So last week, I had both my first Rolfing treatment and my first manual treatment with Dr. Chikly. Here's a recap of those...
The Rolfing wasn't totally what I expected, though not in a bad way. The goal of this form of structural integration is to open, balance, and align your body by working primarily with the fascia, or connective tissue. It has a reputation of being pretty painful, and that's because when it was first developed by Ida Rolf in the 1970s, it was characterized by the depth at which the practitioner was able to get into the body and manipulate the fascial system. So, deeper = harder = more pain. These days, we obviously know more about how fascia is richly innervated with nerves. As a result, deeper/harder/more painful can easily become counterproductive, as the body responds by tensing up and consequently not allowing the practitioner to reach deeper tissue layers. The practice of Rolfing has actually evolved to be a much gentler method, but its reputation has sort of stuck. (Not that I would have cared either way...hell, I'd probably let someone take a hammer to my body if they said they could pound out the pain.)
Based on his evaluation, I wouldn't say that Dr. Maitland had any fresh thoughts (as in, new opinions we haven't heard) but he felt confident it was worth trying a few sessions. He worked on different parts of my body, though mostly shoulders and above, and used a percussor instrument (which is basically a hand-held high level vibration tool that rapidly pulses straight down versus a traditional circular motion) to help break up myofascial adhesions. I think he was expecting me to feel some changes during the session. I didn't, and that was sort of a bummer but also not super surprising. We decided that regardless of how I felt over the next few days, we'd get at least one more session on the books.
A few days after that was my appointment with Dr. Chikly. Craig reminded me before we went to be prepared for some out-of-the-box thinking. Example: Dr. Chikly had asked me to bring the supplements I'm taking right now (currently just Vit. D, fish oil, and my raw food multi) and Craig said he might hold them up to my body to test their energy fields. And he was right...that was one of the first things he did. I like to think I'm pretty open minded, even though it sure can frustrating at times to connect the dots. But, I can't exactly afford to be close minded right now either.
The manual work that Dr. Chikly performed on me was also gentle, and felt similar to the treatments I've been having with the two other cranial osteopaths (though I'm sure he was using some different techniques). His feedback wasn't extensive, but did say that felt torsion through my spinal cord, which aligns with all of the dural tension speculation we've been receiving over the past few months. Similar to Dr. Maitland, I didn't feel any changes in pain during the session but we decided to set up at least one more visit, this coming Monday.
Since both of those treatments, my pain has remained the same, which as you can imagine, is frustrating.
As always though, Craig and I have set in motion a few next/simultaneous steps.
1. This coming Tuesday, we see Dr. Dodick, my neurologist at Mayo. I mentioned this in a previous post, but the purpose of this visit is to discuss a referral to his friend/colleague and director of the headache and migraine program at UCLA, who is pioneering a procedure directed at C1. We've only communicated with Dr. Dodick via email about this, so all we know is that it's an x-ray guided C1 block that's similar to a C2 block but targets a different nerve root that has never been approached before because they didn't believe it caused pain until now. We're looking forward to getting in there to chat more and likely plan another trip out to LA soon.
2. In early September, I am scheduled to go back to AZ Pain Specialists to see Dr. McJunkin and talk more about Stem Cell Therapy for treatment of chronic pain. I'll talk more about this as the appointment gets closer or you can watch a quick video of Dr. McJunkin talking about it here.
3. This is going to seem a bit random, but lately my left hip has really been bothering me. I had arthroscopic surgery on both hips in 2010 to repair labral tears from soccer/running and for the most part, they haven't given me problems since. My left one has always felt a bit "pinchy", but as far as my commitment to fully rehab it goes, my headache has sort of taken precedence. It's annoying, but compared to my head, I can't even call the sensation in my hip "pain".
As I've mentioned before, though, I've always had this intuitive feeling of my left hip issues being connected to my left trap (chronically tight) and left side of my neck (both of which I am CERTAIN are part of my head issue). And I've had therapists work on my hip over the last couple of years, agreeing that a relationship between the two were quite possible...we've just never seemed to crack the code or gain any traction (on one or other).
In the past month or so, my hip has been feeling worse, and there have been really bad headache days that I've noticed correlate with even worse hip days. Craig and I decided it would be a good idea to restart some PT at EXOS to focus on my hips. Our thought being that best case scenario, we affect my head or gain some insight into whatever the relationship is between the two and worse case, my hip feels better and we've created an optimized healing environment for my head.
So a few times per week for the past several weeks, I've been working with Tony (PT) and Eric (massage therapist). Although all of hip muscles have benefited from the work we've been doing, I'd been having a hard time "getting at" the place where I feel the most discomfort. Kind of in the front...but underneath...a little in the back...but deep. We eventually figured out that the likely culprit is my psoas muscle. Bear with me...there is a reason I'm explaining all of this!
The psoas, also known as a primary hip flexor and ‘’13th Organ,’’ originates at the transverse processes of last thoracic and 5 lumbar vertebrae (T12-L5), bisects through deep inside of the gut and attaches at the inner femur (thigh bone). This is a very unique muscle that both flexes and laterally rotates the hip, and is one of the major muscles responsible for walking.
The lower portion of the psoas intertwines with the fibers of the iliacus, and together they form a muscle group known as iliopsoas.
The psoas also affects the structure of our upper body. It originates at T12 which is a major attachment site for the trapezius muscle. Through this junction the psoas can send forces into the upper body and directly affects the level of shoulder flexion (reaching your arm above your head).
Did you see that?!?!?
It originates at the attachment site for the trapezius!
Like I said, I have always felt 500% confident that the chronic tension in my left trap is connected to my headache. I haven't known how, and still don't, but just understanding this anatomy feels like I'm finally putting two puzzle pieces together.
Since figuring this out, I've naturally been reading and researching it like a f-ing maniac and have learned that although chronic hip flexion (sitting, etc.) is the most common cause of psoas dysfunction, it can also of course become restricted from physical injuries, car accidents, falls, etc.
I'm assuming if you're still reading, you're at least somewhat interested in what I'm writing so I'll include this excerpt that I found online...
The EMG study was done on a 50 year-old actress who, after a neck injury that occurred 30 years ago, suffered with dizziness, vertigo and tension headaches. Manipulation of the atlanto-occipital and atlantoaxial joints gave her only short-term relief. Possibly in this case, if the blocked sacroiliac joint was the cause of the hypotonic gluteus maximus, then manipulation of the sacroiliac joint would have eliminated the hyperactivity of the cervical musculature and would have been more effective than just manipulation of the upper cervicals.
It appears that the underlying cause of headache is this case was really related to a hypotonic gluteus maximus, which can have other causes besides a sacroiliac blockage. An internally rotated hip will inhibit the gluteus maximus, as will a chronically shortened psoas muscle. The gluteus maximus will be inhibited by its antagonist, the short psoas. Attempting to strengthen the weak gluteus maximus without normalizing the tightened psoas would prove fruitless.
In ordinary walking there should be minimal activity of the upper trapezius and levator scapulae but if these muscles are hyperactive, there will be over stress to the cervical spine. Janda has stated that with over activation of the shoulder and neck muscles, due to decreased activation of the gluteus maximus during hip extension, results in abnormal anterior tilt and rotation of the lower cervical segments, mostly at C6 and partly at C5 and C7.6 With each step there is excessive rotation and tilting occurring in the cervical spine.
With a patient lying prone with feet off the edge of a table, it is possible to see the hyperactivity of the shoulder neck muscles as the patient extends the hip.
This discussion emphasizes the fact that an abnormal pattern of movement in one areas (lumbar spine, hip and pelvis) was related to over activity of muscle activity in a distant area (cervical spine). The cause could have been articular (sacroiliac blockage) or muscular (shortened psoas). Obviously, we must look at the total subluxation complex with each patient.
Bottom line: I still don't know for sure what's going on, but I know that I have a cervicogenic headache (originating from cervical spine), my psoas doesn't feel good, and that psoas dysfunction can impact the cervical spine. Craig just ordered me a book called Front to Back “The Hidden Culprit”: This new approach to iliopsoas enables you to successfully treat your back pain, neck pain and headaches, which I'm really looking forward to reading.
Tony and I just started working on my psoas last week in PT (with deep tissue, dry needling, and some different exercises) so I'm feeling good about having a new focus with that too.
As always, hoping to have more positive news to report soon!
Saturday, August 2, 2014
Thursday, July 24, 2014
3 year pain reflection + 2 new docs
First thing's first, today is Craig's birthday! Of course this bring more excitement to me than him, but that's just because I welcome any chance I get to celebrate Craig. He is such an incredibly special person. That's not just because of the guidance, love, support, and inspiration he's selflessly provided through every second of my headache journey (he would correct me and say, *our headache journey), but the circumstances have certainly provided a constant reminder of just how lucky I am to have him by my side. I find it sort of funny to think about the meaning behind any future marriage vows: to take care of each other "in sickness and in health". Guess it doesn't hurt to seal the deal, but I'm pretty sure we've got that covered...am I right? So happy birthday Craig Friedman! Now come home from work please so we can crack open a bottle of Kombucha and get this party started.
