In the last two years, I've seen many of you. I'm not sure of the exact number at this point, and I would hate to insult you so early on by mistakenly including chiropractors or naturopaths in my tally (calm down, it's a joke) but let's just say it's more than an ideal number. Don't get me wrong, I have nothing against you. I respect your profession more than you know. I trust you with my life and I genuinely believe you when you say that your number one goal is to help people. But I think that in order to truly help people, you MUST be able to appreciate the user experience...to understand the patient perspective. Here we go.
1. When you yourself aren't able to provide us a solution, try to put your ego aside and help us find someone or something that can. If you really feel like there's nothing more you can do to help guide us in the right direction, please don't become an additional barrier or source of stress. For example, if we call your office to request our medical records, please don't refuse to send them, forcing us to go through a completely avoidable complaint process with the U.S. Office for Civil Rights.
2. Modernize your practice and communication. It's 2014. Fax machines are obsolete and email is a perfectly acceptable (and convenient) means of relaying information. Also, you don't need to be an award winning typist, but when you are charging us hundreds of dollars per hour, don't sit in front of us using using the hunt and peck one finger method to record your notes. Worse yet, please don't decide that a voice dictation method is more convenient for you and interrupt us every twelve seconds through the duration of our conversation to repeat what we have told you into your microphone. That actually may be the opposite of efficient.
3. Keep enough chairs in your waiting room for all of us to sit. If cigarette smokers tend to linger on the sidewalk outside your waiting room, consider finding a solution to this problem.
4. Don't let us perceive your annoyance if we express concern about the drugs you've recommended. You understand the reality and statistics of adverse side effects because you're the expert. We are not.
5. If you don't provide us with new patient paperwork before our appointment, don't fill out the paperwork for us during the first 20 minutes of our one hour appointment with you. If you insist on doing this, definitely don't charge us $450 per hour.
6. Manage your schedule. We're reasonable people, and most of us will understand that emergences happen and certain situations warrant extra time and attention (which we're actually grateful for!), which means the occasional two hours spent in a waiting room are inevitable. But if you are consistently running 45-90 minutes behind, perhaps it's time to reevaluate your scheduling capacity.
7. Open your mind and try not to judge. If you're an alternative medical practitioner, don't scoff at the conventional path we've pursued. If you're a conventional medical practitioner, don't roll your eyes at our experiences with alternative treatments. Just because you haven't read the research doesn't mean the data doesn't existence. The data not existing doesn't negate an opportunity for you to learn something that could help more of us down the road.
8. Be empathetic. And no, that doesn't require a psychology degree or mean that you need to hold our hand and sing kum ba yah. It means that you need to be able to see the world, even if just momentarily, through eyes other than your own. Maybe it's our boyfriend's perspective you need to adopt. Can you imagine what it would be like bringing your significant other to doctor after doctor after doctor without relief? What their state of mind must be like? Their level of frustration and exhaustion? At the risk of sounding golden-rule-ish, how would you want to be treated if you were sitting on the other side of the table?
9. Don't underestimate the power of body language. Make eye contact. Shake our hands when we come into your office. Use a purposeful tone of voice. Don't reach into your pocket to check your phone while we speak to you. If we start crying, try handing us a tissue box instead of immediately turning around or looking away because it makes you feel uncomfortable. There is no level of intellect, degree, or salary that excuses you from exercising these basic social skills.
10. For the love of *insert respective greater power*, do not interrupt us repeatedly (or anyone, for that matter) when we're speaking to you. Don't just hear our story, listen. Some parts may seem irrelevant and we apologize because we know you have a schedule to keep, so be able to tactfully keep our conversation focused and on track. If this isn't a skill you possess, practice it.
11. If we cry during our visit with you because we're in physical pain and frustrated that we're not making progress, don't diagnose us with a mood disorder and suggest a menu of anti-depressants to help us feel better. This will make us feel misunderstood and discouraged even more.
12. At the end of every visit, confirm that we're on board with the treatment plan you've put worth. Ask us if we have questions or concerns that weren't addressed.
13. Last but not least, let us know you’re on our team. I know you can't promise us that you'll have the magic bullet cure, but make a promise that you'll support us. Don't assume that we already have a team of people behind us. Trust me when I say that all we want is to be able to leave your office feeling less hopeless than when we arrived. Saying something as simple as “I'm committed to helping you” could be all it takes.
