My trip to the Kutcher Clinic

A long overdue headache post comin' atcha. 

When I last updated in June, I talked about microdosing with psilocybin (i.e. mushrooms). I called it quits on that after a month or so. It wasn't making a dent in my pain levels at all and oddly enough, seemed to actually be making me feel worse. How?? Considering the proposed mechanism of psychedelics on the body's serotonin receptors, it makes very little sense that they could make my headache worse. But then again, medical mystery is kind of on brand for me. 

In June, I was also getting ready to head back to Denver for another procedure. As you might remember, I had been seeing Dr. Callen who heads the CSF Leak program at UC Health University of Colorado Hospital. Though no imaging to date had pointed to me having a dural tear that could be causing a leak of my cerebral spinal fluid, there was a chance that an MRI myelogram could tell a differently story.

An MRI mylogram is where they insert a needle into the spinal canal and inject a contrast material into the subarachnoid space using fluoroscopy (a real-time form of x-ray) to get a more detailed picture of the spinal cord, nerve roots, subarachnoid space, and spinal column. The plan, after that, was for me to have a blood patch performed. You can refer back to my previous post if you want to learn more about what that consists of. 

In early summer, sometime between my last trip to Colorado and my scheduled return trip, I had begun working remotely with a new neurologist, Dr. Kutcher, with the Kutcher Clinic for Sports Neurology. This is a doctor we were connected with through Craig's work - he works with many elite athletes and as an advisor to the NFL Players' Association. In my initial appointments with him, it was clear that Dr. Kutcher wasn't super keen to the idea of a blood patch, concerned (understandably so) there was a chance it could make my symptoms worse. With such a seemingly low probability of a leak, I was leaning towards putting that plan on pause, at least until I had tried a few things with Dr. Kutcher. 

But then one early morning in late July (Craig's 50th birthday to be exact!) I had a total random fall hopping off a bench while working out in our garage and broke my foot. I basically just landed on the side of my foot, then fell into (and crushed) a metal box fan. Silly me! Just trying to keep things interesting. I would need surgery the following week - a screw inserted to fixate a fractured fifth metatarsal. At that point, the Denver trip was delayed whether I wanted it to be or not. The whole foot ordeal ended up being quite a speed bump - or series of speedbumps - over the next few months, but I'll get back to that.

I will say, though, spending just a few short months with an injury so visible to the outside world was such a harsh reminder for me of just how invisible my headache really is - the pain that is so, so, SO much worse than any broken bone could ever be. Just the idea that needing to wear a boot on my foot or get around on crutches would be disruptive to my life feels laughable when I consider how my head pain affects how I move through the world. Ooof. 

So anyway, I spent June doing a bit of a treatment reset with Dr. Kutcher. After taking an extensive case history (no small feat), his simplified perspective was that my head pain is not caused by one single driver right now. Yes, there is surely central sensitization at play - a pain loop that's proven incredibly difficult to "turn off." Yes, the topical skin changes (new pics below) appear to be evidence of complex regional pain syndrome (CRPS). Yes, the nerves in my neck are contributing. The pain is central, the pain is peripheral - it isn't a case of either/or. Not really new information, but validation nonetheless. 

                                             

                                             

                                            

Dr. Kutcher pointed out that although I've been on a lot of meds over the years (both traditional migraine medications along with others that target the central sensitization/neuropathic pain), there were some missing from the list. First though, he wanted me to do a GeneSight Psychotropic test, which is a blood test that analyzes how your specific genes may affect the outcomes of different medications - a simple test that allows for a much more targeted approach to medications, compared to the conventional trial-and-error process. It's especially impactful when you consider how expensive and time-consuming trying different drugs can be. It can often takes weeks or even months to work up to the right dose, give your body a chance to respond, and even taper off if deemed ineffective. 

So anyway, I did that test and we started working through some different medications. There was Nurtec, then Ubrelvy, then Zavzpret, which are all calcitonon gene-related peptide (CGRP) receptor blockers aimed at treating migraines. But no dice. And these wasn't my first go CGRP inhibitors. Having already eliminated Aimovig and Ajovy injections, we agreed I'd officially exhausted this class of medications. Then there was Nortryptaline, a tricyclic antidepressant used off label to treat chronic pain. That one came with some ick side effects for me, mostly nausea (but more importantly, no pain reduction). 

Right around this time (early August) I was experiencing massive (f-ing MASSIVE) pain spikes due in large part to my foot surgery. One thing I've learned over the years is just how poorly my head responds to extra inflammation/trauma in my body, from the most simple things like colds/flus/vaccines to more severe like surgeries, childbirth, mastitis, etc. So between breaking the bone, the surgery, and a horrible reaction to the Oxycodone I was given, my head was just absolutely out of control. Unfortunately, that trend continued through the fall. 

I was trying any little thing I could to bring my body into balance - continuing my workouts, daily cold plunging, and a biofeedback technique called HeartMath. Based on the notion that heart rate patterns can affect your mental state just as much as your mental state can affect your physicality. HeartMath uses coherence technology. It's pretty simple - you attach this little device to your body that measures your heart rate variability (HRV), which is a measure of the time variation between heartbeats. HRV is regulated by the autonomic nervous system (ANS). The ANS has an important role in the body's physical response to stress. Specifically, the sympathetic nervous system (SNS), is responsible for the "fight or flight" response. When you live in chronic and persistent pain, your body's "fight or flight" mode never gets turned off.  The goal of Heartmath Biofeedback is to learn to change your heart rhythm to create physiological coherence, to help you feel less alarm and more calm. 

