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Monday, December 22, 2014

Neurosurgeon, Cryosauna, Magnesium IV Therapy

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!

Monday, December 15, 2014


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.

Saturday, November 22, 2014

AO treatment update

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...

Monday, October 27, 2014

Ketamine recap + next steps

I'm back! Apparently I needed to take a little break from the recent stream of updates. Truth be told, I've been so sick of talking, reading, writing, thinking about all things headache (nevermind FEELING) that writing a blog post about it just hasn't been able to maintain its position at the top of my to-do list. Maybe that carries more weight if I tell you what is on my daily to-do list: take Charlie to the park, relax, maybe work out, have lunch, relax, take Charlie for another walk, make dinner, relax. See what I mean?

Selfishly, though, I always feel better after sorting through my thoughts and breaking down the details of my treatments. I think it helps me to move forward with a clearer mind.

So here we go...

I started the Ketamine infusion at Freedom Pain Hospital 2 weeks ago today. In short, it f-ing blew. But I'll include the longer version of that too.

The initial plan was to start with 3 days of treatment, provided I tolerated the first and second days. When I showed up on Monday morning, I wasn't totally sure what to expect. I knew the infusion itself would last a few hours and I'd be administered a cocktail of medication to help offset some of the less enjoyable effects of Ketamine and make me more comfortable (i.e. sleepy).

It didn't take me long to decide that I really hated the feeling of being on Ketamine, but I was (and still am) willing to endure any amount of temporary discomfort if it means long-term relief from my head pain. I felt nauseous and dizzy. If I kept my eyes open, the clock hanging on the wall multiplied into a wall of clocks and the blinds covering the windows across one wall of the hospital room were melting into each other. When I closed my eyes to get away from that, it was more dizziness and bright colors. When I did manage to drift in and out of sleep, my dreams were...well, probably the kind you'd expect to have on while on a psychedelic drug.

They explained to me that patients can experience different acute responses to ketamine. For some, it's a more euphoric, relaxed state...for others, it's a more agitated, anxious reaction. I definitely fell into the second category.

Breakdown of Monday's infusion:
-0.9% NaCl (Normal Saline IV fluids) approx. 725 ml
-Ketamine 63 mg IV
-Midazolam (Versed) 3 mg IV (to help me sleep)
-Ondansetron (Zofran) 8 mg IV (anti-nausea)
-Promethazine (Phenergan) 12.5 mg IV (anti-nausea)

When it time for Craig and I to leave on Monday afternoon, I was still feeling pretty out of it. After what can only be compared to a super drunk car ride home, I passed out on the couch until 6 or so. As far as my head pain, I noted that it felt a tiny bit better (maybe half a number?)...but honestly, it was difficult to even gauge simply because of how awful I felt in general from the infusion. I also hadn't eaten since the night before but the Ketamine had wiped out my appetite, which I'm sure wasn't helping my body to recover.

Monday night, Craig decided it would be a good idea to fly my mom out the next day from Boston, since he had to go out of town later in the week and it was pretty clear that this was really wiping me out.

On Tuesday, I went back in for day #2, feeling optimistic that the Ketamine could still work its magic. Even though they upped the dose of Ketamine, Tuesday was a much better day for me, simply because I slept through most of it. I certainly didn't feel good when the infusion was over, but totally different than the first day. As far as my head was concerned, I wasn't feeling any worse and Dr. Strand had explained that even if I were to experience relief, it may not be immediate.

Breakdown of Tuesday's infusion:
-0.9% NaCl (Normal Saline IV fluids) approx. 400 ml
-Ketamine 90 mg IV (increased dose)
-Midazolam (Versed) 3 mg IV
-Ondansetron (Zofran) 8 mg IV
-Metoclopramide (Reglan) 10 mg IV (anti-nausea)

On Wednesday morning, they decided to up my Ketamine dosage even more and increase the infusion from 3 hours to 4 hours, since I had responded pretty well on Tuesday. Like I mentioned in my last post, I don't exactly fit the mold of a migraine or CRPS patients (prime candidates for this therapy) so we knew my dosing protocol would be a bit of a guessing game.

And as it turns out, we were probably a bit aggressive with the dosage on Wednesday because it was the worst day for me. Not only had the previous day's drowsiness turned to alertness, but I was even more nauseous and every minute that passed literally felt like at least 1.5 hours. I think I asked my mom what time it was (clock was still dancing all over the wall) 5 times in 15 minutes. I remember thinking to myself...how do people do this for pleasure?

Breakdown of Wednesday's infusion:
-0.9% NaCl (Normal Saline IV fluids) approx. 600 ml
-Ketamine 140 mg IV (increased dose, 1 hour longer infusion)
-Midazolam (Versed) 4 mg IV
-Ondansetron (Zofran) 8 mg IV
-Metoclopramide (Reglan) 20 mg IV

Then late Wednesday night, I developed the worst headache I've ever had in my life. Not just awful pain, but scary pain. It felt like there was a drill going through my temples. I just laid there in silence because I was in too much pain to cry. Craig helped me breathe my way to sleep and when I woke up on Thursday morning, I was adamant that the Ketamine trial was over. We went back to the hospital that morning to chat with the docs, who were totally supportive and understanding of my decision to stop. They agreed that we'd ideally liked to have seen some substantial progress with pain relief by day 4 anyway.

I knew all along that this was all a big experiment and think I did a pretty good job of staying hopeful while tempering my expectations. Despite my cautious optimism, though, I'm always secretly praying that whatever new thing I'm trying, practitioner I'm seeing, appointment I'm headed to is THE game changer. And when it's not the game changer, even though I can still say, "well, at least we checked that off" (and mean it!), it's hard not to feel defeated.

Luckily, my mom was there through the weekend (armed with some HomeGoods retail therapy) to help me take my mind off that.

It took me about a week to get to feeling back to normal (i.e. having a huge appetite and energy to get in some kind of physical activity, even if with my baseline headache). Since then, I've gone back to experimenting with vaporizing medical marijuana. So far, I've found one strain that seems to (at least sometimes) take the edge off my pain. It makes me incredibly sleepy so I typically use it at night before bed and am able to start the next day with a bit of relief. Last night, my marijuana sous chef (i.e. best boyfriend in the world) infused some coconut oil with this new strain so I'm going to whip up another batch of my extra special brownies today in hopes of recreating that lowest-pain-in-two-years Sunday that I had a month ago.

Last week, I also started seeing a new PT who was referred to me by the PT who I started PRI rehab with last year before going to the Hruska Clinic in Nebraska. It's been a few months since putting my PRI glasses and mouthpiece in so I'm giving it another go.

And last update...

