It's only been a week since my last post, and although I seem to have slipped back into my "normal" headache since the few days of sustained reduction a week ago, I do have some interesting rehab progress to report.
First though, a quick update to the ozone IV therapy from last Wednesday. I hadn't felt anything unusual except for maybe a little fatigue when I posted my most recent blog entry on Wednesday evening. But by about 9 pm that night, while lying on the couch (getting our nightly fix of House of Cards, obviously), I started feeling really dizzy. Dizziness and nausea are typically NOT symptoms I experience with my headache so I knew it was likely a reaction to the ozone treatment. The dizziness progressed pretty quickly over the next few minutes until I was throwing up an equally impressive and disgusting amount. There's nothing quite like a night with your head in a bucket to make you and love and appreciate the guy holding your hair back. Am I right?
So it really took me a few days to recover from that little episode...aside from feeling generally lousy, my headache had spiked back up to a high-normal range...where it's stayed for the past week-ish.
I had decided to stop seeing Dan Daliman for PT. Recognizing that I had made some significant progress with him over the last 6 weeks in strengthening my deep flexors while maintaining my c-spine alignment, I felt that we had hit a bit of a plateau and it was time to figure out the next step.
"Figuring out the next step" isn't a straightforward process, but the longer I've been in pain and seeking treatment, the better I've become at trusting my own intuition. When dealing with a chronic health condition of any kind, the ability to confidently weigh in your "gut feeling" with the advice and expertise of those around you isn't always easy, but so important. After all, there is not a single person in the world who knows and feels your body the way you do.
With that said, I've been growing increasingly frustrated by our inability to connect the dots between my headache and the chronic tension in my upper left back. As I've explained before, the "tightness" has felt so deep and SO connected to my pain above, yet has been completely unresponsive to all tried modalities by the best practitioners in their fields over the last several years...massage, dry needling, cold laser, ultrasound, acupuncture, cupping, various injections...the list goes on and on.
Of course, we don't for sure if this "tension" is manifesting as a response to my pain rather than the other way around, which is one reason that chronic pain is so tricky. I've talked about the pain-spasm-pain cycle before and the complexities of centralized pain but as a refresh, the longer you're in pain, the easier the brain's ability to properly process pain perception can change, becoming hypersensitized to pain input. It's a self-feeding mechanism...and a really shitty one at that. We're still trying to figure out the best way to tackle this possibility. So far, I have tried quite a few things that can be effective in treating more centrally-driven pain, from various medications (including the ketamine infusion) to other less invasive treatments like brainwave optimization, transcranial magnetic stimulation, eye Movement desensitization and reprocessing, etc.
But because I just refuse to give up chasing down this left upper back connection, we've decided to try a few new things. Earlier this week, I met with Tony, one of the PT's at EXOS who I've seen in the past. He pointed out how much less thoracic rotation I have on my left side and so decided I'd spend a few sessions trying to tackle that.
Yesterday, I also saw Jeff Beran, PT who I started back in the fall of 2013 (yikes!). After Craig and I caught him up to speed with findings from the past year since we last saw each other and he evaluated me, it become clear to him that my scapular mechanics are disrupting my cervical spine mechanics. This disruption was further evidenced by a few observations: my left shoulder is lifted about 1 inch higher than my right when lying supine, and my left pec minor is significantly tighter than my right.
Jeff hypothesized that the specific spot I feel on the left side is likely referred pain from the C5/C6 level, which is being affected by the scapular dysfunction.
It all makes a lot of sense to me, based not only on my understanding of the anatomy (see below how the levator scapulae connects the c-spine to the scapulae) but really more so what I FEEL is going on in my body.
It's turns out that I haven't been activating my serratus muscle (see below). Like is so often the case, it's not a matter of strengthening a muscle but actually re-learning how to fire it correctly. Proper activation of the serratus (see below in red) keeps the scapulae in better contact with the rib cage.
You can physically see my serratus "turning on" in this video.
And then, when we try to progress to lifting one arm (which we soon found out I wasn't ready for), you can then physically see my levator/traps taking over. I KNOW that the "tension" of those muscles is part of my headache and really feel like this discovery is an important breakthrough in cracking the code.
So the plan now is to do these serratus-activating exercises until they're boringly easy and then I'll go back to see Dr. Beran to keep progressing them. I've been activating my serratus all day long like a f-ing champ and the exciting news is that even in this short time I can already feel a significant difference in the tension through my upper back and into my neck. The hope now as I continue is that pain reduction will follow!
I'm also still on a once-weekly acupuncture schedule. In today's session, Sara tried a bit of new approach based on everything that's happened with my PT visits this week. Team effort at its finest.
I'm happy to finally be reporting some encouraging updates today! Oh how I've dreamed about these blog posts. I still have a ways to go with my headache, but it seems like progress is finally being made.
Over the last few weeks, I've stayed pretty busy with my rehab, continuing my weekly physical therapy visits with Dan to strengthen my deep neck flexors while maintaining my new alignment. We've incorporated some other things into my treatment, including exercises to strengthen my external shoulder rotators. We've figured out that the soft-tissue dysfunction and chronic tightness on the left side of my upper back (which goes all the way back to my original bike accident, and therefore has always felt - at least to me - connected to my headache) is coming from my 5th rib. At this point, it's so hard to know what's driving a problem and what's a symptom, but the current approach is simply to attack it all and trust that pain reduction will follow.