Monday, March 31, 2014
Wednesday, March 26, 2014
B-More, round 2...plus some unconditional happiness
Since I last wrote, post-first round of injections with Dr. Crutchfield, I have yet to feel any relief or changes in my symptoms. Frustrating, yes...but like I explained before, the "average" number of necessary injections is 2.36 so still room for hope that they could actually help. Dr. Crutchfield assured us last week that it's still worth going through with round 2. If I don't experience any changes after that, we'll reassess and likely not proceed with a third set.
So Craig and I fly back to Baltimore tomorrow for my Friday morning appointment. In addition to the injections, he'll also review the radiology report from the x-rays I had done yesterday here in Phoenix. We're hoping to see an improvement in the ligament instability at C1/C2, as a result of wearing that sweet neck brace these past 9 weeks. It's been tough forcing myself to keep it on when I haven't felt a sliver of improvement in my pain. Case in point - I pulled up next to a friend yesterday at a red light. We rolled down our windows and he yelled "where's your neck brace??" and I said, "oh, it's right here" as I reached into my bag, which was sitting in the passenger seat next to me. Like so many other things I've done in chasing down this headache, the lack of positive feedback (that I can FEEL, that is) is incredibly challenging to deal with. I liken it to the frustration of someone trying to lose weight, who exercises and eats well every single day and never ever sees their numbers shift...not even a tiny little bit. As more time passes, it becomes harder and harder for that person to stay motivated...to feel like the small steps they take every day are propelling them forward.
Well that's kind of a bummer mindset to get stuck in. Until a few weeks ago, Craig and I had a no-fail remedy for my bummed out feeling, and that was YouTube-ing videos of cute puppies (obviously). Somewhere along the line, I decided that it would just be easier if we got our own cute puppy and that would save us the trouble of sorting through all of the mediocre YouTube clips. Wearing Craig down wasn't an overnight process...it took relentless commitment and persistence. Given that I'm not working right now, I convinced him that if we ever wanted a dog (which we knew we both did), NOW was actually the perfect time. So I arranged for us to visit a litter of black and yellow lab puppies and once we saw this face, there was no turning back.
If you're friends with me on Facebook, this isn't breaking news because I've probably blown up your newsfeed over the last week or so (you can unfriend me, I'll understand). But our little Charlie girl truly is the most welcomed source of unconditional happiness for both Craig and I. It doesn't matter how shitty you feel...try looking at this and not smiling.
So Craig and I fly back to Baltimore tomorrow for my Friday morning appointment. In addition to the injections, he'll also review the radiology report from the x-rays I had done yesterday here in Phoenix. We're hoping to see an improvement in the ligament instability at C1/C2, as a result of wearing that sweet neck brace these past 9 weeks. It's been tough forcing myself to keep it on when I haven't felt a sliver of improvement in my pain. Case in point - I pulled up next to a friend yesterday at a red light. We rolled down our windows and he yelled "where's your neck brace??" and I said, "oh, it's right here" as I reached into my bag, which was sitting in the passenger seat next to me. Like so many other things I've done in chasing down this headache, the lack of positive feedback (that I can FEEL, that is) is incredibly challenging to deal with. I liken it to the frustration of someone trying to lose weight, who exercises and eats well every single day and never ever sees their numbers shift...not even a tiny little bit. As more time passes, it becomes harder and harder for that person to stay motivated...to feel like the small steps they take every day are propelling them forward.
Well that's kind of a bummer mindset to get stuck in. Until a few weeks ago, Craig and I had a no-fail remedy for my bummed out feeling, and that was YouTube-ing videos of cute puppies (obviously). Somewhere along the line, I decided that it would just be easier if we got our own cute puppy and that would save us the trouble of sorting through all of the mediocre YouTube clips. Wearing Craig down wasn't an overnight process...it took relentless commitment and persistence. Given that I'm not working right now, I convinced him that if we ever wanted a dog (which we knew we both did), NOW was actually the perfect time. So I arranged for us to visit a litter of black and yellow lab puppies and once we saw this face, there was no turning back.
If you're friends with me on Facebook, this isn't breaking news because I've probably blown up your newsfeed over the last week or so (you can unfriend me, I'll understand). But our little Charlie girl truly is the most welcomed source of unconditional happiness for both Craig and I. It doesn't matter how shitty you feel...try looking at this and not smiling.