A few weeks ago, Craig came across this article about former NFL player Jim McMahon. If you're not familiar with his story, Jim had spent the last few years suffering increasingly debilitating headaches and neurological symptoms before a life-changing experience with a cranial-cervical specialist. By using an upright MRI (as opposed to the traditional, recumbent position), they found that a misalignment of the top two vertebrae was causing a blockage of his cerebral spinal fluid (a condition coined "cranial cervical syndrome"). I'd check the article out, but long story short, he underwent a noninvasive procedure to to re-align the C-1 and C-2 vertebrae (the Image Guided Atlas Treatment) and...got his life back.

Months ago, I underwent some ongoing treatment was a NUCA chiropractor (upper cervical) without relief...but we're thinking that it could be worth seeing someone who specializes in this Atlas-Orthogonal Technique. There are a few docs in Arizona who do, so we made an appointment with Dr. Trombetta for this afternoon!

Sunday, October 12, 2014

A few days on opioids and gearing up for Ketamine day #1

Well, it's been a rough few days for days, and really weeks, for me. Up until mid-week, I had continued experimenting with different dosages and strains of my medical marijuana but still hadn't been able to recreate my magical Sunday (two weeks ago now).

Wednesday evening, Craig and I met with Dr. Dodick at Mayo to discuss his opinion on the ketamine infusion and see if there is anything else he thinks I should be trying. We both really love Dr. Dodick and appreciate not only his perspective and expertise, but his empathetic and respectful way of engaging in conversation with us. He gets it. So even though he was honest in sharing his general apprehension towards ketamine therapy based on his own experience (which included risk of toxicity and questionable efficacy in treating pain, specifically headaches), he agreed that for me...anything is worth a shot.

I've explained this many times before, but Dr. Dodick is confident that the reason for my initial pain (whatever it was..inflammation, ligament instability, etc), is no longer causing my headache. He believes (and I agree with him) that my headache has become centralized, meaning that it's likely no longer a matter of peripheral input. Chronic pain can change your brain chemistry and even the wiring of your central nervous system. It also creates muscular tension (for me, in my neck, traps, upper back), that can then feed back into the cycle of pain. The musculoskeletal dysfunction then can become a secondary contributor to pain, but not necessarily respond to soft-tissue treatment simply because it's actually more of a symptom of the pain than an underlying cause. That's why even though I'll continue exploring all approaches to treatment, the focus of reducing and eliminating my pain has shifted somewhat.

Wrapping my head around the mechanism of central pain hasn't been easy. When you sustain an injury that causes pain, you want everything about it to be tangible...the diagnosis, the pathology of pain, the prognosis of treatment and timeline to recovery. But there's really nothing about this that is straightforward...which can make the process of seeking treatment feel like a series of fingers-crossed shots in the dark....each failed attempt taking a serious toll on my dwindling hope. Lucky for me, Craig still tells me (on an almost daily basis) that if I can't find it in myself to believe that my headache will someday (hopefully some day soon) be gone and my life will be whatever I want it to be, I just need to believe that he believes. And somehow, that is easier for me to do.

Back to the appointment. After rehashing the list of medications I've been on to date, we realized that I've never actually been prescribed a pain medication. The list of drugs I have been on, though targeted at my pain, has included anti-seizure meds, anti-depressants, anti-inflammatories, etc., but never opioids (i.e. narcotics). Opioids are used to treat pain by binding to opioid receptors in the brain, spinal cord, and other parts of the body and then reduce the sending of pain messages to the brain.

Dr. Dodick proposed a trial of an opioid, Hydromorphone (i.e. Palladone or Dilaudid), for just a few days before deciding whether to move forward with the ketamine. The plan was to start a low dose of Hydromorphone Thursday morning, take it every 6 hours, up the dose Friday morning and then by Friday afternoon, IF i was feeling any better, I'd continue taking it for a few more weeks and stick the Ketamine plan on the back burner. If my pain wasn't down, I'd stop taking it and start the Ketamine this Monday per our original plan.

To be clear...I hate the idea of being on medication of any kind, as many people do. The only thing I hate more, though, is having a headache every waking second of my life. So I was on board and started with Hydromorphone Thursday morning, prepared for the expected drowsiness but going into it as optimistically as I could. Craig knows how hard it is mentally for me to pop pills, so to help get my mind right, he's constantly reminding me of how strong and resilient my body is...how well I nourish it with the most nutrient-dense foods possible and how well it will respond and bounce back from pouring any amount of pharmaceuticals into it.

Unfortunately, though, the Hydromorphone provided no pain relief and I ended up feeling like absolute shit on Thursday and Friday, Saturday, and still a bit today as it works its way out of my system. Groggy, dizzy, nauseous, the whole sha-bang. So, the plan now is to start the Ketamine infusion at Freedom Pain Hospital tomorrow morning. I'm scheduled for 5 days of treatment but we should know after tomorrow's session whether there's value in continuing the rest of the week. I'll try updating tomorrow afternoon depending on how I'm feeling.

Saturday, October 4, 2014

"He who has hope has everything."

I've got a few updates to relay this weekend and hopefully will have even more in the next few days and weeks.

As explained in my last post, I underwent some occipital nerve blocks (field block) last Friday at Freedom Pain Hospital. I was instructed to monitor my pain over the next few hours, like I've done with all previous nerve blocks. Unfortunately, I didn't experience any changes in my pain level...although my head DID go numb (which hasn't been the case with previous occipital nerve blocks). So the positive is that now I can at least cross the occipital nerve off the list of potential pain sources.

Now for some good stuff. Get ready!

Last week, I met somebody rehabbing at EXOS and we got to talking about some of the overlap in our symptoms and treatment paths. Ryan has been on a truly incredible journey that started 8 years ago with 5 brain surgeries (including a craniotomy) and has included a host of additional health issues over the course of time (including migraines). He shared with me that after his last brain surgery, doctors told him that his life would be very limited. Through what I only imagine to be the most grueling and character-defining process, he defied the prognosis his doctors gave him and set out to regain his life, which included learning to walk and talk again. Quite honestly, hearing his story makes my the journey I've been on seem like an f-ing walk in the park. But in the few conservations we've had, I've felt so inspired by his mindset, which embodies hope, perseverance, and a refusal to quit.

After chatting about my (unsuccessful) experience a few months with medical marijuana (sublingual CBD), he suggested that I give it another shot but this time try a strain containing THC. I have my medical marijuana license, but really had no idea how to go about figuring out what, how much, and what method to try. Thankfully, he offered to help me navigate the process. Last Saturday, Craig and I were sort of "rained in" (sorry, it's an Arizona thing). My plan was to get a vaporizer but I hadn't been out to get one yet, so we decided to take on a fun little rainy day project of making me some special brownies. (To our credit, it's a nice indoor activity.) After a nerdy amount of research, we had successfully created our pot-infused coconut oil and I whipped up these bad boys. Special or not, they're delicious and you should make them. (note: naturally sweetened with dates but I omitted the vanilla stevia, and replaced with pure vanilla extract and a little coconut sugar).

