Craig and I arrived home from Lincoln, NE last night. Aside from the disappointment of returning home with the same headache I left with last weekend, we both feel like the trip went as smoothly as possible. We have more clarity around the mechanisms of my pain, more confidence that it can be fixed, and a solid set of tools at our disposable to make it happen.
Picking up where I left off in my last post, which provided a detailed account of my first day at the Hruska Clinic, Tuesday consisted of another session with Ron (this time along with the optometrist, Dr. Weiss), a visit to their dentist to get my mouth piece molds made, a second PT session with Torin, and a visit to the vision center to get my glasses made.
After thinking more about my case between Monday and Tuesday, Ron offered us some additional insight. Though on the surface I appear to be more of a "head/neck patient", he explained that in his eyes, I'm actually more of a "hip patient". This didn't blow us away, as the hip connection has been something I've explored with several other therapists. I know mentioned this a while back, but in 2010 I had arthroscopic surgeries on both hips to repair labral tears. My left hip hasn't been an issue since, but my left one does irritate me quite a bit (what I would describe as a "pinchy" feeling and the constant need to "get at" my TFL with a tennis ball). To be honest, though, the severity of my head makes any other aches and pains seem negligible.
Anyway, Ron thinks that the issues I'm experiencing with my head are ultimately being driven from my hips, specifically my hip flexors. My left femur is too far forward and my left too far back. The rehab exercises that we spent the next few days learning with him and Torin are therefore focused on the connection between my left quad, glute, and abs. By getting me out of extension, he thinks that this will be able to remove the tension in my low back and neck, which are contributing to the "twisting" of my cranium. I have a series of exercises and progressions that I'll spent the next few weeks focused on mastering. I wear my glasses while doing my rehab (along with some work around the house) and my mouth piece at night with the goal of maintaining neutrality (mental image real quick: neck brace, mouth piece that causes my bottom lip to stick out, glasses...you're welcome) As of right now, I'll likely be going back to Lincoln at some point in the next few months, but just taking it one step at a time.
Looking ahead, Ron is also totally aligned with us pursuing the course of treatment with Dr. Crutchfield, which includes continuing to wear the neck brace for another couple of weeks before we head out to Baltimore for my first set of injections.
All in all, Craig and are both very happy that we made the trip to Lincoln. It can certainly be difficult for me to stay positive when I'm having to relearn movement patterns, breathing techniques, and trying to "feel the floor under my feet" when all I want to do is make my f-ing headache go away. I understand the theory and the science but sometimes the emotional frustration of chronic pain can make calm and logical thought a bit blurry. Craig has been explaining it to me like this: We have two goals. The first goal is to get rid of my pain and the second is to restore optimal function to my body. Even though the first goal is our top priority, we have to chip away at the second one right now in order to make the first one possible. So after an exhausting week, I appreciate his ability to stay strategic, focused, and optimistic more than ever.
On a final, happy, nothing-to-do-with-having-a-headache note, I am SUPER excited for this coming Monday because I'll be starting a four month program with Seed Spot, a local business incubator that supports early stage social entrepreneurs who are launching ventures that create a positive impact in the lives of people and communities on a local, national, or global scale. I've had an idea brewing for quite some time, and though I'm not yet in a position, health-wise, to launch into it full speed ahead, I'm looking forward to getting the wheels churning in what seems like an incredibly innovative and supportive environment. More to come!
Friday, February 21, 2014
Monday, February 17, 2014
Day 1 at the Hruska Clinic
Craig and I touched down in good ole' Nebraska yesterday, leaving the 80 degree sunshine and greeting the midwest with open arms. We were so grateful to have friends "gift" us the flight with their extra miles and have an apartment-style hotel to stay in with pretty cheap patient rates for the week (a mile away from Whole Foods, might I add). We even scored a 3 day free pass to Aspen Fitness across the street, so while Craig worked out this morning, I was able to get in my bike sprints in a spin studio full of KEISER bikes! (It's the little things, right??)