So, headache update. From a pain standpoint, I don't have too much new and exciting information. It's there when I wake up, when I take Charlie to the park every morning, when I work out, when I grocery shop, when I relax on the couch, when I cook dinner, when I bring Charlie back to the park, when I hang out with Craig after work, and when I climb into bed. That 1-10 pain scale is virtually meaningless to me at this point, as I think 24/7 pain has made my perception of it so subjective. For example, if I only had a headache twice a month, let's say, I'm sure I would plan for those to be rest/unproductive days spent on the couch with an icepack. Maybe I'd be able to rate the headache as a 7/10 (10 being the worst pain I could imagine). But it gets trickier to apply that logic to a 24/7 headache. Am I at a 7/10? I have no f-ing idea, because I don't even remember what a 0 or 1 or 2 out of 10 feels like. Another reason I think the pain scale is BS for chronic pain is that it ignores a very significant dimension...that is the emotional stress, panic, and despair of feeling trapped in a state of physical agony day after day after day. So falling off my bike into a cactus or slicing my finger chopping vegetables might hurt like a b****, but the underlying certainty that the pain will go away totally mitigates the sense of suffering. Does that make sense?
That wasn't supposed to sound so helpless. I do believe my pain will go away (thanks to a certain someone who hammers that message into my head like it's nobody's business), but I'd be lying to say there wasn't some ebb and flow to my optimism. Sometimes, the struggle for me to believe there are better days ahead manifests simply as thoughts of self-doubt and frustration. I left my job almost a year ago. Will I be able to "catch up" in my career? Will I be able to make money and contribute financially? Will I regain my hunger for learning and intellectual stimulation? Why am I going back to this doctor for a seventh treatment when the previous sixth haven't helped me at all? Why does it feel like it's Groundhog day? Who the f*** has a headache for 3 years and why can't anybody figure out what's wrong me? (You know, those kind of thoughts.)
And then we can't forget about the slightly more articulated, expressive forms of that struggle (which usually feature some display of waterworks on my part)...or perhaps even a mid-mountain bike emotional breakdown, when I tell Craig that I want to just sell my bike because "it did this to me so why do I keep riding it?" It's ok, I can laugh about that now.
Bottom line, it's a daily challenge for me to stay laser focused on the outcome of of a pain-free tomorrow, but a challenge that I'm committed to overcoming. In the meantime, I avoid getting bogged down by the noise and distraction of negativity by directing my energy in the most purposeful way possible. While meditation, yoga, and other activities that require me to "be in my own head" end up digging me deeper into a hole of frustration, other forms of exercise have been providing that outlet I so desperately need. Someone asked me today, mid-workout, what I was training for. My answer: sanity :)
Before I sign off for the day to get ready for tonight's surprise party (kidding Craig, but that doesn't get old for me) I wanted to include some exciting treatment updates. I mentioned in my last post that this Friday, I have my first Rolfing session with Dr. Maitland. I'm super optimistic that this form of myofascial manipulation could really tap into the dural tension that everyone seems pretty confident is contributing to my pain.
And then this coming Sunday, I have another appointment with a new practitioner, Bruno Chikly, MD, DO, LMT, founder of the Chikly Health Institute and international seminar leader, lecturer, and writer. He specializes in osteopathic techniques and other hands-on modalities, both in Europe and the United States, including Manual Lymphatic Therapies, Osteopathy in the Cranial field, Biodynamics program in Osteopathy, CranioSacral Therapy, Visceral Manipulation, Mechanical Link, Muscle Energy, Myofascial Release, Neuromuscular Therapy, SomatoEmotional Release, Orthobionomy, Chi Nei Tsang, Zero Balancing, Reflexology, Polarity Therapy, Homeopathy and Oriental medicines. Craig and I knew he doesn't spend much time seeing patients anymore and spends a good chunk of time in Europe, but we knew he has a home-base in Scottsdale, so Craig tracked down a number a few weeks back and left a message and fortunately, he got in touch with us and is willing to see us at his home this weekend.
I'll be sure to post an update next week after these two sessions. And lastly, I thought I'd update the ole' health history list that I summarized back in October when I started writing. Much easier to carry this with me to my appointments than trying to squeeze a few extra lines in the margin. Seriously though, you're giving me 2 inches to answer that question?
Summary of specialists, diagnostics/tests, and treatment/therapies I've tried since my post-bike accident headaches started in July 2011:
Specialists
-11 Chiropractors
-10 Physical Therapists
-7 Neurologists
-6 Massage therapists
-4 Dentists
-4 Pain management doctors
-3 Cranial sacral therapists
-3 Cranial osteopaths
-3 Chinese Medicine MDs
-2 Myofascial release practitioners
-2 Functional neurologists
-2 Psychologists
-2 regular MDs
-1 Orthodontist
-1 Naturopath
-1 Physiatrist
-1 Neuro-optometrist
-1 Energy healer
-1 Dietician
-1 Psychiatrist
-1 Medical intuitive
-1 Spinal surgeon
-1 myopractor
-several emergency room MDs
Tests/Diagnostics:
-GI Effects Profile
-Comprehensive blood panel
-Static spinal x-ray
-MRI (spine and brain)
-Flouroscopic motion x-ray
-Medial branch nerve block C2-C5
-Dorsal root ganglion block C1-C2
Treatments/Therapies:
-Botox injections
-Pulsed radiofrequency nerve ablation C2-C5
-Cold laser
-Ultrasound
-Cranial analgesic electrotherapeutic device
-Hypnosis
-Brainwave Optimization brain training
-Meditation
-EMDR(Eye Movement Desensitization and Reprocessing)
-Visceral mobilization
-Neural therapy injections
-Occipital nerve blocks
-Trigger point injections
-DNS (Dynamic Neuromuscular Stabilization)
-Scraping
-Dry needling
-Pilates rehab
-Craniosacral therapy
-ART (active release technique)
-Cupping (both fire and suction)
-Vasper
-Emotion Code Technique
-Medical Marajuana (CBD)
-2 different mouthpieces
-Movement-based rehab
-Massage therapy
-Yoga
-Soft collar neck brace (24/7 for 9 weeks)
-Trigger point injections with Lidocaine and Kenalog
-Postural Restoration Institute therapy
-Glasses (PRI vision)
-NUCCA adjustments (upper cervical chiropractic)
-Cryotherapy
-IV therapy (Magnesium)
-Dry needling
-ARP wave therapy
-Acupuncture
-Pharmaceuticals
*Cambia
*Neurontin
*Toradol
*DHE
*Lorazepam
*Ketorolac
*Promethazine.
*Cymbalta
*Topomax
*Meloxicam
*Tramadol
*Tizanidine
*Methylprednisone Dospak
-Natural supplements
*co Q10
*riboflavin
*fish oil
*vitamin D
*Butterbur
*Neuroplex
*Limbrel
*Glutamine/Glycine/Taurine blend
*Alpha Lipoic Acid
*Ferryonyl
*St Johns Wort
*Olive Leaf
*Curcumin
*B Complex
*ADR
*Bioactive Silver Hydrosol
*Arnica
-Dietary changes (consisting of adding wild fish/organic eggs/organic chicken back into my 100% unprocessed/organic plant-based diet)
So, headache update. From a pain standpoint, I don't have too much new and exciting information. It's there when I wake up, when I take Charlie to the park every morning, when I work out, when I grocery shop, when I relax on the couch, when I cook dinner, when I bring Charlie back to the park, when I hang out with Craig after work, and when I climb into bed. That 1-10 pain scale is virtually meaningless to me at this point, as I think 24/7 pain has made my perception of it so subjective. For example, if I only had a headache twice a month, let's say, I'm sure I would plan for those to be rest/unproductive days spent on the couch with an icepack. Maybe I'd be able to rate the headache as a 7/10 (10 being the worst pain I could imagine). But it gets trickier to apply that logic to a 24/7 headache. Am I at a 7/10? I have no f-ing idea, because I don't even remember what a 0 or 1 or 2 out of 10 feels like. Another reason I think the pain scale is BS for chronic pain is that it ignores a very significant dimension...that is the emotional stress, panic, and despair of feeling trapped in a state of physical agony day after day after day. So falling off my bike into a cactus or slicing my finger chopping vegetables might hurt like a b****, but the underlying certainty that the pain will go away totally mitigates the sense of suffering. Does that make sense?