Friday, March 14, 2014
First visit with Dr. Crutchfield
Monday's visit with Dr. Crutchfield in Baltimore went as planned. Fortunately, he had already received ALL of my records back in January so at least it didn't feel like we were completely starting from scratch. Based on the examination and review of my fluoroscopic motion x-ray, he didn't see any signs of traumatic brain injury (always a good thing), and agreed that all symptoms are likely coming from the rocking of my C1/C2 vertebra and the consequent inflammation around my occipital nerve (also known as "occipital neuralgia"). By definition, occipital neuralgia is caused by the occipital nerve being trapped and irritated by the tendons of the back of the neck. Every time my head moves (which, let's face it...is pretty much all of the time, even when my activity level is modified) the nerve will be irritated and can cause a headache that extends over the top of the head to the temples and behind the eyes (exactly where I feel my pain).
The doc was so "impressed" by the clarity of my instability that he asked my permission to use the imaging for a presentation at an upcoming neurology conference. Knowing that some doctor (and ultimately, patient) out there could potentially learn from the journey I've been on, even if just from a single step, is at least a gratifying feeling.
So Dr. Crutchfield proceeded with the first round of injections as planned, which contained Lidocaine (a local anesthetic) and Kenalog (an anti-inflammatory corticosteroid). On the right side of my head (which is the better of the two) the needle slid right in, but on the left side I literally heard and felt the "crunch" of the needle going in...proof of just how inflamed the area is. Gross.
He reminded us that in his experience, it takes an average of 2.36 injections for patients in my situation to feel relief, with an ultimate success rate of 86%. I'll continue wearing the neck brace and before I head back to Baltimore for my second round of injections in about two weeks, I'll have another x-ray taken here in AZ. When Dr. Crutchfield looks at the x-ray, the instability should ideally be improved, given that I'll have been in the brace for 9 weeks by then. IF there's still too much mobility at that 9 week mark, we'll talk about another approach to PT to focus on my deep intrinsic neck muscles.
If the injections DON'T work, it could be because of accumulated scar tissue. If that's the case, he would refer me to one of his colleagues, Dr. Ducic at Georgetown University Hospital, who performs nerve decompression surgery. He's actually the surgeon who performed Brianna Scurry's surgery from that story I mentioned a few posts ago. That surgery has a 91% success rate. I REALLY don't want it to come to surgery, but still lots of hypotheticals between here and there so for right now, I'm trying just trying to take it one step at a time.
I left my appointment on Monday with prescriptions for three different medications, which I've been on now for a few days...
1. A Methylprednisone Dospak - the anti-inflammatory steroid
2. Tizanidine - a muscle relaxant to help my neck muscles calm down
3. Gabapentin (i.e. Neurontin) - an anti seizure drug to help bring the pain down (also the one I was on last summer and stopped taking because it made me feel like shit, but this is a much, much lower dose)
I'm not a huge fan of being on this stuff, but I've had to just accept that it's not a long term solution, but simply part of the process. When I expressed my concern about side effects to Craig, he reminded me of one possible side effect I hadn't mentioned...pain relief. Touché.
So, that's the update. In case you haven't figured this out by now, my body likes to make things interesting...so, no...I haven't yet felt any relief from the injections or medications this week. Given the statistic he provided about the average number of injections needed, I shouldn't feel too discouraged, although he did say that he would expect at least SOME relief to justify performing the next round. Right now we're waiting to hear back from him to figure out what to do if I don't experience any changes before the end of the month when we're scheduled to fly back to Baltimore.
Thanks all for reading...and for all of the love and support along the way :)
The doc was so "impressed" by the clarity of my instability that he asked my permission to use the imaging for a presentation at an upcoming neurology conference. Knowing that some doctor (and ultimately, patient) out there could potentially learn from the journey I've been on, even if just from a single step, is at least a gratifying feeling.
So Dr. Crutchfield proceeded with the first round of injections as planned, which contained Lidocaine (a local anesthetic) and Kenalog (an anti-inflammatory corticosteroid). On the right side of my head (which is the better of the two) the needle slid right in, but on the left side I literally heard and felt the "crunch" of the needle going in...proof of just how inflamed the area is. Gross.
