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Monday, January 27, 2014

new plan

It's been a tough few weeks and days for me. My pain levels just haven't let up, which means I've been spending more time than I want to be "laying low". I was organizing medical expenses for my taxes the other day and calculated just shy of $10K that I've paid out of pocket this year alone. That's a lot of moola to wrap my head around, especially when that's year #3 and I'm starting a new year without any less pain. I've also been feeling discouraged after trying CBD (cannabidiol) over the weekend without any alleviation of symptoms. CBD does, however, make me feel very tired. But it turns out pain + drowsy doesn't feel any better than regular ole pain.

And then there's the anxiety that's been leading up to today, the last day of my extended medical leave from work. I thought I was mentally prepared to give my official notice of leave this morning but it's still been an upsetting process for me. If you had asked me when I graduated college, this certainly isn't the career move I would've anticipated making four years down the road. But shit happens..I'm doing what I need to do to get better and the only direction to move from here is forward. I'll lose my benefits starting next week, but thankfully will be able to go straight on to Craig's health insurance.

Ok, now to the good stuff. So we've been waiting to hear back from Dr. Crutchfield in Baltimore, who was reviewing my records before deciding whether I should fly out for a consultation. Craig's been communicating with a case manager from his office, who's been incredibly helpful. This morning Dr. Crutchfield called Craig to propose a new plan of attack.

Dr. Crutchfield acknowledged the ligament laxity I have going on at C1/C2 as a likely source of my head pain. He explained to Craig that the the excess motion of C1 ("rocking") can irritate the spinal nerves, which turn into the greater occipital nerve. Where the occipital nerve passes through the trapezius muscle can cause a trigger point, which could be a likely additional source of my headache. (Holy shit, that could explain the chronic tension in my traps that no amount of manual therapy will get rid of?!?)

It's not uncommon for irritation of the occipital nerve to trigger a "central headache", which would manifest as dizziness with eyes closed, sensitivity to light and sound, etc. Dr. Crutchfield was very happy to hear that I DON'T have those symptoms and therefore feels confident that my pain is caused by peripheral irritation. He explained that treating my symptoms with drugs and joint mobilization are therefore, not the answer...which makes so much sense to me.

Even though I may or may not have cried like a baby when Craig told me that Dr. Crutchfield doesn't want me to come out there yet, all hope is not lost (which I learned when I let him finish talking). In fact, hope is something we have more of now than we've had in a while! Here's what's about to go down...(drumroll)...

-Starting tomorrow (when it arrives in the mail), I'll be wearing a soft neck collar 24/7 with the goal of completely shutting down movement of my neck and giving the ligaments a chance to self repair. Part of me has a little anxiety attack when I think about the implications of being in a neck brace. I won't be able to do anything that involves neck flexion, extension, rotation, etc. I'll also need to avoid creating tension in the surrounding area, including my traps. No lifting, no yoga, and...wait for it...certainly no mountain biking. But hey, I can deal with that. Nine weeks seems to me like a small price to pay.

-In 6 weeks (or maybe a little less), Craig and I will fly out to MD to meet with Dr. Crutchfield. He'll perform some trigger point injections with a steroidal anti-inflammatory where my greater occipital nerve goes through my trapezius. We'll do this again a few weeks later, and possibly again a few weeks after that. According to the doc, it takes an average of 2.3 injections for patients in my position to get better. He gave Craig the option of finding someone here in AZ to do those injections, but we both felt most comfortable going straight to Dr. Crutchfield and avoiding any possibility of this process not going as absolutely perfectly as it can. When my symptoms have alleviated, whenever that is, we'll redo an x-ray to make sure the amount of rocking has decreased (this time just through an open mouth static x-ray to calculate how much excursion C1 has on C2).

So there we go. Tomorrow I am still going to my appointment with Dr. Anghel (a referral from Dr. Schurgin, who didn't feel comfortable discussing potential nerve blocks/ablations at C1). We'll hold off on any procedures while we pursue this new plan with Dr. Crutchfield, but figured we may as well get his insight since we already had this on the books). We'll also be turning the focus of my rehab appointments to creating the best healing environment in my body. It turns out that I don't have a shortage of other issues to address, so we figure this is the best time to do so.

Maybe next time I'll keep things entertaining with a little neck collar visual (but maybe not).

Wednesday, January 15, 2014

pushing through pain

This blog post has been ruminating in my mind for weeks, if not months now. Despite the debilitating nature of my headache (yes, still single tense), I exercise almost every day. I mountain bike, trail run, hike. I go to yoga. I lift, I interval train. Some days I have kick-ass workouts, snatching up Queen of the Mountains like it’s my damn job and other days I spend the majority of a yoga class fighting back tears and disputing the inner voice telling me how counterproductive and wasteful my effort is. The point is, I show up and I do it.