That wasn't supposed to sound so helpless. I do believe my pain will go away (thanks to a certain someone who hammers that message into my head like it's nobody's business), but I'd be lying to say there wasn't some ebb and flow to my optimism. Sometimes, the struggle for me to believe there are better days ahead manifests simply as thoughts of self-doubt and frustration. I left my job almost a year ago. Will I be able to "catch up" in my career? Will I be able to make money and contribute financially? Will I regain my hunger for learning and intellectual stimulation? Why am I going back to this doctor for a seventh treatment when the previous sixth haven't helped me at all? Why does it feel like it's Groundhog day? Who the f*** has a headache for 3 years and why can't anybody figure out what's wrong me? (You know, those kind of thoughts.)
And then we can't forget about the slightly more articulated, expressive forms of that struggle (which usually feature some display of waterworks on my part)...or perhaps even a mid-mountain bike emotional breakdown, when I tell Craig that I want to just sell my bike because "it did this to me so why do I keep riding it?" It's ok, I can laugh about that now.
Bottom line, it's a daily challenge for me to stay laser focused on the outcome of of a pain-free tomorrow, but a challenge that I'm committed to overcoming. In the meantime, I avoid getting bogged down by the noise and distraction of negativity by directing my energy in the most purposeful way possible. While meditation, yoga, and other activities that require me to "be in my own head" end up digging me deeper into a hole of frustration, other forms of exercise have been providing that outlet I so desperately need. Someone asked me today, mid-workout, what I was training for. My answer: sanity :)
Before I sign off for the day to get ready for tonight's surprise party (kidding Craig, but that doesn't get old for me) I wanted to include some exciting treatment updates. I mentioned in my last post that this Friday, I have my first Rolfing session with Dr. Maitland. I'm super optimistic that this form of myofascial manipulation could really tap into the dural tension that everyone seems pretty confident is contributing to my pain.
And then this coming Sunday, I have another appointment with a new practitioner, Bruno Chikly, MD, DO, LMT, founder of the Chikly Health Institute and international seminar leader, lecturer, and writer. He specializes in osteopathic techniques and other hands-on modalities, both in Europe and the United States, including Manual Lymphatic Therapies, Osteopathy in the Cranial field, Biodynamics program in Osteopathy, CranioSacral Therapy, Visceral Manipulation, Mechanical Link, Muscle Energy, Myofascial Release, Neuromuscular Therapy, SomatoEmotional Release, Orthobionomy, Chi Nei Tsang, Zero Balancing, Reflexology, Polarity Therapy, Homeopathy and Oriental medicines. Craig and I knew he doesn't spend much time seeing patients anymore and spends a good chunk of time in Europe, but we knew he has a home-base in Scottsdale, so Craig tracked down a number a few weeks back and left a message and fortunately, he got in touch with us and is willing to see us at his home this weekend.
I'll be sure to post an update next week after these two sessions. And lastly, I thought I'd update the ole' health history list that I summarized back in October when I started writing. Much easier to carry this with me to my appointments than trying to squeeze a few extra lines in the margin. Seriously though, you're giving me 2 inches to answer that question?
Summary of specialists, diagnostics/tests, and treatment/therapies I've tried since my post-bike accident headaches started in July 2011:
Specialists
-11 Chiropractors
-10 Physical Therapists
-7 Neurologists
-6 Massage therapists
-4 Dentists
-4 Pain management doctors
-3 Cranial sacral therapists
-3 Cranial osteopaths
-3 Chinese Medicine MDs
-2 Myofascial release practitioners
-2 Functional neurologists
-2 Psychologists
-2 regular MDs
-1 Orthodontist
-1 Naturopath
-1 Physiatrist
-1 Neuro-optometrist
-1 Energy healer
-1 Dietician
-1 Psychiatrist
-1 Medical intuitive
-1 Spinal surgeon
-1 myopractor
-several emergency room MDs
Tests/Diagnostics:
-GI Effects Profile
-Comprehensive blood panel
-Static spinal x-ray
-MRI (spine and brain)
-Flouroscopic motion x-ray
-Medial branch nerve block C2-C5
-Dorsal root ganglion block C1-C2
Treatments/Therapies:
-Botox injections
-Pulsed radiofrequency nerve ablation C2-C5
-Cold laser
-Ultrasound
-Cranial analgesic electrotherapeutic device
-Hypnosis
-Brainwave Optimization brain training
-Meditation
-EMDR(Eye Movement Desensitization and Reprocessing)
-Visceral mobilization
-Neural therapy injections
-Occipital nerve blocks
-Trigger point injections
-DNS (Dynamic Neuromuscular Stabilization)
-Scraping
-Dry needling
-Pilates rehab
-Craniosacral therapy
-ART (active release technique)
-Cupping (both fire and suction)
-Vasper
-Emotion Code Technique
-Medical Marajuana (CBD)
-2 different mouthpieces
-Movement-based rehab
-Massage therapy
-Yoga
-Soft collar neck brace (24/7 for 9 weeks)
-Trigger point injections with Lidocaine and Kenalog
-Postural Restoration Institute therapy
-Glasses (PRI vision)
-NUCCA adjustments (upper cervical chiropractic)
-Cryotherapy
-IV therapy (Magnesium)
-Dry needling
-ARP wave therapy
-Acupuncture
-Pharmaceuticals
*Cambia
*Neurontin
*Toradol
*DHE
*Lorazepam
*Ketorolac
*Promethazine.
*Cymbalta
*Topomax
*Meloxicam
*Tramadol
*Tizanidine
*Methylprednisone Dospak
-Natural supplements
*co Q10
*riboflavin
*fish oil
*vitamin D
*Butterbur
*Neuroplex
*Limbrel
*Glutamine/Glycine/Taurine blend
*Alpha Lipoic Acid
*Ferryonyl
*St Johns Wort
*Olive Leaf
*Curcumin
*B Complex
*ADR
*Bioactive Silver Hydrosol
*Arnica
-Dietary changes (consisting of adding wild fish/organic eggs/organic chicken back into my 100% unprocessed/organic plant-based diet)
Saturday, July 5, 2014
Update
Because I know everyone reading this is waiting anxiously to hear and is as excited to know as the strangers next to us at the creek who witnesses our celebration (over and over again)...
Charlie is a swimmer!
And a hiker!
Seriously, though, watching her take to the water and hike off leash, being sure to never get ahead of Craig or let me fall too far behind her, was the cutest thing in the world... second only to every sleeping position that followed for the rest of our time in Sedona.
Certification or not, she is undoubtedly our therapy dog.
The morning after we arrived home, I had my second visit with Dr. Gailius (cranial osteopath at Midwestern University clinic). We started out by asking him what his thoughts on my basilar invagination that I talked about in my last post. He's certainly not closed minded to the idea that it could be playing a role, but like the others we've talked to about it, doesn't really know enough about BIs to have a strong opinion one way or the other. We'll plan to ask Dr. Cisler though too, who I see in Tucson on Monday for treatment #2.
Dr. Gailius did explain that with cervicogenic headaches caused by whiplash, he usually feels sphenobasilar strain (SBS) compression. SBS strain patterns are named for the position of the sphenoid on the occiput. But the odd part is, he felt like there's good movement at my sphenoid and occiput. He thinks that my occipital condyle (see image below) is locked into my 1st cervical vertebrae and still feels like there is significant dural strain.
In my occipital/cervical area, he felt inflammation/fluid build up on both my left and right sides. He felt some additional somatic dysfunction down my left arm (way more so than the right), which is the one I broke when I was 14 in a soccer collision and has hardware inside (2 plates, 16 screws), and similar dysfunction at my second rib (again, much worse on left side). Whether or not the hardware in my arm has somehow been playing a role in all of this nonsense is actually something we've talked about before and have worked (albeit very minimally) with one of my PTs months ago. Craig had also spent some time scraping my scar, just to see if freeing up some scar tissue could help. We're thinking that focusing on some arm-intensive rehab in the meantime, though, might be worth a shot.
Dr. Gailius also thought that the rotations at my OA joint (atlanto-occipital joint- the articulation between the atlas and the occipital bone) are related to my dural tension (there's no dural attachment at C1 which is why it isn't there).
Side note, real quick: For all of the anatomy & physiology flashcards I made in college, three years of this^ is an entirely more effective method of learning. Hah! What a price to pay, huh?
So anyway, I have my appointment with Dr. Cisler on Monday (which will be focused on the brain protocol I mentioned in my last post) and then go back to see Dr. Gailius at the end of next week.
A few other updates...
