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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.

Sunday, July 9, 2017

occipital nerve decompression surgery tomorrow!

I'll make it short and sweet...because tomorrow is a big day!

In case you missed my last post (read it here), Craig and I flew to San Francisco a few days ago to meet in person with Dr. Peled (Peled Migraine Surgery). After having consulted with him over Skype the week prior, we had determined that I was a possible candidate for nerve decompression surgery, My history fit, my pain patterns fit, but we wouldn't know for sure until he had performed my physical exam and until we knew my response to the diagnostic nerve blocks.

We arrived in town on Wednesday and saw Dr. Peled Thursday morning at 9:00. He was (is) an amazing doctor who we both felt at ease with right away. He listens. He gets it. He speaks with empathy and honesty and doesn't bullshit you. And you really can't appreciate how far that goes until you've dealt with as many physicians and medical practitioners as Craig and I have these last six years.

The physical examination of my head and neck was pretty equivocal. Most patients with occipital neuralgia test positive for some kind of Tinel sign, which is performed by light tapping over the nerve to elicit a sensation of tingling or "pins and needles" in the distribution of the nerve. I don't experience anything like that, though, despite having several very tender "focal points" of pain in that area.

So we moved on to the blocks. Dr. Peled began by injecting an anesthetic into my greater occipital nerve. The goal of these blocks is to determine if they're contributing to the source of pain, so if and when they provide relief, it is relatively immediate (within 5 minutes) and only lasts an average of 4-6 hours. The plan was to start with the greater occipital nerve and then depending on how I felt a few minutes later, we'd move on to the next nerve to see if that made me feel even better, and so on.

He ended up blocking my greater occipital nerve, lesser occipital nerve, and third occipital nerve. After three blocks (technically six because this was all bilateral), my pain reduction was significant. Through the back of my head but also through my temples and forehead, where those nerves can refer pain. Like 90% better. Crazy.

When he came back in to the room the third time to ask how I was feeling, my face was blank -almost emotionless - which is ironic given how often my headache causes tears, and I'm sure it wasn't the reaction he was expecting. Maybe it was shock, or just an inability to process what I was feeling and what it could mean, but it was an inexplainable feeling; a quietness in my head. I had truly forgotten what that felt like.

We left his office with obvious optimism, even after the blocks wore off and my pain crept back in just a few hours later. All signs pointed towards surgery, which was confirmed when I saw Dr. Peled for a follow-up on Friday morning.

So here is exactly what's going to happen tomorrow morning: 

After opening up my neck, Dr. Peled is going to be looking at the different compression points of my nerves (which could be in a handful of locations). Basically, this compression is the result of scarring and inflammation around the nerves and the tunnels through which they pass, which can happen after whiplash injuries when the nerves gets overstretched. Ideally, he'll be going in there and "decompressing" by cleaning up or removing that tissue, but depending on the severity of the damage, there is a chance he may need to excise the nerves (cut and bury them into the muscle). The only real negative of an excision is that a portion of my neck/scalp that would be permanently numb. Not ideal, but a total no-brainer for me. I'd take a numb head over this one I have right now any day.

Surgery should take just 2-3 hours, depending on what needs to be done, and compared to my C1/C2 fusion/craniectomy, recovery really should't be too bad at all. I'll need to take at east for about 6 weeks (no exercise besides walking), but lucky for me that's all I have to do to get down the "aisle" (technically a dock) in 8 weeks.

I could wake up feeling significantly better, but the road to recovery can vary. Some patients have more or less surgical pain, some patients experience immediate headache relief, while for others it may take weeks or months. "Success" may not be 100% headache free (but it could be, and it has been for many!). It might mean less pain or it might mean fewer days at higher pain. So I'm going into tomorrow with the mindset that this surgery will move me in the right direction and that's all that matters. Beyond that, I'll just need to take it one day/hour at a time.

Maybe not today. Maybe not tomorrow. But maybe tomorrow! 