After grabbing lunch and walking around the University of Nebraska campus for a little bit, we headed over the Hruska Clinic for my first visit with Ron Hruska, MPA, PT. Going into the appointment, we both knew that his approach would be unlike anything we've experienced thus far (with the exception of the introduction to PRI that I've had with Joe over the last few weeks)...and we weren't disappointed.
After talking through my story and evaluation, Ron explained that he really isn't too concerned about the instability in my upper cervical spine (which as a refresher, is the reason I'm in the neck collar). Instead of nerve irritation caused by the instability, he believes that my pain is likely originating from two alternative sources...
1. I have cranial pain caused by torsion through my skull. Basically, my sphenoid is twisted and my temporal bone is positioned too far back. That twisting of my sphenoid would also explain why every time I open my mouth, the disc gets displaced anteriorly and my jaw pops. Ron feels confident that this CAN be corrected through visual integration. If you're interested, you can learn a lot more about the science behind PRI Vision here , but the basic idea is that by wearing eyeglasses with a very specific and specialized prescription, your brain and nervous system can re-wire themselves to restore proper communication between the brain and body.
2. My foramen magnum (that large opening in the base of the skull through which the spinal cord exits the cranial vault, pictured below) is too far forward. This is creating contact with my brain stem, which has become a stabilizing strategy, creating more tension on my brainstem. This actually makes a lot of sense to Craig and I because my most recent MRI showed a basilar invagination in my brain stem (which looks like a little "kink") but no doctor has really been able to make much of it so it hasn't been really on our radar as anything significant. He also said that my brain is perceiving the floor at my thoracic spine (around T4), which is putting more stress on my brain stem to create stability.
Ron laid out the course of treatment today, which will consist of wearing the glasses and also wearing a bite plate part-time (removing contact between my teeth will be part of the process of restoring temporal-mandibular-cervical-cranial function. We tried a few different lenses today, which corrected my hip and neck mechanics (in profoundly obvious ways). A "normal" person should be able to feel a difference wearing the glasses standing up, but I couldn't feel anything (even with stronger lenses) which I think reinforced that we've got some real work to do. When Craig put them on for comparison he almost fell over. I didn't have any pain relief today but we definitely have a lot of information to carry us into the next few days. Tomorrow I have 3 appointments - one with Ron and the optometrist, one with the dentist to get an impression for a bite plate, and then one with another PT, Torin.
All in all, quite an educational day for us. As much as I would love for there to be an off switch to my headache (I actually had a dream there was during my nap from Omaha to Lincoln yesterday, haha!), I know it's still a process so the most important thing is the we're pursuing the right steps. More to the come in the next few days, for sure.
After grabbing lunch and walking around the University of Nebraska campus for a little bit, we headed over the Hruska Clinic for my first visit with Ron Hruska, MPA, PT. Going into the appointment, we both knew that his approach would be unlike anything we've experienced thus far (with the exception of the introduction to PRI that I've had with Joe over the last few weeks)...and we weren't disappointed.
After talking through my story and evaluation, Ron explained that he really isn't too concerned about the instability in my upper cervical spine (which as a refresher, is the reason I'm in the neck collar). Instead of nerve irritation caused by the instability, he believes that my pain is likely originating from two alternative sources...
1. I have cranial pain caused by torsion through my skull. Basically, my sphenoid is twisted and my temporal bone is positioned too far back. That twisting of my sphenoid would also explain why every time I open my mouth, the disc gets displaced anteriorly and my jaw pops. Ron feels confident that this CAN be corrected through visual integration. If you're interested, you can learn a lot more about the science behind PRI Vision here , but the basic idea is that by wearing eyeglasses with a very specific and specialized prescription, your brain and nervous system can re-wire themselves to restore proper communication between the brain and body.