Then in November, I began a course of at-home ketamine treatments. Not my first special K rodeo, but it had been almost a decade since my infusions. For those unfamiliar with it, Ketamine is a dissociative anesthetic. At sub-anesthetic doses, it can be used to help treatment-resistant depression along with acute and severe pain. But it also shows promise in treating chronic pain, particularly neuropathic pain, which is just is a whole other beast. It's been shown to benefit patients suffering from central sensitization and complex regional pain syndrome (CRSP), which we know are at least partial contributors to my chronic head pain. Though the infusions back in 2014 didn't do much to help me, it felt like perhaps it was worth revisiting. 

This time, though, I started with oral ketamine. I opted for sublingual tablets versus jumping straight back into intravenous for a few reasons: I didn't tolerate the IV super well, whereas this is a lower dose. That also makes it more cost effective and a lot more convenient. In November, I began with two sessions per week and was able to schedule them on days where Craig was able to pick Ryan up from school, as it wouldn't be safe for me to drive for the rest of the day. 

My at-home sessions looked like this: Thirty minutes after taking an anti-nausea med, I would get into bed (bedroom blacked out) and place the tablet or troche under my tongue. (I worked up to my prescribed dose over the first few sessions.) I would let the tablet dissolve in my mouth and then keep my mouth closed for about 15 minutes without swallowing. Then I'd spit it all out into a cup. Seems like an odd way to take medicine but the reasoning here is that when you swallow ketamine, it undergoes first-pass metabolism in the stomach and liver, where it's converted to something called norketamine. Norketamine, though still psychoactive, isn't as potent as ketamine. If you do swallow it, you'd likely need a higher dose to achieve the same the same therapeutic effect. 

So anyway, around the time that I'm spitting it out is when I'm starting to feel...mmm, on drugs? I quickly get my earbuds in and click "play" on the recommended Spotify playlist, close my eyes, and relax my head onto a cold icepack atop my pillow (the ice is my personal touch - I never lay in bed without it). What happens from there is hard to describe and it does change a bit from one session to the next. The first day I really hated it. I've never enjoyed feeling like my mind is entering an altered state and there's nothing I can do to stop it. But it's gotten much easier with subsequent treatments, now that I have some general expectations.  It feels a little like dreaming without being asleep. A trance-like state, I guess. The "high" lasts only about an hour for me, though I usually turn off the music and try to sleep or at least rest in bed for an additional 45-60 minutes. I feel pretty gross for the next few hours, though. Wiped out and a little hungover feeling. But that seems to subside by the next morning. 

I finished up my course of Ketamine treatment by early December but was unsure of whether to continue. I was sort of having a more normal (ie baseline pain) few weeks, but there seemed to have been so many other variables affecting my pain leading up to that too, so it was hard to know. And there was about to be another hiccup.

After several months of physical therapy, my foot wasn't healing super well and it was clear that the screw needed to come out. Again, totally straightforward surgery but it took another huge toll on my head. This time, I wasn't touching a pain killer but that didn't seem to matter. And then the week after, I came down with an upper respiratory infection that progressed to pneumonia. All things that are a nuisance but it was like my headache was just taking one hit after another. And once my pain had reached this peak, it was just unrelenting. January was one of the hardest headache months I've had in the last 13 years. I was waking up in the morning and falling asleep at night at a level of pain that has been reserved for the worst moments of my worst days. Completely unsustainable but also....what was option B? We had some really stormy weeks here too, and as much as I crave a cloudy day in the desert, the shifting barometric pressure was adding fuel to the fire. 

Towards the end of January, Craig had something called the Ammortal Chamber come to his work that I tried out for a few sessions, hoping it might help break this cycle I was stuck in. It uses a combination of pulsed electric field (PEF)/pulsed electromagnetic field (PEMF), red light photobiomodulation, molecular hydrogen, and vibroacoustic therapy. Super relaxing. And defying all odds, my headache spiked even more. (Actually not my first time I've had a negative response to red light therapy, which baffles any practitioner I talk to due to the ability of red light to increase blood flow and reduce inflammation.) Again, it makes very little sense how that could worsen my headache. 

In mid February, I decided to start a second round of weekly ketamine. Though some people do have profound and fairly immediate relief from Ketamine therapy, it also isn't uncommon for it to take more time. And now that I had some distance from my surgeries, I wanted to give it one more shot. 

Then that brings me to early March, when I traveled to Park City to meet with Dr. Kutcher in person. Telemedicine is so wonderful, but there are some things that just can't be accomplished with a screen between you. 

One of the reasons Dr. Kutcher wanted to see me in person was for some cognitive testing. My palms get sweaty just writing those words, so you can imagine how imagine how I feel going into it, hah! All kidding aside, the testing we did was quick and painless (nowhere near as draining as all of the brain mapping I had done a while back at the Brain Resource Center in NYC.) He uses an assessment tool called NeuroCatch, which evaluates brain activity using event-related potentials (ERPs). 

"ERPs are long-standing extensively studied brain activity responses linked to cognitive function. These vital responses allow for objective evaluation of Auditory sensory, Basic attention, and Cognitive processing, which can be used to optimize individual brain health and guide brain care in conditions like brain injury, mental health disorders, and neurological diseases.