Trying to err on the side of caution and monitor my response, I ate just a few little pieces Saturday evening. I felt tired, but no changes in my headache. Sunday morning and mid-day, I ate a few more. Feeling sleepy again, I laid down to take a 20 minute nap. When I woke up, I definitely felt different. Craig and I left for a mountain bike ride and I knew from the second I got on my bike that something amazing was happening. I took off the on the trail and for the first time in a long, long, LONG time didn't feel totally wrapped up in my head pain. It was still there, but the pain low enough that it felt like background noise. After the first segment of our ride, I hoped off my bike. When Craig caught up to me, I was burying my face in my hands and to my own surprise, was crying....out of HAPPINESS. I can't describe how incredible it felt...for both of us! The last day that my pain was that low was October of 2012, for one day after a treatment I had with Anna. Two years ago!

I knew realistically the relief was temporary, but in the hours that followed, I was 100% okay with that. Mentally, I've struggled for a long time with believing that my body was capable of not having a headache, and this episode (which lasted into Monday morning before creeping back to normal levels mid day) was the glimmer of hope that I needed. It solidified the notion that less pain was possible.

Despite eating a fair number of brownies the next few days and subbing my regular coconut oil in my morning smoothies with my new special coconut oil, I wasn't able to recreate the effect. That wasn't too surprising though, because I knew that ingesting edibles would be much harder to titrate and regulate dosage. Later in the week though, I purchased a few more types of marijuana and started using a vaporizer pen. So far, it's definitely making some impact (taking the "edge" off my pain, if that makes sense), which is awesome, but I need to keep experimenting with different combinations and amounts to figure out what will work best. To anyone reading this, it might be difficult to appreciate just how significant this is for me...but as a reminder, no medication, no invasive procedure, no therapy that I've tried in the last couple of years has provided ANY (ANY!) relief.

This past week, I also had my cardiology and pain psych evals to clear me for the ketamine infusion therapy, which I was supposed to start this coming Monday, but Dr. Dodick at Mayo wants me to wait until after my appointment with him this coming Wednesday so we can chat more about it. Assuming he gives me the go-ahead, I'll now be starting the ketamine a week from Monday. I'm scheduled for all 5 days but we'll re-evaluate based on my response at the start of treatment.

Finally, Craig and I decided that since I haven't had much soft-tissue work done in a while, specifically on my t-spine, it might be a helpful complement to some of the other "central pain" therapies I'm trying. I've talked before about the pain-spasm-pain cycle, and feel pretty confident that a lot of the musculoskeletal dysfunction I have going on in my neck and back is a result of being in pain, but I think targeting all parts of the cycle can still be helpful.

I saw Jeremy (soft-tissue specialist at EXOS) three days this past week. I'll leave you with this and apologize in advance if you do choose to look. It ain't pretty.

Thursday, September 25, 2014

C1 nerve root block update and first visit to Freedom Pain Hospital

Well, 4 days post-procedure and no changes to report...other than an exceptionally painful last couple of days, which been pretty disheartening to say the least. I haven't yet decided whether to try the C1 nerve root block on the right side yet. We're still waiting to hear back from my neurologist, Dr. Dodick to get his opinion.

Meanwhile, we've been pursuing some other steps, as usual. Last week, we had a conversation with Craig's colleague, Dr. Sugarman (EXOS' director of applied neuroscience) about the therapeutic use of ketamine for chronic pain. You've probably heard of ketamine as an anesthetic, and depending how well versed you are in street drugs (a weak point for me, admittedly), you may be familiar with its reputation as a party drug with dissociative properties that provide hallucinogenic effects.

By blocking NMDA receptors for glutamate (different mechanisms than most anti-depressants), ketamine provides some promising therapeutic benefits, particularly in the treatment of depression and certain pain disorders like complex regional pain syndrome, which typically includes some element of central pain. I've explained this before but central pain is a neurological conditional, caused by damage or malfunction of the central nervous system, which over time causes a sensitization of the pain system. Basically what this means is that you could sustain an injury (in my case, bike accident) and have a very tangible "cause of pain" (let's say in my case it was a ligament instability, nerve irritation, etc.) and over time, the body adapts becomes sensitized to the pain. At some point, the mechanism of pain could be totally gone, or perhaps partially gone (i.e. ligaments heal, inflammation goes away), but the pain switch is still "turned on", if that makes sense.

Because it's been suspected for quite a while (particularly by Dr. Dodick) that central pain is playing some role in my headache, it seems logical that we'd have nothing to lose by treating central pain in any way possible. I have tried some things (Botox, medication, etc.) without result, but that doesn't mean that Ketamine doesn't deserve a chance to work its magic.

So in our research over the last week, we happened to stumble upon an integrative clinic here in Scottsdale, Freedom Pain Hospital, that performs Ketamine Infusion Therapy. This afternoon Craig and I went to meet with the medical director, Dr. Natalie Strand. The appointment went really well and we decided that a course of infusions was definitely worth a shot. I have to see a cardiologist and psychologist next week, per their clearance protocol, to get medical approval and should start treatment in just a few weeks. Dr. Strand explained that it's going to be a bit of a guessing game, simply because they don't really treat patients with exactly my condition. She suspects I'll need a stronger dose than migraine patients (which is generally one day) but less than complex regional pain patients (which is generally 10 days of 4 hour treatments). I think I'll be starting with 3-5 days, but may modify depending upon my response.

In today's visit, we also discussed the experiences I've had with occipital blocks. I've had these injections with at least 3 other neurologists over the past 1.5 years without relief, but we collectively thought it was odd that I've never felt numbing throughout my head after the injections (which I should feel). Craig and I always suspected that I was just resistant to lidocaine, but Dr. Strand said that there is a chance the nerve itself was never directly targeted. She suggested we try another round, but this time she'll inject over a "field" of space in the back of my head, which guarantees that the nerve will be covered. If I feel any kind of change with that procedure, we'll go from there. Fortunately, we were able to schedule it for tomorrow morning. If I have a positive response to the occipital blocks, we may try doing them again after I start the ketamine infusions. That way, we're targeting a peripheral pain source with the injections and a central pain source with the ketamine at the same time. More than likely, there's a peripheral and centralized pain contribution occurring, so this should provide an even stronger chance of attacking it.

More updates to come after tomorrow's visit.

Annnnd, breathe.

Monday, September 22, 2014

C1 Nerve Root Block

Long day...but my C1 nerve root block (left side) is complete! So far, I'm not feeling any changes, but Dr. Chong has warned me that it could take up to a few days to kick in...so I'm trying to stay positive. Regardless of the outcome, the procedure will still serve as a helpful piece of information in trying to uncover the source of my headache moving forward. Depending how I feel in the next few days, we may also decide to proceed with the identical procedure on my right side next week.

Though I've had several nerve blocks/ablations done in the last 1.5 years, they've all been pretty low-risk outpatient procedures at various pain clinics. Today's procedure at Mayo Clinic felt a little different from the start, simply due to the greater risk of working at C1.