Wednesday, June 28, 2017

Low-Dose Naltrexone & Nerve Decompression Surgery

When I posted a few weeks ago, I didn't imagined I'd have such a (potentially) big update to share so soon. But things are a happenin.'

To start: I started on a new medication called Low-Dose Naltrexone (LDN) about 10 days ago. I really wasn't looking for new meds to try, but this sort of fell into my lap.

It's not that I'm at all opposed to taking medication (no one in this much pain can be, regardless of how "natural" you like to keep things); it's just that I've had so little success with everything I've tried to tackle my headache over the last six years. From various anti-inflammatories, anti-seizure meds, muscle relaxants, narcotics, anti-depressants, anesthetics, psycho actives, hallucinogens, opioids...in the form of countless pills, infusions, injections, literally nothing has touched my pain. And several have caused some unwanted side-effects to keep my headache company (drowsiness, foggy-headed, and oh yea...kidney stones!) Even my neurologist has agreed that at this point, it's clear that medication is clearly not the answer for me.

BUT (there's always a but, right?), my naturopath, Dr. Popiel, brought LDN up to Craig and I as something that still might be worth exploring. And after learning more about its therapeutic potential, along with its safety profile and minimal to nonexistent side effects, we agreed it was definitely worth a shot.

(If you don't care about reading about how LDN works, just scroll down to the section that begins with "back to this week's developments.") 

So what is Low-Dose Naltrexone?
(Source: The Promise of Low Dose Naltrexone Therapy

Naltrexone is an opiate antagonist drug developed in the 1970s and approved by the FDA in 1984 as a safe and effective treatment for opiate and alcohol abuse. Used at much lower doses in a protocol referred to as Low-Dose Naltrexone, naltrexone is reported to offer benefits in a wide range of diverse conditions including Parkinson's disease, autism, multiple sclerosis (MS), Alzheimer's disease, HIV infection and other viral illnesses, as well as several types of cancer and various autoimmune disorders.

And how does it work?
As an opiate antagonist, naltrexone blocks the opiate receptor, a protein molecule found on various cells, including immune-system cells. The opiate receptor can be compared to a lock that is opened by a key. As the only substances that can activate the opiate receptor, opiates and opiate antagonists are the keys. Naltrexone closes the opiate receptor lock and blocks other chemicals, including endogenous opioid peptides, from opening the lock. In low doses, naltrexone blocks the receptor for four to six hours.

And how does that apply to pain?
Source: Low Dose Naltrexone and chronic pain - Pradeep Chapra, MD, LDN Research Trust

Current literature in pain medicine supports the view that chronic pain, especially chronic nerve pain conditions such as Complex Regional Pain Syndrome, Reflex Sympathetic Dystrophy, Diabetic Peripheral Neuropathy are autoimmune based. A study done on treating Fibromyalgia pain with LDN showed a 30% reduction in symptoms. Below is a short description of the mechanism behind chronic nerve pain. 