ERPs are a “brain fingerprint” of cognition. They have been rigorously studied and validated in over 150,000 medical publications. They increase the accuracy of existing subjective cognitive evaluations. They are sensitive to external factors such as sleep, stress, and fatigue/inattention[1]; yet they are impervious to user bias that attempts to hide the effects of a head injury, for instance."

From my perspective, the test consisted of listening to a variety of sounds and cognitive stimulation in the form of spoken words pairs. I had to pay attention to the auditory stimuli while maintaining visual focus on a set point on the computer monitor. 

So how did I do?  

Much to my surprise, pretty good. From an auditory and cognitive processing standpoint, my amplitude was fine and my latency was quick. He was actually a little taken aback by how quick and explained that the brain responding "too quickly" could potentially indicate that the wrong areas are firing. 

Next, I headed into the gym for what was arguably the least pleasant part of my visit. The goal here was to taken me through a series of exercises that would purposely flare my symptoms by overstimulating my brain. Here was the recipe for that fun experiment:

1. Music turned on

2. Me, standing in in a 4-square layout on the gym floor, following instructions to jump forward, back, jump 180 degrees, jump 360 degrees

2. While following jumping instructions, counting backwards from 100 to zero by multiples of 7 

3. While following jumping instructions, catching a multi-colored object with whichever hand was called out by whichever colored portion of the object that was called out 

Let me just pause here and remind you that when my pain levels are spiked, my brain feels like it will explode if two people start talking to me at one time. So it goes without saying that this part of the afternoon really...fucked me up. 

Which was the goal! Because next my eye movements were assessed again to measure any chances with an increase in pain and general feelings of dizziness. And they weren't majorly affected. This indicated that visual input doesn't seem to be a major driver and the inefficiency of my vestibular system is a more likely culprit.

He also had me take 2 Nurtec that evening (one of the CGRP migraine abortives I had tried months ago) just to see if made any sort of dent (which it did not).

So overall, what information did all of this testing provide? According to Dr. Kutcher, there are two primary "flavors" of central pain: hypersensitivity (meaning the part of your brain that processes pain is super efficient at doing so) and structural changes. He thinks that for me, hypersensitivity is a bigger issue than structural changes. So where medications like serotonin uptake inhibitors and even drugs like Ketamine are still worth pursuing in an effort to make structural brain changes, retraining of the brain through vestibular therapy will be most important for me. 

On my second day at the Kutcher Clinic, I met with the vestibular physical therapist. His assessments made it pretty darn clear how off my vestibular system is. As an example, he'd have me do things like stand and look at the wall in front of me, close my eyes, then have me turn around and stop/open my eyes when I thought I had returned to my starting position. I didn't excel here, to put things lightly. You would have thought I was failing a roadside sobriety test. 

So the plan right now is to focus on some proprioceptive work in an effort to recalibrate my vestibular system. I have a program to do from home that consists of basic eyes-closed movements and sensory motor control exercises, like using a laser attached to my forehead to trace my eye movements through this maze while balancing on one foot, moving forward/backward, side to side, etc. 

I've seen vestibular specialists at Mayo before, but that was well over a decade ago and at that time, it was more to rule certain things out. This will be my first time really focused on a vestibular rehab program. 

Dr. Kutcher agreed I should finish out this current Ketamine protocol (yesterday was my last day on it) and if there's been no improvement (which there's not seeming to be), he'd like me to try a medication called Lamictil (an anti-seizure med but another that's used off label for neuropathic pain). He also did a series of anti-inflammatory trigger point injections just to see if those would do anything. I've obviously had injections like these many times before so we weren't super optimistic. And they didn't do anything.

I think that about sums it up for now. I'm hopeful that this vestibular rehab will be a step in the right direction at the very least. Just one step is all I need right now. 

And since I always like to leave it on a happy note, signing off with this one. She might be part of the reason I'm exhausted by 7pm but she's definitely the one who gives me energy to get through my hardest days. The brightest light for me (and anyone who meets her).

CGRP, CSF leaks, and microdosing, oh my!

 Earlier this week, I returned from Denver. I was there for a consultation with Dr. Andrew Callen, neuroradiologist and director of the CSF Leak Program at UCHealth University of Colorado Hospital. I realized on the trip that I was long overdue for a blog post. It's been 9 whole months since the last update, and I guess I've been putting it off waiting for some incredible breakthrough to report. Have I learned nothing? 

When I started writing this blog in 2013, it was intended as a way of updating friends and family about the treatments I was pursuing for the post-traumatic headache I had sustained a year and a half prior. The headache I was taking a "temporary" leave of absence from my job to tackle head on (pun intended). 

Next week marks 12 years. My headache is a fucking preteen. I can hardly stop long enough to let that sink in. Mostly because I can't afford to let it bring me down. My physical pain has got that one covered. 

The last six months have been hard. Really, really hard. Pain levels spike but don't come down. Baseline "norms'' are recalibrated and the cycle continues. There have been many nights this year where I've laid in bed, numb with ice packs from the base of my skull to my eye sockets, contemplating a trip to the ER before inevitably deciding I can't possibly sit in a waiting room for who knows how many hours only to be given an infusion that does. not. help. I'm honestly not sure which is worse: falling asleep to the feeling of a drill going through my temples or waking up the next morning enveloped in the same agony. Agony that is entirely consuming of my life yet equally invisible to the world around me. 

