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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! 

Tuesday, June 6, 2017

these last six months

...have gone by without a headache update. Lame. I know.

Even lamer is that I have a whole bunch of unanswered emails from readers (fellow headache sufferers) sitting in my inbox right now. It's not that I don't appreciate (and want to reciprocate) the support or ability to bounce treatment options off of each other; just that I've somehow felt wholly incapable of diving into those conversations. Like I just haven't had the mental or emotional capacity to talk about the pain that already consumes every waking minute of my life.

It's weird. When I first started writing this blog in early fall of 2013, the words just seemed to pour right out of me. As more time passes, though, I struggle to capture and share exactly what I'm going through. BUT, I should try.

So, how am I doing?

Well, I'll start by answering that in broader terms. That's something I've learned I need to do, as much for my own wellbeing as to not totally disappoint whoever's asking. So much is good. Especially when I step outside the tiny bubble that is my life, and consider the magnitude of suffering in the world around it, my pain - which has been especially high these last few months - starts to feel downright trivial.

Except that...it's not trivial. It's fucking overwhelming to wake up in pain every single morning and fall asleep in pain every single night and have a whole day in between those two points in time that are filled with pain but also need to be filled with life. It's downright terrifying - panic-inducing at times - to not know how much longer my pain will last. So when someone asks me how I feel, my answer comes from my attempt to balance those two perspectives. No one likes a Debbie Downer (cue the music), but you can only hear bullshit answers come out of your mouth so many times, you know? So my response scale ranges from "GREAT, HOW ARE YOU?!" to "I'm actually having a really tough day/week/month, thanks for asking" and varying levels of honesty in between.

Quick side story: I walk my dog Charlie at a park every morning (and evening) so see a lot of the same people out for their daily strolls. Though most of these acquaintances would otherwise have no way of knowing about my whole headache ordeal, that stylish neck brace I sported for a few months post-neurosurgery invited some obvious conversation, so every now and again someone will ask how I'm doing. On one recent early morning, a friendly fellow walker did just that. And his how's-your-head-doin' was followed up with "Well, what do they doctors say? Is there ANY hope?"

I don't even remember how I responded, just that I could feel the the all-too-familiar lump in my throat and tears forming behind my glassy eyes. Damn it. I've been here too many times, so by this point, when my eyes start burning, I know exactly how many seconds I have to wrap up a conversation. Hah!

I'm not relaying this fun little story to you for sympathy sake, because it wasn't this poor guy's fault for my overly emotional reaction. I just think it proves how difficult it can be for others (even the most well-intentioned) to truly understand what it's like living with debilitating pain twenty four hours a day, seven days a week. What it's like to have pain management as a full-time job instead of a purposeful, fulfilling career; what it's like to have to lay down in bed every afternoon with an ice pack on your head and take a two hour nap if you want to have any chance of making it through the rest of the day; what it's like to feel the anticipatory excitement of marrying your best friend while stressing out about how you'll make it through your wedding day in this much pain (but never mind that single day in September...how about every day after that for the rest of your life?); what it's like to wonder how you'll be able to start a family together if something doesn't change.

Part of understanding is having the empathy to imagine as best you can what it's like to be on the receiving end of the specific words you choose to speak. "Is there hope?" Because shit, if there isn't hope, what am I even doing?

On a related note, I found this list pretty darn spot on: Helpful things to say to someone in chronic pain.

Shoot, I'm totally bumming you out. Well, I hope not too much, because I haven't given up or anything (far from it). Just trying to give it to you straight.

Treatment updates: 

I've (we've) been busy as always since November, exploring new treatments and revisiting some already tried. Clearly nothing has been a magical solution, but I think (hope) it's still worth explaining everything I've done. Maybe I try something and it doesn't help me. But I know there is a chance it could help someone else. Anyone who suffers from chronic headaches/migraines (or any type of chronic pain) can appreciate that there is no magic bullet; no single solution or cure. But that doesn't mean there isn't a pathway to get better; just that everyone's pathway is paved differently. When I start feeling better (Craig has conditioned me to use when and not if), I may be able to identify turning points - maybe even game changers (if I'm lucky) in my treatments - but realistically, will I be able to look back and truly quantify the impact of each adjustment, medication, modality, procedure, injection, therapy, and approach that I've taken? Likely not. But choosing to believe that I can and will break my headache means that each step is leading to the next. The solution is just what happens when they accumulate.