Allow me to explain with these 3 (somewhat humorous) things I learned today...

1. A C1 nerve root block has never been performed at Mayo Clinic (AZ or Rochester).
2. When you Google "C1 nerve root block", the first hit that appears...wait for it...MY BLOG. Not a medical journal. Not a pain clinic. Not a health organization. My blog.
3. When I was sitting in my hospital bed during recovery, I overheard a few doctors/nurses who were walking by say to each other... "There's NO room between the vertebral artery and C1!"

So, as you might imagine, our excitement was rivaled by some warranted anxiety. But Craig and I both felt incredibly confident in Dr. Chong and felt 100% certain the potential benefits far outweighed potential risks.

I checked in around noon and spent the next hour or so getting prepped by the nurses and meeting with the anesthesiology team that would be in the room "just in case". Originally, Dr. Chong hadn't planned on needing them available, but after planning for the procedure and consulting with some colleagues here at Mayo Scottsdale and in Rochester, MN he decided that would be best. The target space for the needle was very small and IF it had moved into the epidural space, I would have gone numb from the upper neck down, which would have stopped my breathing. If that was the case, they would have been there to intubate me. This consideration also changed the position I was in the table. Originally he was going to have my lie in a prone position, but I ended up propped up onto my right side so that they could have got to the leeds on my back in a shorter amount of time if there was a breathing emergency.

(Paparazzi snuck in)

Before he got started, Dr. Chong had Craig come into the OR to explain his exact plan of attack, complete with several helpful anatomy diagrams and cadaver images. I wish I could include the ones he showed us, but here's some visual to show you where the needle went...

Follow the arrows I stuck in there...

To give you a better sense of where the vertebral artery is in relation to that first vertebra, check this next one out. A needle accidentally hitting that would result in stroke...eek!

The procedure itself wasn't particularly painful (I had a little bit of sedative to take the edge off) but lasted longer than the other blocks I've had to date. Since it was performed with CT guidance, Dr. Chong used a contrast dye that allowed him to see exactly where he needed to be (which felt strangely hot as it shot through my body) and then injected the lidocaine and celestone bit by bit to ensure I was tolerating it well.

I'm back home now, feeling "normal" pain-wise and pretty groggy/in need of a good night's sleep. Hopefully I started feeling some changes in the next few days.

the best medicine

Friday, September 19, 2014

C1 nerve root block on Monday!

Yesterday I had my appointment with Dr. Chong, a vascular radiologist at Mayo Clinic. My neurologist, Dr. Dodick, had referred me to him to discuss a C1 nerve root block. In short, the visit went really well and we left with a plan of action that Craig and I are both feeling good about.

As he reviewed my radiology reports and we started discussing my "story", Dr. Chong reiterated to us that he isn't a headache specialist, or a even a pain specialist for that matter. He specializes in neurointervention. Basically, he puts needles in places that are hard to get to. And he's good at it.

As I've explained before, C1 blocks aren't common and that's because it's an area of prime real estate. The needle's target is a 2-3 mm space and Dr. Chong will perform the procedure under CT guidance (whereas my previous blocks/ablations have been under fluoroscopy). I mentioned in my last post that we needed to find out how much experience Dr. Chong has had with C1 nerve root blocks. He's only done a handful (which is a handful more than every other doctor) but his experience and expertise IS in using guided procedures to treat conditions like brain aneurysms, vascular malformations of the brain, etc. The way he explained it was that his experience/skill in the "how" of what he does is actually more important than there "where".

The procedure, which I'm scheduled to have THIS MONDAY (!!!) could potentially be both diagnostic and therapeutic. It will contain a short-acting anasthetic (lidacaine) and an anti-inflammatory (celestone). We'll start with just the left side this Monday, as he didn't want to do both sides in one day in case I didn't respond well.

The potential scenarios are as follows...

1. I start feeling pain relief in the first 24-48 hours, the pain cycle is finally broken, and my headache is gone forever. This scenario would kick ass, but what's more likely is...

2. I start feeling relief in the first 24-48 hours and my relief is temporary. The next step would then be for me to see Dr. Barry Birch, a spine surgeon at Mayo who would likely perform a permanent risotomy (where the nerve is actually cut). When we asked whether they'd consider a pulsed radiofrequency ablation like I had at C2-C5, Dr. Chong explained that although they're less invasive, RFs aren't quite as precise (i.e. safe).

3. I don't feel relief. Then we'll try the right side the next week.

4. I don't feel relief from either side. Then I'll be done with Dr. Chong and will loop back with Dr. Dodick to figure out next steps. (Dr. Chong is like a contractor here...basically being hired to perform a very specific task).

Lastly, Dr. Chong was NOT concerned at the basilar invagination from my MRI. He assured us that he actually sees this quite a bit and it doesn't worry him with me, simply because I have enough fluid surrounding my spinal cord in that area that appears to be "kinked". So that's great news.

I'll plan to update after Monday's procedure... Thanks for all the positive thoughts sent my way. They're felt and appreciated : )

Friday, September 5, 2014

September update

Yikes, that month flew by. My last post was a long one, with updates on my recent Rolfing treatment and cranial osteopathic treatments (both of which failed to yield any positive changes in my pain), as well as an outline of next steps, which included...

1. Seeing Dr. Dodick (my neurologist at Mayo Clinic) for a referral to his friend at UCLA who performs the C1 nerve root block.

2. Seeing Dr. McJunkin (my pain doctor at AZ Pain Specialists) to ask questions about the dorsal root ganglion ablation that he thought was warranted after a (somewhat?) positive response to the diagnostic dorsal root ganglion block I had a few months back, and find out more information about the regenerative therapies we've talked about with him in the past (stem cell therapy, PRP, etc.)

3. Address increasing hip pain with Tony, a PT at EXOS (in the chance that there's some dysfunction up the chain that's contributing to my headache).

I wasn't supposed to see Dr. Dodick until mid September, but thankfully he was able to get me in just before we left for our east coast trip to visit my family in August. Speaking of our trip, it was great to be home...we made it to my friends Heidi and Paul's amazing wedding, were able to spend time with some extended family, and vacationed our asses off at my aunt and uncle's ski house in beautiful Maine. Though I would have happily left my headache at home in Scottsdale, to shrivel up and die like the succulent cacti on my kitchen counter, the little fucker came along anyway. And as much I always love being home, the change in my normal daily routine was a bit tough on my pain. I don't think I fully appreciated how "low key" my lifestyle is these days until I was faced with a bit more stimulation...more activity, more commotion, more traveling, more talking, more listening, more socializing. So I found myself feeling more frustrated than ever, as I so, so desperately want to be able to do all of those things...to engage fully in the world without feeling like I need to go lay in a room by myself and cover my head with an ice pack and hope I can fall asleep for a while just to get a break from the pain. Comparing how I felt during this trip to the previous summer's Maine vacation, or even December when I was home last, was also a pretty harsh reminder of how my headache has worsened in the last year.

