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Sunday, February 21, 2016

14 weeks post-op update

I think I've had a new entry browser open on my computer for at least 3.5 weeks now, putting off what feels to me like (though what not necessarily is) a redundant update of my post-surgical progress. As always, when I step back for a minute, I realize that much progress has been made, even if I'm not right where I want to be just yet.

So, in a nutshell...

I still have my 24-7 headache. I have some days that feel worse than my normal headache, some days that feel the same, and some days that feel better than average, but overall, I am trending positive. I'm making progress in my rehab and have every reason to believe that progress should start translating to less pain soon.

Here's the story behind those few sentences that have pretty much become my go-to response to anyone who asks me how I'm doing. At face value, I realize they may sound slightly delusional.

I started weekly PT visits with Jeff Beran in mid-January. I was still in my neck brace for the first month of rehab with him, which meant we were somewhat limited in what we could do from a movement perspective, but still had plenty to work on. Though it's progressing every week, the primary goal of my rehab (aside from the obvious regaining of mobility and strength) has been to re-establish proper movement patterns. By doing so, we're able to help decompress my spine and surrounding fascia, allowing it to move better and not hinge at particular fulcrum points or compress nerves that cause additional pain. To anyone reading this who's dealing with a C1/C2 instability with a tonsillar ectopia and chronic headaches: if you're considering surgery, you NEED to realize that the outcome will be just as dependent on your commitment to (the right kind of) therapy as it is to what happens in the operating room.

When people ask me if the surgery "worked", my answer is: Yes, it worked to fuse my C1 to C2 and remove a piece of my skull to help decompress my spinal cord. But getting rid of my headache is like building a house. The surgery was the foundation that needed to be built in order for everything else to be possible, but now I have a house to build. And that's a process that takes a whole lot of work.

Back to my PT: Some of the very first exercises I was doing, even before rotating, flexing, or extending my spine, looked like this:

Eventually, we started incorporating some light range of motion exercises (while still in the brace)...

Though nothing miraculous was happening from one day to the next, I had started to feel like a shift was occurring. Lower pain days were becoming more frequent - even multiple days strung together in one week. Waking up in less pain than I was used to started to feel less like a fluke and more like a trend, which in itself felt like a mini-miracle. I was still having some rough days, but overall, finally felt like perhaps I finally was moving in the right direction. On January 29, I sent Craig this message at work. It was the first time I had felt hope that didn't come just from trusting someone else's, but from what I felt in my own body. It's hard to put into words what that feels like, but I'd say his first response sums it up well.

When it comes to maintaining hope, I don't think my expectations are unreasonably high. I just need is a little positive feedback. I can deal with 1 stepforward, 0.9 steps backward. When your pain hasn't budged or only gotten worse in the last 4 years, 0.1 feels like an exponential leap in the right direction, which is why despite some rough patches here and there, I'm feeling more optimistic now than I ever have.

As critical as the neck brace was for the healing process, it was becoming painstakingly obvious that forced immobility was a roadblock to my pain progress. Basically, the collar was removing the the requirement for my neck to actively stabilize my head. Immobility creates weakness, which leads to tightness and guarding, which causes pain. So as grateful as I was for the brace allowing my fusion to heal and laying the foundation for my road to recovery, I welcomed that 12-week post op date when I could take it off with open arms. If I count the 6 weeks I spent in a hard collar earlier this fall while undergoing regenerative ligament treatment (prolotherapy and PRP) with Dr. Hauser, I had spent 4.5 out of the last 6 months in a collar. I was more than ready to be free when February 8th rolled around and it was time to shed the brace. It also happened to be my 28th birthday, which made for a pretty kickass gift from the universe.

I took my brace off that morning and enjoyed a solid 8 hours free from medical attention. Then around 5pm, I sliced my hand open on an effing vegetable mandolin while making dinner. Eight stitches later and all Craig and I could do was shake our heads and laugh at the irony. Such is life, eh?

As I sat waiting my turn in the urgent care waiting room though, I couldn't help but have a flashback to last summer's vacation (we'll use the word vacation lightly): sitting in the bustling ER of Mass General Hospital with kidney stones and a soon-to-be blood infection, in some of the worst pain of my life that wasn't due to the famously intolerable flank pain but a rebound headache I had developed from a pain killer that I had been given for the stones. It was like my normal headache on steroids and with every minute that passed, I became more convinced that my headache was, in fact, trying to kill me. So as I sat in urgent care last week, with a blood-soaked dish towel wrapped around a hand that was responsible for making my kitchen look like rather gruesome crime scene just 30 minutes prior, that feeling of panic and despair hit me again. My head hurts worse than my hand right now. They'll stitch up my hand. They'll fix the problem. It'll be good as new in a few days, but my head will still hurt. 