In somewhat chronological (but also overlapping) order, here's a look at what I've been up to:

I discussed this in my last post. My neurologist (Dr. Dodick at Mayo Clinic) had recommended that I use my handheld TMS (transcranial magnetic stimulation) device 8 times per day for 3 months (based on outcomes from clinical trials). I stuck with it for just over 4 months (to be safe) but unfortunately, didn't feel any relief so eventually stopped.

Total-body mobility work
Back in December, I started feeling like I really needed to do something to improve my thoracic spine and hip mobility. It just seemed like my head pain was making everything so stiff, and probably vice versa. And I knew that if I had any chance of breaking the vicious pain-spasm-pain cycle, it was time to get serious about a global approach to my mobility. Manual bodywork is great, but I needed to change the way I moved. And more importantly, prioritize the work that's required to make it happen.

After a little research, Craig and I started this Elements program through GMB Fitness, which is a 7-week online training program that uses locomotive exercises and targeted mobility work to help build strength, flexibility, and motor control. I'd highly recommend this program (or something similar) to anyone who is serious about getting their body moving and feeling better. Whether you're an elite athlete or total beginner, you'll absolutely benefit from it.

After finishing Elements, I wanted to find some similar in-person training. I hit the jackpot when I stumbled upon a local studio called Premier Fitness Systems, which offers a class called Movement Project (MP). MP is basically a combination of natural movement/animal flow type exercise, mobility and agility work, gymnastics, and strength (think a lot of bodyweight work, rings, kettlebells, sandbags, etc). I try to make it to at least 3 classes per week, and then lift/condition on my own another 3 times per week. Though my training schedule is apt to change depending on the kind of day/week I'm having, I ALWAYS feel better (mentally) when I get it in. It's my escape/distraction from pain; a reminder that there is still a part of me that can work hard and reap the benefits. That feeling is the emotional fuel I run on to keep chasing my pain. I know that's maybe hard for other people to fully understand. I get that.

More PT 
I spent a few months working with another physical therapist at EXOS (where Craig works). The goal - aside from just getting another set of ears, eyes, and hands on me (because every therapist has a different skill set and you just never know what you might have missed) - was to try to free up my T-spine and just bring down some of the spasm in my neck. We also worked a bit on my hip pain, which I know is coming from my spine, which is all part of what's going on up above. I can't write more about that though because it's overwhelming me. Hah.

Through his referral, I also saw another local PT (Tim Fearon) for a few sessions too.

After going down a rabbit hole of headache research one day, I came across a natural neuron support supplement called Gliacin, which contains a blend of phytochemicals (plant derivatives that have known physiologic effects) derived from Boswellia serrata . I've experimented with many, many, many supplements for my head over the last six years (now I just take a daily multi, fish oil, vitamin D, and probiotic) but was still intrigued by this one because of the data behind it. It boasts a 78% responder rate in clinical trials for a range of headache conditions, including migraines, hemicrania continua, paroxysmal hemicrania, and cluster headaches.

I took Gliacin for a few months at max dose (3 capsules, 3 times/day) but no dice. (If you want to try it, they sell a sample pack but I'd recommend just getting the full bottle since you'll need more than what's in the sample before you know if it's going to help.)

Over the winter, Craig met a neuroscientist through work who has developed a neurofeedback app called Opti Brain. Honestly, I have a hard time understanding exactly how neurofeedback works so I'm going to rely on my trusty friend, the copy and paste (compliments of The Hull Institute).