2. My foramen magnum (that large opening in the base of the skull through which the spinal cord exits the cranial vault, pictured below) is too far forward. This is creating contact with my brain stem, which has become a stabilizing strategy, creating more tension on my brainstem. This actually makes a lot of sense to Craig and I because my most recent MRI showed a basilar invagination in my brain stem (which looks like a little "kink") but no doctor has really been able to make much of it so it hasn't been really on our radar as anything significant. He also said that my brain is perceiving the floor at my thoracic spine (around T4), which is putting more stress on my brain stem to create stability.
Ron laid out the course of treatment today, which will consist of wearing the glasses and also wearing a bite plate part-time (removing contact between my teeth will be part of the process of restoring temporal-mandibular-cervical-cranial function. We tried a few different lenses today, which corrected my hip and neck mechanics (in profoundly obvious ways). A "normal" person should be able to feel a difference wearing the glasses standing up, but I couldn't feel anything (even with stronger lenses) which I think reinforced that we've got some real work to do. When Craig put them on for comparison he almost fell over. I didn't have any pain relief today but we definitely have a lot of information to carry us into the next few days. Tomorrow I have 3 appointments - one with Ron and the optometrist, one with the dentist to get an impression for a bite plate, and then one with another PT, Torin.
All in all, quite an educational day for us. As much as I would love for there to be an off switch to my headache (I actually had a dream there was during my nap from Omaha to Lincoln yesterday, haha!), I know it's still a process so the most important thing is the we're pursuing the right steps. More to the come in the next few days, for sure.
Tuesday, February 11, 2014
Nebraska bound!
First things first, a quick update before I dive into our next jet-setting adventure.
I'm still rockin' the neck collar (week #3, but who's counting?). Perhaps my discomfort tolerance is a bit skewed these days but it's actually not as bad as I was anticipating. Aside from when I'm breaking a sweat (which just feels gross and makes me thankful it's not 115 degrees), I just try to imagine that I'm wearing one of those cozy airplane neck pillows...or a unique scarf...or really stiff turtle neck? It is funny when random people approach me in public and drop one of these -- "Ohh, looks like THAT hurts!" or my favorite one from earlier today..."Somebody had an ouchie!" One guy even came up to me at Whole Foods last week and without saying anything, flipped me his business card. A chiropractor? Shit, I wish I had thought of that! Haha, oh man..
Unfortunately, the brace has had zero impact on my pain...but Dr. Crutchfield did warn us that might be the case. He even said the pain could increase a bit. The goal of stabilizing my neck with the collar is to allow the ligaments a chance for self-repair. Not that lessened pain wouldn't be welcomed, but it isn't necessarily expected if the nerves are irritated, hence the series of injections I'll be starting on March 10 when we fly out to Baltimore to see Dr. Crutchfield.
It is really frustrating not having an "in the mean time" source of pain management. I ended up making a trip back to the dispensary last week and bought a new bottle of higher dose CBD drops to try. I took a full dropper and a half when I got home, which made me drowsy just like the other kind I'd tried, but didn't do anything to my headache. Being "stuck" in pain has come to feel really panicky for me. Sure, I can try to distract myself by doing something I enjoy like being outside or talk through my frustrations with Craig or even just say "f-it" and let the tears flow (all necessary things, by the way), but the reality is, those things don't take away my headache.
As far as my activity level goes (which, as it turns out, has a strong correlation to my sanity levels), I've been trying to do at least something every day. We live just minutes away from some beautiful trail systems so have been walking/hiking a few days per week, squeezing in some stationary bike sprints, and have been going to Pilates at AZ Body Mechanics 4-6 times per week. I've been to some so-so Pilates studios since living in AZ but this is the real deal, and having incorporated some Pilates work with Anna over the past few months, I was thrilled to find this spot. There are some modifications I have to make on the reformer and tower in order to avoid flexion/extension/rotation of my neck and tightening of my traps, but the instructors have been super helpful in providing alternatives.