Dr. Dodick (Mayo Clinic neurologist) got back to us about the basilar invagination. To sum it up, he doesn't think the basilar invagination is relevant but does think it may be worth exploring intervention at C1. If you've been reading my blog all along, you may remember that we went through a bit of a circle of opinions in the C1 department and ended up not following through with any kind of invasive procedure due simply to the risk involved. But Dr. Dodick told us that his friend and colleague is pioneering a procedure directed at C1 which is showing significant promise, so I'll be going into Mayo to meet with him soon to discuss next steps.
After doing a little research, I've also decided to give Rolfing a try and scheduled my first session with Jeffrey Maitland, PhD (which isn't until the end of July). Rolfing is a form of bodywork that reorganizes the connective tissues (fascia) that permeate the entire body. I'll elaborate more on that as the treatment gets closer, but am happy to have it on the books.
Lastly, Craig just reached out today to a holistic doctor and founder of a bodywork called MyoReflex Therapy in a small city in southern Germany, near the border of Switzerland. His name is Dr. Kurt Mosseter and he was highly referred to us by USMNT coach Juergen Klinsmann when we met up with him back in May. Juergen didn't have enough good things to say about his experiences with him, so although no trips to Germany are in the works right now, we're hopeful that he has a chance to look over my history and give us his thoughts as to whether that might be worth talking more about.
Charlie is a swimmer!
And a hiker!
Seriously, though, watching her take to the water and hike off leash, being sure to never get ahead of Craig or let me fall too far behind her, was the cutest thing in the world... second only to every sleeping position that followed for the rest of our time in Sedona.
Certification or not, she is undoubtedly our therapy dog.
The morning after we arrived home, I had my second visit with Dr. Gailius (cranial osteopath at Midwestern University clinic). We started out by asking him what his thoughts on my basilar invagination that I talked about in my last post. He's certainly not closed minded to the idea that it could be playing a role, but like the others we've talked to about it, doesn't really know enough about BIs to have a strong opinion one way or the other. We'll plan to ask Dr. Cisler though too, who I see in Tucson on Monday for treatment #2.
Dr. Gailius did explain that with cervicogenic headaches caused by whiplash, he usually feels sphenobasilar strain (SBS) compression. SBS strain patterns are named for the position of the sphenoid on the occiput. But the odd part is, he felt like there's good movement at my sphenoid and occiput. He thinks that my occipital condyle (see image below) is locked into my 1st cervical vertebrae and still feels like there is significant dural strain.
In my occipital/cervical area, he felt inflammation/fluid build up on both my left and right sides. He felt some additional somatic dysfunction down my left arm (way more so than the right), which is the one I broke when I was 14 in a soccer collision and has hardware inside (2 plates, 16 screws), and similar dysfunction at my second rib (again, much worse on left side). Whether or not the hardware in my arm has somehow been playing a role in all of this nonsense is actually something we've talked about before and have worked (albeit very minimally) with one of my PTs months ago. Craig had also spent some time scraping my scar, just to see if freeing up some scar tissue could help. We're thinking that focusing on some arm-intensive rehab in the meantime, though, might be worth a shot.
Dr. Gailius also thought that the rotations at my OA joint (atlanto-occipital joint- the articulation between the atlas and the occipital bone) are related to my dural tension (there's no dural attachment at C1 which is why it isn't there).
Side note, real quick: For all of the anatomy & physiology flashcards I made in college, three years of this^ is an entirely more effective method of learning. Hah! What a price to pay, huh?
So anyway, I have my appointment with Dr. Cisler on Monday (which will be focused on the brain protocol I mentioned in my last post) and then go back to see Dr. Gailius at the end of next week.
A few other updates...
Dr. Dodick (Mayo Clinic neurologist) got back to us about the basilar invagination. To sum it up, he doesn't think the basilar invagination is relevant but does think it may be worth exploring intervention at C1. If you've been reading my blog all along, you may remember that we went through a bit of a circle of opinions in the C1 department and ended up not following through with any kind of invasive procedure due simply to the risk involved. But Dr. Dodick told us that his friend and colleague is pioneering a procedure directed at C1 which is showing significant promise, so I'll be going into Mayo to meet with him soon to discuss next steps.
After doing a little research, I've also decided to give Rolfing a try and scheduled my first session with Jeffrey Maitland, PhD (which isn't until the end of July). Rolfing is a form of bodywork that reorganizes the connective tissues (fascia) that permeate the entire body. I'll elaborate more on that as the treatment gets closer, but am happy to have it on the books.
Lastly, Craig just reached out today to a holistic doctor and founder of a bodywork called MyoReflex Therapy in a small city in southern Germany, near the border of Switzerland. His name is Dr. Kurt Mosseter and he was highly referred to us by USMNT coach Juergen Klinsmann when we met up with him back in May. Juergen didn't have enough good things to say about his experiences with him, so although no trips to Germany are in the works right now, we're hopeful that he has a chance to look over my history and give us his thoughts as to whether that might be worth talking more about.
Sunday, June 29, 2014
treatment update and basilar invagination?
First things first, it turns out I can't just add a question mark to a blog title like that without immediately thinking... "I'm Ron Burdundy?" Right?
I forgot to mention in my last post that a few weeks back, Craig and I had a phone consultation with Dr. Amen, a well-renowned MD who specializes in psychiatry and nuclear brain imaging and founder of Amen Clinics, which are scattered throughout the states. Mark Verstegen had met him through the NFLPA and had generously made the introduction so we were pretty excited to have the opportunity to chat. (I'm telling you, this is a serious team effort). Basically, Craig and I were interested in learning whether he thought there was any value in getting a functional brain scan, in order to see if I was experiencing any sort of regional blood flow restriction. After a little back and forth, he didn't seem to think it would be a warranted diagnostic. He was in full support of me seeing a cranial osteopath, though, and stressed the importance of seeing the "right" one...which is what led us to Dr. Cisler in Tucson.
Now fast forward a bit. I finished my 8th NUCCA treatments with Dr. Martin on Friday. By my last session with him, he felt that my pelvic and cervical alignment had improved but was stumped as to why my pain hasn't budged. I believe his exact words were "you're my first failure" Hah...nice, thanks! He was a quirky dude, but definitely had my best interest at heart and I appreciate his honesty. In fact, he didn't charge me for the last 3 treatments because he felt bad that he hadn't scheduled them closer together from the start.
So, what are the next steps?
Tomorrow Craig, Charlie, and I head up to Sedona for some much needed R&R. I suppose I do get plenty of it, but Craig's been out straight at work these past few weeks shooting a 30hrs of content for a new EXOS certification that will be launching later this summer (which is going to kick ASS!) so we're more than ready to relax by the pool, get our red rock fix, and take our pup for a swim in the creek! Cannot wait. Thanks AGAIN to Mark and Amy!
Then on Thursday morning, we'll go back to Dr. Gailius (cranial osteopath at Midwestern University clinic) this for my second treatment. My first visit with him a few weeks ago was focused a bit more on discussion and evaluation. He felt some definite dural stiffness and lots of congestion/fluid in my sub occipital area...observations that have been made before by several different PTs/DOs and any consensus of opinion is a positive in my book. It's just a matter of figuring out HOW to fix that.
Many posts ago, I mentioned that a few doctors (including one of my PTs and a spinal surgeon) had noticed something interesting on my MRI. Basically, it looks there's a slight "kink" in my spinal cord, which you can actually see in the image below (I stuck a little arrow in there).
We were told this is called a Basilar Invagination, which occurs when top of the C2 vertebra migrates upward. It can cause narrowing of the foramen magnum (the opening in the skull where the spinal cord passes through to the brain). It also may press on the lower brainstem. No one has been sure exactly how significant (if at all) this could be. After all, who knows what each person's "normal" anatomy really looks like before an injury, right?
With each new practitioner and treatment protocol that comes and goes, I continue to feel more and more frustrated. And though I have to be careful about too much Googling of words like "chronic daily cervicogenic headache, whiplash, etc... "(stumbling onto a forum where someone recounts their last twenty years in pain can bring tears to my eyes pretty instantaneously), I've been finding myself hungrier than ever for the answers that I can't seem to find. With all of the discussion around dural tension, sub-occipital congestion, and possible dysfunction with cerebral spinal fluid flow, it just seems to me like there's a missing piece of the puzzle. I mean, shit, there has to be some reason I'm not responding to anything we've tried.
As far as the pathology is concerned, I've learned that basilar invaginations can be both congenital and acquired and sure enough, can be associated with post-whiplash conditions. Today, Craig reached out to Dr. Dodick, my old neurologist at Mayo Clinic. We're thinking it may be a good idea to see him and hopefully get a referral to a neurosurgeon, as this would be more their territory. Hopefully, we'll hear back from him soon and will be able to move forward with that.
Until then, cheers to a quick getaway to one of my favorite places on earth.
(A throwback from Craig's surprise 40th helicopter ride last July!)