Our brains, the controllers of our bodies, are intricate systems of chemical and electrical activities with about 100 billion neurons. While we know a lot about how the brain works, there is still a lot to learn. What we do know is that the brain is designed to adapt to changes in the body and our environment and function well at all times. However, for a variety of reasons- genetics and environment- the brain gets "out of whack", so to speak, and does not function as well as it is able. The brain then becomes "dys-regulated". Simply put, a dys-regulated brain tends to be over-stimulated when it is supposed to be calm and under-stimulated when it is supposed to be attentive. Sometimes, the brain self-corrects. When it doesn't, this dys-regulation becomes “the new normal”.  So it makes sense that we should be able to re-train the brain to function optimally, the way it was designed.   In neurofeedback training, we work in conjunction with other treatments. When your brain is better regulated, it allows you to change behaviors and thoughts.

Though I've tried something sort of similar before (Brain State Brainwave Optimization), we figured I obviously had nothing to lose by giving this a shot. Worst case scenario, it doesn't do anything. Best case, it helps to calm down some of the pain signals in my brain.

Opti Train is a feedback program that trains patterns in the brain that lead to optimal performance (they work mostly with athletes). It works like this: you put on a MUSE brain sensing headband (the sensors just sit behind your ears) and then you have this app on your phone that effectively "trains" your brain using audio and/or visual feedback. Your brain patterns control the volume of the music or make the videos play, which is kind of trippy because you're not consciously doing it. So basically, for about twenty minutes per day, I'd sit on the couch with this thing on my head and stare at my phone while listening to one song (luckily Wilco's One Sunday Morning is like three hours long) and staring at a video of wildflowers blowing in the wind. My brain would control the volume of the song and the speed at which the flowers would come in and out of focus. (Trippy...I told you.) You can check out these video demos if you're interested in learning more. 

We were tracking my results (which then get mapped on the sister app, Opti Brain) and Dr. Crews was weighing in to see if there were any patterns in my pain levels and brain activity (see sample map below from Day 4 of recording). I did it for a couple of weeks. It felt relaxing at times, but I eventually stopped when I really didn't feel like it was doing anything to my pain levels. 

Infrared Sauna 
Craig and I had an infrared sauna installed in the house a few months back. Unlike a traditional steam sauna (like the kind you'd find at a health club), infrared saunas use the wavelength of the visible and non-visible light spectrum of sunlight that heats the body normally. The heat from these types of saunas effectively penetrates tissue, joints, and muscles and can be a helpful modality for pain management and improved recovery (among other things).

If you want to check out the relevant research a little more, start here: New hope for chronic pain sufferers infrared sauna therapy shows impressive pain reducing results 

I try to get in the sauna every day for at least 30 minutes but usually a full hour (I probably average about 5 times per week).

Consistent Soft Tissue Work
I've had so much soft tissue work over the years (pre and post-surgery), including massage, dry needling, Traditional Chinese Medicine acupuncture, scraping, cupping, visceral mobilization etc. etc. but it's been a while since I've had it done on a super consistent basis. So for about a month now, I've had several sessions per week with one of the soft tissue specialists at EXOS (from Movement Restoration). From my feet to my head, the goal has been to just restore tissue to it's optimal state in hopes that everything else has a better chance of working the way it's supposed to.

Gravitational Pattern Alignment 
Not too long ago, in a sort of random series of events, I ended up seeing a new chiropractor, Dr. Vetanze, who practices something called Gravitational Pattern Alignment (GPA). The goal of GPA is to correct the weight bearing torso/spine to be right/left equally balanced in the gravitational field in the upright position. I wasn't really seeking this treatment out, but a fellow upper-cervical-spine injury-related-headache-sufferer that I met through my blog (who lives in NY) had traveled out to Colorado to see him, and recommended that I pay him a visit. I got in touch with him the next day to find out when we could schedule a trip to Denver, only to learn that he has a second home in Scottsdale just 10 minutes from our house and was going to be there three days later. Hey thanks, universe. I saw him for a few days in a row while he was in town and then a few weeks later when he returned.

While I can't say that the treatment really helped my headache, it did feel good for him to confirm the "stuck" feeling I'm experiencing in my upper c-spine (which feels more severe as my pain increases). I felt a definite release of pressure when he adjusted my occiput, though any sense of relief was relatively short lived.

