I've been able to continue pushing myself in the gym and getting on my mountain bike when the weather allows for it. Starting my day with a lift feels really good. I know I'm getting stronger with each workout, but most importantly, I feel the stress of my headache melt away. It makes me more mentally resilient...better equipped to handle the next 24 hours of my headache without completely losing it. I wouldn't wish that form of motivation on anyone, but I can tell you that it's pretty f-ing effective.
Needless to say, it's been refreshing to channel my blogging energy elsewhere (Hah! I guess you know a headache is bad when afternoons spent researching the ingredients in laundry detergent and sunscreen are a welcomed distraction...am I right?)
So I had mentioned in my last post that I was beginning a series of acupuncture treatments with Dr. Jing Liu. As hopeful as I was, this round was a bust like all the rest. I knew that if I was going to go down the Chinese Medicine route again, It was going to require some time and patience, so I committed to at least a few weeks of treatment regardless of whether I felt any changes. I completed 10 sessions over the last month(along with drinking my twice daily dry-heave-inducing herbs) but decided to call it quits after Tuesday's session. The whole blood stagnation thing in my c-spine and scalp makes a lot of sense to me, but ultimately, my frustration boils down to feeling like there's still a biomechanical or structural dysfunction in my c-spine. And if something in my neck isn't in the right place, whether it's a result of ligament damage or something else, how can more acupuncture correct it? I'm glad I gave it another shot, for sure, but another series of failed attempts takes a toll on my optimism. Clearly, in need of some new direction.
And...cue the serendipitous turn of events.
The fellow-headache-sufferer from Canada that I mentioned before, who stumbled upon my blog and went to see the atlas-orthogonal chiropractor in New York I had written about, happened to email me a few weeks ago with a link to a video he had found and thought I may be interested in.
The video, which I've posted below, shows neurosurgeon Joel Franck, MD, speaking at the FONAR's Cranio-Cervical Syndrome Symposium in 2013. His presentation is titled, "When the Atlas Shrugs: Post-traumatic Migraine Headaches and Lateral C1-C2 Instability - a New Syndrome; Dynamic Motion x-ray (DMX), pMRI Diagnosis, and Treatment with C1-C2 Transarticular Fusion Utilizing Stealth Image Guidance and O-am Intra-operative Virtual CT Scanning. Yikes, that was a mouthful.
In patients with chronic, post-whiplash migraines/headaches, Dr. Franck is using both digital motion video fluoroscopy and upright MRI and finding in most patients, clear abnormality of the alar or transverse ligaments. The ligament damage is what accounts for lateral slippage of C1 on C2.
Here's a clear explanation of what happens (excerpts taken from Dr. Franck's website):
"...in a whiplash injury, these ligaments may get damaged – sometimes severely so. This is particularly true as regards the Alar ligaments and Transverse ligaments, connecting C2 (the axis), C1 (the Atlas), and the Occiput (Bottom of the skull). As explained before, the Cervical DMX and the Upright MRI demonstrate that in whiplash damage to these ligaments causes abnormal lateral, side to side, sliding of C1 on C2.
This lateral sliding causes abnormal tension on the vertebral arteries. We have demonstrated this in the operating room by directly observing that vertebral artery flow is disrupted by the laxity and abnormal loose movements of C2 and C1.
Abnormal tension on the vertebral arteries causes a wave of spreading contraction in these vessels and this may be the origin of the severe intractable headaches. These post-whiplash disabling headaches are most often described as pounding and throbbing, characterizing them as “common migraine” headaches. This subjective feeling reflects the vascular nature of the headache – waves of vascular contraction and dilatation.
...There is more: Recall that many whiplash patients who sustain Alar and Transverse ligament damage develop inflammation at C1-C2 in the spinal canal. A mass develops in that area which we describe as C1 Capsulosynovitis. Further, many of these patients also develop a sinking of the posterior part of the brain, including the cerebellum, into the opening of the skull base – the foramen magnum, which is called Cerebellar Tonsillar Ectopia.
Together, these two phenomenon cause severe crowding and pressure on the brainstem and vertebral arteries...
...Cerebrospinal fluid (CSF) is produced in the center of the brain in a space called the ventricles. CSF is an “ultra-filtrate” of blood, and is essentially similar to ocean salt water. It also contains immune related proteins and other factors. The CSF circulates around the brain and spinal cord after leaving the ventricles and then is reabsorbed on the top of the brain.