He reminded us that in his experience, it takes an average of 2.36 injections for patients in my situation to feel relief, with an ultimate success rate of 86%. I'll continue wearing the neck brace and before I head back to Baltimore for my second round of injections in about two weeks, I'll have another x-ray taken here in AZ. When Dr. Crutchfield looks at the x-ray, the instability should ideally be improved, given that I'll have been in the brace for 9 weeks by then. IF there's still too much mobility at that 9 week mark, we'll talk about another approach to PT to focus on my deep intrinsic neck muscles.
If the injections DON'T work, it could be because of accumulated scar tissue. If that's the case, he would refer me to one of his colleagues, Dr. Ducic at Georgetown University Hospital, who performs nerve decompression surgery. He's actually the surgeon who performed Brianna Scurry's surgery from that story I mentioned a few posts ago. That surgery has a 91% success rate. I REALLY don't want it to come to surgery, but still lots of hypotheticals between here and there so for right now, I'm trying just trying to take it one step at a time.
I left my appointment on Monday with prescriptions for three different medications, which I've been on now for a few days...
1. A Methylprednisone Dospak - the anti-inflammatory steroid
2. Tizanidine - a muscle relaxant to help my neck muscles calm down
3. Gabapentin (i.e. Neurontin) - an anti seizure drug to help bring the pain down (also the one I was on last summer and stopped taking because it made me feel like shit, but this is a much, much lower dose)
I'm not a huge fan of being on this stuff, but I've had to just accept that it's not a long term solution, but simply part of the process. When I expressed my concern about side effects to Craig, he reminded me of one possible side effect I hadn't mentioned...pain relief. Touché.
So, that's the update. In case you haven't figured this out by now, my body likes to make things interesting...so, no...I haven't yet felt any relief from the injections or medications this week. Given the statistic he provided about the average number of injections needed, I shouldn't feel too discouraged, although he did say that he would expect at least SOME relief to justify performing the next round. Right now we're waiting to hear back from him to figure out what to do if I don't experience any changes before the end of the month when we're scheduled to fly back to Baltimore.
Thanks all for reading...and for all of the love and support along the way :)
Sunday, March 9, 2014
Quick trip to Baltimore
Right now Craig and I are on board a plane headed for Baltimore, MD. Tomorrow morning I have my first appointment with Dr. Crutchfield, a vascular neurologist at Sinai Neurology. I haven't posted an update since my Hruska Clinic recap, so this seemed like a good time to do so.
Thirteen days ago, I woke up feeling better than I have in a long time. My headache was very much present, but at a low enough level of pain that I was pretty much fighting the urge to jump up and down. The ole' pain scale is virtually meaningless to me these days (hard to measure pain relative to pain) but I did happily report to Craig a "3", a substantial improvement in my normal 6-8 range. Unfortunately, it gradually crept back up over the course of the day. By evening, I was back to "normal pain" and have been there since. Seriously, what kind of f'd up joke is that?
So I've kept on keeping on the last two weeks...still wearing my glasses from the neuro-optometrist in Lincoln, performing my PRI rehab, going to Pilates, taking lots of walks, hammering out some interval workouts on the Keiser bike and Vasper at EXOS API. This past week in particular, I've been in a lot of pain. Whether the pain is causing the constant tension in my deep neck muscles or vice versa, I'm not totally sure, but it's likely a little of both. I had a bodywork session with one of the EXOS massage therapists, Eric, to try to loosen things up. He worked mainly around my t-spine with some fascial work on my scalp. I also saw Veronika for a few hours on Wednesday. We were optimistic (trying to still be) that after the PRI work, my body would be a bit more receptive to some of the manual work. Acknowledging that my neck definitely "felt different" (which could also be at least partially attributed to the neck brace), and in an attempt to improve circulation and alleviate tension, she worked on the vascular restrictions in my head/neck (I mean really, look at that vascular system??) and even my left arm (a limb I've affectionately coined my "metal arm", in honor of the two plates and sixteen screws that have called it home since a soccer collision 12 years ago). We've speculated that there could be some "tug" coming from my forearm, which compelled us to try some "scraping" later in the week too. This basically consists of rubbing body butter on my arm and Craig using a little tool to dig into the area around my scars.
