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Friday, May 11, 2018

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. 

Tuesday, January 23, 2018

Six weeks post lesser occipital nerve excision

And just like that, I'm six weeks into my last (as in most recent, and hopefully also, final) surgery. Maybe the green light to start working out again this week was what I needed to lift the the fog of writer's block that's been plaguing me since late fall. Endorphins, my friends. They're no joke.

So I'll pick up where I left off in November. I was preparing to head back to San Francisco in mid December for Dr. Peled to cut my third occipital nerve, which had been decompressed back in July but was showing obvious signs of lingering damage.

I had a few other procedures scheduled here in Arizona prior to surgery, though. First, was more Botox. This was my third round in six months, and I can't say I was super optimistic going into this one, given that I hadn't felt any improvement until then (coupled with the fact that I didn't have a positive outcome the first time I tried it close to four years ago either) BUT, my Mayo neurologist and his PA had reminded me that for some of their patients, it really does take multiple rounds for the Botox to make a dent. On some of the online occipital neuralgia support groups and forums that I belong to, I often see people talk about how painful these injections are for their migraine treatment (or how much they dread or fear procedures like this). Maybe it's a testament to how many times my head and neck have been poked and sliced into, or maybe I'm just a complete wacko, but there's something about the feeling of a half inch needle going into my sore head that actually feels good. Almost like a massage therapist digging into just the right spot. Unfortunately, that feeling leaves with the needle.

Here's a breakdown of the Botox injection sites: 
5 units in the procerus
5 units in 2 injection sites in the corrugators
20 units in 4 injection sites across the frontalis
20 units in 4 injection sites in the right temporalis
20 units in 4 injection sites in the left temporalis
25 units in 5 injection sites in bilateral parietal region
20 units in 2 injection sites in bilateral masseter muscles
15 units in 3 injection site to the right occipitalis
20 units in 4 injection sites in the left occipitalis
20 units in 4 injection sites in bilateral cervical paraspinal muscles
30 units divided evenly across a total of 6 injection sites in trapezius muscles

In early December, I went back to Mayo for bilateral auriculotemporal nerve blocks and a series of trigger point injections.  You can see the location of the auriculotermporal nerve below. The area over bilateral temporoauricular nerves was injected with 2.0 mL of 0.5% Bupivacaine. 0.5 mL was injected 2 cm anterior to each tragus bilaterally. An addiontal 0.5 mL was injected into each of two tender spots in the temporal region which followed the nerve distribution bilaterally.  As a side note, this is the only nerve block procedure I've ever had (and I've had a lot) that has left lasting tenderness at two of the injection sites near each temple. Weird.

And here's a breakdown of my trigger point injections:

The area over 12 trigger points were identified in bilateral cervical paraspinal and trapezius muscles, followed by a 30-gauge 1/2-inch needle 0.5% bupivacaine. 0.5 mL of 0.5% bupivacaine was injected into each of 12 identified trigger points. 

Then, just a few days later, it was time for Craig and I to fly back to San Francisco for surgery. Dr. Peled's office is in the city, but this time we opted to stay in the east bay where the surgery center is. We knew we'd rather spend any downtime getting some fresh air in Walnut Creek. If surgery-eve sunset hikes are your thing (no? just me?), Acalanes Ridge is where it's at. 

On December 11, we reported to the surgery center first thing in the morning. (Thank God, because meal skipping is not my strength.) 

This procedure didn't take quite as long as the one in July because instead of having four nerves decompressed (right and left greater occipital nerves and right and left lesser occipital nerves) and having two excised (right and left third occipital nerves), I was only having my left lesser occipital nerve excised. Since I was under for less time, I also had a much easier time waking up from anesthesia this go around. 

Like my first surgery, I woke up feeling surprisingly good. Drowsy, but perfectly capable of walking into Whole Foods and eating most of the prepared foods bar on our way back to the hotel. I spent the rest of the afternoon just resting with ice packs in rotation (wrapped up to keep my incision dry). I had filled the prescriptions for the pain killers that Dr. Peled had written (and then forgot them at home...and then had them refilled in CA) but just like last time, I really didn't have enough discomfort to warrant taking them. I did stay on a regular dose of CBD oil (not sure how much, if any, it helped) Then I rested the majority of the next day, but even went for some short walks in town (lying stiff in bed always feel so uncomfortable to me). 

