PT trip to Austin

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.

Neuromuscular dentistry is the science of studying the muscles and nerves of the head and neck to determine an optimal orthopedic relationship between the upper and lower jaw. This will allow the rest of the body to align properly, and may help eliminate nagging symptoms due to a misaligned bite position. When the jaw is not properly aligned, damage can be done to the teeth as well as their supporting tissues. This approach to neuromuscular dentistry presents an effective, efficient and timely solution to those that suffer.

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!

Austin-bound

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.

ready for September

I'm not posting an update on my Tampa trip (yet), due to some curveballs that got thrown my way these past few weeks and delayed our trip until the beginning of September. Such is life right? So here's all that's gone down in the last month and a half.

Shortly after my last post, Craig and I headed back to AZ Pain Specialists. Our goal in returning to the clinic, where I had seen Dr. McJunkin last year for medial branch nerve blocks at C2-C5 and dorsal root ganglion blocks) was to find out what regenerative treatment options they had in their arsenal. We had initially discussed platelet-rich plasma therapy (PRP) and stem-cell therapy but weren't sure they did that at the C1/C2 level (and it turns out they don't). We discussed a few other potential options to explore like peripheral nerve stimulators, which consists of actually implanting a device under the skin that produces a low voltage current, creating a sensation that blocks the brain's ability to sense the perceived pain. While I'm open to pretty much anything that has a chance at getting rid of my headache, this is one treatment that I just refuse to pursue (for a few reasons). We've discussed the actual research with my neurologist Dr. Dodick and for chronic headaches, the short and long-term outcomes really aren't good. But beyond that, I'm more certain than ever that I have a biomechanical/structural issue at the root of my pain that throwing some electrodes under my skin isn't going to fix. We did leave his office with another round of DRG blocks scheduled for a few weeks out though, as I seemed to have some questionable pain reduction in the following hours after last year's.

By early July, I had finished up my third or fourth prolotherapy session (from C2 and below) without progress. They would have expected at least some reduction in pain by this point, so we decided not to proceed with more sessions.

As I detailed in my last post, Craig and I finalized our trip to Florida for my consultation with neurosurgeon Dr. Franck, but had simultaneously stumbled upon a doctor in Chicago who specializes in regenerative therapies (including those in the upper cervical region). Craig got in contact with Dr. Hauser at Caring Medical , who, after reviewing my case, agreed it was worth flying out to see him. Here's two helpful videos of Dr. Hauser explaining how instability at C1/C2 (which we know I have from my digital motion x-ray) can compress the vertebral artery and cause chronic headaches originating from the suboccipital region. Side note: this is basically the same mechanism of pain that Dr. Franck targets, but obviously with less invasive techniques.





The approach Dr. Hauser uses to heal the ligaments at C1/C2 involves a combination of prolotherapy, stem-cell therapy, and PRP.

Lucky for us, he happens to have two offices - one just outside of Chicago and one in Ft. Meyers, FL, just two hours away from where I'll be seeing Dr. Franck. So we arranged my visits with both doctors during our trip at the end of July, just a few days after returning from our vacation with my family in Massachusetts.

Ahh, yes...about that vacation.

Craig and I flew into Boston on a Friday night. His plan was to be there about a week and I would stay closer to two. Even though I always look forward to annual vacations and holidays, they serve as a harsh reminder of another year passed without relief from my headache. Not to mention that they're supposed to be fun, social, relaxing; an self-inflicted expectation that makes my inevitable need to "leave early" from whenever I am or skip out on plans entirely all because of my intractable headache...that much more difficult to deal with.

I was so frustrated by my pain last summer that I told myself I wouldn't fly home again until my headache was gone. So this past Christmas was the first I ever spent away, but by the time this summer rolled around, I hadn't seen my dad or sister in a year (and only my mom for a few days last fall when she flew out to help take care of me during my ketamine infusion), so how could I keep enforcing a now clearly unsustainable rule? Our vacation was going to be low-key, though, so despite the anxiety I was feeling about my head, Craig and I were both looking forward to some time with my family, a few nights showing him around my college town in upstate NY, a day-trip to the Cape, some time at the beach, and some much-needed R&R.