I'll be honest, though, it's frustrating as HELL to still not be feel even just a little bit better. I'm (BEYOND) looking forward to tomorrow's injections with Dr. Crutchfield, but will say that it's been taking a lot of energy to prevent the perpetual cycle of hope and disappointment I've been experiencing from turning into a chronic state of discouragement. Fortunately for me, Craig has a pretty amazing way of restoring that depleted energy and hope. He's a real keeper huh?
I'll plan to post an update after tomorrow's visit, where I'm hoping to gain a better understanding of my expectations over the next few weeks. As of right now, I'm scheduled to fly back to Baltimore again at the end of the month for a second set of these injections, though I'm not sure if that will depend on the results of these. Fingers crossed either way.
To ensure that the "bummer" updates haven't exceeded the happy ones in this post, I wanted to include a few final thoughts. As I mentioned earlier, I've started a part-time entrepreneurship program at SeedSpot, a local non-profit that helps to incubate businesses with a social impact. On Wednesday mornings we have "localpreneur" sessions, where been-there/done-that's provide motivational and subject matter lectures to the group. It's super interesting. This week, one of the speakers was a woman named Asha Wadher, President of a local IT company called Atmosphere Solutions. She presented her own entrepreneurial journey through a truly authentic and inspirational series of "lessons-learned".
Granted, I'm definitely more consumed at the moment in operation-get-rid-of-headache than I am in starting my business (or anything relating to my career for that matter) but throughout the lecture, I couldn't help from drawing parallels between almost every point she was making and the unique and unplanned journey that I'm on. I'll give you a few examples of her take-aways...
1. Give yourself the gift of failure
Her message: Don't be afraid to mess up. Just like they had to try and fail at various web services before landing on their niche in e-commerce, the solution comes at the end of "failed" attempts.
I heard: I can't get upset and discouraged about every doctor's appointment that I've left in tears or procedure that hasn't worked because all of those experiences are leading me to the solution.
2. Listen to your gut and hone in on it.
Her message: Trust your instinct. Certain employees weren't working out but when she started reflecting on the initial interview process, she recognized a "gut feeling" she was ignoring.
I heard: I often feel overwhelmed by different treatment paths and others' input. No one knows my body better than I do. If taking drugs for my head doesn't feel right, listen to that feeling.
3. There's no silver bullet.
Her message: In business, it's not always about fitting a round peg in a round hole. You have to keep creating the dots. It's about the synergy of all things coming together. "Luck" is what happens when preparation meets opportunity.
I heard: Stop thinking in absolutes. One approach to therapy is probably not going to cure me. One procedure is probably not going to cure me. The synergy of everything I'm doing is what matters, which is why I should remain positive and motivated for each small step.
4. It's all about perspective.
Her message: The worst possible day I have as an entrepreneur doesn't even come close to the struggles that some people in the world face every day.
I heard: When you're out walking on a trail and you hear "right behind you" and a mountain biker flies past you and for a split second you feel sorry for your self that you can't be on your bike...look around and think about how lucky you are to be where you are and to be healthy enough to be out hiking.
There were a few more, but you get the idea.
It was inspiring for me to hear these messages, even if I was choosing to hear them out of context. As I'm sure any person in chronic pain can relate to, not being able to do the things you want to do or feel that way you want to feel, day after day,has a way of deflating confidence that you'll ever be capable of doing or feeling what you want. And whether you're building your own business or trying to get rid of a headache, self-belief is something you simply can't afford to lose.
Thirteen days ago, I woke up feeling better than I have in a long time. My headache was very much present, but at a low enough level of pain that I was pretty much fighting the urge to jump up and down. The ole' pain scale is virtually meaningless to me these days (hard to measure pain relative to pain) but I did happily report to Craig a "3", a substantial improvement in my normal 6-8 range. Unfortunately, it gradually crept back up over the course of the day. By evening, I was back to "normal pain" and have been there since. Seriously, what kind of f'd up joke is that?