A few months back, I was listening to this podcast discussion about the topic of "loving your body." The hosts were discussing the topic within the context of body image, but it struck a real cord with me nonetheless. Made me think about my (complex) relationship with my own body. There's this quote from Glennon Doyle. She says, "Your body is not your masterpiece - your life is…

...It is suggested to us a million times a day that our BODIES are PROJECTS. They aren’t. Our lives are. Our spirituality is. Our relationships are. Our work is. Stop spending all day obsessing, cursing, perfecting your body like it’s all you’ve got to offer the world. Your body is not your art, it’s your paintbrush. Whether your paintbrush is a tall paintbrush or a thin paintbrush or a stocky paintbrush or a scratched up paintbrush is completely irrelevant. What is relevant is that YOU HAVE A PAINTBRUSH which can be used to transfer your insides onto the canvas of your life — where others can see it and be inspired and comforted by it. Your body is not your offering. It’s just a really amazing instrument which you can use to create your offering each day. Don’t curse your paintbrush. Don’t sit in a corner wishing you had a different paintbrush. You’re wasting time. You’ve got the one you got. Be grateful, because without it you’d have nothing with which to paint your life’s work. Your life’s work is the love you give and receive — and your body is the instrument you use to accept and offer love on your soul’s behalf. It’s a system."

What a poignant perspective, right? I can almost feel myself nodding along just reading that. Except that... when you live in pain...when pain infiltrates every waking (and sleeping) moment of your existence, where does your body end and your life begin? Where does your pain end and your body begin?

It is fucking messy. And it's something that I struggle with every day. I can repeat positive mantras like "I am not my pain" all day long, but my head pain physically exists inside my skull. How do I reconcile that my own body is both the hero and the villain of the same story? That it's both capable of and responsible for defeating this thing that in so many ways, steers the ship. How do I muster the emotional, mental, and physical strength to fight something while simultaneously making peace with my own reality? I don't have the answers. But I suppose it's why I keep trying to prove to myself that this physical body I am moving through the world in is good, is able, is strong, even when (especially when) my pain is screaming otherwise. The fake-it-til-you-make-it brand of resilience, I guess. 

To be totally honest, every treatment/therapy/medication that I burn through really takes a toll. An emotional rollercoaster of hope and defeat, hope and defeat. Even still, the landscape of headache medicine (especially given the 12 years I've suffered) is ever evolving, and it keeps me optimistic to learn about new developments in the treatment of this debilitating disease. 

One of those treatments is psychedelics. As you may well be aware, there's been an absolute explosion of new research into a wide range of therapeutic uses for psychedelics. And chronic pain and migraine/cluster headaches have been one really interesting area of focus. You may remember reading about my ketamine infusion back in 2014 (fucking wild, by the way). But until recently, I had zero experience with microdosing.

Microdosing, by definition, is the practice of consuming very low, sub-hallucinogenic doses of a psychedelic substance. In the case of psilocybin mushrooms, that's 0.1-0.4 g. The tough thing (aside from the obvious challenge of accessibility due to the fact that they're not yet legal), is there's just a lot of trial and error involved. Strain, dosage, frequency, time of day - you know, all of the known variables we take for granted with prescription medications. So I haven't thrown in the towel yet, but I certainly haven't felt any benefit either. 

If you're interested in learning more about psychedelics and chronic pain, here are a few articles to start:

Repeat Dosing of Psilocybin in Migraine Headache

Yale Research on Psychedelics Gives Hope to Headache Disorder Community

Are psychedelics the answer to chronic pain: A review of current literature

So Dr. Callen leads a collaborative team of radiologists, neurologists, and neurosurgeons to provide cutting-edge testing and treatment for those suffering from the condition. Like I mentioned, long held belief in neurology has been that a CSF leak is ruled out by a normal brain MRI. (It's the reason that it was crossed off the list for me at Mayo over a decade ago.) Only since 2014 has a type of called a CSF-venous fistula (CVF) been discovered. 

To clarify, spinal CSF leaks originate from dural weakness (dura is the outermost layer of connective tissue that surrounds the brain and spinal cord) and meningeal diverticula at the surrounding nerve root sleves (which are called cerebrospinal fluid-venous fistulas, or CVFs).  Located  mainly located in the thoracic region, CVFs are defined as "abnormal connections between the spinal subarachnoid space and adjacent paraspinal veins that allow unregulated egress of CSF into the venous system." Cerebrospinal fluid (CSF) venous fistulas are a recently discovered and underdiagnosed cause of spontaneous spinal CSF leak, which may lead to spontaneous intracranial hypotension.

Over the last year, I've continued to show signs of complex regional pain syndrome (CRPS), which manifests through these topical skin changes. Here - I'll throw a collage in just for fun. CRPS indicates a malfunction of the central and peripheral nervous systems and in my case, we think has developed as a result of my head pain persisting for so long. How messed up is that? The more chronic a pain condition becomes, the more sensitivity becomes central. It's a cycle proven incredibly difficult to break. 

I don't experience these skin changes every time I'm in an incredibly severe head pain flare...but every time I experience skin changes I am in an incredibly severe head pain flare. It typically gets very blotchy and sometimes streaky - often concentrated at least to some extent in that spot on the left side. The skin sometimes peels and sometimes opens and just sort of feels like it's burned. So weird. 