Along with my PT, I've had a few more sessions with Anna at Movement Rev as well as acupuncture treatments with Sara Asadoorian-Vagianos at Advantage Sports Acupuncture. My visits with Anna have been focused on opening up my lateral line and superficial front line to aid in my thoracic spine mobility and improved diaphragm function, and improved deep frontal line function. The goal of this is improve the mobility of my spine and hopefully take some of the pressure off my neck.
Even though I've had a lot of dry needling in recent months, it had been a while (i.e. pre- corrected C1/C2 alignment) since I'd had traditional Chinese medicine acupuncture. These treatments with Sara have focused on releasing heat and stagnation in my body, and to restore energy flow, blood circulation, and function along the Urinary Bladder meridian (which runs from the corner of your eye, up and around your head, down along the paraspinals, down the sacrum & hamstrings, and ends at the corner of your pinky toe). Sara told me that releasing any blockages or adhesions along the UB meridian will open up the spine on both the functional and energetic level.
Up until about a week ago, I wasn't feeling any changes but then something started to subtly shift and my pain levels were in the "low normal" to "below normal" (as anyone who deals with 24/7 pain can relate, a 1-10 pain scale becomes impossible to use). This past weekend, I even felt good enough for a day trip to snowshoe in Flagstaff. Charlie's first romp in the cold, wet, white sand. Pure amazingness.
On Tuesday (yesterday), I was scheduled to see my naturopath, Dr. Popiel. He had recently reached out to Craig and I to tell us about a new treatment I might be interested in trying, Prolozone Therapy. See below for a description from the American Academy of Ozonotherapy website:
Prolozone® is a homeopathic/oxygen-ozone injection technique developed and pioneered by Dr. Frank Shallenberger. It is excellent for all forms of musculo-skeletal and joint pain including chronic neck and back pain, rotator cuff injuries, degenerative and arthritic hips and knees, degenerated discs, and shoulder and elbow pain. Because in many cases Prolozone actually corrects the pathology of the disorder, there is a 75% chance for the chronic pain sufferer to becoming permanently pain free.
Prolozone is a form of non-surgical ligament reconstruction and is a permanent treatment for chronic pain. Prolozone is a connective tissue injection therapy of collagen producing substances and ozone gas which can reconstruct damaged or weakened connective tissue in and around joints. These substances are injected into the damaged connective tissue in and around a joint to rebuild the damaged areas.
By repairing the connective tissue this is all that is needed to permanently reverse chronic pain.
Prolozone Therapy is an injection technique similar to Prolotherapy that uses ozone. The use of ozone causes the joint to heal much more quickly than in traditional Prolotherapy. This is because ozone is a highly reactive molecule and when injected into a joint capsule it is able to stimulate the fibroblastic joint repairing abilities.
Prolozone is derived from the word ozone and the Latin word “proli” which means to regenerate or re-build. It literally means re-building tissues with ozone. It is important to understand what the word Prolozone actually means. “Prolo” is short for proliferation, because the treatment causes the proliferation (growth, formation) of new ligament tissue in areas where it has become weak.
Ligaments are the structural “rubber bands” that hold bones to bones in joints – acting like the body’s shock absorbers. Ligaments can become weak or injured and may not heal back to their original strength or endurance. Ligaments will also not tighten on their own to their original length once injured. This is largely because the blood supply to ligaments is limited, and therefore healing is slow and not always complete. To further complicate this, ligaments also have many nerve endings, and therefore the person will feel pain at the areas where the ligaments are damaged or loose.
We can think of our joints as the hinge on a door. Until the hinge is fixed the door just isn’t going to open or close right and it’s the same exact story with our joints. If we are athletic or if we are just getting older there is some gradual and natural degeneration of the moving parts of the body due to ongoing recurrent mechanical stress, and failure of tissues to repair. This can come from lack of nutrients, lack of circulation, aging and inflammation. When this happens the ligaments, tendons, and cartilage become dehydrated and weaker. This results in laxity and more abnormal mechanical stress and shearing forces on the joint. Abnormal shearing forces and torsion cause more joint dysfunction. This leads to a progressive separation of the ligaments from the superficial covering on the bone called the periosteum. This pulling on the periosteum creates a space, which the body fills in with new bone. These new parts of bone are called osteophytes. They are the premier signs of degenerative arthritis in & around the joint. Osteophytes and joint laxity result in a reduced range of motion, which causes strain on surrounding muscles which then become either over or under worked leading to more dysfunction & pain.
Prolozone causes repair and tightening of the lax structures, partially torn connective tissue and ligaments. Prolozone halts the pain/inflammation cycle. This allows for better circulation, increased blood flow carrying nutrition, and hydration of the damaged tissues. This allows for a healing environment within the joint to develop and results in increased range of motion and decreased pain.
Keeping with our "attack it all and trust that pain reduction follows" approach, this seemed like it was worth a shot, especially given the overwhelming evidence that even in correct alignment, my soft-tissue seems to be a driver (or at the very least, strong contributor) to my headache. So yesterday, we went in for my first Prolozone injections. Since there's always a risk of flare up with injections, and because I had experienced such a bad flare up with my lidocaine injections just a few weeks before, Dr. Popiel agreed it was best to be a bit conservative with volume. He injected just a few spots (six, I think) along my C-spine, my left levator scap, and my right and left trapezius.
