting and wound healing. Tissue repair begins with clot formation and platelet degranulation, which release the growth factors necessary for wound repair. Platelet-derived growth factors are biologically active substances that enhance tissue repair mechanisms. After platelets are activated at a wound site, proteins are released that directly and indirectly influence virtually all aspects of the wound healing cascade. Studies have shown a direct correlation between the platelet concentration and the level of secretory proteins, as well as the amount of proliferation involved in the wound healing.
Specifically, PRP enhances the fibroblastic events involved in tissue healing including chemotaxis, proliferation of cells, proteosynthesis, reparation, extracellular matrix deposition, and the remodeling of tissues. Bottom line here is that tissues can heal faster with Platelet Rich Plasma treatment.
Dr. Hauser injected me about 30-40 times (yikes, I know). Unfortunately, my resident camera man was off his game that morning and missed one bloody photo op, but he at least captured the aftermath in the form of many, many empty syringes.
The plan is that we'll go back to Tampa (or Chicago, where his other office is) in about 3 weeks for another round of treatment. We should have a pretty good sense of whether or not it's helping by that point. If it is, a full course of treatment could be upwards of 12 weeks. If it's not, we'll loop back to Dr. Frack and likely move forward with the fusion. While I'm getting these PRP treatments, my c-spine needs to be as immobilized as possible, so I need to wear a hard collar 24/7. That's proving to be not-so-enjoyable, as the stranger at the grocery store was so kind to point out to me yesterday by saying, "wow, looks like you're having a bad day!" (sidetone: never say that to someone), but it's obviously a VERY small price to pay if it leads to the outcome I want: no more headache. Dr. Hauser even gave me the go-ahead to do some exercise with the brace on, as long as my neck isn't moving. And hey, I'll take that!
While I'm not feeling any changes yet in my head, other than a pretty stiff neck from all of the injections, I'm hopeful that things could really start to change in the next few weeks. And if my pain hasn't changed, we feel more confident than ever in the next step. More to come soon!