The Central Nervous system (CNS) is made up of nerves and cells called glia.  The glias make up about 80% of the CNS while the nerves make up about 20%. The function of the glia is to provide immune protection and host defense to the CNS. Under normal conditions the glia remain in an inactive state. They become activated readily in response to infection or injury. The most important change that happens during inflammation of the brain and spinal cord (Central Nervous System) is activation of glia cells. 
When glia cells are activated they trigger the release of certain chemicals known as pro-inflammatory and neurotoxic factors. These factors include several cytokines such as tumor necrosis factor alpha (TNF-α) and interleukin one beta (IL1-β), fatty acid metabolites and free radicals such as nitric oxide and superoxide. In painful conditions such as Complex regional pain) and neuropathic pain, damage to the peripheral nerves shifts the glia to an activated state within the spinal cord. 
The family of glia cells are made up of microglia and astrocytes. Each of these family members have a specific role. The microglia guard and protect the immune system and the astrocytes help maintain cell fluid balance which is important for the action of chemicals in the cells called neurotransmitters (needed to control nerve function). Glia are activated by trauma, injury, infection, opioids. When activated, glia release pro-inflammatory and neurotoxic factors (cytokines). 
Drugs that block the effect of opioids (morphine) may help prevent activation of glia. Such drugs are naltrexone and naloxone.  Low dose naltrexone (hence, LDN) may inhibit the activation of glia. 
Cells use chemicals called neurotransmitters to communicate with each other. Like most drugs, neurotransmitters work by attaching to specific receptors on cells. When neurotransmitters attach to receptors on cells, it allows for the passage of other substances into the cell (such as sodium, calcium). When these substances enter the cells they trigger the cells to fire and transmit signals along the nerve fiber. 
Glutamate is the most abundant neurotransmitter found in the central nervous system. It is an excitatory neurotransmitter. Glutamate binds to a receptor called NMDA (N-methyl D-aspartate).
The NMDA receptor is the most common receptor found in the Central Nervous System. When the NMDA receptor is activated by glutamate it opens up calcium channels which cause the nerves to fire. 
To summarize, when glial cells are activated they release chemicals and neurotransmitters that cause NMDA receptors to be activated which cause nerves to fire. LDN (Low Dose Naltrexone), by its ability to inhibit microglial activation, suppresses activation of NMDA receptors by decreasing the release of glutamate neurotransmitter.

So I started on LDN at a very low dose (1 mg) and have increased it by 1 mg every week with the plan of working my way up to 4-5 mg. Dr. Popiel suggested I give it at least a month before I decide if it's worth staying on. I haven't felt any changes yet (two weeks in) but actually need to stop it this week (more on that below).

Resources to check out if you're interested in LDN for chronic pain or some other health issue mentioned above:


 LDN Research Trust

www.facebook.com/groups/GotEndorphins/ (this is a private FB group that you just have to send a request to join - I've found it to be a been a super helpful resource)

Okay, back to this week's developments.

Yesterday, Craig and I spent about an hour on Skype with a San Francisco-based plastic surgeon, Dr. Peled of Peled Migraine Surgery, who is a world-renowned surgeon known for successfully treating chronic headache patients suffering from nerve compression with his peripheral nerve surgery.

I found out about Dr. Peled in what now feels like a bit of a whirlwind of events. A few weeks ago, I was trying to make it through another frustrating and discouraging physical therapy session when the therapist pointed out that the tender "spots" I kept pointing to on the top of my neck (which I've always felt to be pain sources) could very well have to do with my occipital nerve. 


In case you've been reading this blog from the very beginning, you may remember (but probably not because I can hardly remember all of the procedures) that about 3.5 years ago, Craig and I traveled to Baltimore for a series of occipital nerve blocks with neurologist Dr. Crutchfield. He injected me with Lidocaine (a local anesthetic) and Kenalog (an anti-inflammatory corticosteroid). At that time, Dr Crutchfield has suspected that my headache may have been due to inflammation around my occipital nerve (also known as "occipital neuralgia.") 

By definition, occipital neuralgia is caused by the occipital nerve being trapped and irritated by the tendons of the back of the neck. Every time my head moves (which, let's face it...is pretty much all of the time, even when my activity level is modified) the nerve will be irritated and can cause a headache that extends over the top of the head to the temples and behind the eyes, which is exactly where I feel my pain. 

If I had had a positive response from the blocks (i.e. immediate and temporary pain reduction), he would have referred me to a plastic surgeon, Dr. Ducic, who performs a similar nerve decompression surgery as Dr. Peled. BUT, I didn't have the response we were hoping for and so that theory was sidelined. 

But after talking to Dr. Peled, Craig and I are convinced that there are multiple variables that could have prevented the blocks from working back in 2014 (if the needles weren't injected in exactly the right spots, the right nerves may have never been hit), and it's 100% worth trying again.

There's some very helpful information on his website explaining why treating headaches under the assumption they are coming from the central nervous system doesn't always work (sure as hell hasn't for me) and how peripheral nerve irritation can actually be the root cause.