The injections themselves felt a bit different than regular injections. As the ozone gas went in, I felt a tightening/pressure and a few hours later, was even able to press down on the injected areas and hear a "crinkling" of the gas. Not painful, just weird! And we felt a pretty good spasm in my left scap when the needle went in....more confirmation of the connection to my head.
Within just a few minutes, I for sure felt a sense of relief from the treatment. I was already having a "good" day so the extra bump in pain reduction was all kinds of amazing. I took it easy the rest of the afternoon, though my pain creeped up a little by last night. Still way better than normal though, so I'll take it.
We had also decided yesterday that I would come back today to try an IV ozone therapy. The goal of trying IV is just to deliver a more systemic dose. We don't know what will be more effective, so why not try both? So this afternoon, Dr. Popiel drew some blood, infused the ozone into blood, and then added it back into my body. It's only been a few hours, so it's hard to tell how different I feel...but we'll see over the next few days and as long as I'm not feeling worse, I'll plan to go back for more IV therapy next week.
So for now, I'm taking it one day at a time...plugging away with my rehab and treatments, enjoying every moment I have with lower pain, and staying positive that there are pain-free days in my near future.
Headache wise, the last few weeks have been a bit of a roller coaster for me. As of last week, I hadn't experienced any changes in my headache since my trip to Austin. My jaw popping had definitely improved, thanks to the splint I've been wearing 24/7...and that's definitely a positive, but still disappointing that any improvements made weren't reflected in my pain levels.
Last Wednesday, I had a follow up with my neurologist, Dr. Dodick. As you can probably imagine, these visits have become less like doctors appointments and more like strategy meetings between him, Craig, and myself. We had sort of come up with this working hypothesis - that if the source of my pain was a misaligned C1/C2, which was causing soft-tissue dysfunction through my neck and upper back, which in turn was feeding the pain-spasm-pain cycle and we had corrected the misaligned vertebras but the pain remain unchanged, we needed to attack the soft-tissue in some other way. Craig describes it as a "time sequence puzzle". I could have strengthened the hell out of the muscle before or worked to improve the quality of the soft-tissue (which I tried to do) but if the misalignment wouldn't let it hold, how could I have possibly gained any traction?
I had already tried some intensive massage a few times per week since returning from TX without progress. But Craig and I were hopeful as we remembered back to my first Botox experience 2 years ago. My only "response" to Botox in spring 2013 was a significant reduction in head pain the following day, which Dr. Dodick told us couldn't have been the actual Botox because it takes a minimum of several days to start working, usually peaking around the 1-2 week mark. Instead, we collectively assumed it was just the actual needles releasing tension in my muscles (the Botox injections were ALL over my head/face/neck/shoulders).
So last week, Dr. Dodick, Craig, and I decided that we'd attempt to recreate that same effect by starting a series of injections over the next few months that would alternate between lidocaine (a local anesthetic) and Botox. In the meantime, I'd also try out a muscle relaxant, Soma, to see if that would help nudge my muscles in the right direction. I started Soma on Wednesday night and then switched over to another version of it that also contains Codeine (an opioiod pain medicine).
Then on Friday afternoon, I was scheduled to see a new physical therapist, Dan Daliman. Mark, my PT in Austin, had found Dan for me to follow up with and re-check my alignment. Based on what Craig was feeling with his hands, we thought it was okay, but given that my pain hadn't budged, we were both looking forward to having another person take a look. According to Dan, my C2 was out just a little bit, so he used some muscle energy techniques to realign it. He also started me on some basic strengthening exercises of my deep neck flexors...his logic being that these stabilizing muscles (like the longus capitus and longus colli) are weak, and consequently, my larger, more superficial neck muscles (like my sternocleidomastoid (SCM) and scalenes) take over.
So naturally, after a few sets of chin tucks and the like (see below), I had a complete meltdown. Not because this didn't make sense to me (because it does!) but because this is a treatment approach we've tried so many times before and when I start hearing the same explanations and am prescribed the same rehab exercises all over again, this feeling of sheer panic starts to set in and the voice inside my head says, "holy shit....no one can help me." But Craig reminded me over and over that because of the new position of my spine, things I've tried before were different now. I knew he was right but keeping a positive mindset is always easier said than done. But since my sanity and quality of life pretty much depend on it, I don't let feeling discouraged get in the way of committing 100% to the path of treatment I'm pursuing, so I headed in to the weekend ready to tuck the shit of my chin (for reps of 12) all. day. long.
I was also having a hard time on Saturday because my birthday was the next day. The big 2-7. No, I'm NOT one of those people who bitches about turning a year older...because my boyfriend is 14 years older than me so I will be...forever young. Kidding! A fear of aging is actually a pet peeve of mine, and one I'm committed to keeping for the rest of my life. Just being able to turn a year older is a privilege taken from too many people too young. Out of respect for those whose time is cut short, how can we complain? This is eventually the realization that snapped me out of feeling sorry for myself. (But for just a little while, I did feel sorry for myself). I was bummed out that I was turning a year older and my headache hadn't changed one bit since my 26th birthday. Last February I was in the neck brace as part of the treatment I was doing with Dr. Crutchfield in Baltimore, so Craig and I went for a hike and I promised myself that by next February 8th, not only would I be on a birthday mountain ride, I'd be half way through the 2015 MBAA race series.
But then something kind of strange and equally amazing happened. Over the course of the afternoon, my headache gradually dropped a few notches. Still there, still painful, but noticeably different than "normal". On Saturday night, we went to see one of my favorite bands play, The Avett Brothers, and unlike almost every concert we've been to in the last year or so, I was able to stay for the entire show!