On our first morning there, Craig, my mom, and I took our dog Zoe out for an easy hike in the woods by my parent's. The plan was to spend the rest of the day at my aunt and uncle's house for a family get-together, so when we got back from our hike mid-morning, I took a shower and got ready to leave. Mid-blow dry, I started feeling a bizarre ache in my left side...at first it felt like mild cramp but worsened by the minute and soon I was curled up on the couch in tears while Craig got directions to the closest hospital. When we arrived 20 minutes later, I was quickly ushered through the ER with apparent text-book symptoms of kidney stones. A CT scan soon confirmed that.

Kidney stones? What the f---?

The doctors gave me some narcotics, which got my flank pain under control and I spent a few hours on IV before being sent home. I was expected to pass the stones in a few days and prescribed more pain meds to stay comfortable until then. Craig and I ended up back in the ER in the middle of the night though, as the pain had gotten out of control again. This time, I was given a narcotic called Dilaudid, which helped my kidney stone pain but little did I know, would become my worst enemy over the next week.

We finally got back home early Sunday morning and tried to catch up on sleep. I was still feeling pretty shitty so spent most of the day in bed or on the couch. By Sunday night, things started to get really ugly for me as my headache started to climb beyond its normal baseline. The feeling of a drill going through my temples kept me up all Sunday night and by Monday morning it had reached an unbearable level. I couldn't eat or drink without throwing up, I couldn't sleep and I could barely talk because of the pain. Between my kidney stone discomfort, which wasn't exactly manageable at this point either, and the terrifying headache spike, we were back in the car to the hospital. This time we knew we needed to go straight to Mass General in Boston.

After a long few hours waiting in ER, I was given more pain meds and and later admitted overnight for observation. We had figured out at this point that I was having a rebound headache (layered on top of my normal headache) from the Dilaudid I had been given over the weekend. As uncomfortable as the whole kidney stone ordeal was at the point, I knew it was temporary...the pain I was feeling had an expiration date. My head, on the other hand, was a different story. I knew the increase in pain from the narcotic couldn't last forever, but I was also fully aware that I was in the best hospital in the country with a headache like I had never felt in my life and that I would be leaving the hospital in how ever many days with my headache. It made the whole situation feel more overwhelming than I can explain. Each time a doctor or nurse would ask, "what normally helps your headache at home?", I felt so helpless having to answer, "nothing, nothing helps it". By that point, Craig had been in communication with my Mayo neurologist, Dr. Dodick, who was then able to speak to the doctors at MGH and make some recommendations for my head. Finally, an IV drug called dihydroergotamine mesylate (DHE) seemed to get things under control. Speaking of Craig, if I had any ounce of doubt before this trip that he wasn't the best, most caring, loving, resilient human on the planet (which, for the record, I didn't), it's gone.

By Tuesday, I hadn't eaten and barely been able to drink since Saturday and that was definitely catching up with me too. I was on so many meds at that point that I'm not even sure what was making me sick but any sip of water that went in came straight back up along with plenty of dry heaving. Nice, huh? At some point on Tuesday morning, I woke up with a 103 fever, which was an obvious red flag for a blood infection. Apparently kidney stones can disrupt the whole filtration system enough that bacterial infections can occur. Later that afternoon, off I went to the OR to have a ureteral stent put in (which goes from kidney to bladder). This would stay in for a few weeks until I was finished my antibiotics and then I'd get both the stent and the stones taken out back home in AZ at Mayo Clinic.