Cue the Debbie downer music, huh? But really, I do feel optimistic that we're getting close to a solution. We have to be, right?

So, back to my appointment with Dr. Dodick. He was still happy to refer me to Dr. Charles at UCLA for the C1 nerve root block procedure, but informed us of a new doctor right here at Mayo, Dr. Chong, who also does it. (Keep in mind that because C1 is such prime real estate and the margin for error is quite small compared to other levels of the spine, there are literally just a couple of doctors in the country that do it.) Dr. Chong is a vascular radiologist. I'm scheduled to see him for a consultation on September 18th, though him and Dr. Dodick have already discussed my case and it sounds like he's on board with the procedure.

Craig and I also spoke with Dr. Dodick about some additional pain management tools. He agrees that I'm pretty medicationed-out at this point, but told us about a new study he's in charge of that will be testing the effectiveness of TMS therapy on migraine/cluster headache patients. This is what the TMS device looks like...

TMS, or Transcranial Magnetic Stimulation uses a highly focused pulsed magnetic field, similar in type and strength to those produced by an MRI machine, to stimulate cortical neurons. Historically, it's been used in the treatment of depression but looks like it could be a promising therapy for the treatment of pain too, given that certain pain conditions involve very similar brain pathways as depression (ex: centralized pain, which Dr. Dodick thinks is at least part of what's going on me with). I don't technically qualify to participate in his study since my 24/7 headache isn't diagnosed as a migraine or cluster headache, but Dr. Dodick kindly offered to lend me a device to try out when they arrive next month. Worth a shot!

On to Dr. McJunkin... We went in to see him earlier this week. First, we expressed our concern around the risks of hypersentization of the dorsal root ganglion radiofrequency ablation (DRG RFA), which were communicated to us by Dr. Paicius, the pain doctor I saw in Newport Beach for a second opinion. To recall, Dr. Paicius instead wanted me to try another course of meds (Topomax and Cymbalta)...which I did for about 6 weeks without relief. Dr. McJunkin explained to us that DRG RFA is a "cold" RFA (less chance of neuritis) and that even if hypersensitivity occurred, it typically goes away in 8 weeks.

We also wanted to understand if and when the regenerative therapies would be appropriate - basically, what's the relationship between PRP, stem cell, and prolotherapy with the C1 nerve root block? His response was that they would essentially act as super powerful anti-inflammatories and agreed that it was reasonable for us to proceed with the C1 nerve root back, provided that Dr. Chong has done a fair number of these (I asked what number he'd be comfortable with and he said a a minimum of 10).

We discussed a few other potential options, like spinal cord stimulation (where a device actually gets implanted by your hip and stimulates the spinal cord and spinal nerves by tiny electrical impulses via a small electrical wire placed behind and just outside the spinal cord in the epidural space)...definitely NOT at the top of my list or his, and a sphenopalentine ganglion block (a transnasal procedure that blocks sympathetic activity by anesthetizing the SPG).

Lastly, we wanted to get his opinion on the basilar invagination from my MRI (remember I posted an image of the little "kink" in my spinal cord?) He thought it would be smart to see a neurosurgeon to get their take so referred me to Dr. Chang at Barrows.

We wrapped up the visit with this plan of attack
1. Have my C1 consult/likely procedure with Dr. Chong
2. Schedule a C2 DRG RFA.
3. Start exploring regenerative therapies, (probably stem cell first since he it's more powerful than PRP).

And finally...my hip...

I've been working with Tony at EXOS for a few weeks and my hip is actually FEELING BETTER. He's dry needled my psoas and also helped me establish some better glute activation exercises pre-workout that have made all the difference. This shouldn't seem so miraculous, but compared to my headache, treating a problem and then experiencing relief feels like actual magic. Even if my hip improvement hasn't translated to anything upstairs, I'm confident that all of the puzzle pieces are connected somehow. In the meantime, I'll settle for feeling strong on my mountain bike :)

More updates so come!

Saturday, August 2, 2014

bodywork updates, upcoming docs, and some hip investigation

So last week, I had both my first Rolfing treatment and my first manual treatment with Dr. Chikly. Here's a recap of those...

The Rolfing wasn't totally what I expected, though not in a bad way. The goal of this form of structural integration is to open, balance, and align your body by working primarily with the fascia, or connective tissue. It has a reputation of being pretty painful, and that's because when it was first developed by Ida Rolf in the 1970s, it was characterized by the depth at which the practitioner was able to get into the body and manipulate the fascial system. So, deeper = harder = more pain. These days, we obviously know more about how fascia is richly innervated with nerves. As a result, deeper/harder/more painful can easily become counterproductive, as the body responds by tensing up and consequently not allowing the practitioner to reach deeper tissue layers. The practice of Rolfing has actually evolved to be a much gentler method, but its reputation has sort of stuck. (Not that I would have cared either way...hell, I'd probably let someone take a hammer to my body if they said they could pound out the pain.)

Based on his evaluation, I wouldn't say that Dr. Maitland had any fresh thoughts (as in, new opinions we haven't heard) but he felt confident it was worth trying a few sessions. He worked on different parts of my body, though mostly shoulders and above, and used a percussor instrument (which is basically a hand-held high level vibration tool that rapidly pulses straight down versus a traditional circular motion) to help break up myofascial adhesions. I think he was expecting me to feel some changes during the session. I didn't, and that was sort of a bummer but also not super surprising. We decided that regardless of how I felt over the next few days, we'd get at least one more session on the books.

A few days after that was my appointment with Dr. Chikly. Craig reminded me before we went to be prepared for some out-of-the-box thinking. Example: Dr. Chikly had asked me to bring the supplements I'm taking right now (currently just Vit. D, fish oil, and my raw food multi) and Craig said he might hold them up to my body to test their energy fields. And he was right...that was one of the first things he did. I like to think I'm pretty open minded, even though it sure can frustrating at times to connect the dots. But, I can't exactly afford to be close minded right now either.

The manual work that Dr. Chikly performed on me was also gentle, and felt similar to the treatments I've been having with the two other cranial osteopaths (though I'm sure he was using some different techniques). His feedback wasn't extensive, but did say that felt torsion through my spinal cord, which aligns with all of the dural tension speculation we've been receiving over the past few months. Similar to Dr. Maitland, I didn't feel any changes in pain during the session but we decided to set up at least one more visit, this coming Monday.

Since both of those treatments, my pain has remained the same, which as you can imagine, is frustrating.

As always though, Craig and I have set in motion a few next/simultaneous steps.

1. This coming Tuesday, we see Dr. Dodick, my neurologist at Mayo. I mentioned this in a previous post, but the purpose of this visit is to discuss a referral to his friend/colleague and director of the headache and migraine program at UCLA, who is pioneering a procedure directed at C1. We've only communicated with Dr. Dodick via email about this, so all we know is that it's an x-ray guided C1 block that's similar to a C2 block but targets a different nerve root that has never been approached before because they didn't believe it caused pain until now. We're looking forward to getting in there to chat more and likely plan another trip out to LA soon.