And it gets better. I woke up Sunday morning and my pain was still quite a bit less than normal. Talk about a birthday present! Not sure if this was the best idea, but out of pure celebration and a "f*** it, it's my birthday" attitude, I even joined Craig for a nice easy mountain bike ride. Sunday night came and went. Then Monday. My pain was still low. It was GLORIOUS.
By Tuesday morning, it had started to creep back up again and continued to do so until I was back to my normal headache on Tuesday night. I had been vigilant about my PT exercises, was still taking the muscle relaxant, and had scheduled a session with my friend Anna at Movement Rev to work on my thoracic spine mobility.
On Tuesday afternoon, Craig and I headed over to Mayo to start my first round of injections with Dr. Dodick. That morning, Craig took to my back and neck with a pen and helped me mark all of the spots for Dr. Dodick to target with the lidocaine. After 15-20 injections, Dr. Dodick told me that if this did affect my pain, he'd expect it to be relatively immediate. I had another PT session on Wednesday morning, adding in a few more strengthening exercises for my deep neck flexors. By Wednesday night, I felt totally wiped out and my pain had started really creeping beyond "normal".
That trend continued into Thursday, so that made for a kind of rough day, but it wasn't until Thursday night that things took a really bad turn. Around dinner time, my headache spiked to a level it's only been at a few times in the last few years (one of those times being my ketamine infusion in the fall). It felt like a rod was going through my temples and that lasted through the night and into this morning. I was couch-bound until about mid-day and it finally started to subside, though I still feel substantially worse than my typical headache.
We're not really sure why the injections into my muscles had that effect, though it is somewhat encouraging because it reinforces our hypothesis that soft-tissue is driving the pain. It's so hard to know for sure, but it's possible that the misalignment was originally causing the soft-tissue tightness and now that the alignment is corrected, the pain could be driving the tightness. Either way, the improvement I felt last weekend and the more recent pain spike affirms that the pain and tightness are intimately related. Now we've just got to figure out how to stop both.
Back from a mentally exhausting but highly productive few days in Austin. Our trip went really well...just about as well as it could have gone...with the exception of one small detail...my head still hurts (quite a lot, actually). Now that I'm writing it, it does seem a little absurd to call anything that doesn't result in my headache going away a success. But there is plenty of positive to pull from the week, including a serious possibility that pain reduction is on the horizon. And somewhere along the line, the definition of "success" has been recalibrated from "desired outcome" to the hopeful notion of "possibility".
So here's the day-to-day breakdown.
Monday:
When Craig and I arrived at my first physical therapy visit with Mark Strickland on Monday morning, he had already spent time reviewing the films, and even sharing them with several colleagues across the country who share his speciality of treating complex upper cervical cases.
Palpation of my neck confirmed what they had collectively interpreted from the images: gross left rotation of my atlas (C1) and axis (C2). The spinous process of my C2 was a solid 1/2 inch off midline, which he told us may have been the most severe he's ever seen.
Mark used some gentle manual techniques to reduce my C2 and given the severity of rotation, was surprised how easily it moved into proper position. He then used very specific and targeted dry needling to help relax the muscles connecting my head to my neck. My soft-tissue was so tense that it actually bent one of the needles sliding into it! Kind of crazy.
Of course it makes sense that these muscles (see below) have been in a chronic state of spasm because the over-shortening/lengthening that has occurred as a result of my twisted vertebra. And it makes even more sense that no amount of soft-tissue work, needling, etc. could resolve the tension if the mechanical problem causing it wasn't addressed.
There's no way to know for sure what the exact mechanism of my pain is, but Mark speculates that it's likely one of two (or a combination of both) sources:
1. The dura mater, which I've talked about before, is a thick membrane that is the outermost of the three layers of the meninges that surround the brain and spinal cord. The dura is attached to the atlanto-occipital junction (AO junction = articulation between first cervical vertebra and occipital bone), and when the vertebra is rotated, as is the case with me, it can cause a sheering of the dura. You're dying to know how though, right?
So the dura is connected to the rectus capitus posterior minor muscle (highlighted in red below) at the atlanto-occipital junction (AO junction = articulation between first cervical vertebra and occipital bone) via a perpendicular-running connective tissue. That bridge of connective tissue resists dural movement toward the spinal cord, so when my C1 and/or C2 vertebra are as grossly rotated to the left as they've been, that shortens one side of those tiny muscles and over-lengthens the other. It's that over-stretching/shortening that then "tugs" on the dura and creates the sheering.
It's still not totally clear to me how this translates to head pain, but what I do know is that the dura is a highly sensitive membrane so perhaps it's a matter of nerve irritation or maybe referred pain? If you know, feel free to enlighten me!
2. The second possible source would be referred pain to my head caused by the spasm and tension of my surrounding muscles. Remember the whole pain-spasm-pain cycle I've talked about before?
As far as expectations for the week ahead, Mark told Craig and I that although he wouldn't be shocked if my headache subsided over the next few days, we shouldn't be discouraged if it didn't. My spine had, after all, been in this position for a long time (over 3.5 years) so regaining alignment may be more of a process than an overnight miracle. (I'll take either one, by the way.)