I spent a few more rough nights in the hospital and finally got home Thursday night. I spent the next few days in recovery mode - slowly getting my appetite and energy back. My neck and upper back were in rough shape from from being in a hospital bed all week so I had a few massages scheduled, but my head took another turn for the worst on Monday after my first massage. We think I maybe still had some Dilaudid in my system or something. I realized when I arrived back in Phoenix on Tuesday that I had lost at least 10 lbs in 6 or 7 days, which had me feeling really drained.

In the whirlwind of the previous week and half, we hadn't really had time to deal with the obvious question of why the hell I had gotten kidney stones. They don't run in my family, I hydrate like a f-ing champ, I don't drink soda, I don't consume a ton of animal protein, I eat a completely unprocessed diet. The only thing that seems like a potential risk factor is that I consume a fair amount of high-oxalate foods like beets, spinach, and nuts, but could that really be the cause? I still don't know for sure what the reason is but during my consultation with the Mayo urologist the day after I got home, I found out that an anti-seizure medication I was on last summer for my headache, Topomax, is known to cause kidney stones. And even though this was a year ago, apparently the stones can take that long to develop. Awesome.

As I sat in the urologist's office that day, frustration with my headache was boiling over in the same way it had back in Boston when the doctors calmly asked what I take at home for pain relief. My eyes welled up with tears as the doctor walked me through the details of the incredibly routine procedure he'd be performing the following week...but not because I was afraid of getting a kidney stent taken out...What was really making me upset was how f-ing straightforward the whole thing was. I got kidney stones...they hurt, it sucked, I went to the hospital, I had a procedure, I took medicine, and in a few weeks it would all be behind me. That's how these things are supposed to work. So why, three and half years and over a hundred doctors later, do I still have a headache? No temporary pain, however bad it is, compares to the inescapable agony of chronic pain.

On Tuesday (two days ago), I went back to Mayo to get both the stones and the stent removed. Before surgery, they said there was a high probability that my ureter would be inflamed from the stones and another temporary stent would have to be implanted to keep it from closing up, but fortunately, when I woke up, I found out I was in the clear. In fact, the stones didn't seem to be there anymore (maybe broken down on their own) but whatever material they did recover will be tested to know for sure if the Topomax played a role.

Long story short, all of this nonsense is the reason the Tampa trip is pushed to next month (and also the reason I postponed the DRG blocks to a later date). I wanted to have a few weeks for my body to get back on track - to eat well, work out as much as I can tolerate - before beginning the regenerative therapy treatments. I'll be going into a neck brace for the 12 weeks of those treatments so mentally as much as physically, I needed a few weeks to decompress and get my shit together. And before FL, we also have a quick trip back to Austin for a follow up with dentist Dr. Ueckert and upper cervical PT Mark Strickland. I've been wearing my dental splint since we initially saw them back in January and need to figure out the next steps with that.

So...come on September, I'm ready for ya.

these last six months

...have gone by without a headache update. Lame. I know.

Even lamer is that I have a whole bunch of unanswered emails from readers (fellow headache sufferers) sitting in my inbox right now. It's not that I don't appreciate (and want to reciprocate) the support or ability to bounce treatment options off of each other; just that I've somehow felt wholly incapable of diving into those conversations. Like I just haven't had the mental or emotional capacity to talk about the pain that already consumes every waking minute of my life.

It's weird. When I first started writing this blog in early fall of 2013, the words just seemed to pour right out of me. As more time passes, though, I struggle to capture and share exactly what I'm going through. BUT, I should try.

So, how am I doing?

Well, I'll start by answering that in broader terms. That's something I've learned I need to do, as much for my own wellbeing as to not totally disappoint whoever's asking. So much is good. Especially when I step outside the tiny bubble that is my life, and consider the magnitude of suffering in the world around it, my pain - which has been especially high these last few months - starts to feel downright trivial.