On Wednesday morning, Craig and I met with Dr. Peled for a follow-up before flying home. You can see here what my incision looked like (day 3) as he removed the bandage to change out the steri strips.  

For the first few weeks after surgery, numbness around my incision and throughout the lower portion of my scalp and behind my ear was at an all time high (which, truthfully, doesn't both me at all) and pain throughout my head was at an all time low. Then, the "honeymoon period" ended and I started having increased pain along the top, frontal, temporal, and supraorbital regions of my noggin. But I knew from my first surgery that this wasn't an uncommon occurrence. When nerves are decompressed or cut, part of the recovery process often involves other nerves becoming hypersensitive in response. Kind of a "what the hell is going on back there?" reaction. That made for some tough days (which, I can't really say are over just yet) but the most important thing was that the area around my lesser occipital nerve was ..and still IS...feeling good. That in itself is my greatest source of optimism, especially given that those other regions of my head did calm down with the pre-operative diagnostic block to that nerve. In other words, I have good reason to believe that in time, everything else should start feeling better. 

The steri strips fell off about two weeks later, and here's what this beautiful neck of mine looked like then. Still some inflammation around the incision, but not bad. 

Over the last month, the theme for me has been patience. Of course that doesn't mean I've felt patient or acted patient (sorry, Craig) but I know this recovery just takes time. 

A few weeks ago, I had a follow up with my neurologist, Dr Dodick. It's been an interesting experience navigating this occipital neuralgia diagnosis and occipital nerve surgeries without the full support or participation of my neurology team. I understand the need for more research and more data supporting the efficacy of this treatment, but it's frustrating to realize how little collaboration there is. Peripheral nerve surgery is obviously not the solution for every migraine patient. But I mean, shit, there are A LOT of people whose lives it is saving (yes, saving)...people like me who have exhausted virtually every other conventional and alternative treatment and are left with very few answers and very little hope. Isn't that at least worth paying attention to? 

Anyway, Dr. Dodick advised against continuing with a fourth round of Botox (something we had previously discussed) and against retrying a newer model of the Cefaly device, the Cefaly Dual (something I had talked about how his PA back in November). I first tried the Cefaly back in spring of 2013 without success. This device attaches to your forehead and generates very precise electrical impulses to stimulate the nerve fibers selectively. Dr. Dodick explained that he's actually had some chronic daily headache patients get worse on the Cefaly and then not rebound back. What a treat that must be. 

Pretty confident that it wouldn't make things any worse, he did want me to try the gammaCore non-invasive vagal nerve stimulator a shot though. Currently, the gammaCore is only FDA-approved for cluster headaches but it will be approved later this year for migraines and he's had some anecdotal success using it with patients of various headache disorders. So although no yet covered by insurance (AKA not cheap), we figured it was worth a shot. 

gammaCore activates pain-relieving power through non-invasive vagus nerve stimulation
gammaCore (nVNS) activates your vagus nerve with a patented, gentle electrical stimulation, providing relief from cluster headache pain in a very different way than drugs.1
  • The vagus nerve is an important highway of communication between your brain and many parts of the body2
  • The vagus nerve plays an important role in regulating pain2
illustration of vagus nerve
Non-invasive vagus nerve stimulation with gammaCore is believed to help block the pain signals that cause cluster attacks.2,3
  • Unlike traditional vagus nerve stimulation therapies, gammaCore stimulates the nerve non-invasively through the skin1
  • Avoids many drug-like side effects and the injecting, inhaling, or ingesting associated with medications1
  • gammaCore is FDA-cleared and has been used in Canada and Europe for several years4

The gammaCore is supposed to be something you use for at least a month (sometimes more) before really knowing if it's helping, but it became very clear after a few days using it that I wasn't responding well. I had some MAJOR flares in my frontal pain, which seem to subside when I'd been off it it for a week or so. So that's done with. 

So right now, at the six week mark, I'm slowly start easing back into my regular workouts ("take off like an airplane, not a rocket" as Craig said yesterday morning before I practically skipped out the door at 5:30 am to the gym). In physical therapy (and on my own), I'm also working to improve some of the issues I have going on down the chain. I have so much neural tension through my left shoulder and arm that in order to allow for movement of my head, my left levator scapulae becomes over active. As a result, my long thoracic nerve is irritated. Layered on top of my head pain, all of these issues seem overwhelming (at least to me) but ultimately, I know it's all connected (whether to my original injury or just a product of all of the trauma my body's been through in the last 6.5 years. The lower I can get my head pain, the more manageable everything else seems. Like all of life actually. 

