5 months post second occipital nerve surgery

Long overdue.... but isn't it always?

I'll start with a timeline refresh. 

I'm currently five months out from my most recent surgery, where Dr. Peled performed an excision of my left lesser occipital nerve (you can read more about that in my 6-weeks post-operative post here, including experiences with my latest tries at Botox, trigger point injections, auriculotemporal nerve blocks, a vagal nerve stimulator, and Charlotte's Web (CBD). Six months prior to that surgery, Dr. Peled had already decompressed both my right and left greater occipital nerves and right and left lesser occipital nerves and excised both right and left third occipital nerves. Some patients have relatively immediate relief from these procedures (whether that's total resolution of or significant reduction in pain), but it's also not uncommon for recovery to be a longer, bumpier road, as nerves can take quite some time to heal. So as the weeks and months passed without improvements in my head pain, I tried to remain (still do) as cautiously optimistic as possible. 

In January, I started seeing a new physical therapist who specializes in visceral mobilization, which is a manual therapy consisting of gentle, specifically placed manual forces that encourage mobility, tone, and inherent tissue motion of the viscera (organs), their connective tissue and other areas of the body where physiologic motion has been impaired. I'd tried this with several practitioners over the years without success, but now that the primary mechanical drivers of my pain had hopefully been addressed, perhaps the outcome could be different. Unfortunately, it wasn't. I worked with this PT for about four months before deciding to call it quits. 

By late winter/early spring, my high pain days seemed to be getting more and more frequent. My headache, still throughout my frontal, temporal, and occipital regions, would "flare up" but then just not come down. Days then weeks would pass. I don't think I can use the word "flare up" anymore, I told Craig just a few nights ago. It implies there are ups and downs. I don't have the downs. 

I did have a little bit of dry needling on and alongside my incisions to try to help break up some of the scar tissue (these last two procedures, along with my C1/C2 fusion and craniectomy 2.5 years ago have left quite a bit of that) but I just felt like there was still something going on around the area of my left lesser occipital nerve. So in March, Craig and I decided to fly back up to San Francisco so that Dr. Peled could try a steroid injection at that site to help with inflammation. I could have seen a physician here in Arizona to do that, but just feel more comfortable this point under Dr. Peled's care.  Unlike the diagnostic blocks, this type of injection can take up to two weeks to "kick in" but unfortunately, that window came and went without any pain reduction. 

Soon after, I tried a month-long cyrotherapy experiment. I've done cryotherapy in the past at my naturopath's office, and have quite a bit of experience with cold-water immersion on my own but wanted to see if more consistent total-body cryotherapy along with local cryo treatment to my neck (which basically feels like a hairdryer blasting you with freezing air) had any effect on my pain. So I tried this daily for about thirty days. The chamber is a dry, oxygenated air set to -170 degrees F. You stay in there for 2.5-3.5 minutes (exact time determined by how long it takes your skin temp to drop 30-45 degrees). It sounds sort of brutal but actually feels much less cold to me than sitting in an ice bath. 

I'm fully aware that certain therapies like this raise some eyebrows, especially when packaged up into a monthly membership at a Scottsdale strip mall. BUT, whether or not all of their claims are grounded in hard science, there is something to the cold. It's invigorating, oddly calming, and certainly has an impact on the parasympathetic nervous system. But most of all, when you're a position like mine, you can't really afford not to try something. I'm glad I did, but will be sticking to the cold plunge from here on out. 

Most recently, I restarted some manual work with a new massage therapist and have begun seeing a new Chinese Medicine acupuncturist. I know more than anyone not to expect bite-sized miracles, but I've noticed that treatments like these, even the most gentle, can spike my pain in the hours, days, and sometimes weeks following, which can make the process extra challenging to navigate. 

I do have a next step mapped out though, which I'm actually feeling excited about. I decided, based on the nature and very specific location of pain I'm feeling in my suboccipital region to go back to San Francisco yet again for another series of blocks. I'm fairly confident that my greater occipital nerves are still causing problems (both of which were decompressed last summer, not cut). Dr. Peled is going to try these injections for diagnostic purposes (fast acting Lidocaine/Marcaine) and *hopefully* therapeutic purposes (meaning that he'll include some longer-acting steroid in there too.) Depending how I respond in the few minutes after these blocks, we may decide to try some injections in my supraorbital area as well. 

I realize that from the outside, you're probably wondering why the hell I'm chasing a solution (particularly an invasive one) that hasn't really proved effective for me thus far. It's hard to explain my reason, other than to say that all I can do is listen to my own body and trust my intuition. In almost seven years, I have never felt the (temporary) relief I experienced during my diagnostic nerve blocks prior to both nerve surgeries with Dr. Peled. I'm not ready to give up on that. 