Except that...it's not trivial. It's fucking overwhelming to wake up in pain every single morning and fall asleep in pain every single night and have a whole day in between those two points in time that are filled with pain but also need to be filled with life. It's downright terrifying - panic-inducing at times - to not know how much longer my pain will last. So when someone asks me how I feel, my answer comes from my attempt to balance those two perspectives. No one likes a Debbie Downer (cue the music), but you can only hear bullshit answers come out of your mouth so many times, you know? So my response scale ranges from "GREAT, HOW ARE YOU?!" to "I'm actually having a really tough day/week/month, thanks for asking" and varying levels of honesty in between.

Quick side story: I walk my dog Charlie at a park every morning (and evening) so see a lot of the same people out for their daily strolls. Though most of these acquaintances would otherwise have no way of knowing about my whole headache ordeal, that stylish neck brace I sported for a few months post-neurosurgery invited some obvious conversation, so every now and again someone will ask how I'm doing. On one recent early morning, a friendly fellow walker did just that. And his how's-your-head-doin' was followed up with "Well, what do they doctors say? Is there ANY hope?"

I don't even remember how I responded, just that I could feel the the all-too-familiar lump in my throat and tears forming behind my glassy eyes. Damn it. I've been here too many times, so by this point, when my eyes start burning, I know exactly how many seconds I have to wrap up a conversation. Hah!

I'm not relaying this fun little story to you for sympathy sake, because it wasn't this poor guy's fault for my overly emotional reaction. I just think it proves how difficult it can be for others (even the most well-intentioned) to truly understand what it's like living with debilitating pain twenty four hours a day, seven days a week. What it's like to have pain management as a full-time job instead of a purposeful, fulfilling career; what it's like to have to lay down in bed every afternoon with an ice pack on your head and take a two hour nap if you want to have any chance of making it through the rest of the day; what it's like to feel the anticipatory excitement of marrying your best friend while stressing out about how you'll make it through your wedding day in this much pain (but never mind that single day in September...how about every day after that for the rest of your life?); what it's like to wonder how you'll be able to start a family together if something doesn't change.

Part of understanding is having the empathy to imagine as best you can what it's like to be on the receiving end of the specific words you choose to speak. "Is there hope?" Because shit, if there isn't hope, what am I even doing?

On a related note, I found this list pretty darn spot on: Helpful things to say to someone in chronic pain.

Shoot, I'm totally bumming you out. Well, I hope not too much, because I haven't given up or anything (far from it). Just trying to give it to you straight.

Treatment updates: 

I've (we've) been busy as always since November, exploring new treatments and revisiting some already tried. Clearly nothing has been a magical solution, but I think (hope) it's still worth explaining everything I've done. Maybe I try something and it doesn't help me. But I know there is a chance it could help someone else. Anyone who suffers from chronic headaches/migraines (or any type of chronic pain) can appreciate that there is no magic bullet; no single solution or cure. But that doesn't mean there isn't a pathway to get better; just that everyone's pathway is paved differently. When I start feeling better (Craig has conditioned me to use when and not if), I may be able to identify turning points - maybe even game changers (if I'm lucky) in my treatments - but realistically, will I be able to look back and truly quantify the impact of each adjustment, medication, modality, procedure, injection, therapy, and approach that I've taken? Likely not. But choosing to believe that I can and will break my headache means that each step is leading to the next. The solution is just what happens when they accumulate.

In somewhat chronological (but also overlapping) order, here's a look at what I've been up to:

TMS
I discussed this in my last post. My neurologist (Dr. Dodick at Mayo Clinic) had recommended that I use my handheld TMS (transcranial magnetic stimulation) device 8 times per day for 3 months (based on outcomes from clinical trials). I stuck with it for just over 4 months (to be safe) but unfortunately, didn't feel any relief so eventually stopped.

Total-body mobility work
Back in December, I started feeling like I really needed to do something to improve my thoracic spine and hip mobility. It just seemed like my head pain was making everything so stiff, and probably vice versa. And I knew that if I had any chance of breaking the vicious pain-spasm-pain cycle, it was time to get serious about a global approach to my mobility. Manual bodywork is great, but I needed to change the way I moved. And more importantly, prioritize the work that's required to make it happen.