Aside from the infrared sauna (which I try to get in daily), I've started getting back in the cold plunge regularly. Cold immersion (including contrast with hot), especially when preceded by short interval sprints (:20 on the bike with pretty high resistance) just seems to give me some better days. I'm not sure if it's a hormonal response or what but I'll take it. 

I also just started taking these Charlotte's Web capsules from CW Simply. I've used Charlotte's Web in oil form before but through a work introduction, Craig recently spoke to a neuroscientist whose primary research focus is using cannabis to treat pain and in his experience, he's found these tablets to be most effective as compared to the various other forms. So, I'm only on day #2 but I'll keep you posted as to whether it seems to help. 

Lastly, I came across this blog post a few weeks ago...written by another CA-based plastic surgeon who performs the same procedures I've had with Dr. Peled. It's titled "Head Trauma, Whiplash, and Migraine Headaches" and it caught my attention for obvious reasons. Since I know that many of the people who land on my blog are dealing with chronic head pain for the very same reasons, I thought it was worth sharing. Dr. Lowenstein provides an excellent explanation of exactly how occipital neuralgia can develop in patients like us. There aren't words to describe just how difficult it is to live with this kind of pain (some of us, for so long) yet still not understand or be be able to explain what exactly is even causing it. 

Thanks to Dr. Peled, I now have understanding, validation, and (almost...I'm getting there) resolution of mine. 

Here's an excerpt below, but it's worth the whole read. 

"...in many cases, it is the second part of the head trauma, the neck whiplash that can be the culprit in ongoing, chronic, or recurring migraines and head pain.  Imagine what happens to the muscles of the neck when head trauma is imminent… the neck’s role in the human body is to keep the head stable.  When there is unusual motion or the body senses that there is about to be trauma to the head, the neck’s role is to tense up and try to prevent the head from hitting anything, and if it has his something, the neck is supposed to prevent the head from bouncing back or hitting something again. 
In these cases, the main stabilizing muscles of the neck become tense and strong and try to keep everything safe.  The forces of the heavy skull and brain moving in one direction while the neck is working hard to stabilize things is what creates the whiplash injury.  Duriare this situation, the tissue of the muscles- both the muscle cells themselves as well as the fascia, or connective tissue, in and around the muscles can become damaged.  This damage can come in the form of micro-stretches or even tears of the muscles or fascia tissues.
The occipital nerves run through the muscles of the neck.  From the level of the spine, the nerves course through and around several muscles including the splenius capitus, the trapezius, and the sternocleidomastoid muscles.  All of these muscles tense up in order to stabilize the head in cases of trauma.  Tightening of these muscles around the nerves is a common circumstance in head trauma, and anyone who has experienced head trauma can describe the sore muscles associated with the days or weeks following the event.  What is actually happening is the same kind of thing we see when we “pull” a muscle- stretching and tearing of the muscles tissue creates soreness, and the muscle is then repaired in time, often with some degree of scar tissue.
Athletes who experience “pulled” muscles often go through physical therapy and massage.  These therapies are meant to re-stretch the muscle tissue and loosen up scar tissue.  But do patients who have a history of “head trauma” go through the same muscle care?  Sometimes, but not often, and not often early enough to prevent chronic scarring.  The neck tissue that is stretched and torn heals with scar tissue and often creates the permanently tight tissue that can compress the nerves going through it.  Tight muscles and fascia, often associated with scar tissue and even chronic inflammation, cause compression to the occipital nerves in both the short and long-term after these head traumas.  Studies have shown that this nerve compression can often be the triggering signal that sends a distress call to the brain, triggering head pain and migraine headaches.
It is no surprise that we often see that patients with a history of head trauma have migraine headaches develop either immediately or shortly after their injury.  While a subset of these patients has primary brain issues that cause short and long-term head pain, many of these patients actually have a condition that is correctable by migraine surgery."

Thursday, November 16, 2017

4 months post-op (and 1 month pre-op)

Well hello friends. It's been a while. Four months to be exact. And no, the second half of that title isn't a typo. But before I get into that, how about some non-headache news?