I forgot to mention in my last post that a few weeks back, Craig and I had a phone consultation with Dr. Amen, a well-renowned MD who specializes in psychiatry and nuclear brain imaging and founder of Amen Clinics, which are scattered throughout the states. Mark Verstegen had met him through the NFLPA and had generously made the introduction so we were pretty excited to have the opportunity to chat. (I'm telling you, this is a serious team effort). Basically, Craig and I were interested in learning whether he thought there was any value in getting a functional brain scan, in order to see if I was experiencing any sort of regional blood flow restriction. After a little back and forth, he didn't seem to think it would be a warranted diagnostic. He was in full support of me seeing a cranial osteopath, though, and stressed the importance of seeing the "right" one...which is what led us to Dr. Cisler in Tucson.
Now fast forward a bit. I finished my 8th NUCCA treatments with Dr. Martin on Friday. By my last session with him, he felt that my pelvic and cervical alignment had improved but was stumped as to why my pain hasn't budged. I believe his exact words were "you're my first failure" Hah...nice, thanks! He was a quirky dude, but definitely had my best interest at heart and I appreciate his honesty. In fact, he didn't charge me for the last 3 treatments because he felt bad that he hadn't scheduled them closer together from the start.
So, what are the next steps?
Tomorrow Craig, Charlie, and I head up to Sedona for some much needed R&R. I suppose I do get plenty of it, but Craig's been out straight at work these past few weeks shooting a 30hrs of content for a new EXOS certification that will be launching later this summer (which is going to kick ASS!) so we're more than ready to relax by the pool, get our red rock fix, and take our pup for a swim in the creek! Cannot wait. Thanks AGAIN to Mark and Amy!
Then on Thursday morning, we'll go back to Dr. Gailius (cranial osteopath at Midwestern University clinic) this for my second treatment. My first visit with him a few weeks ago was focused a bit more on discussion and evaluation. He felt some definite dural stiffness and lots of congestion/fluid in my sub occipital area...observations that have been made before by several different PTs/DOs and any consensus of opinion is a positive in my book. It's just a matter of figuring out HOW to fix that.
Many posts ago, I mentioned that a few doctors (including one of my PTs and a spinal surgeon) had noticed something interesting on my MRI. Basically, it looks there's a slight "kink" in my spinal cord, which you can actually see in the image below (I stuck a little arrow in there).
We were told this is called a Basilar Invagination, which occurs when top of the C2 vertebra migrates upward. It can cause narrowing of the foramen magnum (the opening in the skull where the spinal cord passes through to the brain). It also may press on the lower brainstem. No one has been sure exactly how significant (if at all) this could be. After all, who knows what each person's "normal" anatomy really looks like before an injury, right?
With each new practitioner and treatment protocol that comes and goes, I continue to feel more and more frustrated. And though I have to be careful about too much Googling of words like "chronic daily cervicogenic headache, whiplash, etc... "(stumbling onto a forum where someone recounts their last twenty years in pain can bring tears to my eyes pretty instantaneously), I've been finding myself hungrier than ever for the answers that I can't seem to find. With all of the discussion around dural tension, sub-occipital congestion, and possible dysfunction with cerebral spinal fluid flow, it just seems to me like there's a missing piece of the puzzle. I mean, shit, there has to be some reason I'm not responding to anything we've tried.
As far as the pathology is concerned, I've learned that basilar invaginations can be both congenital and acquired and sure enough, can be associated with post-whiplash conditions. Today, Craig reached out to Dr. Dodick, my old neurologist at Mayo Clinic. We're thinking it may be a good idea to see him and hopefully get a referral to a neurosurgeon, as this would be more their territory. Hopefully, we'll hear back from him soon and will be able to move forward with that.
Until then, cheers to a quick getaway to one of my favorite places on earth.
(A throwback from Craig's surprise 40th helicopter ride last July!)
Tuesday, June 17, 2014
Tucson for Cranial Osteopath Visit #1
Every now and then, I sneak a peak at my blog stats to check out page views and demographics. This morning it looks like I've had just over 10,000 views from 10 different countries, including the U.S., Australia, Germany, Canada, France, Japan, Brazil, Ireland, India, and the Dominican Republic since I started writing in October. I'm no expert in the blogosphere so maybe 10K isn't that many, but given that my story is seriously lacking in yummy recipes, DIY projects, fashion tips, or yoga photos (which I'll be the first to admit, all sounds just a bit more enticing than the chronicle of a 24/7 headache), I'll take it. If chronic pain (and it's ripple effect) touches an estimated 116 million people in the U.S. alone, it's a statistical certainty that at least someone who's stumbled upon my blog can relate (and hopefully, learn from) my journey through pain.
So, now for the update...
Last Friday was my fifth visit with Dr. Gerald Martin, the NUCCA chiropractor who's been working on realigning my C1 vertebra. He re-xrayed me to check the progress we've made over the past few weeks and was happy to see that I have in fact made some positive changes. Feeling discouraged and confused as to why those changes haven't translated to a pain decrease (oh right, didn't mention that I haven't felt any changes in pain), I asked him whether that was cause for concern. He assured me that since the slightest deviation in alignment (we're talking half a millimeter) is significant, it does make sense that I'm still in pain. He interpreted the imaging as confirmation that we're moving in the right direction. I've also experienced some nerve pain down my left arm over the past week or so, made worse by lateral neck flexion to the right. Not sure if this is a good or bad thing, but I've chose to interpret it as an indication of the new position of my atlas (why not?).
Logically, it makes sense to me (as so many treatment approaches have) but emotionally, it's a whole different story. When I arrive at my appointments pre or post workout, Dr. Martin will say things to me like, "You can work out with the headache you have now? I couldn't do that. I'd be laying down." I know his intent certainly isn't to evoke a mid-treatment breakdown (which, believe me, there are plenty of), but I can't help but tear up when he or anyone else says things like this. I mean...shit, what am I supposed to do...lie down on the couch all f-ing day, day after day? I can't imagine how physically and mentally worse I would feel if I didn't value and prioritize exercise...regardless of my pain levels. And maybe this isn't the healthiest mindset, but it's become so easy for me to push through any discomfort of working out in pain simply because I know the discomfort is temporary. As soon as the workout ends, it's over...whereas my headache is there whether I'm working out or not. Feeling like the pain I'm in isn't temporary is probably the worst feeling I've ever felt. So I guess the concept of discomfort in general is all relative...if that makes sense?
So, my plan is to keep up with the NUCCA treatments at least until the x-rays show that my atlas is where it needs to be, and then we'll re-evaluate how to proceed based on whether any changes in pain have been made.
You might remember from a few posts ago that the PT I saw in Newport Beach recommended we find a cranial osteopath. Cranial osteopathy is said to stimulate healing by using gentle hand pressure to manipulate the skeleton and connective tissues, especially the skull and sacrum. It's based on the (controversial) theory that the central nervous system, including the brain and spinal cord, has subtle, rhythmic pulsations that are vital to health and can be detected and modified. Manual D.O.s are sort of a dying breed in the U.S. Only about 5% of physicians here are doctors of osteopathy (DOs), and fewer than 10% of them rely on manipulation as a main method of treatment.
Since Craig and I are past the point of dialing the first practitioner to pop up in our Google search, it took a bit of time before we were able to get in to see one that we know carries a renowned reputation. Her name is Theresa Cisler, D.O. and she practices out of a small office in Tucson, AZ. Craig and I made the 2.5 hour drive down to see her yesterday for my first visit (don't worry, we were able to at least listen to the USA-Ghana game). As is the case with any initial appointment, we spent a good chunk of time rehashing the details of my bike accident and the last 3 years of treatment. Theresa is a very kind practitioner, and listened intently to us...well, mostly to Craig since he does most of the talking for me so I don't unravel completely (have I mentioned yet that this is a tear-inducing process for me? haha).
Based on everything she heard, interpretation of my imaging, and her physical evaluation, Dr. Cisler suspected that the source of my pain is related to my brain stem. She explained that stress bands can form on the dura (remembering that the dura mater is the outermost layer of the meninges which cover the brain and spinal cord and is composed of thick, dense, white, inelastic, fibrous connective tissue), which actually aligns with what several other PTs have felt. She said she felt like there was a blow to the base of my skull...perhaps from the bottom of my helmet during the whiplash motion of the wreck (though we'll never know for sure).
Dr. Cisler opted to spend yesterday's session performing more gentle work on my body. At my next session in a few weeks, she'll try a more specific and aggressive brain protocol. Because of how sick I got in response to one of my cranial sacral sessions back in the fall (the one that made us think I might have had a dural tear and cerebral spinal fluid leak) and because she is going out of town, she didn't want to risk me having an adverse reaction to yesterday's treatment and then not be available to help with it. She was also aligned with me continuing the NUCCA adjustments as planned.