Migraine headaches have traditionally been thought to begin within the central nervous system (i.e. the brain and/or spinal cord) and then produce symptoms elsewhere such as throbbing in the back of the head, forehead or temples. There are many theories as to what exactly within the central nervous system is causing these chronic and often debilitating headaches. Some of these theories include pathologic blood vessel dilatation and constriction (loosening and tightening), abnormal firing of neurons within the brain, and abnormalities of various biologic substances (e.g. serotonin, calcitonin gene-related peptide). The fact that no one theory has been proven correct is likely one of the many reasons that there are so many different methods for the treatment of chronic headaches like migraines. In fact, from a medication standpoint alone, there are not only dozens of medications used to treat migraines, but dozens of classes of medications such as triptans, anti-depressants, muscle relaxants, blood pressure medications, narcotics, anesthetics, ergotamines, and so on. Fortunately, a different perspective on chronic headaches has produced remarkable results that have been previously unheard of.

This different school of thought suggests that peripheral nerve irritation (i.e. irritation of nerves outside of the brain and spinal cord such as those within the scalp or forehead) can cause irritation within the central nervous system thus leading to the perception of and symptoms of a headache. If this mechanism were in fact the culprit, then identifying and correcting the cause of such irritation could produce relief from the headache symptoms. Plastic surgeons have been doing exactly that with a common nerve irritation problem known as carpal tunnel syndrome. In this syndrome, a nerve within the wrist is compressed (i.e. pinched) and surgeons decompress (i.e. un-pinch) it thereby relieving the symptoms of pain with a greater than 90% success rate. Recent research has demonstrated that just like at the wrist, there are nerves within the head and neck that are compressed and that decompressing them, can produce significant or even complete relief that is permanent.

What kind of results can be expected from decompression surgery?
The results with these types of procedures have been quite dramatic. In one study out of Georgetown University, data from 190 patients with pain/headaches in the back of the head who underwent surgical decompression were analyzed. Over 80% of patients experienced at least 50% pain relief and over 43% of patients experienced complete relief of their headaches! In February 2011, the five-year results of such procedures were published in the medical journal, Plastic and Reconstructive Surgery. These results demonstrated five years following their operation, 88% of patients still reported greater than 50% improvement in their headache symptoms and 29% were completely headache-free!
So, am I a candidate?
Maybe. Hopefully. Please, please please let me be.
There's a very good chance I am a prime candidate for nerve decompression - based on my symptoms (including the nature and location of pain) and extensive history (including every traditional and non-traiditoinal treatment option that's been exhausted), but we won't know FOR SURE until Dr. Peled performs the diagnostic blocks. 
It would have taken some time to get on his schedule (definitely post-wedding, which is in September), but he just so happened to have a last minute opening for next week, so Craig and I will fly to San Francisco for the nerve blocks on Thursday. The plan is that if they work (which I'll know right away), we'll stay in town for a pre-op appointment on Friday, and I'll go into surgery on Monday. Woah, right? (This fast timeline is also the reason I need to go off the LDN.) 
If I have the surgery, recovery will totally depend on how many nerves need to be decompressed, and which nerves they are (which the blocks will tell us), and just what kind of state those nerves are in (which he won't really know until he gets in there). Some patients experience pretty immediate relief, while others take more time. Post-surgical pain is unavoidable, but that doesn't scare me in the least. 
There aren't words to express just how desperate I am to be a candidate for this surgery. I know better than to expect miracles, but the more I learn about occipital neuralgia, the more patient testimonials I see and the more I connect with current and past patients of his on an occipital neuralgia Facebook group, the more hopeful I feel that this truly could change my life. Just typing that fills my eyes with tears. But for now, I'm trying to really just take things one step at a time. Cautiously optimistic, as Craig likes to say. A week from tomorrow, I'll have a much better idea of what the next step will be. Fingers crossed that I have another buzz cut in my very near future. Stay tuned!