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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!)

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