Now on to some treatment updates:

Last fall, I began seeing Dr. Rau. As member of the Spinal CSF Leak Foundation's advisory board, she's one of the few neurologists in the country really dialed in to the latest research and treatment of CSF (cerebral spinal fluid) leaks. She also just happens to be local, which has been great. While we were navigating the leak stuff, I began some other treatments with her.

After six years of fertility treatments, pregnancy, and breastfeeding, I've finally been able to try two different calcitonin gene-related peptide (CGRP) monoclonal antibodies, or CGRP inhibitors. CGRP inhibitors are drugs that block CGRP from binding to CGRP receptors, a key contributor to nerve pain and inflammation of migraine. Ajovy was the first one I tried. Here's an enthralling capture of my first at-home injection. I continued these for 3 months (no improvement) before Dr. Rau prescribed me another CGRP inhibitor called Aimovig. I'm due this week for my second round of Aimovig but so far....well, you can probably guess. 

If you remember from my last post, I had consulted last year with Dr. Schievink, director of the CSF Leak program at Cedars-Sinai. After a review of my imaging, Dr. Schievink didn't see evidence of a dural tear. But Dr. Rau wasn't convinced it was worth writing off the possibility completely. Apparently, 20% of leaks show normal brain imagining, which is kind of shocking. That's why put me in touch with Dr. Callen and the CSF Leak program at UC Health University of Colorado Hospital.

Real quick, if you're wondering how exactly a dural tear and subsequent leak of CSF causes a headache, here's a good explanation from Johns Hopkins: 

"The brain normally sits inside a bag filled with spinal fluid that extends down from the skull into the spine. The bag consists of membranes called the meninges (as in meningitis). The fluid helps to circulate waste products out of the brain and provides cushioning and support. When the pressure of this fluid is too low typically when there is a small leak somewhere in the meninges — the brain may sag downward when the patient is upright, stretching the meninges and nerves lining the brain and causing pain."

CVFs require a special type of testing called dynamic myelography to diagnose. 

Despite not yet having a full workup, Dr. Callen has been honest with me. He's doubtful (but not certain) I have a leak.  This shouldn't really surprise me, especially since there's never been orthostatic component to my pain (head pain worsening upon standing, improving with lying down). With that said, it seems like he knows enough to know there are few absolutes. He even said during our visit "This disease has humbled me." Though the probability is low, there is still a chance I am leaking. And when you've suffered this badly for as long as I have, you cling to single digit probabilities because sometimes that's all you have to cling to. 

The plan right now is for me to travel back to Denver in late summer for an MRI myelogram. I've actually never had this specific type of imaging done before. Here's what will happen: they'll insert a spinal needle into my spinal canal and inject contrast material in the subarachnoid space using fluoroscopy (a real-time form of x-ray) to get a more detailed picture of the spinal cord, nerve roots, subarachnoid space, and spinal column. After that, I'll have a blood patch performed. 

For the blood patch, I'll first get an IV inserted. Once in the procedure room, I'll have a CT-guided lumbar performed at a specific site. The blood they obtain from my IV will then be injected into the spinal needle in an attempt to "patch" a leak (if there is one). The tricky part will be the blood patch recovery. I'll need to lay as close to absolutely flat as possible for 72 hours (I can get up briefly to go to the bathroom and sit up to eat). If I don't feel an improvement in the weeks/first few months after my blood patch, we feel confident we can eliminate a leak once and for all and figure out what the next step is from there. As always, one day at a time. 

September updates

Hi friends. It's been half a year since my last post. Six whole months since my stem cell procedure in Grand Cayman. So... did the long awaited intervention help? I'm devastated to say that as of now, no. Not even a little bit. 

I hate more than anything to start this off on such a low note, but the last few months have been some of the most challenging of the last decade for me. The only way I can describe my head pain has been just out of control. But I'll get to that.

I'm thinking back to spring and it's sort of a blur. I worked through the recovery protocol from my March procedure. In my last post, I outlined the phases of tissue healing. Here now in month six, I'm closing in on the end of remodeling, when the tissue should be constantly improving to become stronger, functional, and closer to normal. Technically, full healing can take up to a year with peak functionality at 1-2 years, but full transparency: it's hard to feel optimistic at this point. 

I returned to some physical therapy in those following months too to help return some necessary foundational strength and function to my cervical spine. 

 In April, I explored some form of structural integration therapy that didn't go well. It's not worth getting into the details, but suffice to say it was just another exhausting example of a practitioner trying to fit a complex problem into their sellable solution. 

Not long after, I had a few appointments with a new physical therapist with a cranial sacral focus. She uses different manual techniques to access connective, visceral, neural, muscular, and fluid tissue. It's almost hard to believe my body could respond this way because the therapy is so incredibly gentle, but sure enough, it flared me right up. Horrible-electric-mixer-in-brain feeling. It's hard to even describe because it's so much more than pain. If you've been around since the beginning, you know that's exactly how I responded to cranial sacral back in 2013 - it's what led us to suspect a dural tear (the dura is the connective tissue that covers the brain and spinal cord) and check for a resulting cerebral spinal fluid (CSF) leak. That was ultimately ruled out with MRI. 