2. In early September, I am scheduled to go back to AZ Pain Specialists to see Dr. McJunkin and talk more about Stem Cell Therapy for treatment of chronic pain. I'll talk more about this as the appointment gets closer or you can watch a quick video of Dr. McJunkin talking about it here.

3. This is going to seem a bit random, but lately my left hip has really been bothering me. I had arthroscopic surgery on both hips in 2010 to repair labral tears from soccer/running and for the most part, they haven't given me problems since. My left one has always felt a bit "pinchy", but as far as my commitment to fully rehab it goes, my headache has sort of taken precedence. It's annoying, but compared to my head, I can't even call the sensation in my hip "pain".

As I've mentioned before, though, I've always had this intuitive feeling of my left hip issues being connected to my left trap (chronically tight) and left side of my neck (both of which I am CERTAIN are part of my head issue). And I've had therapists work on my hip over the last couple of years, agreeing that a relationship between the two were quite possible...we've just never seemed to crack the code or gain any traction (on one or other).

In the past month or so, my hip has been feeling worse, and there have been really bad headache days that I've noticed correlate with even worse hip days. Craig and I decided it would be a good idea to restart some PT at EXOS to focus on my hips. Our thought being that best case scenario, we affect my head or gain some insight into whatever the relationship is between the two and worse case, my hip feels better and we've created an optimized healing environment for my head.

So a few times per week for the past several weeks, I've been working with Tony (PT) and Eric (massage therapist). Although all of hip muscles have benefited from the work we've been doing, I'd been having a hard time "getting at" the place where I feel the most discomfort. Kind of in the front...but underneath...a little in the back...but deep. We eventually figured out that the likely culprit is my psoas muscle. Bear with me...there is a reason I'm explaining all of this!

The psoas, also known as a primary hip flexor and ‘’13th Organ,’’ originates at the transverse processes of last thoracic and 5 lumbar vertebrae (T12-L5), bisects through deep inside of the gut and attaches at the inner femur (thigh bone). This is a very unique muscle that both flexes and laterally rotates the hip, and is one of the major muscles responsible for walking.
The lower portion of the psoas intertwines with the fibers of the iliacus, and together they form a muscle group known as iliopsoas.

The psoas also affects the structure of our upper body. It originates at T12 which is a major attachment site for the trapezius muscle. Through this junction the psoas can send forces into the upper body and directly affects the level of shoulder flexion (reaching your arm above your head).

Did you see that?!?!?

It originates at the attachment site for the trapezius!

Like I said, I have always felt 500% confident that the chronic tension in my left trap is connected to my headache. I haven't known how, and still don't, but just understanding this anatomy feels like I'm finally putting two puzzle pieces together.

Since figuring this out, I've naturally been reading and researching it like a f-ing maniac and have learned that although chronic hip flexion (sitting, etc.) is the most common cause of psoas dysfunction, it can also of course become restricted from physical injuries, car accidents, falls, etc.

I'm assuming if you're still reading, you're at least somewhat interested in what I'm writing so I'll include this excerpt that I found online...

The EMG study was done on a 50 year-old actress who, after a neck injury that occurred 30 years ago, suffered with dizziness, vertigo and tension headaches. Manipulation of the atlanto-occipital and atlantoaxial joints gave her only short-term relief. Possibly in this case, if the blocked sacroiliac joint was the cause of the hypotonic gluteus maximus, then manipulation of the sacroiliac joint would have eliminated the hyperactivity of the cervical musculature and would have been more effective than just manipulation of the upper cervicals.
It appears that the underlying cause of headache is this case was really related to a hypotonic gluteus maximus, which can have other causes besides a sacroiliac blockage. An internally rotated hip will inhibit the gluteus maximus, as will a chronically shortened psoas muscle. The gluteus maximus will be inhibited by its antagonist, the short psoas. Attempting to strengthen the weak gluteus maximus without normalizing the tightened psoas would prove fruitless.

In ordinary walking there should be minimal activity of the upper trapezius and levator scapulae but if these muscles are hyperactive, there will be over stress to the cervical spine. Janda has stated that with over activation of the shoulder and neck muscles, due to decreased activation of the gluteus maximus during hip extension, results in abnormal anterior tilt and rotation of the lower cervical segments, mostly at C6 and partly at C5 and C7.6 With each step there is excessive rotation and tilting occurring in the cervical spine.

With a patient lying prone with feet off the edge of a table, it is possible to see the hyperactivity of the shoulder neck muscles as the patient extends the hip.

This discussion emphasizes the fact that an abnormal pattern of movement in one areas (lumbar spine, hip and pelvis) was related to over activity of muscle activity in a distant area (cervical spine). The cause could have been articular (sacroiliac blockage) or muscular (shortened psoas). Obviously, we must look at the total subluxation complex with each patient.

Bottom line: I still don't know for sure what's going on, but I know that I have a cervicogenic headache (originating from cervical spine), my psoas doesn't feel good, and that psoas dysfunction can impact the cervical spine. Craig just ordered me a book called Front to Back “The Hidden Culprit”: This new approach to iliopsoas enables you to successfully treat your back pain, neck pain and headaches, which I'm really looking forward to reading.

Tony and I just started working on my psoas last week in PT (with deep tissue, dry needling, and some different exercises) so I'm feeling good about having a new focus with that too.

As always, hoping to have more positive news to report soon!

Thursday, July 24, 2014

3 year pain reflection + 2 new docs

First thing's first, today is Craig's birthday! Of course this bring more excitement to me than him, but that's just because I welcome any chance I get to celebrate Craig. He is such an incredibly special person. That's not just because of the guidance, love, support, and inspiration he's selflessly provided through every second of my headache journey (he would correct me and say, *our headache journey), but the circumstances have certainly provided a constant reminder of just how lucky I am to have him by my side. I find it sort of funny to think about the meaning behind any future marriage vows: to take care of each other "in sickness and in health". Guess it doesn't hurt to seal the deal, but I'm pretty sure we've got that covered...am I right? So happy birthday Craig Friedman! Now come home from work please so we can crack open a bottle of Kombucha and get this party started.

So, headache update. From a pain standpoint, I don't have too much new and exciting information. It's there when I wake up, when I take Charlie to the park every morning, when I work out, when I grocery shop, when I relax on the couch, when I cook dinner, when I bring Charlie back to the park, when I hang out with Craig after work, and when I climb into bed. That 1-10 pain scale is virtually meaningless to me at this point, as I think 24/7 pain has made my perception of it so subjective. For example, if I only had a headache twice a month, let's say, I'm sure I would plan for those to be rest/unproductive days spent on the couch with an icepack. Maybe I'd be able to rate the headache as a 7/10 (10 being the worst pain I could imagine). But it gets trickier to apply that logic to a 24/7 headache. Am I at a 7/10? I have no f-ing idea, because I don't even remember what a 0 or 1 or 2 out of 10 feels like. Another reason I think the pain scale is BS for chronic pain is that it ignores a very significant dimension...that is the emotional stress, panic, and despair of feeling trapped in a state of physical agony day after day after day. So falling off my bike into a cactus or slicing my finger chopping vegetables might hurt like a b****, but the underlying certainty that the pain will go away totally mitigates the sense of suffering. Does that make sense?