In September, Craig and I were married at our friends' lakeside home in Idaho! It was a magical few days on Coeur d'Alene with our families (and our Charlie girl). I did my very best to push my pain aside and soak up every moment that we'd been waiting so long to experience and share. It was truly everything we had hoped for and then some.

Photos by Don and Julia Photography

Our wedding week was followed by the most amazing road trip through Idaho, Montana, and Wyoming. We made stops through Whitefish, Glacier National Park, Bozeman, Yellowstone, Jackson Hole, and the Grand Tetons. Photos simply cannot capture how stunningly beautiful that slice of America is (though it didn't stop me from trying). And for as adventure-packed as our entire trip was, it was also entirely low-key and relaxing. No set itinerary and plenty of time for R&R, which was perfect.

And now for the head stuff. 

When I posted an update in July, I was only two weeks out from my occipital nerve (ON) surgery, in which Dr. Peled decompressed my left and right greater occipital nerves (GON), my right and left lesser occipital nerves (LON) and cut both my right and left third occipital nerves (TON) (which weren't salvageable via decompression).

I had to revisit that post just now to remind myself how I was even feeling then. I'd almost forgotten that although my regular frontal/temporal pain was still quite high, I was feeling complete relief in my occipital/upper cervical area. These latter spots are what I've always referred to as the "focal points" and "drivers" of my headache, so I was feeling quite optimistic. I'd also talked about the sensations I was having throughout my scalp, which consisted of the (expected) numbness (especially on the right side) and a less familiar soreness over the top that I had described as the feeling of a hammer bruising my head. Lastly, I mentioned some classic symptoms of nerve regeneration, like "pulsing," itchiness, and overall tenderness.

SO, here's the fast-forward four month update on all of that:

I'm still experiencing my frontal/temporal pain. I've spent some days on the lower end of what I call my "normal pain range," some days on the extraordinarily high end, and most days somewhere in the middle. So I can't really say that I've trended better or worse with this pain.

At around the two month mark or so, my occipital/upper cervical hot spot returned on the left side, right about where my LON is. The right side still feels good.

My scalp numbness has subsided, though I still have a weird sensation on the right side. The best way I can describe it, which may only resonate with the ponytail wearers among us, is a more amplified version of that feeling you get when you have your hair pulled up too long and then you take it down and your scalp just feels very tender. This honestly doesn't bother me though (in no way classified as "pain" in comparison to my actual head pain) and I assume it'll probably continue improving as the months go on.

So what does this status report mean?

I know, both from talking to Dr. Peled as well as other patients who've been down this path, that four months post-op is not necessarily indicative of my "final result." Nerves can take a long time to heal, which I was and still am prepared for. That being said,  we would have hoped to see more progress at this point.

In the meantime, I haven't really had much luck in managing the pain. Given my track record of failing to respond to pretty much any pain medication, that's not entirely surprising. I was taking this Charlotte's Web CBD oil and had started a course of Celebrex, which wasn't touching my pain and was upsetting my stomach too much to continue. After surgery, I had also gone back on the Low-Dose Naltrexone that I talked about back in June because I wanted to make sure I had given it at least a few months. But since I didn't notice any benefit, I've since come off of that too. Craig had periodically been giving me Toradol injections to help take the edge off during extreme flare ups, but those seem to upset my stomach more too more than they help my pain (and it's really not good to take on a regular basis anyway).

Here's the arsenal of meds that came with us on our wedding road trip. Nothing says love like a shot in the ass on your honeymoon, am I right?

So my pain management, or "sanity maintenance," as I think more aptly describes it, has consisted of just taking care of my body and mind the best way I know how: eating a whole-foods/anti-inflammatory diet, getting daily exercise, fresh air, having a constant supply of ice packs at my disposal, and adequate sleep (including the essential afternoon nap). I've had some soft tissue work here and there, but quite honestly, don't feel any relief from it so it hasn't been a regular part of the routine lately.

I've also been dealing with even more than usual pain and tightness alongside my thoracic spine. My PT thinks this is actually my long thoracic nerve that's flared up, which makes sense given how much pain and tightness is going on above it. I know this is reactionary to that tension in my left occipital/upper cervical.

I'm also scheduled for my third course of Botox injections with my neurologist next week. I was tempted to cancel it because it obviously hasn't done anything for me over the nine month period, but I want to make sure I give it a fair chance and the data says it can take up to three rounds.