Ok, so you're probably wondering where Nebraska comes in to play. A few weeks ago, the PT Manager at AP, Tony, suggested to Craig that I have a visit with one of the PT interns, Joe, who has experience in something called PRI (Postural Restoration Institute®). Here's an outline of the basic concepts of PRI:
-The human body is not symmetrical. The neurological, respiratory, circulatory, muscular and ocular systems differ on each side of the body with different responsibilities, functions, positions and demands. The asymmetry balances the body—for example—the torso is balanced with a liver on the right and a heart on the left.
-PRI trained therapists recognize these imbalances and typical patterns associated with system disuse or weakness that develops because of dominant overuse. This dominant overuse of one side of the body can develop from other system unilateral overuse.
-This asymmetry compliments the special functions of the two sides of the brain. Although the two hemispheres of the brain share responsibilities for some functions, each hemisphere controls the opposite side of the body. PRI trained therapists understand how the two hemispheres of the brain affect the balance of the body.
-When these imbalances are not regulated by reciprocal function during walking, breathing or turning, a strong pattern emerges creating structural weaknesses, instabilities or musculo-skeletal pain syndromes. All PRI trained therapists incorporate reciprocal function to balance muscle activity around the sacrum (pelvis), the sternum (thorax) and the sphenoid (middle of the head).
-Different factors can all influence asymmetrical tendencies and patterns. Other animals have their own tendencies. Toads use their right forepaw more than their left, chimpanzees hold a branch up with the left hand and pick the fruit with their right hand, and humans usually balance their center of gravity over their right leg. PRI trained therapists recognize the common, integrated patterns of human stance like extremity use, respiratory function, vestibular imbalance, mandibular orientation and foot dynamics and correct these patterns through exercise programs.
So I started working with Joe last week, and based on his assessment, he thought it would be a smart decision for me to go straight to the Hruska Clinic in Lincoln, NE, whose services are based on the philosophic and integrative concepts of the Postural Restoration Institute (also where the founder, Ron Hruska, MPA, PT practices). Thankfully, we were able to get the ball rolling pretty quickly. Joe had me get an eye exam last week for him to send directly to Ron along with a summary of his evaluation and they were able to get us on the schedule for next week! At the Hruska Clinic, in addition to the application of PRI science, treatment can include integration of complementary disciplines, including dentists, podiatrists, pulmonologists, chiropractors, optometrists, osteopaths, etc. We won't know for sure who will comprise my team of practitioners (though we're speculating vision will be a piece of the puzzle) but we have five appointments set up over the course of four days. I should have a better idea after the visit with Ron on Monday.
So there we go. Both Craig and I are hopeful that this could be a promising step for me. It doesn't change anything we have planned with Dr. Crutchfield - just trying to attack from all angles. I'm REALLY looking forward to next week's trip and will plan to post an update while I'm there.
I'm still rockin' the neck collar (week #3, but who's counting?). Perhaps my discomfort tolerance is a bit skewed these days but it's actually not as bad as I was anticipating. Aside from when I'm breaking a sweat (which just feels gross and makes me thankful it's not 115 degrees), I just try to imagine that I'm wearing one of those cozy airplane neck pillows...or a unique scarf...or really stiff turtle neck? It is funny when random people approach me in public and drop one of these -- "Ohh, looks like THAT hurts!" or my favorite one from earlier today..."Somebody had an ouchie!" One guy even came up to me at Whole Foods last week and without saying anything, flipped me his business card. A chiropractor? Shit, I wish I had thought of that! Haha, oh man..
Unfortunately, the brace has had zero impact on my pain...but Dr. Crutchfield did warn us that might be the case. He even said the pain could increase a bit. The goal of stabilizing my neck with the collar is to allow the ligaments a chance for self-repair. Not that lessened pain wouldn't be welcomed, but it isn't necessarily expected if the nerves are irritated, hence the series of injections I'll be starting on March 10 when we fly out to Baltimore to see Dr. Crutchfield.
