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)

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.