I struggle with justifying why though. As an athlete who’s endured my fair share of injuries and setbacks, I truly don’t subscribe to the “no pain, no gain” philosophy. I’m a huge proponent of adequate recovery (both physical and mental), recognizing that’s it too often the missing link of optimal wellbeing and performance. In fact, I just decided this week that I wouldn’t be racing in the McDowell Meltdown (mtb race) on Saturday. I know I could do it because I rode the race course last week, just to re familiarize myself with it in case something miraculous happened between now and then, but if I’m going to pay the registration fee and make a day of it, I just don’t want to be in pain. There’ll be plenty more races. (That last sentence is Craig’s voice speaking to me...can you tell?)

I’m pretty preceptive though, so I know when that when people catch a glimpse of my leg (spoiler alert…this is gross), what they’re really thinking is, “um..what the hell is wrong with you? You have a chronic pain condition from a bike injury and you still ride your bike and do stupid shit like that? Find a new hobby.” Actually, a physical therapist did make that suggestion once. That’s when you knew someone just isn’t speaking your language. Side note: in the few minutes after this wreck last week, I was definitely less focused on my headache...soo how about that?

All bloody cuts aside, it gets me thinking….why do I push through pain?

1. Because I have to. Ok, sorry…starting out a little tongue in cheek, I know. But the reality is, when you’re in pain twenty four hours a day, seven days a week, there’s only one alternative…inactivity. Though this isn’t the case for everyone with chronic pain, my symptoms aren’t mitigated by “taking it easy”. When it comes down to it, I’d rather have a headache and squeeze in a 20 minute metabolic circuit than have a headache and watch House Hunters (don’t be silly, I still watch House Hunters, just after). It doesn’t mean I don’t listen to my body and calibrate my day accordingly; it’s just my way performing a cost-benefit analysis.

2. Pain is stressful. As I explained to Craig in my latest meltdown earlier this week, feeling frustrated is really f-ing exhausting. Believe me, I try not to “sweat the small stuff”, but it feels so frustrating to wake up every morning (and sometimes throughout the night) in pain, spend the day working with physical therapists, etc. without any relief, and then wake up the next day in pain, and the next day, and the next day (you get the idea). For me, physical activity is a HUGE source of stress relief. And sometimes simply going through the motions (Shavasnah anyone?) is enough, which is why consistency is key. Don’t get my wrong, I’ve spent my fair share of time lying on the couch these past few months, but on days when I’m feeling most discouraged, that’s just about the worst place for me to be.

3. Working out reminds me that I don’t hate my body. This sounds weird, but bear with me. You know when you buy, let’s say, a new dishwasher…and it just sort of sucks. Like it’s not doing it’s job. It’s way too loud, it’s constantly clogging, and the dishes come out with shit all over them? And you want to just say, “screw it, I don’t want this anymore. It’s causing me way too many problems. I need a new one”. Well, that’s how I tend to think about my head a lot of the time. I know it’s attached to my body and it’s been with me since the beginning and it holds all of thoughts, blah blah blah…but sometimes I really want to take it to a store and return it for one that doesn’t agonize me every day. HOWEVER, every physical accomplishment I make reminds me to be proud of what my body’s capable of, whether it’s moving up to 100 lbs in my single leg RDLs or winning my category in a mountain bike race, or even progressing through an arm balance at yoga. It sounds a bit cliche, but experiencing the end-result or reward of dedication and mental strength makes me believe that all of the hard work (physical and emotional) that is going in to making me pain-free WILL pay off.

Here's to hoping that day comes really soon!

Monday, January 6, 2014

more docs, medical marajuana, and a potential trip to Baltimore

This morning I had my follow-up with Dr. Schurgin. Craig and I had a few objectives heading into today's appointment. As this whole process has trudged on, defining these clear-cut "goals" has become increasingly important for me. The idealist in me wants to leave every doctor's appointment with an answer to my pain so when I walk out of a visit without the solution, it's easy to let the feelings of discouragement take over...an emotional state that I can't afford to entertain. Instead, we create simple and achievable objectives (that can make otherwise shitty appointments still feel successful). So on today's agenda was:

1. Ask Dr. Schurgin why I haven't yet experienced relief from the pulsed radiofrequency nerve ablation that he performed on 12/19.

2. Get his take on trying cannabidiol (CBD), the non-psychoactive plant cannabinoid. I've obviously known about the use of marajuana for medicinal purposes (having even discussed the option earlier this year with my Mayo neurologist, Dr. Dodick, but opting not to pursue it out due to my concern that it wouldn't be more than a band-aid pain fix), though it wasn't until just recently that Craig and I stumbled upon Project CBD, a non-profit educational service dedicated to promoting and publicizing research into the medical utility of cannabidiol (CBD) and other components of the cannabis plant. Here's a quick blurb from their site...

"Cannabidiol — CBD— is a compound in cannabis that has significant medical effects, but does not make people feel 'stoned' and can actually counter the psychoactivity of THC. The reduced psychoactivity of CBD-rich cannabis may make it an appealing treatment option for patients seeking anti-inflammatory, anti-pain, anti-anxiety, anti-psychotic, and/or anti-spasm effects without disconcerting lethargy or dysphoria. Scientific and clinical studies underscore CBD’s potential as a treatment for a wide range of conditions, including rheumatoid arthritis, diabetes, alcoholism, MS, chronic pain, schizophrenia, PTSD, antibiotic-resistant infections, epilepsy, and other neurological disorders. CBD has demonstrated neuroprotective and neurogenic effects, and its anti-cancer properties are currently being investigated at several academic research centers in the United States and elsewhere."