I also consulted with Dr. Peled (my occipital nerve surgeon) about the possibility of trying another round of blocks to explore whether a frontal surgery was warranted. The pain in my supraorbital region (above my eyes) and temples has just been so, so intense. The problem is that the same level of pain is also widespread. Over the top of my head and down into suboccipitals. I just don't have a great degree of confidence right now that cutting those nerves in front would make a significant impact. And the reality is that even when we've identified damaged nerves, tissues, joints, I have had a favorable response to exactly ZERO procedures I've undergone over the course of 11 years. How is that even possible? So while I'll never be afraid to undergo another surgery, I can't say I'm overly hopeful either.

In July, Craig and I finally made it to the Brain Resource Center in NYC. (Our failed attempt last summer got us as far as the tarmac in Boston.) The BRC is a brain wellness and optimization treatment center. It's run by Dr. Fallahpour, a clinical psychologist and neuroscientist, who uses brain-computer interface technology and neuroscience research to treat a variety of psychological and neuropsychological disorders, including anxiety, depression, ADHD, chronic pain, and brain injuries. 

We're working off the assumption that central sensitization is, at the very least, contributing in some way to my intractable chronic head pain. What that means, in a nutshell, is that when you're in chronic pain, the parts of your brain that experience that pain undergo physical changes. As more and more neurons are recruited, those pain processing regions become hypersensitized (essentially "better" at feeling pain). I guess you could think of this as the really shitty part of neuroplasticity, or the brain's ability to change and adapt as a result of an experience. Keep in mind, this isn't referring to the "mind" changing in some conscious way, rather, literal structural changes occurring in the brain. On the flip side, if the brain's structure can be changed through some sort of therapeutic intervention, central pain can be disrupted. That's really the idea behind this sort of treatment. 

We spent a few days at the Brain Resource Center. The first day was the most "demanding" on this old noggin of mine. She certainly doesn't work like she used to, I'll tell you that much. I underwent a comprehensive brain map assessment (quantitative electroencephalography) to measure the electrical activity of my brain while engaged in a series of cognitive tasks. That gave them a visual representation of the parts of my brain that were over or underactive. And then based on those patterns, they designed a neurofeedback program that was intended to help me learn to rebalance my brain activity and ultimately/hopefully decrease my pain.

My brain map results showed two primary areas that are underactive. The first is my anterior cingulate cortex, likely due to pain and persistent attention to pain. This part of your brain is what directs and manages attention. So the more "tuned in" I am to my pain, the more that area physically grows. I work so hard (so f-ing hard) to stimulate my body and mind in ways that detract as much as humanly possible from my headache (example: the importance of my workouts) but emergency room level pain is just straight up impossible to "ignore." The second part was my sensorimotor cortex, which is involves in pain perception. 

Sooo... yes, brain map checks out. 

In terms of my cognitive performance tests, I scored in the normal range but my visual memory was lower. That's to be expected given how chronic pain affects memory. It also explains why my not-even-3-year old legitimately kicks my ass in her memory card matching game on a daily basis. 

I spent the next couple of days there doing the actual neurofeedback treatment and left NYC with a computer to take back home to Arizona. I spent the next month and a half doing virtual neurofeedback treatments. From Monday-Saturday, I would spend Ryan's afternoon naps with headphones on and electrodes on various locations on my scalp. My response was....bizarre. In the first full week, I had several days in a row of lower-than-normal pain. That was a REALLY big deal. We were all super encouraged. Then, things took a turn. For the next 6 weeks, every day was worse than the last. My pain intensity was reaching new highs and staying at those levels for new lengths of time. Truly terrifying. Dr. Fallahpour was working to tweak the protocols of my treatments and not quite understanding why my brain was responding this way. He explained that in some complex cases, it's not uncommon for the brain to go through an initial "resistance" but that things typically stabilized much sooner. I knew it was important that I gave this a fair shot, but ultimately, we all decided I needed to stop. 

A separate potential treatment that we'd initially discussed with Dr. Fallapour was TMS, or trans cranial magnetic stimulation. TMS therapy involves using a magnetic filed to stimulate underactive neurons in specific parts of the brain. It's most commonly used (and FDA approved) for mental health conditions like depression, anxiety, and even certain addictions. There's also research supporting its use in the treatment of chronic pain (though not FDA approved). Back in 2014, my Mayo neurologist, Dr. Dodick, had me try a handheld single pulsed TMS device that he was using in a study on migraines and cluster headaches (a study I didn't qualify to participate in but he was kind enough to let me take home a unit to try). Unfortunately, the single pulsed TMS didn't help me but it's also much different than regular TMS, where you're getting something like 50 pulses per second. 

TMS Therapy is a commitment - patients typically undergo treatment for a minimum of 5 days per week for 4-6 weeks. Similar to neurofeedback but I would obviously need to be in office vs remote. So if I do try it, I'll need to wait until Ryan starts school later this fall. I do think it's worth a shot, but I'd be lying if I said my response to neurofeedback wasn't a real blow to my already compromised mental state. 

While in NYC, Craig and I made two more stops. (And walked I think 50 miles?) The first was another neurologist who Dr. Fallapour had recommended we see. Dr. Mauskop  is the director and founder of NY Headache Center. We were grateful that he was able to squeeze us in on such short notice, but I wouldn't say we came away from the appointment with any novel insights. He agreed my pain is a result of central sensitization and supported my treatment path at the Brain Resource Center. Conversations like these are so frustrating for me. On the bright side, there's an element of validation when doctor's "agree" on something. But it can also feel like what they're agreeing on is "we don't know." It can just feel like gut punch reality check that nobody - not even the best of the best - knows how to really and definitively help me. 