And we did leave that first day feeling incredibly encouraged, and not just because there was a chance my pain may subside in the days ahead but because this all made so much sense. When Mark manually rotated my C2 vertebra back in place, his fingers were on the exact spot I've been pointing to for 3.5 years as the SOURCE of my headache. And it wasn't just further validation of my own intuition, but even the "findings" of other practitioners. Veronika, the visceral mobilization physical therapist I had worked with for months and her mentor, Gail, who I had gone out to see in Newport Beach last spring, had always felt this "deep dural tension" at my C2 that they just couldn't seem to get to.
Tuesday:
When he returned for treatment numero dos on Tuesday, Mark felt that my C2 had held proper alignment (yay!) but my C1 had slipped back into rotation. Upon reviewing my pre and post x-rays from this fall, he could tell that the 6 weeks of atlas-orthogonal chiropractic treatment I'd undergone had definitely improved my atlas rotation, but not fully. So I think that a slip out of alignment after just one day reinforced that this wasn't going to be a quick fix. Mark told us that he wanted to bring in a neuromuscular dentist that he works with, Dr. Ueckert to help.
You probably don't think of dentists and physical therapists collaborating all too often, but it actually makes a whole lot of sense when you understand the relationship between occlusion (meaning the contact of your teeth) and the upper cervical spine.
To remind you, since my mountain bike accident in 2011, I've experienced a pretty significant "pop" in my jaw every time I open my mouth. I've sought treatment from several different dentists, orthodontists, and TMJ specialists, not because the pop is painful but because it seemed probable that my jaw dysfunction could be tied to my headache. Until now, it seems to have always been viewed as a separate issue though.
During this second session, we introduced some corrective exercises that use muscle energy to help reinforce the re-alignment that Mark was manually putting me in. The lighting's a bit dark but here's a video below.
We finished up Tuesday's visit with some dry needling of my inferior neck and face. Some of the needles didn't feel too bad but my masseter (muscle connected to mandible and cheek bone) was quite painful.
Wednesday:
On my third day, Dr. Ueckert was kind enough to meet us over us over at Mark's office. It was clear to both of them that the retrusion of my lower jaw has been compressing my temporomandibular joint (TMJ). He explained that he would make me an appliance that moves the contact points of my teeth forward, which would keep my jaw from sliding back. This, in turn, would help to hold my upper cervical vertebra in optimal position.
If you're trying to grasp how your bite and upper cervical spine position impact each other, try this: look straight ahead and tap your teeth together a few times. Notice where the contact points on your teeth are. Continue to tap your teeth together, but now rotate your head from side to side, then look up to the ceiling and now down to the floor. Notice how the contact points change as your spine moves?
To ensure that the molds were taken while I was still in the correct position from Mark's treatment (if we had driven over to this office, I may have slipped back out) Dr. Ueckert took them right in the PT treatment room. First though, he hooked my face up to a tens machine to help relax the muscles and get into a more reflexive bite pattern. The actual appliance wouldn't be ready until Friday but he was able to make me a temporary splint right then that I would wear for the next few days to optimize my chances of "holding".
As soon as I had the temporary splint in, I could open my mouth without my jaw popping! That may not seem super significant, but it's literally the first time in over 3 years I've been able to do that. And to confirm that we were on the right path with this whole approach, they sent me over to get x-rays on Wednesday afternoon after first going to Dr. Ueckert's office to finish the rest of my impressions. Both Mark and Dr. Ueckert were excited by the findings. Check out my pre and post orthotic images below. The improvement in my temporomandibular joint space once the appliance is in my mouth is impressive. You can imagine the how easily the compressed joint (on the left) could have been causing significant tension, which would of course be feeding the pain-spasm-pain cycle.
Mark didn't do any dry needling on Wednesday and actually told me to discontinue the corrective exercises I had been doing every few hours since our last session. Now that I was in proper alignment, the splint should theoretically take care of the holding.
Thursday:
After a full day and night of wearing my temporary splint, we were all happy to learn that I had held alignment on Thursday morning. Mark continued with some of the manual work and the dry needling. At this point, I still wasn't feeling any improvement and a sense of general exhaustion was building up...I think it's due to my realization that I likely still had have quite a ways to go before I'm pain-free, but everyone assured me that there was absolutely no reason to feel discouraged.
Friday:
Our last day in Austin had arrived and the hours leading up to our flight home was jam-packed. It started with my final session with Mark. My upper c-spine was still holding, which was great, and he showed Craig and I how to tell whether it was slipping back once we got home (see video below). If that does happen, the first step will be to re-start the corrective exercises.
From there, we headed over to Dr. Ueckert's office to make the final adjustments on my orthotic, which took a few hours. He had to replicate the process of relaxing my muscles and getting me back into a reflexive bite pattern and then tweak the splint over and over again until my conscious bite matched up to my reflexive bite.
And THEN we raced to the airport to catch our flight home. Side note: Austin is a sweet city! We didn't have too much time to explore because Craig was working when we weren't at my appointments but we stayed right near Zilker Park, ate at the flagship Whole Foods at least...uh, 200 times, checked out the infamous food truck culture, and managed to catch this beauty of a view from the top of Mount Bonnell.
So, the plan moving forward is as follows:
1. I'll wear the orthotic 24 hours per day for the next 6-9 months. Depending on what happens to my pain between now and then, there would be 3 potential scenarios. The first would be weening off the orthotic. The second would be neuromuscular orthodonture, where they would use orthotonduure to create an optimal bite for my c-spine. I'm not able to think, read, or write too much about that one without having a minor meltdown so .... moving on to the third scenario, which would be restorative dentistry. That would consist of actually building up my teeth to achieve the bite. One day at the time though.