So Craig and I will go back to Tucson in a few weeks and in between sessions with her, I'll see another manual D.O. here in Phoenix, Dr. Gailius at Midwestern University. Dr. Cisler also advised I start taking oral Arnica for 3-5 days post-treatment (a homeopathic anti-inflammatory).
So...yeah. It's probably time for me to post a photo of Charlie right? Hey, gotta give the readers what they want ;)
(Convinced that she sleeps that way just to give Craig and I an extra reason to laugh every night.)
So, now for the update...
Last Friday was my fifth visit with Dr. Gerald Martin, the NUCCA chiropractor who's been working on realigning my C1 vertebra. He re-xrayed me to check the progress we've made over the past few weeks and was happy to see that I have in fact made some positive changes. Feeling discouraged and confused as to why those changes haven't translated to a pain decrease (oh right, didn't mention that I haven't felt any changes in pain), I asked him whether that was cause for concern. He assured me that since the slightest deviation in alignment (we're talking half a millimeter) is significant, it does make sense that I'm still in pain. He interpreted the imaging as confirmation that we're moving in the right direction. I've also experienced some nerve pain down my left arm over the past week or so, made worse by lateral neck flexion to the right. Not sure if this is a good or bad thing, but I've chose to interpret it as an indication of the new position of my atlas (why not?).
Logically, it makes sense to me (as so many treatment approaches have) but emotionally, it's a whole different story. When I arrive at my appointments pre or post workout, Dr. Martin will say things to me like, "You can work out with the headache you have now? I couldn't do that. I'd be laying down." I know his intent certainly isn't to evoke a mid-treatment breakdown (which, believe me, there are plenty of), but I can't help but tear up when he or anyone else says things like this. I mean...shit, what am I supposed to do...lie down on the couch all f-ing day, day after day? I can't imagine how physically and mentally worse I would feel if I didn't value and prioritize exercise...regardless of my pain levels. And maybe this isn't the healthiest mindset, but it's become so easy for me to push through any discomfort of working out in pain simply because I know the discomfort is temporary. As soon as the workout ends, it's over...whereas my headache is there whether I'm working out or not. Feeling like the pain I'm in isn't temporary is probably the worst feeling I've ever felt. So I guess the concept of discomfort in general is all relative...if that makes sense?
So, my plan is to keep up with the NUCCA treatments at least until the x-rays show that my atlas is where it needs to be, and then we'll re-evaluate how to proceed based on whether any changes in pain have been made.
You might remember from a few posts ago that the PT I saw in Newport Beach recommended we find a cranial osteopath. Cranial osteopathy is said to stimulate healing by using gentle hand pressure to manipulate the skeleton and connective tissues, especially the skull and sacrum. It's based on the (controversial) theory that the central nervous system, including the brain and spinal cord, has subtle, rhythmic pulsations that are vital to health and can be detected and modified. Manual D.O.s are sort of a dying breed in the U.S. Only about 5% of physicians here are doctors of osteopathy (DOs), and fewer than 10% of them rely on manipulation as a main method of treatment.
Since Craig and I are past the point of dialing the first practitioner to pop up in our Google search, it took a bit of time before we were able to get in to see one that we know carries a renowned reputation. Her name is Theresa Cisler, D.O. and she practices out of a small office in Tucson, AZ. Craig and I made the 2.5 hour drive down to see her yesterday for my first visit (don't worry, we were able to at least listen to the USA-Ghana game). As is the case with any initial appointment, we spent a good chunk of time rehashing the details of my bike accident and the last 3 years of treatment. Theresa is a very kind practitioner, and listened intently to us...well, mostly to Craig since he does most of the talking for me so I don't unravel completely (have I mentioned yet that this is a tear-inducing process for me? haha).
Based on everything she heard, interpretation of my imaging, and her physical evaluation, Dr. Cisler suspected that the source of my pain is related to my brain stem. She explained that stress bands can form on the dura (remembering that the dura mater is the outermost layer of the meninges which cover the brain and spinal cord and is composed of thick, dense, white, inelastic, fibrous connective tissue), which actually aligns with what several other PTs have felt. She said she felt like there was a blow to the base of my skull...perhaps from the bottom of my helmet during the whiplash motion of the wreck (though we'll never know for sure).
Dr. Cisler opted to spend yesterday's session performing more gentle work on my body. At my next session in a few weeks, she'll try a more specific and aggressive brain protocol. Because of how sick I got in response to one of my cranial sacral sessions back in the fall (the one that made us think I might have had a dural tear and cerebral spinal fluid leak) and because she is going out of town, she didn't want to risk me having an adverse reaction to yesterday's treatment and then not be available to help with it. She was also aligned with me continuing the NUCCA adjustments as planned.
So Craig and I will go back to Tucson in a few weeks and in between sessions with her, I'll see another manual D.O. here in Phoenix, Dr. Gailius at Midwestern University. Dr. Cisler also advised I start taking oral Arnica for 3-5 days post-treatment (a homeopathic anti-inflammatory).
So...yeah. It's probably time for me to post a photo of Charlie right? Hey, gotta give the readers what they want ;)
(Convinced that she sleeps that way just to give Craig and I an extra reason to laugh every night.)
Monday, June 2, 2014
NUCCA
Here are some updates from my last post a few weeks ago, starting with a more detailed summary of my treatments with Gail Wetzler, PT. This is the note that she sent to my PT here in AZ, Veronika Campbell.
While she was here, I took the time to look at her Lateral Flexion moving x-rays. If you have not seen the dysfunction in the movement pattern, please take a moment to do this. I showed Craig the total skip in movement patterns. Loss of inhibition? Ligamentous instability?
She has quit a bit of pain that has been locked into her spinal/peripheral system and gives me the impression of some biochemical changes happening now. It took a couple of sessions to get through the Lines of Tension that the right side of her body was suggesting as primary. The (R) fascial system has been pulling at the cervical region and cranium in an inferior direction all this time. The right arm and pleura was involved. The (L) cervical and cranial system had been pulled superior.
Her body could not differentiate movement in the cranium from that in her sacrum. She could not initiate a movement from either end of the spine easily and T3 T4 T5 displayed pericardial protection during this movements.
We could finally find the (R) kidney fascia > liver, when elevated, inhibits the inferior pull on the (R) Cerv. fascia. When this started to "wake up" the dysfunctional pattern, I could really get into the anterior neck musculature and the Dura. I found C1 Rot (R) and translated (L) on C2. C2 on C3 same. (L) Mandible was pulled superior promoting trigeminal/dural restrictions.
On her last day here, I felt the anterior neck muscle/fascia/joint/vascular component to be extremely important. I am suspicious of inadequate venous drainage at times causing pressure changes, as well as fascial restrictions along the dural membrane and cranial nerves. Also in this anatomy is her superior, middle and inferior cervical plexus - connecting to cranium as well.
After listening to Katie and listening to her body, I agree with Katie that the headaches seem to be steeming from the upper cervical region. But this includes nerve buds, plexuses, sinus, vascular and a pressure system that is not finding homeostasis and a loss of viscoelasticity within the cranium.
Recommendations:
-Cranial Osteopath to get their opinion
-Dr. Jane Xenos or another person in Arizona that can do cervical injections (homeopathic) and immediately have a follow up visit with you Veronika. Anterior neck (L) > (R) for injections and to keep within the musculature at this time.
Keep up the good work Veronika. Suggestions:
-Test 4 parts of the cranium with compression/decompression listening. Is the primary dysfunction in the cranial vault, the base of the cranium, the facial structures/teeth or in the masticatory system.
-Do suboccipital traction listening
-You may have to treat the container more before the contents
-Work with dural dominance - inhalation brings on pressure more in ant dura or post dura
-Regain neural viscoelasticity
-Regain brain viscoelasticity
I'm still in the process of getting scheduled with a cranial osteopath here, but here are a few additional updates from my end...
1. After 3.5 weeks of taking Topamax and Cymbalta post-visit with Dr. Paicius in Newport Beach, I discontinued the meds. My pain has remain unchanged and the initial plan was to only try it for a few weeks. I have to say, I'm looking forward to not dealing with the drowsiness that came along with it. I've never been a huge napper, but in the past few weeks have been absolutely wiped out during the day and been taking naps that sometimes last for up to 3 hours at a time.
2. We tried out a new modality at EXOS, a portable ultrasound called SAM. The goal is to help fight inflammation and relieve pain by increasing circulation and flexibility by pushing/pulling nutrients through cellular structures, facilitating cellular waste removal, increasing vascularization, stimulate gene expression of fibroblasts, promote cell proliferation and migration and matrix formation, and decrease pain by inducing non-specific and cell-mediated release of secretory proteins. We figured that since the visceral work I had done in CA, it was worth a shot. I started by wearing the device for an hour per day, on the right side of my neck where Gail felt the compression was, and worked my way up to four hours per day. We THOUGHT we were on to something after one or two days of slightly less pain, but couldn't seem to recreate it.