After a little research, Craig and I started this Elements program through GMB Fitness, which is a 7-week online training program that uses locomotive exercises and targeted mobility work to help build strength, flexibility, and motor control. I'd highly recommend this program (or something similar) to anyone who is serious about getting their body moving and feeling better. Whether you're an elite athlete or total beginner, you'll absolutely benefit from it.

After finishing Elements, I wanted to find some similar in-person training. I hit the jackpot when I stumbled upon a local studio called Premier Fitness Systems, which offers a class called Movement Project (MP). MP is basically a combination of natural movement/animal flow type exercise, mobility and agility work, gymnastics, and strength (think a lot of bodyweight work, rings, kettlebells, sandbags, etc). I try to make it to at least 3 classes per week, and then lift/condition on my own another 3 times per week. Though my training schedule is apt to change depending on the kind of day/week I'm having, I ALWAYS feel better (mentally) when I get it in. It's my escape/distraction from pain; a reminder that there is still a part of me that can work hard and reap the benefits. That feeling is the emotional fuel I run on to keep chasing my pain. I know that's maybe hard for other people to fully understand. I get that.

More PT 
I spent a few months working with another physical therapist at EXOS (where Craig works). The goal - aside from just getting another set of ears, eyes, and hands on me (because every therapist has a different skill set and you just never know what you might have missed) - was to try to free up my T-spine and just bring down some of the spasm in my neck. We also worked a bit on my hip pain, which I know is coming from my spine, which is all part of what's going on up above. I can't write more about that though because it's overwhelming me. Hah.

Through his referral, I also saw another local PT (Tim Fearon) for a few sessions too.

Gliacin
After going down a rabbit hole of headache research one day, I came across a natural neuron support supplement called Gliacin, which contains a blend of phytochemicals (plant derivatives that have known physiologic effects) derived from Boswellia serrata . I've experimented with many, many, many supplements for my head over the last six years (now I just take a daily multi, fish oil, vitamin D, and probiotic) but was still intrigued by this one because of the data behind it. It boasts a 78% responder rate in clinical trials for a range of headache conditions, including migraines, hemicrania continua, paroxysmal hemicrania, and cluster headaches.

I took Gliacin for a few months at max dose (3 capsules, 3 times/day) but no dice. (If you want to try it, they sell a sample pack but I'd recommend just getting the full bottle since you'll need more than what's in the sample before you know if it's going to help.)

Neurofeedback
Over the winter, Craig met a neuroscientist through work who has developed a neurofeedback app called Opti Brain. Honestly, I have a hard time understanding exactly how neurofeedback works so I'm going to rely on my trusty friend, the copy and paste (compliments of The Hull Institute).

Our brains, the controllers of our bodies, are intricate systems of chemical and electrical activities with about 100 billion neurons. While we know a lot about how the brain works, there is still a lot to learn. What we do know is that the brain is designed to adapt to changes in the body and our environment and function well at all times. However, for a variety of reasons- genetics and environment- the brain gets "out of whack", so to speak, and does not function as well as it is able. The brain then becomes "dys-regulated". Simply put, a dys-regulated brain tends to be over-stimulated when it is supposed to be calm and under-stimulated when it is supposed to be attentive. Sometimes, the brain self-corrects. When it doesn't, this dys-regulation becomes “the new normal”.  So it makes sense that we should be able to re-train the brain to function optimally, the way it was designed.   In neurofeedback training, we work in conjunction with other treatments. When your brain is better regulated, it allows you to change behaviors and thoughts.

Though I've tried something sort of similar before (Brain State Brainwave Optimization), we figured I obviously had nothing to lose by giving this a shot. Worst case scenario, it doesn't do anything. Best case, it helps to calm down some of the pain signals in my brain.