Our second stop was a visit with Dr. Dodick, who left Mayo last year to become the medical director at this really incredible concierge medicine clinic that is basically bringing together the world's leading medical minds + cutting edge science and technology with a vision of ultimately democratizing access to preventative medicine on a global scale. (He is just a hell of a doctor). He gave us a tour of their facility and we had a chance to catch up on all that's been going on since I last saw him.

He gave me the name of a neurologist at Mayo he'd want me to see since I do need to reestablish with a new one there. (I've since made an appointment with Dr. Green for December). We also chatted about some pharmacological options that I'm waiting until I'm done breastfeeding to pursue, including monoclonal antibodies. These are human-made antibodies (proteins) that bind to other proteins in your body. In migraine patients, these medications attached to calcitonon gene-related peptide (CGRP), which is a protein that can impact migraines by widening blood vessels in the brain. He also told us about new research into microdosing with psilocybin (i.e. magic mushrooms) and lysergic acid diethyalmide (i.e. LSD) to treat migraine and cluster headaches. Again, I'm not a typical "migraine" patient, but without the luxury of a meaningful diagnosis, I just can't afford to leave any stone unturned. 

Let's see. What else...

In late summer, I found myself reading more and more about CSF leaks. Not a new topic for me - remember I said we had ruled out a leak back in 2013? I had mentioned Dr. Scali in my last post - the researcher who had first reported the myodural bridge (the tissue connecting the suboccipital muscles and cervical spinal dural mater) back in 2011. He had just recently published and kindly shared with me his manuscript titled The relationship between the myodural bridge, vertebrodural structures, and idiopathic cerebrospinal fluid leaks in whiplash injuries. I became convinced that there just has to be something going on with my CSF that explains not only my response to cranial sacral therapy but my lack of response to...virtually everything else? I scoured the internet reading story after story of CSF leak patients who didn't fit the classic symptoms of a leak: orthostatic headache (meaning the pain is severe when upright but disappears when lying flat), clear fluid leaking from nose or ear, etc. 

I contacted a neurosurgeon at Cedars-Sinai, Dr. Wouter Schievink, director of the Cerebrospinal Fluid Leak program, who I had learned was the go-to guy. I compiled a decade's worth of medical records - no small feat - and mailed them to Cedars. He would review them (free of charge, which is so kind) and let me know if an in-person visit was necessary. Six weeks later, I was leaving a Mommy and me playtime at a local gymnastics gym. I buckled Ryan in then did that thing that all parents do where you check at least two things off your day's to-do list in the walk from the backseat around the trunk to the front (IYKYK). I had an email from Dr. Schievink in my inbox. I held my breath as I read the words. "I see no evidence of a CSK leak." FUCK. I felt that familiar lump in my throat as I fought to hold back tears. 

Don't get me wrong. It should be a relief to know I don't need a epidural blood patch or another neurosurgery but at this point I am just so, so, SO desperate for an answer. 

A few months back, I had scheduled an appointment with a local neurologist, Dr. Rau, who's a member of the Spinal CSF Leak Foundation's advisory board. Her name had come up in some of the online CSF leak groups so I got on her calendar at the soonest availability, which is October. In his email, Dr. Schievink noted that she's an outstanding headache doctor and very knowledgeable about CSF leaks, so it of course never hurts to get another opinion. He also mentioned that most spontaneous CSF leaks are located in the thoracic spine (most of my imaging has been cervical).

So. 

That's kind of where I'm at right now. Many days (and nights, unfortunately) are brutal. Others are more manageable than others. As always, there's no real rhyme or reason to it, which is just a real mind fuck. (Sorry, I just googled a synonym for "mind fuck" but it turns out this is the best way to communicate the feeling). I try to stay focused on what I can control. My routine and environment are a big part of that. But unfortunately, they're not enough. The majority of mornings, I wake up with a vice grip around my head. Drills going through my temples. A deep and unrelenting ache into my eye sockets, across my forehead, and over the top of my head. The feeling like someone has taken a baseball bat to the base of my skull. And that, friends, is how my day starts. I work out first thing because feeling stiff seems to just take things from worse to whatever is worse than worse. And then I cold plunge. From there, it's full steam ahead because it's the only option there is. The second Ryan is down for her nap in the afternoon, I'm back in bed with my ice packs. When I sleep at night, it's not uncommon for me to cycle through 6-8 of them before morning. 

Chronic pain weaves this complex web through every facet of your existence. And with every passing hour, day, week, month, and year - you feel more tangled in it. Trying to find the balance of living and enjoying life while constantly and carefully monitoring where and how I spend my energy in order to not suffocate from physical pain is ... exhausting, consuming, depleting. And also just my reality. 

Just last weekend, Craig, Ryan and I grabbed an early lunch at a local fast casual restaurant. We arrived just after they opened at 11 am and were quite literally the only people inside. But the music from their speakers was loud.  I had already woken up with high pain, but by early afternoon, the spike was just out of control. Should I go to the ER right now? Their migraine infusions have never helped me. So I don't go. 