Patience aside, I had been concerned about the return of this one focal point of pain on the left side, and after talking with Dr. Peled about the nature and location of that pain, we decided there was a good chance that my left LON was still an issue, which is entirely possible given that it was just decompressed and not fully excised. So last month, Craig and I flew back to San Francisco so he could give me a nerve block to see if we could identify it as a remaining pain source.

After taking an initial look under ultrasound, he blocked that nerve with a local anesthetic just like he had done as the diagnostic procedure a few days before my surgery in July. The first injection brought my pain down a little, which gave him some guidance to tweak the location of the next one just slightly, and that time, I knew we had hit "the spot." Although very much temporary (about a half hour this time), I felt elimination of the pain at that nerve and a significant enough reduction in the frontal pain to warrant a conversation about the next step: did I want to wait things out for another few months or did I want to just move forward with an excision of this LON?

Craig and I spent the next few days talking about it before deciding that another surgery sooner rather than later made the most sense. I can understand how this might not be the right choice for everyone in my position, but the only thing I can do is listen to my body and do what feels right. And this is what feels right. So in a few weeks, I'm scheduled for surgery.

My recovery timeline will be similar to my last in that I'll have to really take it easy for about six weeks before easing my way back into light activity. Although, I'll only have one incision this time compared to the five I had before and surgery will obviously not take as long. As with any nerve excision, there's a chance I'll have some permanent numbness (though less of a chance with this nerve) but like I said last time, I'll take numbness over pain any day.

When it's come up in conversation that I'm having another ON surgery, I've noticed the reaction most people have involves a lot of head tilting, cringing, "oh nos," and "I'm sorrys!" And I get that. Ironically, though, that sentiment couldn't be further from the emotions I'm feeling. Allow me to explain.

Imagine you just found out that you're going on an extravagent vacation. We're talking all-expenses-paid, once-in-a-lifetime, destination of choice, pinch-me-so-I-know-this-isn't-a-dream kind of trip. You're counting down the days, bursting with anticipation. You start mentioning your travel plans to friends and family and maybe even some strangers.

Here's how they react...while wincing and nodding apologetically.

"Oh gosh, I can't believe it. You poor thing...such little leg room on the plane these days. You may even have a connecting flight. I sure hope the layover isn't too long. I'm so sorry if it is!" 

"Wow. Does this mean you're going to have to print your boarding pass? Are you worried about your printer running out of ink? Oh, you're going to just go electronic? Are you worried about your phone dying at the airport?" 

And here's how you react:


But now I'll throw ya a curveball. (Bear with me.)

You find out that when you board this magical plane, it's not a total guarantee that it's taking you to [insert dream destination]. I mean, there's a really good chance that it will. It's taken a lot of people who've come before you exactly where they wanted to go but, it could end up just circling your departure city, or even sitting on the tarmac for a few hours until you realize this whole thing is a bust. Ugh, imagine how deflated you'd feel returning home now? There's also a chance that it gets you from point A to point B perfectly safely, but it takes just a few hours longer than you were anticipating...and maybe there's sweaty-palm-inducing turbulence along the way. And even if everything else goes as planned, of course flying does always carry some inherent risk.

Aha, the plot thickens. Do the potential risks blunt your enthusiasm? Or does the potential reward (ahem...PARADISE) still make it no-brainer?

Do you see what I'm getting at?

Re-reading this all, I'm realizing maybe this is sort of a shitty analogy, but I'm in it too deep now. A lavish, vacation is just that; a luxury. I would never consider the mere absence of chronic pain to be a luxury. That's absurd...even if it sounds like a total dream to me. And I also don't mean to trivialize the completely legitimate apprehension someone might feel in making the decision to have their head or neck cut into. That's no joke. Oh right, and then there's equating a free trip to a surgery that you and your husband pay for out-of-pocket...again. Haha. Fun fact: insurance companies don't cover ON decompression/excision!

But I think you get the point. When you're suffering and there is a solution ahead of you...even just a probable solution...no, even just possible solution...that's all you can - and I'd argue, should - focus on. Enduring invisible pain that consumes you day in and day out without letting it just completely break you requires a tremendous amount of mental and emotional resilience, but I consider this thought process to be more about logic than grit. Just like it would be completely irrational to get bogged down by printer ink and leg room.