Opti Train is a feedback program that trains patterns in the brain that lead to optimal performance (they work mostly with athletes). It works like this: you put on a MUSE brain sensing headband (the sensors just sit behind your ears) and then you have this app on your phone that effectively "trains" your brain using audio and/or visual feedback. Your brain patterns control the volume of the music or make the videos play, which is kind of trippy because you're not consciously doing it. So basically, for about twenty minutes per day, I'd sit on the couch with this thing on my head and stare at my phone while listening to one song (luckily Wilco's One Sunday Morning is like three hours long) and staring at a video of wildflowers blowing in the wind. My brain would control the volume of the song and the speed at which the flowers would come in and out of focus. (Trippy...I told you.) You can check out these video demos if you're interested in learning more. 

We were tracking my results (which then get mapped on the sister app, Opti Brain) and Dr. Crews was weighing in to see if there were any patterns in my pain levels and brain activity (see sample map below from Day 4 of recording). I did it for a couple of weeks. It felt relaxing at times, but I eventually stopped when I really didn't feel like it was doing anything to my pain levels. 

Infrared Sauna 
Craig and I had an infrared sauna installed in the house a few months back. Unlike a traditional steam sauna (like the kind you'd find at a health club), infrared saunas use the wavelength of the visible and non-visible light spectrum of sunlight that heats the body normally. The heat from these types of saunas effectively penetrates tissue, joints, and muscles and can be a helpful modality for pain management and improved recovery (among other things).

If you want to check out the relevant research a little more, start here: New hope for chronic pain sufferers infrared sauna therapy shows impressive pain reducing results 

I try to get in the sauna every day for at least 30 minutes but usually a full hour (I probably average about 5 times per week).

Consistent Soft Tissue Work
I've had so much soft tissue work over the years (pre and post-surgery), including massage, dry needling, Traditional Chinese Medicine acupuncture, scraping, cupping, visceral mobilization etc. etc. but it's been a while since I've had it done on a super consistent basis. So for about a month now, I've had several sessions per week with one of the soft tissue specialists at EXOS (from Movement Restoration). From my feet to my head, the goal has been to just restore tissue to it's optimal state in hopes that everything else has a better chance of working the way it's supposed to.

Gravitational Pattern Alignment 
Not too long ago, in a sort of random series of events, I ended up seeing a new chiropractor, Dr. Vetanze, who practices something called Gravitational Pattern Alignment (GPA). The goal of GPA is to correct the weight bearing torso/spine to be right/left equally balanced in the gravitational field in the upright position. I wasn't really seeking this treatment out, but a fellow upper-cervical-spine injury-related-headache-sufferer that I met through my blog (who lives in NY) had traveled out to Colorado to see him, and recommended that I pay him a visit. I got in touch with him the next day to find out when we could schedule a trip to Denver, only to learn that he has a second home in Scottsdale just 10 minutes from our house and was going to be there three days later. Hey thanks, universe. I saw him for a few days in a row while he was in town and then a few weeks later when he returned.

While I can't say that the treatment really helped my headache, it did feel good for him to confirm the "stuck" feeling I'm experiencing in my upper c-spine (which feels more severe as my pain increases). I felt a definite release of pressure when he adjusted my occiput, though any sense of relief was relatively short lived.

Upper Cervical and TMJ Physical Therapy
After seeing Dr. Vetanze, I knew I needed to keep pursuing (I mean, I guess I haven't really stopped?)  the biomechanical problem in my cervical spine. Aside from my C1 and C2 no longer being severely unstable (because of the fusion), I don't know what the problem is there, but I know it's driving my pain. I just know it is. It doesn't mean that other treatments and modalities aren't worth pursuing, but I just can't give up on this root problem.