I can't say I'm super pumped about sporting a sometimes lisp-inducing mouthpiece and I can't say I didn't cry in frustration trying to eat my first kale salad with what feels like a f-ing soccer mouthguard covering my teeth...BUT...Craig has reminded me over and over again that once I start feeling some relief, I'll have an entirely new context for tolerating it. I can't argue with that. And honestly, I'm so desperate for pain relief that I can't afford to be annoyed by something so insignificant.
2. We'll travel back to Austin in 2 months to get the orthotic adjusted and will also have a follow-up with Mark at that time.
3. Craig and I will keep checking to make sure I maintain my alignment.
4. I'll modify my activity to minimize tension in my traps and neck (I knew that was coming).
5. I'll start re-introducing some soft-tissue work in my weekly routine. Now that my bones are where they should be, my muscles should theoretically have an actual chance of settling down. Ideally, that will disrupt the pain cycle.
6. Both Mark and Dr. Ueckert have told us that 3-6 weeks would be a reasonable time frame to start experiencing some changes, so we'll be praying with every ounce of our beings that I start feeling some pain relief in the next few weeks!
This past Wednesday I had an appointment with neurosurgeon, Dr. Willis, to review my films and get his take on the "kink" in my spinal cord at the C2/C3 level. These kinds of visits can be tough for me, because even though I'm asking a specialist a very specific question, I still have to provide context by painting the bigger picture. As a specialist, they're then going to absorb and respond to my "story" through the lens of their own expertise (naturally). Bur depending on that particular specialist, their ability (or inability) to communicate with me, the patient, in a clear yet compassionate, empathetic, and non-egotistical way can determine just how hopeful or hopeless I feel when I walk out their door.
For example, when I ask an upper cervical chiropractor why I'm not responding to treatment and is there any "next step" he recommends to other complex and unresponsive patients and he says "No, this is really the only treatment that targets this issue" when he could have said, "Personally, I don't have experience sending patients to someone else for this particular upper cervical issue but it doesn't mean another solution doesn't exist".
Another example: The neurosurgeon telling me that he wasn't concerned at all about my MRI, that he's confident the "kink" in my spinal cord is congenital and completely unrelated to my bike accident (which was exactly what we were hoping he'd say), and because it's not a "dangerous" situation requiring his intervention, it's going to just be a matter of managing the symptoms and that sometimes there's really no cure for whiplash-induced pain...when he COULD have said something like, "I'm not concerned at all about your MRI and I'm confident the "kink" in your spinal cord is congenital and completely unrelated to your bike accident. I can't really speak to what's going on musculoskeletally since that's really not in the realm of my expertise but now you will be able to pursue the treatment options that are out there with confidence that you don't have a basilar invagination."
See my point? It's okay for a doctor to tell a patient that they just don't know the answer or that the've emptied out their bag of tricks but for them to imply (or bluntly state) that the patient has exhausted their options is a blow to their hope. Without knowing the patient's existing supply of hope, it's insensitive at best, and destructive at worst. I'm really not trying to complain or get caught up in the semantics of conversation, rather, convey a lesson this entire experience has forced me to learn: the message you deliver to someone matters. HOW you deliver the message matters...sometimes just as much.
Luckily for me, when I start to completely unravel after an appointment like last Wednesday's, I have Craig there to wipe away my tears and then pick up the plastic spine model with the metal disc implant off his desk and say, "See this, Katie? THIS is what he does. THIS is what he learned in school. THIS is what he knows everything about. We had to ask him one question and we got the answer we needed and nothing else he says matters. That's why we're going to Austin."
So back to the update. Dr. Willis doesn't think I have any significant instability and doesn't think the x-ray images he saw were pathological. He didn't see any issues at my occipital cervical junction and really didn't know what to think of my digital motion x-ray since he's never looked at one before. He did write me an order for a new static C-spine flexion/extension x-ray, though, which I had done this morning.
Let's see, a few more updates...
I stopped taking Celebrex after about a week, per Dr. Dodick's recommendation (it wasn't helping). I'm scheduled to see him again in early February to reconvene after my PT week in January.
Last week, I was experiencing a string of abnormally high pain days. We were also experiencing some abnormal stormy weather here in Phoenix, and Craig and I think we figured out a correlation between the low barometric pressure and my pain spikes. We're not really if and how the low pressure could possibly be affecting my cerebrospinal fluid flow, or perhaps just the inflammation itself, but this is as least one more piece of data to carry with us to Austin.
Since we know there is some inflammation involved and because my neck and upper back muscles have been ridiculously tense and knotty lately (which I KNOW is connected to my C-spine and head) and because I've been completely unresponsive to anti-inflammatories and manual therapy, we decided it might be a good idea to revisit a modality I initially tried out about a year ago, Cryotherapy. The naturopath that I see, Dr. Popiel, has a cryosauna at his office. The plan is to try a few sessions as a way to hopefully get my pain to a more manageable level in these next few weeks. I had one cryotherapy session last Friday, one this morning, and another one tomorrow and will pick it up again next week. After talking to Dr. Popiel this morning, we also decided I would re-try Magnesium IV therapy (starting tomorrow) at a much higher dose than I tried last year. Magnesium IV therapy is often used in the treatment of pain, because in addition to helping cells make energy, enabling various chemical pumps to work, and stabilizing membranes, Magnesium also helps muscles to relax.