It is really frustrating not having an "in the mean time" source of pain management. I ended up making a trip back to the dispensary last week and bought a new bottle of higher dose CBD drops to try. I took a full dropper and a half when I got home, which made me drowsy just like the other kind I'd tried, but didn't do anything to my headache. Being "stuck" in pain has come to feel really panicky for me. Sure, I can try to distract myself by doing something I enjoy like being outside or talk through my frustrations with Craig or even just say "f-it" and let the tears flow (all necessary things, by the way), but the reality is, those things don't take away my headache.
As far as my activity level goes (which, as it turns out, has a strong correlation to my sanity levels), I've been trying to do at least something every day. We live just minutes away from some beautiful trail systems so have been walking/hiking a few days per week, squeezing in some stationary bike sprints, and have been going to Pilates at AZ Body Mechanics 4-6 times per week. I've been to some so-so Pilates studios since living in AZ but this is the real deal, and having incorporated some Pilates work with Anna over the past few months, I was thrilled to find this spot. There are some modifications I have to make on the reformer and tower in order to avoid flexion/extension/rotation of my neck and tightening of my traps, but the instructors have been super helpful in providing alternatives.
Ok, so you're probably wondering where Nebraska comes in to play. A few weeks ago, the PT Manager at AP, Tony, suggested to Craig that I have a visit with one of the PT interns, Joe, who has experience in something called PRI (Postural Restoration Institute®). Here's an outline of the basic concepts of PRI:
-The human body is not symmetrical. The neurological, respiratory, circulatory, muscular and ocular systems differ on each side of the body with different responsibilities, functions, positions and demands. The asymmetry balances the body—for example—the torso is balanced with a liver on the right and a heart on the left.
-PRI trained therapists recognize these imbalances and typical patterns associated with system disuse or weakness that develops because of dominant overuse. This dominant overuse of one side of the body can develop from other system unilateral overuse.
-This asymmetry compliments the special functions of the two sides of the brain. Although the two hemispheres of the brain share responsibilities for some functions, each hemisphere controls the opposite side of the body. PRI trained therapists understand how the two hemispheres of the brain affect the balance of the body.
-When these imbalances are not regulated by reciprocal function during walking, breathing or turning, a strong pattern emerges creating structural weaknesses, instabilities or musculo-skeletal pain syndromes. All PRI trained therapists incorporate reciprocal function to balance muscle activity around the sacrum (pelvis), the sternum (thorax) and the sphenoid (middle of the head).
-Different factors can all influence asymmetrical tendencies and patterns. Other animals have their own tendencies. Toads use their right forepaw more than their left, chimpanzees hold a branch up with the left hand and pick the fruit with their right hand, and humans usually balance their center of gravity over their right leg. PRI trained therapists recognize the common, integrated patterns of human stance like extremity use, respiratory function, vestibular imbalance, mandibular orientation and foot dynamics and correct these patterns through exercise programs.
So I started working with Joe last week, and based on his assessment, he thought it would be a smart decision for me to go straight to the Hruska Clinic in Lincoln, NE, whose services are based on the philosophic and integrative concepts of the Postural Restoration Institute (also where the founder, Ron Hruska, MPA, PT practices). Thankfully, we were able to get the ball rolling pretty quickly. Joe had me get an eye exam last week for him to send directly to Ron along with a summary of his evaluation and they were able to get us on the schedule for next week! At the Hruska Clinic, in addition to the application of PRI science, treatment can include integration of complementary disciplines, including dentists, podiatrists, pulmonologists, chiropractors, optometrists, osteopaths, etc. We won't know for sure who will comprise my team of practitioners (though we're speculating vision will be a piece of the puzzle) but we have five appointments set up over the course of four days. I should have a better idea after the visit with Ron on Monday.
So there we go. Both Craig and I are hopeful that this could be a promising step for me. It doesn't change anything we have planned with Dr. Crutchfield - just trying to attack from all angles. I'm REALLY looking forward to next week's trip and will plan to post an update while I'm there.
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).
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!
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??
Annnnnd...Go!
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?
Check.
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.
Check.
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.
Check.
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.
So...
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!
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??
Annnnnd...Go!
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?
Check.
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.
Check.
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.
Check.
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.
So...
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."
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."
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