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Thursday, November 17, 2016

C1/C2 fusion & craniectomy: 1 year later + headache update

Today is the one year mark of my C1/C2 fusion and craniectomy and I figured I owed it to myself to sit down and write. It's not something I've felt like doing in recent months, despite how all-consuming my headache has been. Or maybe that's why. My enthusiasm to hash out the details of my day-to-day struggle can best be summed up by a phone conversation I had with my friend a few days ago. He asked how I was feeling and I answered, without skipping a beat, "not very good, so tell me about this girl you're dating...." I guess the heavier the weight of my pain has felt, the less energy I have to spend talking about it. Feeling it has been enough. More than enough.

I never want to sound like I'm complaining about my pain, or projecting some kind of woe-is-me negativity, because despite the challenge I've been dealt, I know how many reasons I have to be thankful. There isn't a single day that goes by that I don't think about how different my chronic pain could be if I didn't have the support system and resources that I do or how just how many exponentially worse problems and forms of suffering exist. And despite how I feel physically, I've become increasingly thankful that I had the surgery a year ago. After talking to even more doctors, I've gained a greater appreciation for just how severe (life-threatening, had I gotten into even just a minor car accident) my cervical instability was.

Even all the gratitude and perspective in the world doesn't change how draining my headache has been, though. Drained is probably the best word to describe how I've felt these last few months. I remember telling Craig not too long ago during one of my all-too-frequent (sometimes daily) panic-induced-holy-shit-is-my-head-going-to-hurt-forever-how-am-I-going-to-live-like-this-I-don't-think-I-can-live-like-this sob fests that as much pain as I've been in over the last 4.5-5 years, it's never felt so hard. Like my resilience was just running dry. My sheer capacity to "deal with it" shrinking by the day.

And  the more I would tell myself that I just can't allow my headache to dominate my life, the more it rose to the challenge. The decision for Craig and I to get engaged and start planning our wedding was a really big deal for me. It meant that no matter how hard things are, we have to create the lives we want together, full steam ahead, no matter what. And then in September, I found myself sitting next to him in a rental car in a downtown Spokane, WA parking lot after a day of travel had pushed my headache over the edge. I felt like I was going to pass out from the pain and I just completely unraveled, crying on this shoulder harder than I maybe ever have. This is not how meeting your wedding photographer is supposed to happen. I know what you're thinking...typical bridezilla! Hah.

Because my headache is 24-7, I'm used to falling asleep and waking up with it, but there've been more and more mornings when I've gotten out of bed and just been so physically overwhelmed by my pain levels that I can't help but feel like I don't even have a chance at the day. But I know how important it is, on those mornings especially, to do whatever I can to not feel defeated because hopeless is a really shitty place to be, and the deeper into you fall, the harder it is to climb out. So, I make it my goal every day to do whatever it is I can to maintain that resilience. I exercise. I spend time outside. First, a long walk with my pup and then time in the gym or out on my mountain bike. I eat well. I sleep well. And I try to stay as engaged as possible in the rest of life, but have to balance that with my reality, which is that sometimes a Saturday needs to be spent on the couch with an ice pack and previously made plans with friends need to be cancelled (or maybe never made in the first place). That last one is tough because even though I think the people closest to me do understand, I often end up feeling like a total flake incapable of following through with commitment.

Well, that about covers a lot of what occupies my mind lately. I hope it doesn't come across as whiny and pathetic, rather, just kind of the whole raw, unfiltered truth that isn't super fun to talk about or unload on people when they ask how you're doing. Now on to the medical find-a-SOLUTION stuff, which is still as important and active as it's always been.

First, an update from where I left off last time. I had stopped hyperbaric oxygen therapy and just finished a series of sphenopalatine nerve blocks targeting the sphenopalatine ganglion, which is a group of nerve cells that's linked to the trigeminal nerve. They obviously didn't help. We were thinking the next step may be an accessory nerve block, but after talking more about it, that wasn't something that the doctor (or we) were very comfortable pursuing. Next, I saw a new pain doctor, Dr. Carlson at AZ Pain Specialists. We decided that even though I had had medial branch nerve blocks done several years ago without success, it may be worth re-trying them now that my cervical instability and compressed spinal cord have been corrected.