After a whiplash injury that abnormally affects the upper cervical spine, as mentioned, the opening of the base of the skull, the foramen magnum gets compressed or crowded. This can be demonstrated to adversely affect the flow of CSF around the brainstem and spinal cord. This may play a role in the development of the Cranial Cervical Syndrome."
Dr. Franck is treating this condition with a minimally invasive cervical fusion of C1 and C2. Basically he makes an incision at the top of the cervical spine, below the skull, and two small insertion points at the base of the cervical spine. Then, using the STEALTH radar system, he carefully guides two 4 mm diameter titanium small screws from the insertion points, by a minimally invasive technique to connect C1 and C2. Then he applies bone fusion material directly on C1 and C2 and finishes by removing two square centimeters of bone from the occipital skull base at the top of the spine, in order to remove the pressure on the base of the brainstem shown on the upright MRI.
You can see where the screws are positioned here:
Craig and I watched the video with wide eyes and when it finished, kind of looked at each other like, holy shit, this is me. Imaging from the case study he walks through in the presentation mirrors mine to a T - including the C1/C2 "rocking" from my digital motion x-ray and the spinal cord "kink" that shows up in my MRI...sort of resembling a basilar invagination/Chiari malformation but not enough to qualify as remarkable to most doctors who have seen it.
We immediately got in touch with Dr. Franck, who's based in Tampa. After reviewing my motion x-ray and MRI, we got an email from his office "this is a GREAT case - call them and please get her down here ASAP - I can change this gal’s Life." He told us that he's performed the operation for "precisely the indications Katie presents with on over 85 patients worldwide, with remarkable and positive results. While all surgery has risks, statistically, this operation is extremely safe and has a terrific track record of minimizing post-whiplash intractable migraine headaches."
When I saw the email, my eyes immediately welled up with tears, for 2 very different reasons:
1. Indescribable hope and happiness at the prospect of a solution existing that could actually correct the root cause of my headache and mean I wouldn't be in pain the rest of my life
2. Overwhelming fear and anxiety at the prospect of having a cervical fusion - not around the operation itself but all of the questions I already had about long-term outcomes. Would the pain relief last? What if it came back? Would I be able to have an active lifestyle? Could I ever mountain bike again? (The mind moves fast, you guys know)
But like always, Craig talked some sense into me and reminded me that we'd just have to take it one step at a time, starting with a consultation with Dr. Franck. He ordered an upright MRI (which I had done yesterday), and we're scheduled to fly to Tampa in just a few short weeks for the visit.
At some point while all of this was going on, Craig and I decided now was a good time to explore some regenerative therapy. If the ligament instability is truly the culprit, we figured it's worth trying some less-invasive ways of correcting it. So last week, I saw Dr. Cronin at Naturopathic Physician's Group for my first prolotherapy treatment. I know I've talked about prolo before but here's the gist:
Prolotherapy (aka Regenerative Ligament Therapy) is a series of injections used to treat pain from ligament damage. You've probably heard before (or maybe know because of your own injury) that ligaments, joint capsules, and cartilage aren't the best at healing. That's because they have a very slow metabolism and are made of dense, white collagen with a poor supply of fresh blood and nutrients (not to mention the constant structural stress they're under). So prolotherapy works by feeding the ligaments to make them stronger. The nutrient solution that's injected is a combination of glucose and procaine. The ligaments become strengthened as a result of the injections by rebuilding of collagen.
I had my first prolo session last week, my second one this morning, and will plan to go back in two weeks for number three. Dr. Cronin is injecting a few spots from C2 down. He can't hit C1 because that requires ultrasound guidance (prime real estate) and only a few people in the country do that. We figure we'll start with C2/C3 and if we need to travel somewhere to have C1 done under guidance, we'll cross that bridge if and/or when we get to it. So far, I'm not feeling anything positive from the injections (just an increase in pain in the few days after) but that's not abnormal. We're going to give it at least 5 sessions regardless.
In the meantime, I've been adding this collagen supplement to my morning smoothie to help the healing process along. Stay tuned to ALO's blog for an upcoming homemade (delicious) chocolate hemp milk recipe using the same joint-healthy collagen.
I'll plan to post again after my next few Prolotherapy treatments, and definitely after our trip to Tampa. Crazy that in a few short weeks, it'll be the four year mark since my bike accident. Hoping this summer is a game-changer.