After researching AZ's regulation and Craig stopping at a local dispensary, we confirmed that CBD-rich strains are available here (which is great because we could have easily shot up to Denver for it but then flying home, etc. could get messy).

3. Find out if Dr. Schurgin thinks it would be worth seeing the doctor that he originally mentioned who performs nerve blocks at C1 and C2 (as it's a bit riskier and outside Dr. Schurgin's scope of practice).

4. Is there anything else he thinks is worth trying??


1. He explained that there's still a chance the ablation could help, though he seemed fairly confident that it would have by now. He admitted that he wasn't quite sure why I would have had a positive response to the diagnostic but not the procedure itself. Perhaps placebo? (I don't think so) Perhaps the injected numbing agent went higher than he intended during the diagnostic and was actually closer to C1?


2. Though he hasn't had ample experience prescribing CBD for pain, Dr. Schurgin was open to me giving it a shot and would be happy to provide me the necessary recommendation to acquire a license. The conversation was actually kind of funny...
Doc: "Have you never tried it?"
Me: "No."
Doc: "Not even with friends?"
Me: "Ah, no."
Doc: "Not even in college?"
Me: Still no.


3. He agreed that it'd probably be a good idea to see this other guy, Bogdan Anghel, MD, at Pain Management and Rehab Medicine Center, first for a consultation and then to discuss whether it was worth trying a block at C1/C2.

4. While admitting that his "bag of tricks" was running low, Dr. Schurgin suggested a trial of Topamax, the anticonvulsant drug that I had discussed a few months back with another neurologist, Dr. Kauffman. I had been immediately turned off after discussing some of the potential risks and side-effects, including hormonal changes that could interfere with pregnancy, etc. Dr. Schurgin also added that immediate discontinuation or missed dosage of the drug causes acute withdrawal, which can lead to seizure. He also suggested we look into a headache clinic in Michigan, Michigan Headache & Neurological Institute.


For now, I'm continuing to put Topomax on the back burner. I immediately scheduled a consult with Dr. Anghel, but it won't be for a few more weeks, so have decided to give the CBD a try in the meantime. I go back to Dr. Schurgin's office tomorrow morning to review the required certification paperwork. Once that's completed, I'll submit my application to the public health department and should receive the license within a week or so. Hoping that process is speed bump-free.

On a separate note, Craig has also been in contact with a neurologist based in Maryland, Dr. Crutchfield, MD, Director of the Comprehensive Sports Concussion Program (who Mark Verstegan knows through the NFL Player's Association). Here's an interesting 2 minute video of Dr. Crutchfield discussing his area of expertise. I would also highly recommend checking out this video about Brianna Scurry's career-ending struggle with post-concussion syndrome and her (lifesaving) treatment under the care of Dr. Crutchfield (scroll to bottom). Stories like these touch and inspire me in ways I could have never imagined.

I'm in the process right now of putting together all of my medical records, doctors notes, imaging reports, etc. to send to Dr. Crutchfield. He'll review them first before letting us know whether it's appropriate for us to fly out for a consultation.

I have a few more things going on this week too, including PT, massage, and an energy work session called The Emotion Code, so will likely post a recap of that later in the week.

To end on a happy note, here's some pet-therapy in action from my trip home for the holidays. I miss this alarm clock already!

Thursday, January 2, 2014

world premier video

Snowed in and time to blog! Though I've enjoyed a relaxing few days of holiday break with friends and family (first to Craig's parents' in Knoxville, TN and now at my house in MA), I don't have any real exciting updates on the medical front. It turns out my headache didn't get the vacation memo? I'm trying to remain optimistic that my nerve ablation could still kick in some relief and should have a more accurate understanding of that likelihood next Monday when I see Dr. Schurgin for a follow-up. Veronika (one of my PTs) also let me know that she's been researching and studying some advanced techniques on C1, 2, and 3 to try when I see her next Tuesday.

So last weekend, I roadtripped to Saratoga to meet up with my friend Nick, who's working as a PA in an orthopedics clinic outside of Rochester, NY. Like many of the doctors I've seen since getting the digital motion x-ray (DMX) done this fall, he wasn't aware that such an imaging modality existed and suggested that I post the actual video, which I agreed was a good idea. So, sit back, relax, and enjoy!

From a diagnostic standpoint, this was a huge breakthrough for me. Whereas the static films hadn't shown any abnormalities, the DMX is what uncovered the ligament instability in my upper cervical spine. Granted, this one piece of information wasn't the solution in itself, though it's certainly helping to steer my pursuit of treatment in a more purposeful direction. Quite honestly, I don't understand why every sports medicine doctor wouldn't be utilizing this technology.

Click here to learn a little more about Digital Motion X-Ray.
"We believe that the future of medical imaging should follow the principles of biomechanics and the human body as an active entity rather than a motionless object."