Merry Christmas, and see you next year. 2015, I hope you're ready because I'm comin' for ya!
Well, damn. I was really hoping that last update was the game-changer treatment. But after six weeks of seeing Dr. Trombetta three times per week, here I am...headache going strong as ever and patience running thin. On a positive note, I do still feel 100% confident that we've shed light on the source of my head pain (upper cervical dysfunction), which is a lot more than I could have said a year ago this time.
After experiencing nothing but consistent pain spikes, I decided to stop the atlas-orthogonal treatments a few weeks ago. Along with my "F***-this" attitude (hey, just being honest), this also brought an end to the exercise/postural modification recommendations I'd been adhering to over these last few months. Physiologically, could a return to lifting and mountain biking be putting my spine in a less-than-desirable position for healing? Maybe...probably. But the reality is, working out has proven to be the most effective way for me to deal with the mental agony, frustration, and fear that comes along with unrelenting pain. If my headache had improved over the last two months, I would be motivated beyond belief to stay off my bike and out the gym...but it hasn't, so for know, I'm putting logic on the back burner and doing what I need to do to keep my head above water. And side note: After only a week of my return to lifting, I've finally started sleeping through the night...something than my pain has made difficult to accomplish, especially this fall. If that isn't proof of my body's positive hormonal response to resistance training, right?
So is there a next step? Thanks to Craig, there always is. Dr. Dodick (my neurologist at Mayo) recently put us in touch with a physical therapist in Austin, TX, Mark Strickland. Mark specializes in upper cervical and temporomandibular joint disorders and was one of the first certified Craniomandibular Therapists (CFC) in the U.S. and currently one of 24 certified Craniomandibular Therapists (CCTT) in the world. Dr. Dodick, who's also director of the Sport Neurology and Concussion Program at Mayo Clinic and highly involved in concussion-prevention research, discovered who Mark was after learning that pro football players with upper cervical/headache injuries were flocking to his clinic in Texas.
We sent over my films for Mark to review, including my digital motion x-ray, MRI, and 6 c-spine x-rays. He told us that he'd know right away if what he saw warranted us flying out to see him for treatment. Craig and I were both super encouraged to hear his interpretation of the films: "looks like a laterally subluxed Atlas with a right rotated axis...wow! OUCH" because it's one more puzzle piece that fits...The AO treatment was, after all, only targeting my subluxed Atlas, but if my axis (C2) is rotated, how realistic is it that I'd find relief unless that too was corrected?
I'm scheduled to see Mark in Austin on January 12, which means I'm fully embracing just how quickly this time of year seems to "fly by". The plan is to see him five days in a row, and then we'll go from there. In the meantime, Dr. Dodick wrote me a prescription for a new medication, Celebrex, just to see if it can help me manage my pain between now and then. This is just a more powerful anti-inflammatory (which means no shitty side-effects like all of the other migraine and pain meds I've tried), so certainly worth a shot.
In my last post a few weeks back, I left off with mention of an upcoming appointment with Dr. Trombetta at Gentle Touch Head & Spine Center. Dr. Trombetta is a chiropractor who specializes in the Atlas-Orthogonal Technique. Here's a little introductory snidbit explanation of the AO Technique...
As an Atlas Orthogonal Chiropractor, Dr. Trombetta realigns the atlas vertebrae with a gentle adjustment that doesn’t include any popping, cracking or twisting of the neck. Instead, the Atlas Orthogonal (AO) procedure uses a percussive sound wave to realign this bone. Prior to the adjustment, Dr. Trombetta performs a thorough examination and history of each patient and takes x-rays to diagnose the misalignment in the neck causing the problem. This allows for the adjustment to be both precise and unique to each individual patient.Most patients experience very little if any discomfort during the adjustment and after the adjustment and, generally, patients experience an either an immediate decrease in severity or welcome relief of their symptoms. The speed of recovery is determined by many factors including history of injury, amount of time spent suffering with symptoms, work environment and daily activities.
My first appointment with him was spent discussing my (growing) treatment history to date and asking questions about the AO technique. Before proceeding, the first step would be to take some images of my neck. X-ray analysis is then used to determine the precise measurement for realignment. So I went back later in the week for a series of x-rays, and finally my first treatment at the end of the week.
When it came time to hear Dr. Trombetta's interpretation of my images, Craig and I were both pretty psyched to learn that some dysfunction in the c-spine was notably apparent.
To start with, he pointed out the position of my atlas. The atlas (or C1), is the topmost vertebra and along with the axis (C2), forms the atlanto-occipital joint, which connects the skull to the spine. It's a pretty interesting bone because unlike your other vertebra, it's ring shape and has no "body" because it's body is fused with the axis.
Both the atlas and axis are important neurologically because the brain stem extends down to the axis.
So, the atlas is supposed to sit at a bit of an angle, as you can see below in this x-ray of a healthy C-spine. But if you look closely at mine on the right, you'll notice that the angle of my atlas is much less...it appears to be more "flat".
Since the atlanto-occipital joint allows the head to nod up and down on the vertebral column, my "homework" is to avoid that flexion/extension motion as best as possible. That means making a really conscious effort to do some basic daily activities differently. For example, I've been trying to lift my phone up into my field of vision instead of looking down at it. Try that for a day and you'll be surprised how much time you spend "looking down" (...or take my word for it, your call).