So I've kept on keeping on the last two weeks...still wearing my glasses from the neuro-optometrist in Lincoln, performing my PRI rehab, going to Pilates, taking lots of walks, hammering out some interval workouts on the Keiser bike and Vasper at EXOS API. This past week in particular, I've been in a lot of pain. Whether the pain is causing the constant tension in my deep neck muscles or vice versa, I'm not totally sure, but it's likely a little of both. I had a bodywork session with one of the EXOS massage therapists, Eric, to try to loosen things up. He worked mainly around my t-spine with some fascial work on my scalp. I also saw Veronika for a few hours on Wednesday. We were optimistic (trying to still be) that after the PRI work, my body would be a bit more receptive to some of the manual work. Acknowledging that my neck definitely "felt different" (which could also be at least partially attributed to the neck brace), and in an attempt to improve circulation and alleviate tension, she worked on the vascular restrictions in my head/neck (I mean really, look at that vascular system??) and even my left arm (a limb I've affectionately coined my "metal arm", in honor of the two plates and sixteen screws that have called it home since a soccer collision 12 years ago). We've speculated that there could be some "tug" coming from my forearm, which compelled us to try some "scraping" later in the week too. This basically consists of rubbing body butter on my arm and Craig using a little tool to dig into the area around my scars.
I'll be honest, though, it's frustrating as HELL to still not be feel even just a little bit better. I'm (BEYOND) looking forward to tomorrow's injections with Dr. Crutchfield, but will say that it's been taking a lot of energy to prevent the perpetual cycle of hope and disappointment I've been experiencing from turning into a chronic state of discouragement. Fortunately for me, Craig has a pretty amazing way of restoring that depleted energy and hope. He's a real keeper huh?
I'll plan to post an update after tomorrow's visit, where I'm hoping to gain a better understanding of my expectations over the next few weeks. As of right now, I'm scheduled to fly back to Baltimore again at the end of the month for a second set of these injections, though I'm not sure if that will depend on the results of these. Fingers crossed either way.
To ensure that the "bummer" updates haven't exceeded the happy ones in this post, I wanted to include a few final thoughts. As I mentioned earlier, I've started a part-time entrepreneurship program at SeedSpot, a local non-profit that helps to incubate businesses with a social impact. On Wednesday mornings we have "localpreneur" sessions, where been-there/done-that's provide motivational and subject matter lectures to the group. It's super interesting. This week, one of the speakers was a woman named Asha Wadher, President of a local IT company called Atmosphere Solutions. She presented her own entrepreneurial journey through a truly authentic and inspirational series of "lessons-learned".
Granted, I'm definitely more consumed at the moment in operation-get-rid-of-headache than I am in starting my business (or anything relating to my career for that matter) but throughout the lecture, I couldn't help from drawing parallels between almost every point she was making and the unique and unplanned journey that I'm on. I'll give you a few examples of her take-aways...
1. Give yourself the gift of failure
Her message: Don't be afraid to mess up. Just like they had to try and fail at various web services before landing on their niche in e-commerce, the solution comes at the end of "failed" attempts.
I heard: I can't get upset and discouraged about every doctor's appointment that I've left in tears or procedure that hasn't worked because all of those experiences are leading me to the solution.
2. Listen to your gut and hone in on it.
Her message: Trust your instinct. Certain employees weren't working out but when she started reflecting on the initial interview process, she recognized a "gut feeling" she was ignoring.
I heard: I often feel overwhelmed by different treatment paths and others' input. No one knows my body better than I do. If taking drugs for my head doesn't feel right, listen to that feeling.
3. There's no silver bullet.
Her message: In business, it's not always about fitting a round peg in a round hole. You have to keep creating the dots. It's about the synergy of all things coming together. "Luck" is what happens when preparation meets opportunity.
I heard: Stop thinking in absolutes. One approach to therapy is probably not going to cure me. One procedure is probably not going to cure me. The synergy of everything I'm doing is what matters, which is why I should remain positive and motivated for each small step.
4. It's all about perspective.
Her message: The worst possible day I have as an entrepreneur doesn't even come close to the struggles that some people in the world face every day.
I heard: When you're out walking on a trail and you hear "right behind you" and a mountain biker flies past you and for a split second you feel sorry for your self that you can't be on your bike...look around and think about how lucky you are to be where you are and to be healthy enough to be out hiking.
There were a few more, but you get the idea.
It was inspiring for me to hear these messages, even if I was choosing to hear them out of context. As I'm sure any person in chronic pain can relate to, not being able to do the things you want to do or feel that way you want to feel, day after day,has a way of deflating confidence that you'll ever be capable of doing or feeling what you want. And whether you're building your own business or trying to get rid of a headache, self-belief is something you simply can't afford to lose.
Friday, February 21, 2014
Hruska recap
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!
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!
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??)
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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.
.JPG)
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.
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