That wasn't supposed to sound so helpless. I do believe my pain will go away (thanks to a certain someone who hammers that message into my head like it's nobody's business), but I'd be lying to say there wasn't some ebb and flow to my optimism. Sometimes, the struggle for me to believe there are better days ahead manifests simply as thoughts of self-doubt and frustration. I left my job almost a year ago. Will I be able to "catch up" in my career? Will I be able to make money and contribute financially? Will I regain my hunger for learning and intellectual stimulation? Why am I going back to this doctor for a seventh treatment when the previous sixth haven't helped me at all? Why does it feel like it's Groundhog day? Who the f*** has a headache for 3 years and why can't anybody figure out what's wrong me? (You know, those kind of thoughts.)

And then we can't forget about the slightly more articulated, expressive forms of that struggle (which usually feature some display of waterworks on my part)...or perhaps even a mid-mountain bike emotional breakdown, when I tell Craig that I want to just sell my bike because "it did this to me so why do I keep riding it?" It's ok, I can laugh about that now.

Bottom line, it's a daily challenge for me to stay laser focused on the outcome of of a pain-free tomorrow, but a challenge that I'm committed to overcoming. In the meantime, I avoid getting bogged down by the noise and distraction of negativity by directing my energy in the most purposeful way possible. While meditation, yoga, and other activities that require me to "be in my own head" end up digging me deeper into a hole of frustration, other forms of exercise have been providing that outlet I so desperately need. Someone asked me today, mid-workout, what I was training for. My answer: sanity :)

Before I sign off for the day to get ready for tonight's surprise party (kidding Craig, but that doesn't get old for me) I wanted to include some exciting treatment updates. I mentioned in my last post that this Friday, I have my first Rolfing session with Dr. Maitland. I'm super optimistic that this form of myofascial manipulation could really tap into the dural tension that everyone seems pretty confident is contributing to my pain.

And then this coming Sunday, I have another appointment with a new practitioner, Bruno Chikly, MD, DO, LMT, founder of the Chikly Health Institute and international seminar leader, lecturer, and writer. He specializes in osteopathic techniques and other hands-on modalities, both in Europe and the United States, including Manual Lymphatic Therapies, Osteopathy in the Cranial field, Biodynamics program in Osteopathy, CranioSacral Therapy, Visceral Manipulation, Mechanical Link, Muscle Energy, Myofascial Release, Neuromuscular Therapy, SomatoEmotional Release, Orthobionomy, Chi Nei Tsang, Zero Balancing, Reflexology, Polarity Therapy, Homeopathy and Oriental medicines. Craig and I knew he doesn't spend much time seeing patients anymore and spends a good chunk of time in Europe, but we knew he has a home-base in Scottsdale, so Craig tracked down a number a few weeks back and left a message and fortunately, he got in touch with us and is willing to see us at his home this weekend.

I'll be sure to post an update next week after these two sessions. And lastly, I thought I'd update the ole' health history list that I summarized back in October when I started writing. Much easier to carry this with me to my appointments than trying to squeeze a few extra lines in the margin. Seriously though, you're giving me 2 inches to answer that question?

Summary of specialists, diagnostics/tests, and treatment/therapies I've tried since my post-bike accident headaches started in July 2011:

-11 Chiropractors
-10 Physical Therapists
-7 Neurologists
-6 Massage therapists
-4 Dentists
-4 Pain management doctors
-3 Cranial sacral therapists
-3 Cranial osteopaths
-3 Chinese Medicine MDs
-2 Myofascial release practitioners
-2 Functional neurologists
-2 Psychologists
-2 regular MDs
-1 Orthodontist
-1 Naturopath
-1 Physiatrist
-1 Neuro-optometrist
-1 Energy healer
-1 Dietician
-1 Psychiatrist
-1 Medical intuitive
-1 Spinal surgeon
-1 myopractor
-several emergency room MDs

-GI Effects Profile
-Comprehensive blood panel
-Static spinal x-ray
-MRI (spine and brain)
-Flouroscopic motion x-ray
-Medial branch nerve block C2-C5
-Dorsal root ganglion block C1-C2

-Botox injections
-Pulsed radiofrequency nerve ablation C2-C5
-Cold laser
-Cranial analgesic electrotherapeutic device
-Brainwave Optimization brain training
-EMDR(Eye Movement Desensitization and Reprocessing)
-Visceral mobilization
-Neural therapy injections
-Occipital nerve blocks
-Trigger point injections
-DNS (Dynamic Neuromuscular Stabilization)
-Dry needling
-Pilates rehab
-Craniosacral therapy
-ART (active release technique)
-Cupping (both fire and suction)
-Emotion Code Technique
-Medical Marajuana (CBD)
-2 different mouthpieces
-Movement-based rehab
-Massage therapy
-Soft collar neck brace (24/7 for 9 weeks)
-Trigger point injections with Lidocaine and Kenalog
-Postural Restoration Institute therapy
-Glasses (PRI vision)
-NUCCA adjustments (upper cervical chiropractic)
-IV therapy (Magnesium)
-Dry needling
-ARP wave therapy
*Methylprednisone Dospak

-Natural supplements
*co Q10
*fish oil
*vitamin D
*Glutamine/Glycine/Taurine blend
*Alpha Lipoic Acid
*St Johns Wort
*Olive Leaf
*B Complex
*Bioactive Silver Hydrosol

-Dietary changes (consisting of adding wild fish/organic eggs/organic chicken back into my 100% unprocessed/organic plant-based diet)

Saturday, July 5, 2014


Because I know everyone reading this is waiting anxiously to hear and is as excited to know as the strangers next to us at the creek who witnesses our celebration (over and over again)...

Charlie is a swimmer!

And a hiker!

Seriously, though, watching her take to the water and hike off leash, being sure to never get ahead of Craig or let me fall too far behind her, was the cutest thing in the world... second only to every sleeping position that followed for the rest of our time in Sedona.

Certification or not, she is undoubtedly our therapy dog.

The morning after we arrived home, I had my second visit with Dr. Gailius (cranial osteopath at Midwestern University clinic). We started out by asking him what his thoughts on my basilar invagination that I talked about in my last post. He's certainly not closed minded to the idea that it could be playing a role, but like the others we've talked to about it, doesn't really know enough about BIs to have a strong opinion one way or the other. We'll plan to ask Dr. Cisler though too, who I see in Tucson on Monday for treatment #2.