At the very least, you've gained some insight into my mindset but maybe - hopefully -  it could help you better relate to or understand others who are suffering from chronic pain. Maybe you don't think support is all about word choice and facial expressions, but as someone who spends their days teetering back and froth over the fine line between hopeful and hopeless, I can tell you that sometimes it kind of is. Instead of someone's rocky or uncertain road to recovery eliciting sad condolences, how about an optimistic congratulations that they're on a road to recovery? 

I think that's it for now. Thanks for reading as always. I'll be sure to post more after surgery in a few short weeks!

Tuesday, July 25, 2017

2 weeks post occipital nerve decompression and excision

As of yesterday, I'm officially two weeks post-op so time for an update!

I wrote my last post the night before surgery (probably while eating an entire Monday worth of calories...fasting is not my strength). At that point, we knew that Dr. Peled would be going in and looking at each of my greater occipital nerves (GON), lesser occipital nerves (LON), and third occipital nerves (TON) and would be decompressing or excising (cutting) depending on the extent of damage. To recap, the compression points that he'd be identifying is a result of scarring and inflammation around the nerves and the tunnels through which they pass (very likely a result of my initial whiplash/head injury in 2011) Decompression consists of cleaning up and removing that tissue in order to restore the integrity of those nerves and surrounding tissue.

This image from Dr. Peled's presentation shows potential occipital compression points.

I forgot to include this is my last post, but I think universe delivered me a sign (literally) the day before surgery. I had gotten a quick lift in at the hotel gym on Sunday morning, and decided to finish my workout with some stair sprints. Not expecting to find anything or anybody in the dingy Hilton stairwell, I turned the corner from the 9th floor to the 10th to find this sign staring back at me.

I mean, it's clearly part of an hotel employee wellness program, but still! Right??

Okay, back on track. So we arrived at the surgery center in Walnut Creek on Monday morning. Dr. Peled came into pre-op to review the plan with Craig and I and answer any questions we still had. He explained that he'd be reopening my my old C1/C2 fusion and craniectomy incision (which he'd do an even better job of closing back up - that's a plastic surgeon for ya!), and making two additional incisions on the side. Unlike my last surgery, he actually shaved the back of my head while I was still awake. At that point, I don't remember feeling nervous...just anxious and ready to get this thing done!

Headed into surgery

Surgery took somewhere between 2.5-3 hours, though it took me quite a long time to wake up from anesthesia so it wasn't until 5:00 pm or so that I was finally alert enough in recovery to ask Craig exactly what he had done. (Actually, I think my very first words - sometime before that in my hardly-semi-conscious state - were "Was it the right thing to do?") I remember him assuring me that it absolutely was, so I drifted back into my drunken slumber for a more hours. Eventually, I learned that he performed a decompression of my GONs and LONs on both the left and ride sides, but my TONs were not salvageable by decompression so he needed to cut those and bury them into the muscle. I was hoping there might be some photos from the procedure, but it's probably a positive that he didn't need to take any because that means that my anatomy was pretty textbook.

I'm a very visual person, so in case you are too - I pulled some screenshots off of this video (Ziv Peled - Update on the Surgical Treatment of Chronic Headaches) so you can get an idea of what before and after a nerve decompression actually looks like. In the first photo, you can see the beginnings of the TON, which is surrounded by a bunch of a white, thick fibrous stuff (that's scar tissue).

In this next photo, after he has released and removed that scar tissue, you can see that the nerve has a lot more room to move. In the video, he also points out how you can see the posterior border of the sternocleidomastoid muscle a lot more clearly, as well as the tunnel (soft fat tissue) through which nerve can more easily passing through.

After getting a bar in me (I think part of the reason I was struggling was that my blood sugar was so low), I was feeling good enough to get in a wheelchair and be taken out to the car. On our way back to the hotel, Craig and I stopped at Whole Foods (because of course) to stock up on the essentials. It seems like it would have been a good idea to do this beforehand, but I never know exactly what I'm going to feel like eating after surgery. This time it was lots of pineapple (rich in bromelain, which is great for inflammation), bone broth chicken soup, salmon and veggies, cashew milk yogurt with added protein and extra collagen powder that I had packed from home, blueberries, and kombucha. Nothing out of the ordinary from my normal anti-inflammatory diet, but I try to always up my intake of probiotic-rich foods when I'm on an antibiotic (which is necessary after this kind of surgery).