So I went in for my first block, bilateral at C2-C5. This is a diagnostic procedure that's only meant to provide a few hours of relief. If it helps, the next step is usually a nerve ablation, where the nerve is actually burned to provide longer lasting pain reduction. I didn't feel any real change after the procedure, but woke up the next morning with a noticeable reduction. The doctor wanted to repeat the blocks to see if we could replicate that outcome, but unfortunately, I didn't have a similar result the second time around, which meant he didn't want to precede with the third round. The other treatment option that Dr. Carlson discussed with us, which having done some research on, is really not something I'm interested in pursuing is peripheral nerve stimulation. This consists of getting a small device implanted under your skin, which delivers low-level electrical impulses that interfere with the brain's perception of chronic nerve pain. At this point, I just can't fathom getting something else put inside my body, especially after learning about some of the side effects and associated risks (especially involving physical activity).

Here are the marks from my medial branch nerve blocks (marker where they inject the needle), starting at C2 and continuing through C5. You can also sort of see what my scar looks like a year later.

But on a somewhat similar note, I am re-trying a transcranial magnetic stimulation (TMS) device. This is something that I wrote about when I initially started using it just over two years ago. It uses a highly focused pulsed magnetic field, similar in type and strength to those produced by an MRI machine, to stimulate cortical neurons and effect neuroplasticity. Historically, it's been used (and pretty successfully) in the treatment of severe depression but is looking more and more promising as a pain management therapy too. My Mayo Clinic neurologist, Dr. Dodick, has been very involved in the research with TMS and migraines, so when I saw him a few weeks ago, he suggested that I give it another shot. When he leant me a device to try before, he was leading a study to help it get FDA approval, so I used it for just a little bit before giving it back. What they found in their research, though, was that the TMS can take up to 3 months of consistent daily use before having an effect on headaches and the results they saw were pretty profound. So the protocol I'm on right now is as follows:

Every morning, I give myself two "shocks" (see video below, which shows one). Then I wait fifteen minutes and do two more. At night, I repeat the same for a total of eight per day. The anticipatory expression on my face may suggest otherwise, but it doesn't hurt. Just feels like a little jolt.

As a special treat for those still reading, I saved the most optimistic part for last, which is my current physical therapy focus. I've always known about the dysfunction I have with my breathing (and have discussed it on here quite a bit). It seems like, if you're alive, you really should already have whole inhale-exhale thing nailed down, but it's not so simple (and even more so the case for people in chronic pain). Basically, the problem with my breathing mechanics is that I do a really poor job of breathing with my diaphragm and because my diaphragm doesn't do its job well, other accessory breathing muscles end up working in ways they're really not meant to work in.

There's no way to know if this is more a contributor to my pain or a result of my pain, but it's very likely a combination of both, and therefore very much worth addressing. This article, The Respiration Connection: How dysfunctional breathing might be a root cause of common upper body pain problems and injuries does a great job of explaining what's going on and how it could possibly be impacting my headache. It also could explain the chronic tightness I have in my scalenes, SCM, upper back, and pec minor.

"If it exists, the connection between dysfunctional breathing and pain is straightforward in principle: if the diaphragm doesn’t do its job well, muscles in the upper chest (pectoralis minor) and throat (sternocleidomastoid and scalenes) will try to help out.2 Unfortunately, these muscles aren’t built for routine respiration, and they get exhausted and tender (more on how this works below). If this occurs, it could trigger a cascade of uncomfortable consequences over time.

Right now, I'm trying to re-teach my body the correct way to breathe. Simple, but not so easy because your body gets really good at doing things the way it thinks it needs to do them. 

One reason that I'm so hopeful that these changes can help me is that I actually FELT some degree of HEADACHE RELIEF along with significantly improvement in overall neck tightness after a PT session last week just from working on this. The reduction in my headache only lasted a few hours, but that is a HUGE deal for me. Not only does it give me confidence that I'm on the right track (which counts for more than I can even communicate), but it confirms the intuition I've always felt in the connection between the "tightness" (that just doesn't change no matter how much it gets "worked on") and my headache.