So I dove into this beach read: Temporomandibular Disorders, Head and Orofacial Pain: Cervical Spine Considerations, which led me to learning about the author, which led me to finding the only certified Cervical and Temporomandibular Therapist in Arizona. I saw Andy Moriarty for an evaluation last week. After examining me and getting the scoop on all I've been through, he felt like a lot of my pain and stiffness is coming from above and below my fusion (which he agreed was an absolute necessity to have gone through with). Because my case is kind of the polar opposite of straight forward, it's hard to know just yet what the treatment game plan will be. We'll have to kind of take it one session at a time and see how I respond to each visit. I have several more appointments with him this week. He seems optimistic, so I'm taking his lead.

This isn't the first PT I've seen who specializes in this TMJ/upper cervical dysfunction. Two summers ago, we were traveling to Austin to see Mark Strickland and the dentist who works with (Andy knew exactly who Mark was too) but my anatomy is so different post-neurosurgery so that's why we're still hopeful this could help.

CBD
Over the last few years, I've tried all different kinds of medical marijuana to help with my pain (which I've written about before), but when I saw Dr. Vetanze, he recommended a CBD product that he's had a lot of success with and recommended I try (to help relax my muscles while I sleep, if nothing else). I tried a few different doses of this oil (which is totally legal and can be ordered online from any state without a medical marijuana license, FYI) but didn't really feel anything (other than tired). If you have trouble sleeping though, from pain or otherwise, I'd definitely give it a shot.

I also used this topical cream, which is basically like an icy-hot type product with CBD in it. Tip: Wash hands well after and avoid learning the importance of that the hard way.

Botox
In early spring, I had a neurology appointment with Dr. Dodick's PA, Kathryn Barr. This was our first time meeting with her, and she was amazing. She sat with Craig and I for 2.5 hours and went through my entire treatment history to see if there was anything at all that had been overlooked or was worth revisiting.

The first order of business was to order an MRA and MRV of my head (like an MRI to look specifically at blood flow and images of normal and diseased blood vessels). She seemed surprised I had never had them done before. I went in to the hospital a few Sundays ago to get the tests done, but, fun fact: apparently my increased pain has made me incredibly claustrophobic (despite having megadosed on CBD oil beforehand in an effort to mellow me out) and have panic attacks when this little thing goes over my face before going into the machine. So my 90 minute test lasted about 15 seconds and now I have to go back and get it done under sedation. Hah.

*side note: My friend was surprised that Craig stood by to document my anxiety when I showed her this photo. So I'll clarify here - this is a stock image I found of what an MRA/MRV setup looks like. 

Kathryn also wanted to revisit Botox, which I had initially tried four years ago with Dr. Dodick. She thought it was worth injecting a few additional sites that have been known to help with headaches, like my masseter (i.e. cheek) muscles, which I didn't have injected before. So last week I went in for my first round, which will be repeated in another three months, and then another three months after that. Here's a breakdown of the injections:

200 units from lot C4375C3, expiration date 10/2019, were injected in the following pattern:

5 units in the procerus.

5 units in 2 injection sites in the corrugators

20 units in 4 injection sites across the frontalis.

20 units in 4 injection sites in the right temporalis.

20 units in 4 injection sites in the left temporalis.

10 units in 2 injection sites in bilateral parietal region.

20 units in 2 injection sites in bilateral masseter muscles.

15 units in 3 injection site to the right occipitalis.

20 units in 4 injection sites in the left occipitalis.

15 units in 3 injection sites left suboccipital/lower trapezius,

follow the pain

20 units in a total of 4 injection sites in the cervical paraspinal muscles

30 units divided evenly across a total of 6 injection sites in trapezius muscles

She also wants to try an auriculotemporal nerve block, which can sometimes help pain in the temporal region. That procedure's not scheduled yet though.

So friends, there you have it. A full time job, didn't I tell you? (And ready for my career change any day.)

But I'll sign off on a happier note with a photo that I captures all of the love overpowering the pain. Every day... no matter how much it hurts.

This guy is my whole world. Each night, without fail, when we get into bed and before we fall asleep, he asks me: Can I get you anything? I already have my glass of water, and my kindle, and my ice pack, so it's really more symbolic than anything. I know he would do anything.