Neurosurgeon, Cryosauna, Magnesium IV Therapy

This past Wednesday I had an appointment with neurosurgeon, Dr. Willis, to review my films and get his take on the "kink" in my spinal cord at the C2/C3 level. These kinds of visits can be tough for me, because even though I'm asking a specialist a very specific question, I still have to provide context by painting the bigger picture. As a specialist, they're then going to absorb and respond to my "story" through the lens of their own expertise (naturally). Bur depending on that particular specialist, their ability (or inability) to communicate with me, the patient, in a clear yet compassionate, empathetic, and non-egotistical way can determine just how hopeful or hopeless I feel when I walk out their door.

For example, when I ask an upper cervical chiropractor why I'm not responding to treatment and is there any "next step" he recommends to other complex and unresponsive patients and he says "No, this is really the only treatment that targets this issue" when he could have said, "Personally, I don't have experience sending patients to someone else for this particular upper cervical issue but it doesn't mean another solution doesn't exist".

Another example: The neurosurgeon telling me that he wasn't concerned at all about my MRI, that he's confident the "kink" in my spinal cord is congenital and completely unrelated to my bike accident (which was exactly what we were hoping he'd say), and because it's not a "dangerous" situation requiring his intervention, it's going to just be a matter of managing the symptoms and that sometimes there's really no cure for whiplash-induced pain...when he COULD have said something like, "I'm not concerned at all about your MRI and I'm confident the "kink" in your spinal cord is congenital and completely unrelated to your bike accident. I can't really speak to what's going on musculoskeletally since that's really not in the realm of my expertise but now you will be able to pursue the treatment options that are out there with confidence that you don't have a basilar invagination."

See my point? It's okay for a doctor to tell a patient that they just don't know the answer or that the've emptied out their bag of tricks but for them to imply (or bluntly state) that the patient has exhausted their options is a blow to their hope. Without knowing the patient's existing supply of hope, it's insensitive at best, and destructive at worst. I'm really not trying to complain or get caught up in the semantics of conversation, rather, convey a lesson this entire experience has forced me to learn: the message you deliver to someone matters. HOW you deliver the message matters...sometimes just as much.

Luckily for me, when I start to completely unravel after an appointment like last Wednesday's, I have Craig there to wipe away my tears and then pick up the plastic spine model with the metal disc implant off his desk and say, "See this, Katie? THIS is what he does. THIS is what he learned in school. THIS is what he knows everything about. We had to ask him one question and we got the answer we needed and nothing else he says matters. That's why we're going to Austin."

So back to the update. Dr. Willis doesn't think I have any significant instability and doesn't think the x-ray images he saw were pathological. He didn't see any issues at my occipital cervical junction and really didn't know what to think of my digital motion x-ray since he's never looked at one before. He did write me an order for a new static C-spine flexion/extension x-ray, though, which I had done this morning.

Let's see, a few more updates...

I stopped taking Celebrex after about a week, per Dr. Dodick's recommendation (it wasn't helping). I'm scheduled to see him again in early February to reconvene after my PT week in January.

Last week, I was experiencing a string of abnormally high pain days. We were also experiencing some abnormal stormy weather here in Phoenix, and Craig and I think we figured out a correlation between the low barometric pressure and my pain spikes. We're not really if and how the low pressure could possibly be affecting my cerebrospinal fluid flow, or perhaps just the inflammation itself, but this is as least one more piece of data to carry with us to Austin.

Since we know there is some inflammation involved and because my neck and upper back muscles have been ridiculously tense and knotty lately (which I KNOW is connected to my C-spine and head) and because I've been completely unresponsive to anti-inflammatories and manual therapy, we decided it might be a good idea to revisit a modality I initially tried out about a year ago, Cryotherapy. The naturopath that I see, Dr. Popiel, has a cryosauna at his office. The plan is to try a few sessions as a way to hopefully get my pain to a more manageable level in these next few weeks. I had one cryotherapy session last Friday, one this morning, and another one tomorrow and will pick it up again next week. After talking to Dr. Popiel this morning, we also decided I would re-try Magnesium IV therapy (starting tomorrow) at a much higher dose than I tried last year. Magnesium IV therapy is often used in the treatment of pain, because in addition to helping cells make energy, enabling various chemical pumps to work, and stabilizing membranes, Magnesium also helps muscles to relax.

Merry Christmas, and see you next year. 2015, I hope you're ready because I'm comin' for ya!

Austin-bound

Well, damn. I was really hoping that last update was the game-changer treatment. But after six weeks of seeing Dr. Trombetta three times per week, here I am...headache going strong as ever and patience running thin. On a positive note, I do still feel 100% confident that we've shed light on the source of my head pain (upper cervical dysfunction), which is a lot more than I could have said a year ago this time.

After experiencing nothing but consistent pain spikes, I decided to stop the atlas-orthogonal treatments a few weeks ago. Along with my "F***-this" attitude (hey, just being honest), this also brought an end to the exercise/postural modification recommendations I'd been adhering to over these last few months. Physiologically, could a return to lifting and mountain biking be putting my spine in a less-than-desirable position for healing? Maybe...probably. But the reality is, working out has proven to be the most effective way for me to deal with the mental agony, frustration, and fear that comes along with unrelenting pain. If my headache had improved over the last two months, I would be motivated beyond belief to stay off my bike and out the gym...but it hasn't, so for know, I'm putting logic on the back burner and doing what I need to do to keep my head above water. And side note: After only a week of my return to lifting, I've finally started sleeping through the night...something than my pain has made difficult to accomplish, especially this fall. If that isn't proof of my body's positive hormonal response to resistance training, right?

So is there a next step? Thanks to Craig, there always is. Dr. Dodick (my neurologist at Mayo) recently put us in touch with a physical therapist in Austin, TX, Mark Strickland. Mark specializes in upper cervical and temporomandibular joint disorders and was one of the first certified Craniomandibular Therapists (CFC) in the U.S. and currently one of 24 certified Craniomandibular Therapists (CCTT) in the world. Dr. Dodick, who's also director of the Sport Neurology and Concussion Program at Mayo Clinic and highly involved in concussion-prevention research, discovered who Mark was after learning that pro football players with upper cervical/headache injuries were flocking to his clinic in Texas.

We sent over my films for Mark to review, including my digital motion x-ray, MRI, and 6 c-spine x-rays. He told us that he'd know right away if what he saw warranted us flying out to see him for treatment. Craig and I were both super encouraged to hear his interpretation of the films: "looks like a laterally subluxed Atlas with a right rotated axis...wow! OUCH" because it's one more puzzle piece that fits...The AO treatment was, after all, only targeting my subluxed Atlas, but if my axis (C2) is rotated, how realistic is it that I'd find relief unless that too was corrected?

I'm scheduled to see Mark in Austin on January 12, which means I'm fully embracing just how quickly this time of year seems to "fly by". The plan is to see him five days in a row, and then we'll go from there. In the meantime, Dr. Dodick wrote me a prescription for a new medication, Celebrex, just to see if it can help me manage my pain between now and then. This is just a more powerful anti-inflammatory (which means no shitty side-effects like all of the other migraine and pain meds I've tried), so certainly worth a shot.