Here's a short clip of one of the basic diaphragmatic breathing exercises. My PT, Jeff, is physically holding my ribcage down so that I'm forced into a better position for proper inhalation.

And here's a before picture (top) of my obvious rib flare compared to just a few days of practice (bottom) You can see the improvement just by looking at the change in angle of ribs. The plan is to keep making progress and hopefully start feeling some changes in my headache. Stay tuned!


  1. Sounds like you should try singing lessons!

  2. that says it was anna, but it's me, Michelle.

  3. OH I just found your blog and deeply identified with your experience. You capture the ups and downs, the highs and lows, the hopes of some victory and the agonies of repeated defeats. I try not to view them as defeats but as temporary setbacks. But after 7years and 3 months, multiple surgeries, injections, 22+ medications, innumerable procedures and therapies, they sure feel like defeats. Two days ago, I made the decision to go forward with SCS trial. Cervical scar tissue after a 5 level fusion will complicate the trial. If you'd like to contact, please use bjackson71@austin.rr.com. Like you, I have a wonderful husband, family and support system. But I feel like they are burdened enough without my going negative; and there is no way anyone can understand without having lived this 24/7 for years.

  4. P.S. It's Michelle again. You should try and come out this way on May 11, we are renting the Avalon on Cuttyhunk for a cousins get together! Your diaphragm would certainly get a good workout with all the laughter!!! Take care.....

  5. Hi Katie - Just wondering if you got my email discussing upper plexus TOS and/or multidirectional instability. I just look at the length of your traps esp on the left and wonder. I know its none of my business, but I look at your story and it is like Ive written it with regards to the efforts to solve your headache problem. Anyhow, good luck, Alison

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  7. Sorry I had the wrong citation. This is the article that really guided me to Wash U and ultimately surgeries for TOS. The article is "Headache as the Leading Symptom of the Thoracic Outlet Syndrome" Authors Neil H. Raskin M.D et al.
    Good luck, Alison

  8. I wonder if your brain could reset the issue, see doctorbraincures.com - let me know if you are interested in trying... jackiedevries at mac dot com

  9. HI Katie, about 15 years ago I had a C1/C2 fusion with cables followed by 2 corrective surgeries. I have suffered with terrible headaches ever since the first surgery. Have tried nearly everything. Have managed to get by for most of that time using various triptans, but recently I have been struggling a lot. It's all very discouraging. Struggling at a new job now, but it is very hard. Have decided to have another go with a new neurologist. We'll see how it goes. It strikes me as absurd in this day and age that we should have to struggle as we do with this issue. I find it impossible to believe that there is not something truly effective that can be done for us. As it stands, the future stretches out for me and for you I am sure as an endless road of difficulty and pain until we finally give up. I don't always feel this grim, but, you know, pain changes your perspective on everything in your life. I wish you the best. doug

  10. Hi Katie, I am so very grateful for your blog. I have an 11 year old who also is seeing Dr. Crutchfield and has had the first round of shots in his occipital nerve trigger points. It was excruciating for both of us. It hurt so much that I cannot even fathom going through another round. What are your thoughts on this? Is this whole thing for nothing? Do most of his patients under go surgery??? He is only 11!!!! Please get back to me if possible and I hope you are well!

    1. Hi Courtney - I'm sorry to hear about what your son (and you) are going through. What is your son's diagnosis? Is he getting these injections because of headaches? Did the injections help his headache or whatever other symptom(s) he's having? It's hard for me to comment on the typical course of action for Dr. Crutchfield's patients because I'm not sure what the typical patient is who gets those injections and it's been several years since I saw Dr. Crutchfield ... I was getting injections with him prior to getting diagnosed with a disrupted transverse ligament and a capsular synovitis at C2 against my brainstem, along with a tonsillar ectopia, where the bottom of my cerebellum was crowding my brain steam and basically jammed up against my skull, restricting the flow of my cerebral spinal fluid.

    2. (that diagnosis is what led me to a C1/C2 fusion and craniectomy... after pursuing less invasive treatments like a lot of manual therapy and regenerative ligament treatments like prolotherapy and PRP.)

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