As big a milestone as removing my neck brace was, I learned over the next few days that going cold turkey wasn't my wisest move. So after a PT session that Wed. evening, I decided to make a more gradual transition out of it. Now, I put it back on for a few hours each day (especially if I'm working on the computer) just to give my newly-working-again neck muscles a break. Holding up a 10-12 lb head all day is no joke. 

Right now, I'm still seeing Jeff at least once per week and working on my rehab at home and in the gym. I've also been seeing Veronika for visceral work about once every two weeks. Just in the last few weeks, I've made some major progress with my range of motion. I've pretty much regained full flexion, and my rotation improves every day. It's been a lot easier to turn my head to the left, but my rotation to the right has increased quite a bit since February 8. In the video below, which was taken last week, you can see where I'm at with my movement. The reason that I push my head into my hands when I go into extension is because I get some pretty significant discomfort when I extend my head back on its own, but as soon as I give it some proprioceptive feedback, the pinching sensation totally disappears. It's kind of trippy, but actually makes a lot of sense.

We started playing around with this a little in PT this week and found that I can make the extension-induced discomfort disappear just by activating other muscles (with a cable pull-down shown here), which changes the neural input to my shoulder and allows for more segmental movement through my spine.

What's going on at that level of my spine (C6-C6 area) also explains the chronic tightness through my shoulder blades that I've always felt has been connected to my headache but that I've never been able to resolve despite all of the soft-tissue work I've undergone: the long thoracic nerve, which arises from three spinal nerve roots at C5, C6, and C7, can cause pain several different muscles, including those between the shoulder blades like the rhomboids. This is a good visual to check out

So, that's where I'm at now. I'm taking each day at a time...finding hope in every better day I have and using that to carry me through the tougher days that require just a little more (and sometimes a lot more) patience. I've had an unusually painful last week and a half, but I think I've had a sinus infection on top of everything, which has likely added an extra layer of pain to my headache. The positive is that as more times goes on, I'm able to do more in physical therapy, which should only help me gain more traction. In the last week or so, Jeff's started scraping my and dry needling closer to my incisions (in addition to using the cold laser), which all help to break up scar tissue that's been keeping everything so bound down.

This week, I also have a massage with a new soft-tissue therapist, new x-rays scheduled to ensure everything's still healing like it should be, and a float-therapy session scheduled (to hopefully help reset my nervous system, but if nothing else, just relax).

More to come soon.


  1. Hi Katie,

    I came across your blog while researching treatment options, and just wanted to tell you how much it meant to read your story.

    I have C1-C2 problems as well, after a car accident, and have tried it all, including NUCCA, atlas orthogonal, prolotherapy, lydacaine/ketamine infusions, pain meds etc. Now my doctor has recommended getting an upright MRI so this is a step in the right direction I hope, towards at least sorting out what's going on in there. So hard to explain to anyone who hasn't been going through this what it feels like, so just wanted to let you know how much I appreciated reading your posts. I would love to hear how you feel you're doing since the surgery, and I hope that it's helping you see some progress. Dr. Franck was one of the specialists I'd been looking at - not sure if you'd be willing to let me know a bit more about your opinion of how you feel it has helped or not? If so, I could give you my email address.

    I'm not sure how your headaches are doing, and I'm sure you've already exhausted the full gamut of pain meds, but not sure if you've tried pregabalin (Lyrica)? It's the only med that has done anything to help with the severe headache pain level at all for me. I had tried anti-inflamatories, hydromorphone, tramadol, muscle relaxants etc. with no impact. My pain specialist recommended pregabilin because it's a nerve pain medication. I hate taking meds as well, and am a total health nut, so did not take this decision lightly, but it has made some difference for me. I started with a very small dose, and slowly increased over weeks so that my body could adjust. It took a while to get over the sleepiness it gives me, but the side effects have lessened considerably over time and it is still the only thing that helps with the pain level. I had also tried gabapentin, which is also for nerve pain, but it was less effective and I had to take higher does (i.e., more side effects), so the pregabalin worked much better for me.

    Thanks for sharing your story, and hoping you're seeing some progress on this journey.

    Katie (from Canada)

    1. Hi Katie - thanks so much for your comment and sharing some of your story...I'd love to chat more over email. What's your address?

    2. (or if you don't want to leave it here, mine is KathrynLdalton@gmail.com)

  2. Hi Katie,
    Thanks so much for this, will write you back at your email :)