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!)

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.)

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.