3. A while back, a PT who I was working with had told Craig and I about a specific type of upper cervical chiropractic treatment, referred to as NUCCA (National Upper Cervical Chiropractic Association).
"This gentle, non-invasive technique was developed more than forty years ago to create a radical new way of healing that can help restore body balance and perfect health. The focus of the NUCCA work is the relationship between the upper cervical spine (neck) and its influence on the central nervous system and brain stem function. It is this relationship that affects every aspect of human function from the feeling sensations in your fingers to regulating hormones, controlling movement, and providing the ability to hear, see, think, and breathe."
We found a practitioner here in Phoenix, Dr. Gerald Martin (who was also recommended to us by Dr. Keith Denton in Michigan - the "birthplace" of NUCCA). On Friday morning, I had my first appointment with Dr. Martin. He explained that after an initial x-ray, he would be able to tell us whether or not he could help me. So we did the x-ray, and sure enough, the displacement of my atlas vertebra (atlas = C1) was clear. He whipped out his trusty compass and spent a chunk of time calculating the exact measurements on the imaging before beginning the adjustment.
I'll give a little more info about the atlas itself, since it's really the entire focus of this treatment...
The atlas vertebra is the top most bone in the spinal column, and is located where all the nerves ascend and descend to and from the brain. So when it's displaced, the nerves at the atlas level are stretched, which cause a shortened leg (which I had), a distorted pelvis (which I had), a spinal imbalance (which I had). Basically, when your body isn't aligned in the true vertical and horizontal planes, it will naturally try to compensate for the imbalance (result being pain/discomfort).
The imbalance and distortion are the result of stretched nerves which overload the nerve pathways, causing large anti-gravity muscles (extensors) to contract (i.e. spasticity). The spine and pelvis twist and tilt from normal position and one leg shortens.
The solution is obviously to correct the position of the atlas, which is adjusted according to the formula that's computed from the analysis of the x-rays. The adjustment itself it's a traditional chiropractic adjustment but instead consists of the doc applying slight but controlled pressure through the atlas with their hand. Afterwards, we re x-rayed and the correction was pretty clear. I'll go back this afternoon for him to check my pelvic/leg alignment again and he'll be able to tell from that whether or not the correction held from Friday. If it did, I'll leave and we'll try again in a few days and if it didn't stick, we'll do another adjustment.
So that's the story! I know there are still plenty more things to try and that we won't stop until we find what works, but it can still feel incredibly overwhelming to think that just next month will be the 3 year mark of my bike wreck that set it all off. It's dangerously easy for me to wonder if three years will turn into four, or six, or more and wonder how I'll be able to re-establish a career, have a family, or accomplish all of the things that I want to in life (see? slippery thought process). So my greatest challenge right now is keeping a positive mindset and believing that there is a much, much brighter future ahead of me.
While she was here, I took the time to look at her Lateral Flexion moving x-rays. If you have not seen the dysfunction in the movement pattern, please take a moment to do this. I showed Craig the total skip in movement patterns. Loss of inhibition? Ligamentous instability?
She has quit a bit of pain that has been locked into her spinal/peripheral system and gives me the impression of some biochemical changes happening now. It took a couple of sessions to get through the Lines of Tension that the right side of her body was suggesting as primary. The (R) fascial system has been pulling at the cervical region and cranium in an inferior direction all this time. The right arm and pleura was involved. The (L) cervical and cranial system had been pulled superior.
Her body could not differentiate movement in the cranium from that in her sacrum. She could not initiate a movement from either end of the spine easily and T3 T4 T5 displayed pericardial protection during this movements.
We could finally find the (R) kidney fascia > liver, when elevated, inhibits the inferior pull on the (R) Cerv. fascia. When this started to "wake up" the dysfunctional pattern, I could really get into the anterior neck musculature and the Dura. I found C1 Rot (R) and translated (L) on C2. C2 on C3 same. (L) Mandible was pulled superior promoting trigeminal/dural restrictions.
On her last day here, I felt the anterior neck muscle/fascia/joint/vascular component to be extremely important. I am suspicious of inadequate venous drainage at times causing pressure changes, as well as fascial restrictions along the dural membrane and cranial nerves. Also in this anatomy is her superior, middle and inferior cervical plexus - connecting to cranium as well.
After listening to Katie and listening to her body, I agree with Katie that the headaches seem to be steeming from the upper cervical region. But this includes nerve buds, plexuses, sinus, vascular and a pressure system that is not finding homeostasis and a loss of viscoelasticity within the cranium.
Recommendations:
-Cranial Osteopath to get their opinion
-Dr. Jane Xenos or another person in Arizona that can do cervical injections (homeopathic) and immediately have a follow up visit with you Veronika. Anterior neck (L) > (R) for injections and to keep within the musculature at this time.
Keep up the good work Veronika. Suggestions:
-Test 4 parts of the cranium with compression/decompression listening. Is the primary dysfunction in the cranial vault, the base of the cranium, the facial structures/teeth or in the masticatory system.
-Do suboccipital traction listening
-You may have to treat the container more before the contents
-Work with dural dominance - inhalation brings on pressure more in ant dura or post dura
-Regain neural viscoelasticity
-Regain brain viscoelasticity
I'm still in the process of getting scheduled with a cranial osteopath here, but here are a few additional updates from my end...
1. After 3.5 weeks of taking Topamax and Cymbalta post-visit with Dr. Paicius in Newport Beach, I discontinued the meds. My pain has remain unchanged and the initial plan was to only try it for a few weeks. I have to say, I'm looking forward to not dealing with the drowsiness that came along with it. I've never been a huge napper, but in the past few weeks have been absolutely wiped out during the day and been taking naps that sometimes last for up to 3 hours at a time.
2. We tried out a new modality at EXOS, a portable ultrasound called SAM. The goal is to help fight inflammation and relieve pain by increasing circulation and flexibility by pushing/pulling nutrients through cellular structures, facilitating cellular waste removal, increasing vascularization, stimulate gene expression of fibroblasts, promote cell proliferation and migration and matrix formation, and decrease pain by inducing non-specific and cell-mediated release of secretory proteins. We figured that since the visceral work I had done in CA, it was worth a shot. I started by wearing the device for an hour per day, on the right side of my neck where Gail felt the compression was, and worked my way up to four hours per day. We THOUGHT we were on to something after one or two days of slightly less pain, but couldn't seem to recreate it.
3. A while back, a PT who I was working with had told Craig and I about a specific type of upper cervical chiropractic treatment, referred to as NUCCA (National Upper Cervical Chiropractic Association).
"This gentle, non-invasive technique was developed more than forty years ago to create a radical new way of healing that can help restore body balance and perfect health. The focus of the NUCCA work is the relationship between the upper cervical spine (neck) and its influence on the central nervous system and brain stem function. It is this relationship that affects every aspect of human function from the feeling sensations in your fingers to regulating hormones, controlling movement, and providing the ability to hear, see, think, and breathe."
We found a practitioner here in Phoenix, Dr. Gerald Martin (who was also recommended to us by Dr. Keith Denton in Michigan - the "birthplace" of NUCCA). On Friday morning, I had my first appointment with Dr. Martin. He explained that after an initial x-ray, he would be able to tell us whether or not he could help me. So we did the x-ray, and sure enough, the displacement of my atlas vertebra (atlas = C1) was clear. He whipped out his trusty compass and spent a chunk of time calculating the exact measurements on the imaging before beginning the adjustment.
I'll give a little more info about the atlas itself, since it's really the entire focus of this treatment...
The atlas vertebra is the top most bone in the spinal column, and is located where all the nerves ascend and descend to and from the brain. So when it's displaced, the nerves at the atlas level are stretched, which cause a shortened leg (which I had), a distorted pelvis (which I had), a spinal imbalance (which I had). Basically, when your body isn't aligned in the true vertical and horizontal planes, it will naturally try to compensate for the imbalance (result being pain/discomfort).
The imbalance and distortion are the result of stretched nerves which overload the nerve pathways, causing large anti-gravity muscles (extensors) to contract (i.e. spasticity). The spine and pelvis twist and tilt from normal position and one leg shortens.
The solution is obviously to correct the position of the atlas, which is adjusted according to the formula that's computed from the analysis of the x-rays. The adjustment itself it's a traditional chiropractic adjustment but instead consists of the doc applying slight but controlled pressure through the atlas with their hand. Afterwards, we re x-rayed and the correction was pretty clear. I'll go back this afternoon for him to check my pelvic/leg alignment again and he'll be able to tell from that whether or not the correction held from Friday. If it did, I'll leave and we'll try again in a few days and if it didn't stick, we'll do another adjustment.