This was an interesting observation, though, because of the basilar invagination that I've talked about before. I posted this MRI image a few months ago, but here it is again.
Notice the "kink" in my spinal cord? It's right at the level of C2. We don't know for sure, but can at least theorize that the altered position of C1 could be affecting the position of C2, which could be somehow pushing in to my spinal cord, contributing to the basilar invagination. (Side note: Every doctor I talk to about the basilar invagination seems to have a different opinion of its significance, ranging from "that's probably just your anatomy and I wouldn't worry about it" to "that's absolutely concerning". I do have an appointment coming up in mid-December with a neuro surgeon to get their take.)
How could all of this be related to my headache? Well, that's where cerebral spinal fluid (CSF) may come into play. I know you're biting your nails to know more, so here's a closer look at the function of CSF. It's actually pretty fascinating. And if you want to have your cerebral-spinal-fluid-cushioned mind really blown, watch this 10 minute Ted Talk.
Cerebrospinal fluid (CSF), clear, colourless liquid that fills and surrounds the brain and the spinal cord and provides a mechanical barrier against shock. Formed primarily in the ventricles of the brain, the cerebrospinal fluid supports the brain and provides lubrication between surrounding bones and the brain and spinal cord. The fluid also transports metabolic waste products, antibodies, chemicals, and pathological products of disease away from the brain and spinal-cord tissue into the bloodstream. CSF is slightly alkaline and is about 99 percent water. There are about 100 to 150 ml of CSF in the normal adult human body.
If you're like me, maybe you'll appreciate a visual representation of CSF.
Once you understand just how important CSF's functions are (including buoyancy, protection, chemical stability, and waste clearance), it's really not a jaw-dropper to learn that there's is a correlation between the obstruction of CSF flow and intracranial pressure headaches. There's actually an AO chiropractor in NY, Dr. Rosa, who uses the upright MRI that I mentioned in my last post, to study this very phenomenon. What their research has found is that in some patients with severe, long-standing headaches post-whiplash injuries (hey, sounds familiar!), there is a misalignment of the atlas vertbra (still sounding familiar), along with substantially reduced CSF flow at the cranio-cervical junction. When the patients undergo the AO chiropractic treatment, restoration of normal CSF flow is observed and reduction/elimination of head pain experienced.
We may end up going to NY to have the MRI done, but in the meantime, can only speculate that my CSF flow could also be obstructed. Either way, the goal of the these AO treatments is to improve that.
Another quick data point to interject...In October of 2013, I had a pretty scary pain spike reaction (remember I described it as feeling like I had an electric mixer in my brain?) to a cranial sacral session. The PTs who were working on me had speculated that it was somehow due to CSF flow and I ended up back at Mayo getting an MRI to rule out a CSF leak.
There are a few more images we looked at too. This next one shows a misalignment of my head on my spine. It's pretty clear if you just follow the axis down. Theoretically, this could be a result of the atlas misalignment.
Lastly, this view further shows the misalignment. There should be 4 right angles, but because of my head tilt, that's clearly not the case.
I've been seeing Dr. Trombetta three times per week for almost a month now. Each visit, he checks to see if I've "held" (which he determines by manually palpating my neck and measuring my leg length). I've been "holding" about the half the time I see him...a response he seems to be really encouraged by. The million dollar question though...am I feeling better? Drumroll...
Eh. No...not yet at least. But there was a glimmer of hope after my second adjustment. I had my first one on Friday 10/31, had an awful flare-up weekend, went back Monday and was "out" so had a second one, had a bad flare up Tuesday, and then Wednesday I woke up with the lowest pain in 2 years (even lower than magical marijuana Sunday earlier this fall). It was pretty amazing. Amazing enough that this time, Craig cried happy tears as we hugged goodbye in the driveway before he left for work. And then something even more amazing happened...I woke up the next morning and STILL. FELT. GOOD. Holy shit, right?
By Friday, I was back up to my "normal" pain. I've experienced a few "low end of normal pain" days since, but nothing close to that level of relief. Heartbreaking...yes, but I was (still am) unwilling to discount its significance.
Despite my frustration in not making better pain progress these past few weeks, this is truthfully the most hopeful and optimistic I've felt in a long time. That's because I finally feel like the intuition I've had about my headache for 3 years and 3 months is substantiated. How many doctors offices have I sat in, pointing to C1/C2 on my neck and saying, "my headache is coming from right here!"
While it's a good sign that I'm holding at all with the AO treatments, the goal is to get me holding longer between treatments. So right now, I'm trying to just maintain my optimism and take the AO treatments day by day. Aside from focusing on my postural adjustments, I've been modifying my physical activity too (ugh!). No lifting...no riding...basically nothing that takes my cervical spine out of a neutral position or creates tension in my traps and neck. Luckily, I've managed to continue some Pilates with those modifications in mind.
Two weeks ago, I had a previously scheduled follow-up with Dr. Dodick (neurologist at Mayo). Understanding the predicament I'm in with my lack of response to...well, basically everything we've tried...Dr. Dodick was totally aligned with and supportive of my course of AO treatment. Just because I've never tried it before (and because "I've never tried it before" has sort of become the qualifying criteria for trying something new), he wrote me a prescription for another migraine drug, Amerge (Naratriptan). I've been on it now for almost a week, but haven't felt any changes so will likely discontinue when my trial dose is gone in a few days.
So THAT is what I've been up to. That, and a whole lot of this...