The reason I'm even bothering to bring up post-op nutrition (not to mention pre-) is that I think it plays a HUGE role in your body's ability to recover from the trauma of an operation and unlike what happens in the OR, it's something that is 100% up to you, the patient, to control. There's no way that the overly processed and nutrient void Saltines, Jello, and Gingerale at the hospital can provide the nourishment that your body so desperately needs for optimal healing. And if you're going to such great lengths to end your suffering and regain your life, you may as well do every little thing you possibly can to give your body the best fighting chance.

This photo was taken on the night of surgery. My sutures are dissolvable and the incisions were covered with just steri strips, which would fall off about 9 days later. 

At this point in the evening, I was feeling pretty good. Tired, but I surprisingly had NO incisional pain and I could already tell that the occipital region of my head felt different in a very good way. We had pain meds prescriptions already filled (and I wasn't opposed to taking them) but I ended up never needing to, which was a huge bonus. Dr. Peled called to check in on me later that evening, and we spent the rest of the night just relaxing in the hotel room. On Tuesday, we left Walnut Creek to drive back into San Francisco, where we would spend out last night before seeing Dr. Peled at his office in the city on Wednesday morning before flying home. We reviewed my recovery timeline, which basically consists of laying low for about 6 weeks (no strenuous activity, no lifting anything heavy, etc.) Compared to my last surgery - which required complete immobilization in a hard collar for 6 weeks followed by a soft collar for 6 more weeks, plus this super uncomfortable bone growth simulator that had to be worn 4 hours per day for six months - this recovery seems, in many ways, like a piece of cake. After watching me walk into his office and subconsciously moving my body like I was wearing a neck brace, Dr. Peled even reminded me to keep moving my neck (only through range of motion that was pain-free, of course). It's important as the nerves heal that they continue gliding.

And he was happy to hear that I was feeling so good, but reminded me that nerves don't heal overnight and there would very likely be some ups and downs to my recovery, so not to get discouraged if I started feeling more pain or different pain as the days and weeks progressed. It could take several months for things to really settle down; a reality that has been echoed by many fellow ON patients in these FB groups: Occipital Neuralgia and The Nerve Center: Decompression and Excision Migraine (& ON) Surgery. So I made the decision early on that I would just take things one day at a time and continue to remind myself that a worse day wasn't indicative of the big picture path I am now on (a message I have probably relayed to every friend/family member who has asked me how I'm doing over the last two weeks).

Pain-wise, the first 6 days or so after surgery were the best so far. We had a trip to Idaho already scheduled for the day after returning from San Francisco, and I was even feeling up to traveling. Granted, recovering with a view never hurts.

The past week has been quite a bit tougher though with pretty substantial head pain, though it's not the same as "normal." I still have complete relief in my occipital/upper cervical area where I was feeling those focal points and "drivers" of my headache, which is obviously a huge deal and the number one reason I'm optimistic. My scalp itself is still quite numb (more so on the right side) and I experience periodic sensations throughout the back of it, including what can only be described as a vibrational pulse, itchiness, tenderness, etc. (all classic nerve regeneration symptoms).

Day 9: steri strips fell off 

The hard part is the pain I'm feeling in the front - above my eyes, across my forehead, and temples (which I am used to feeling, but it doesn't make it any easier). On top of that familiar pain, it sort of feels like someone hit the top of my head with a hammer, so I'm spending a lot of the day with an ice over it. I suppose there's always a chance that my headache has additional nerve trigger sites (like my supraorbital nerves) but there's no point of even thinking about that right now because these frontal referral pain patterns I'm experiencing aren't unusual after occipital decompression. It could take months for everything to calm down. (Hopefully it happens sooner than that, but I'm prepared for either scenario.)

These photos were taken this morning, 15 days post-op. I'm pretty amazed at how well my incisions are healing! 

I have a phone call scheduled with Dr. Peled in a week (at 3 weeks post-op) and then again at the 6-week, 3-month, 6-month, and 1-year mark. So for now, I'm continuing to take it easy, icing, going for walks, spending about an hour a day in the infrared sauna (I waited until my incisions were closed), snuggling with Charlie (my tried and true best medicine) and practicing the always-easier-said-than-done art of patience.