So that's the story! I know there are still plenty more things to try and that we won't stop until we find what works, but it can still feel incredibly overwhelming to think that just next month will be the 3 year mark of my bike wreck that set it all off. It's dangerously easy for me to wonder if three years will turn into four, or six, or more and wonder how I'll be able to re-establish a career, have a family, or accomplish all of the things that I want to in life (see? slippery thought process). So my greatest challenge right now is keeping a positive mindset and believing that there is a much, much brighter future ahead of me.
Sunday, May 18, 2014
CA update
Craig and I returned on Wednesday from our 10 day road trip to sunny So Cal. We stayed in Newport Beach, where I was scheduled for five physical therapy sessions with integrative manual therapist, Gail Wetzler, and one tentative appointment with a new pain doctor, Dr. Paicius at Newport Beach Headache & Pain. To recap, the goal of getting in to see Dr. Paicius was to get a second (or maybe fourth?) opinion on the following...
1. Dorsal root ganglion blocks at C1/C2 provided some relief the following day (for part of the day) on the left side only so Dr. McJunkin wanted to do a DRG ablation.
2. Dr. Crutchfield said risk of doing DRG ablation outweighs possible benefit and didn't think it's a good idea. Occipital injections also didn't work with Dr. Crutchfield so he recommended finding someone that does steroid injections at C1/C2.
3. Dr. Dodick at Mayo points us in direction of doc at UCLA who is the only one he knows that works that high in cervical spine. Doc at UCLA says absolutely not the right course of treatment.
Clearly, we welcomed another opinion so we're pretty happy when Dr. Paicius' office called to come in on our second day in town. He listened carefully to everything I'd been through and been told and gave us his pretty clear cut recommendation.
- The "chronic pain" component of what I'm experiencing needs to be addressed with medication. This means not doing the DRG block, due to the risk of permanent nerve damage that could make the pain I'm experiencing now seem like a walk in the park. It's important to understand that chronic pain is unique in that it literally changes the brain...functionally, structurally, and chemically. It doesn't mean the pain stimulus isn't there anymore, but it doesn't necessarily need to be there anymore. This part isn't news to me, but this time seems like... what other choice do I have?
- I'll try two medications (Cymbalta and Topomax) for 3-4 weeks. If they're helpful (measured by 30-70% improvement), I'll continue taking them for 1 year. The idea of being on meds still freaks me out a little, but he really stressed how much safer they are than sticking needles into your upper cervical spine. I get it.
-If the medications don't work (had to ask), the only procedure he suggested pursuing is something called peripheral stimulation with electricity. This would consist of percutaneous placement of an electrode in the painful area of the head. After a trial of 2-5 days, the electrode is removed, and depending on the success, the electrode can be permanently implanted. Yikes...
So I've been on the medication now for about 10 days. So far, I haven't felt any decrease in pain...though I have experienced some negative (yet common) side effects like drowsiness, nausea, and loss of appetite since the scheduled boost in my daily dosage a few days ago. On Friday he told me to go back down to my original dose so I'm hoping those symptoms won't last.
And now an update on the PT front...
My first session with Gail was more of an evaluation, so I basically had four treatment sessions with her. I may add some more details in here once she sends us her notes but the gist of what she found was a pattern of adaptive shortening and compression on my right side, from my skull down to my sacrum. She felt a torsion through my skull (which Ron Hruska, PT at Postural Restoration Institute in Nebraska also thought a few months ago) and that this may be responsible for the dysfunction in my upper cervical spine. It would also explain the chronic lengthening of my left side (right shortens, left stretches) which is where my upper trap and neck muscles are in constant spasm yet unresponsive to all of the bodywork I've had.
Gail worked on opening and realigning my cranial sutures but by the end of my final session, I hadn't yet felt any changes. She recommended that along with Veronika using Gail's findings back in Phoenix to continue treatments, I also see a cranial osteopath from A.T. Still who may be better able to address the cranial issues. We also discussed the potential of coming back out to Newport Beach to try prolotherapy with a doctor that she knows who performs it under guidance (which not everyone does).
Despite the circumstances, Newport Beach is beautiful and certainly not a bad place to spend 10 days. Craig's time was split working, but we soaked up as much of our pseudo-vaca as possible. I walked every day on the beach, lounged by the pool, and even found a local Pilates studio to get my fix. We were able to visit with Craig's brother Matt and his husband Chris, who live in Hollywood, and met up with USMNT coach Jürgen Klinsmann for coffee (awesome guy).
So all in all, not the miracle trip that I was crossing my fingers for, but definitely a step forward. I would be lying if I said that I don't get incredibly discouraged but that's where this guy comes in to keep my head up and my eyes on the prize. When the idea of my headache ever going away feels out of reach, he tells me that I don't have to believe that it will..I just have to believe the he believes.
1. Dorsal root ganglion blocks at C1/C2 provided some relief the following day (for part of the day) on the left side only so Dr. McJunkin wanted to do a DRG ablation.
2. Dr. Crutchfield said risk of doing DRG ablation outweighs possible benefit and didn't think it's a good idea. Occipital injections also didn't work with Dr. Crutchfield so he recommended finding someone that does steroid injections at C1/C2.
3. Dr. Dodick at Mayo points us in direction of doc at UCLA who is the only one he knows that works that high in cervical spine. Doc at UCLA says absolutely not the right course of treatment.
Clearly, we welcomed another opinion so we're pretty happy when Dr. Paicius' office called to come in on our second day in town. He listened carefully to everything I'd been through and been told and gave us his pretty clear cut recommendation.
- The "chronic pain" component of what I'm experiencing needs to be addressed with medication. This means not doing the DRG block, due to the risk of permanent nerve damage that could make the pain I'm experiencing now seem like a walk in the park. It's important to understand that chronic pain is unique in that it literally changes the brain...functionally, structurally, and chemically. It doesn't mean the pain stimulus isn't there anymore, but it doesn't necessarily need to be there anymore. This part isn't news to me, but this time seems like... what other choice do I have?
- I'll try two medications (Cymbalta and Topomax) for 3-4 weeks. If they're helpful (measured by 30-70% improvement), I'll continue taking them for 1 year. The idea of being on meds still freaks me out a little, but he really stressed how much safer they are than sticking needles into your upper cervical spine. I get it.
-If the medications don't work (had to ask), the only procedure he suggested pursuing is something called peripheral stimulation with electricity. This would consist of percutaneous placement of an electrode in the painful area of the head. After a trial of 2-5 days, the electrode is removed, and depending on the success, the electrode can be permanently implanted. Yikes...
So I've been on the medication now for about 10 days. So far, I haven't felt any decrease in pain...though I have experienced some negative (yet common) side effects like drowsiness, nausea, and loss of appetite since the scheduled boost in my daily dosage a few days ago. On Friday he told me to go back down to my original dose so I'm hoping those symptoms won't last.
And now an update on the PT front...
My first session with Gail was more of an evaluation, so I basically had four treatment sessions with her. I may add some more details in here once she sends us her notes but the gist of what she found was a pattern of adaptive shortening and compression on my right side, from my skull down to my sacrum. She felt a torsion through my skull (which Ron Hruska, PT at Postural Restoration Institute in Nebraska also thought a few months ago) and that this may be responsible for the dysfunction in my upper cervical spine. It would also explain the chronic lengthening of my left side (right shortens, left stretches) which is where my upper trap and neck muscles are in constant spasm yet unresponsive to all of the bodywork I've had.
Gail worked on opening and realigning my cranial sutures but by the end of my final session, I hadn't yet felt any changes. She recommended that along with Veronika using Gail's findings back in Phoenix to continue treatments, I also see a cranial osteopath from A.T. Still who may be better able to address the cranial issues. We also discussed the potential of coming back out to Newport Beach to try prolotherapy with a doctor that she knows who performs it under guidance (which not everyone does).
Despite the circumstances, Newport Beach is beautiful and certainly not a bad place to spend 10 days. Craig's time was split working, but we soaked up as much of our pseudo-vaca as possible. I walked every day on the beach, lounged by the pool, and even found a local Pilates studio to get my fix. We were able to visit with Craig's brother Matt and his husband Chris, who live in Hollywood, and met up with USMNT coach Jürgen Klinsmann for coffee (awesome guy).
So all in all, not the miracle trip that I was crossing my fingers for, but definitely a step forward. I would be lying if I said that I don't get incredibly discouraged but that's where this guy comes in to keep my head up and my eyes on the prize. When the idea of my headache ever going away feels out of reach, he tells me that I don't have to believe that it will..I just have to believe the he believes.
Subscribe to:
Posts (Atom)