On that note, while I may not yet be a shining example of a migraine surgery success story, I wholeheartedly believe in the promise of this treatment option for patients whose symptoms, medical history, and response to a qualified surgeon's diagnostic blocks make them candidates. I've come to know, first hand, too many people who've been given a second lease on life thanks to these procedures not to. 

In fact, the American Society of Plastic Surgeons (ASPS) just issued a statement regarding their official position on the utilization of peripheral nerve surgery for the treatment of chronic headaches/migraines. Based on a comprehensive literature search and review of a large body of peer-reviewed scientific evidence, they found that "peripheral nerve/trigger site surgery for refractory chronic migraine headache (MH) is safe and effective in the treatment of patients with a suspected peripherally-generated/centrally-conducted MH etiology" and concluded that the "long term effects of surgical intervention for refractory chronic migraine headache (MH) cannot be reasonably attributed to placebo." This is a big deal because critics of this surgery (i.e. most neurologists) will say that the body of peer-reviewed studies demonstrating efficacy owe their success to the placebo effect. Hopefully, this is a at least a step forward in bridging the glaring (and from a patient perspective, incredibly frustrating) gap between neurologists who treat MH patients and the plastic surgeons who specialize in this treatment. 

So that's that. I'll do my best to update after my trip to San Francisco. 

For the most part, sharing this unplanned headache journey of mine over the last few years has been highly therapeutic. Lately it has just been feeling less so. I think it's just that I'm so over the pain. So over feeling it, living it, thinking about it, talking about it, and naturally, writing about it. There's something else, though, too, which is that the longer this chapter of my life becomes (just two months shy of seven years), the harder it feels to effectively articulate it. Especially because there's nothing I hate more than feeling like I'm complaining. 

Everyone knows what physical pain feels like. A lot of people (too many) know what chronic or recurring pain feels like. But most people also know what it feels like for pain to go away, and that knowing - that guarantee - that however uncomfortable or intolerable it may feel, it isn't permanent - changes the entire experience. 

I was picking up a few things at Target recently (said no one, ever) when I couldn't help but overhear a conversation between a few ladies shopping next to me. 

"I had a migraine this morning." 

"Ugh, migraines are the the worst." 

"But I ate lunch and it went away." 

She ate lunch. It went away. On to the next topic. Without warning, my eyes welled up with tears. Emotional breakdowns in Target now? Really? This is supposed to be my safe space. Hah. I beelined for all things Hearth & Home. Crisis averted. But you get point.

Then there's the question I struggle with the most: What does it feel like? 

Earlier this week, I sat facing my new acupuncturist who, as part of any normal evaluation, asked about the nature of my headache. "Is it a sharp pain? Or dull?" 

Sharp's never been the right word...but man oh man do I loathe the D word. A dull ache. "Dull" to me is the epitome of mild, lame, ho-hum. An adjective that belongs attached only to uneventful meetings, stale first dates, or worn-out blades hardly capable of inflicting damage. But pain that spreads across your head like some kind of wet, heavy blanket, covers your brows and envelopes your eyes deep into their sockets, squeezes your temples, and gnaws on the base of your skull with every inhale and every exhale of every minute of every day of every week of every month of every year for almost seven years straight?

No, I wouldn't call that dull. 

It seems that no matter how descriptive or thorough I am in explaining my pain or relaying my never-ending hunt for a solution and all of the fear, stress, and frustration it carries, words will never suffice. But I guess if I stop trying, that's guaranteed. 

When head pain is chronic and intractable, it becomes the background noise of life. Imagine sitting in in a restaurant having dinner with friends and there's some pretty awful music playing from the surround sound speakers (literal background noise...see what I did there?). You can't really tune it out, but you can still enjoy dinner. What happens though when the volume gets turned up, and keeps increasing until it's blasting in your eyes. You can't hear a single word that anyone's saying, your exhausted from screaming over the music just to be heard, frustrated that you can't just turn it off (or even down!) These awful sounds aren't tolerable background noise anymore. It's dinner with friends that has become the background noise. 

That might be the best way for me to explain this battle for me. I wake up with the pain turned up high and do everything in my power to keep normal life stimulation from pushing it past the threshold. Because once that threshold's been crossed, it's just pain blasting at full volume with everything else forced into background noise. And holy shit is that exhausting. So it just means I have to do all I can to control my environment, my routine, and as much input and stimulus to my system as I can. On the surface, it can look like a pretty relaxing day; a long morning walk with Charlie, a sweaty workout, a healthy meal, an afternoon nap. But it can also be really discouraging too, especially when it means not pursuing opportunities or choosing to skip out on things that I don't really want to miss, like one of my closest friend's weddings, or my sister's bachelorette party weekend and countless others. Luckily, those closest to me are always so understanding and supportive, for which I'm most grateful. 

Fingers crossed that my next set of blocks will bring some relief and at the very least, provide more direction for the road ahead! Until then, I leave you with my always reliable, tried and true mood booster.