Dr. Gailius did explain that with cervicogenic headaches caused by whiplash, he usually feels sphenobasilar strain (SBS) compression. SBS strain patterns are named for the position of the sphenoid on the occiput. But the odd part is, he felt like there's good movement at my sphenoid and occiput. He thinks that my occipital condyle (see image below) is locked into my 1st cervical vertebrae and still feels like there is significant dural strain.

In my occipital/cervical area, he felt inflammation/fluid build up on both my left and right sides. He felt some additional somatic dysfunction down my left arm (way more so than the right), which is the one I broke when I was 14 in a soccer collision and has hardware inside (2 plates, 16 screws), and similar dysfunction at my second rib (again, much worse on left side). Whether or not the hardware in my arm has somehow been playing a role in all of this nonsense is actually something we've talked about before and have worked (albeit very minimally) with one of my PTs months ago. Craig had also spent some time scraping my scar, just to see if freeing up some scar tissue could help. We're thinking that focusing on some arm-intensive rehab in the meantime, though, might be worth a shot.

Dr. Gailius also thought that the rotations at my OA joint (atlanto-occipital joint- the articulation between the atlas and the occipital bone) are related to my dural tension (there's no dural attachment at C1 which is why it isn't there).

Side note, real quick: For all of the anatomy & physiology flashcards I made in college, three years of this^ is an entirely more effective method of learning. Hah! What a price to pay, huh?

So anyway, I have my appointment with Dr. Cisler on Monday (which will be focused on the brain protocol I mentioned in my last post) and then go back to see Dr. Gailius at the end of next week.

A few other updates...

Dr. Dodick (Mayo Clinic neurologist) got back to us about the basilar invagination. To sum it up, he doesn't think the basilar invagination is relevant but does think it may be worth exploring intervention at C1. If you've been reading my blog all along, you may remember that we went through a bit of a circle of opinions in the C1 department and ended up not following through with any kind of invasive procedure due simply to the risk involved. But Dr. Dodick told us that his friend and colleague is pioneering a procedure directed at C1 which is showing significant promise, so I'll be going into Mayo to meet with him soon to discuss next steps.

After doing a little research, I've also decided to give Rolfing a try and scheduled my first session with Jeffrey Maitland, PhD (which isn't until the end of July). Rolfing is a form of bodywork that reorganizes the connective tissues (fascia) that permeate the entire body. I'll elaborate more on that as the treatment gets closer, but am happy to have it on the books.

Lastly, Craig just reached out today to a holistic doctor and founder of a bodywork called MyoReflex Therapy in a small city in southern Germany, near the border of Switzerland. His name is Dr. Kurt Mosseter and he was highly referred to us by USMNT coach Juergen Klinsmann when we met up with him back in May. Juergen didn't have enough good things to say about his experiences with him, so although no trips to Germany are in the works right now, we're hopeful that he has a chance to look over my history and give us his thoughts as to whether that might be worth talking more about.

Sunday, June 29, 2014

treatment update and basilar invagination?

First things first, it turns out I can't just add a question mark to a blog title like that without immediately thinking... "I'm Ron Burdundy?" Right?

I forgot to mention in my last post that a few weeks back, Craig and I had a phone consultation with Dr. Amen, a well-renowned MD who specializes in psychiatry and nuclear brain imaging and founder of Amen Clinics, which are scattered throughout the states. Mark Verstegen had met him through the NFLPA and had generously made the introduction so we were pretty excited to have the opportunity to chat. (I'm telling you, this is a serious team effort). Basically, Craig and I were interested in learning whether he thought there was any value in getting a functional brain scan, in order to see if I was experiencing any sort of regional blood flow restriction. After a little back and forth, he didn't seem to think it would be a warranted diagnostic. He was in full support of me seeing a cranial osteopath, though, and stressed the importance of seeing the "right" one...which is what led us to Dr. Cisler in Tucson.

Now fast forward a bit. I finished my 8th NUCCA treatments with Dr. Martin on Friday. By my last session with him, he felt that my pelvic and cervical alignment had improved but was stumped as to why my pain hasn't budged. I believe his exact words were "you're my first failure" Hah...nice, thanks! He was a quirky dude, but definitely had my best interest at heart and I appreciate his honesty. In fact, he didn't charge me for the last 3 treatments because he felt bad that he hadn't scheduled them closer together from the start.

So, what are the next steps?

Tomorrow Craig, Charlie, and I head up to Sedona for some much needed R&R. I suppose I do get plenty of it, but Craig's been out straight at work these past few weeks shooting a 30hrs of content for a new EXOS certification that will be launching later this summer (which is going to kick ASS!) so we're more than ready to relax by the pool, get our red rock fix, and take our pup for a swim in the creek! Cannot wait. Thanks AGAIN to Mark and Amy!

Then on Thursday morning, we'll go back to Dr. Gailius (cranial osteopath at Midwestern University clinic) this for my second treatment. My first visit with him a few weeks ago was focused a bit more on discussion and evaluation. He felt some definite dural stiffness and lots of congestion/fluid in my sub occipital area...observations that have been made before by several different PTs/DOs and any consensus of opinion is a positive in my book. It's just a matter of figuring out HOW to fix that.

Many posts ago, I mentioned that a few doctors (including one of my PTs and a spinal surgeon) had noticed something interesting on my MRI. Basically, it looks there's a slight "kink" in my spinal cord, which you can actually see in the image below (I stuck a little arrow in there).

We were told this is called a Basilar Invagination, which occurs when top of the C2 vertebra migrates upward. It can cause narrowing of the foramen magnum (the opening in the skull where the spinal cord passes through to the brain). It also may press on the lower brainstem. No one has been sure exactly how significant (if at all) this could be. After all, who knows what each person's "normal" anatomy really looks like before an injury, right?

With each new practitioner and treatment protocol that comes and goes, I continue to feel more and more frustrated. And though I have to be careful about too much Googling of words like "chronic daily cervicogenic headache, whiplash, etc... "(stumbling onto a forum where someone recounts their last twenty years in pain can bring tears to my eyes pretty instantaneously), I've been finding myself hungrier than ever for the answers that I can't seem to find. With all of the discussion around dural tension, sub-occipital congestion, and possible dysfunction with cerebral spinal fluid flow, it just seems to me like there's a missing piece of the puzzle. I mean, shit, there has to be some reason I'm not responding to anything we've tried.

As far as the pathology is concerned, I've learned that basilar invaginations can be both congenital and acquired and sure enough, can be associated with post-whiplash conditions. Today, Craig reached out to Dr. Dodick, my old neurologist at Mayo Clinic. We're thinking it may be a good idea to see him and hopefully get a referral to a neurosurgeon, as this would be more their territory. Hopefully, we'll hear back from him soon and will be able to move forward with that.

Until then, cheers to a quick getaway to one of my favorite places on earth.

(A throwback from Craig's surprise 40th helicopter ride last July!)