Upper Cervical and TMJ Physical Therapy
After seeing Dr. Vetanze, I knew I needed to keep pursuing (I mean, I guess I haven't really stopped?)  the biomechanical problem in my cervical spine. Aside from my C1 and C2 no longer being severely unstable (because of the fusion), I don't know what the problem is there, but I know it's driving my pain. I just know it is. It doesn't mean that other treatments and modalities aren't worth pursuing, but I just can't give up on this root problem.

So I dove into this beach read: Temporomandibular Disorders, Head and Orofacial Pain: Cervical Spine Considerations, which led me to learning about the author, which led me to finding the only certified Cervical and Temporomandibular Therapist in Arizona. I saw Andy Moriarty for an evaluation last week. After examining me and getting the scoop on all I've been through, he felt like a lot of my pain and stiffness is coming from above and below my fusion (which he agreed was an absolute necessity to have gone through with). Because my case is kind of the polar opposite of straight forward, it's hard to know just yet what the treatment game plan will be. We'll have to kind of take it one session at a time and see how I respond to each visit. I have several more appointments with him this week. He seems optimistic, so I'm taking his lead.

This isn't the first PT I've seen who specializes in this TMJ/upper cervical dysfunction. Two summers ago, we were traveling to Austin to see Mark Strickland and the dentist who works with (Andy knew exactly who Mark was too) but my anatomy is so different post-neurosurgery so that's why we're still hopeful this could help.

Over the last few years, I've tried all different kinds of medical marijuana to help with my pain (which I've written about before), but when I saw Dr. Vetanze, he recommended a CBD product that he's had a lot of success with and recommended I try (to help relax my muscles while I sleep, if nothing else). I tried a few different doses of this oil (which is totally legal and can be ordered online from any state without a medical marijuana license, FYI) but didn't really feel anything (other than tired). If you have trouble sleeping though, from pain or otherwise, I'd definitely give it a shot.

I also used this topical cream, which is basically like an icy-hot type product with CBD in it. Tip: Wash hands well after and avoid learning the importance of that the hard way.

In early spring, I had a neurology appointment with Dr. Dodick's PA, Kathryn Barr. This was our first time meeting with her, and she was amazing. She sat with Craig and I for 2.5 hours and went through my entire treatment history to see if there was anything at all that had been overlooked or was worth revisiting.

The first order of business was to order an MRA and MRV of my head (like an MRI to look specifically at blood flow and images of normal and diseased blood vessels). She seemed surprised I had never had them done before. I went in to the hospital a few Sundays ago to get the tests done, but, fun fact: apparently my increased pain has made me incredibly claustrophobic (despite having megadosed on CBD oil beforehand in an effort to mellow me out) and have panic attacks when this little thing goes over my face before going into the machine. So my 90 minute test lasted about 15 seconds and now I have to go back and get it done under sedation. Hah.

*side note: My friend was surprised that Craig stood by to document my anxiety when I showed her this photo. So I'll clarify here - this is a stock image I found of what an MRA/MRV setup looks like. 

Kathryn also wanted to revisit Botox, which I had initially tried four years ago with Dr. Dodick. She thought it was worth injecting a few additional sites that have been known to help with headaches, like my masseter (i.e. cheek) muscles, which I didn't have injected before. So last week I went in for my first round, which will be repeated in another three months, and then another three months after that. Here's a breakdown of the injections:

200 units from lot C4375C3, expiration date 10/2019, were injected in the following pattern:
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.
10 units in 2 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.
15 units in 3 injection sites left suboccipital/lower trapezius,
follow the pain
20 units in a total of 4 injection sites in the cervical paraspinal muscles
30 units divided evenly across a total of 6 injection sites in trapezius muscles

She also wants to try an auriculotemporal nerve block, which can sometimes help pain in the temporal region. That procedure's not scheduled yet though.

So friends, there you have it. A full time job, didn't I tell you? (And ready for my career change any day.)

But I'll sign off on a happier note with a photo that I captures all of the love overpowering the pain. Every day... no matter how much it hurts.

This guy is my whole world. Each night, without fail, when we get into bed and before we fall asleep, he asks me: Can I get you anything? I already have my glass of water, and my kindle, and my ice pack, so it's really more symbolic than anything. I know he would do anything.