Despite all that bullshit, I whole heartedly believe that the worst thing that someone in chronic pain can do is exist solely as a person in chronic pain. So I lean in with all my might to every other part of my life. Mostly, my role as Mommy. I soak up every waking moment with Ryan. We play, we read, we cook, we ride bikes, we chat, we swim, we color, we do science experiments, we run errands, we go on adventures, we do nothing, we do everything. And I am just so grateful to have this fleeting time with her. Parenting may be hard work, but for me, motherhood is not the struggle. It is the escape. And if my eyes don't well up every time she puts her hand on my arm and asks me how my head is doing..  Just this morning Craig stood behind my chair at breakfast to rub my neck for a few minutes. No words had been spoken to her about the morning I was having but Ryan looked at me and in her sweet, gentle voice said "Mom, I'm sorry you're not feeling good."  

Craig and I have also spent the last year writing a children's book, which we're currently in the process of publishing. We are so excited about this book. It's been quite a learning experience and a real labor of love. Stay tuned for more on that! 

I'll wrap up this already-too-long-of-a-post with a final thought. I recognize that it's hard to support someone battling pain the way I am. Of course it's never easy to watch someone you care about suffer, but the support system protocol is a little more intuitive following an acute injury or recovering from a surgery, let's say. But a random Tuesday afternoon in the 132nd month of their headache? There's no handbook for that. (Although if there was, it'd be because my husband wrote it.) I'm so lucky to be loved and cared for so hard by Craig. He supports me in every possible sense of the word - in ways you can't possibly know exist unless you've endured something like this. But I also realize that when you don't know what to say to someone who is suffering, the path of least resistance is to say nothing at all. I get that. So I'm incredibly grateful for the people in my life - some I know well, and some hardly at all - who make the effort to overcome the discomfort or uncertainty of saying the "right" thing and just say something. Please know how much I appreciate you. 

Regenexx Cayman Update

Friends! I have EXCITING news!

As of last Friday afternoon, my mesenchymal stem cells...the ones that were aspirated from bone marrow in my pelvis in November of 2019, cultured, and cryopreserved in a lab on a Caribbean island for the last 2.5 years...are INSIDE my body. Inside my body getting to work to heal and repair damaged tissue that (fingers crossed) will ultimately help my head pain. 

Before I get into all the details, let me take a step back.

Way back in fall of 2018, Craig and I traveled to Colorado to see Dr. Centeno, founder and chief medical officer of Regenexx. Regenexx is a world leader in the field of orthopedic regenerative medicine based on scientific publications (Regenexx physicians have published over 44% of all orthopedic stem cell research) and is arguably the world's most advanced platform for in-office interventional orthobiologics. Dr. Centeno diagnosed my damaged facet joints via physical exam, MRI, digital motion x-ray, and x-ray guided blocks. He injected my facets with a low-dose cartilage-friendly anti-inflammatory + anesthetic, and could see it leaking straight out of the joint capsules. The damage was obvious. 

(Here's a little visual reminder of what the facet joints look like)

To help my facets, we started by injecting PRP (platelet-rich plasma therapy) into those joints, which yielded no relief. 

At that point, treatment with Regenexx was paused for a bit while I began the journey that is fertility treatment. They were resumed shortly after giving birth to Ryan. In November 2019, when Ryan was just 7 weeks old, the three of us flew to Dr. Centeno's Regenexx clinic in Grand Cayman. The reason we decided to skip a stem cell procedure in Denver and head straight his clinic overseas is because...

The procedures he performs in Colorado are same day (Regenexx SD), meaning the cells must be extracted from the body, cultured, and reinjected into the body all in the same day. Anything beyond that, and the FDA classifies those stem cells as a manufactured drug. In Grand Cayman though, they're not legally bound to the same time restrictions. Regenexx-C is able to culture those cells for an extended period of time. After the cells are extracted from the bone marrow aspirate, cell biologists culture-expand your stem cells, closely monitoring their health and growth rate. The end result yields up to 1,000 times the number of stem cells compared to other procedures. Once the culturing process is complete, samples are sent to an independent lab for sterility testing and karotype analysis (to ensure the cells haven't acquired any genetic abnormalities during the process). 

It's essentially the gold standard of stem cell treatments. And given the complexity of my condition and considering that either treatment is a huge out of pocket expense, it's just always made more sense for us to bypass the same-day U.S. procedure and go straight for the one that has the greatest chance of helping me. 

So if you've been following along for some time, you know that I had my BMA (bone marrow aspiration) in November 2019 and was scheduled to fly back in March 2020 for reinjection. Because you are a resident of planet Earth, you also know what happened in March 2020. Travel shutdowns to the island happened literal hours before our flight. Our suitcases were packed at the front door when we got the phone call. It was devastating. Of course at the time, I don't think anyone could have predicted it would take another 24 months for restrictions to lift. Grand Cayman is such a small island. Despite their local economy's reliance on global tourism, they couldn't afford to let Covid in. 

When we finally got the green light to book this trip, the island was in a phase of reopening that precluded those unvaccinated from entering (even children who are not yet eligible). Since that meant Ryan wouldn't be coming, Craig and I decided that it made the most sense for the two of them to stay home while my parents would fly in from Massachusetts to meet me. 

Back in February, Grand Cayman entered their next phase, allowing unvaccinated children to enter with their vaccinated parents. But between my treatment schedule and recovery time, it still seemed (and was) a heck of a lot easier for Craig and Ryan to stay behind. For Ryan, eight days without Mommy was....drumroll...a total breeze. Hah! So much for all of my worrying. I think it helped that we've been planning and talking about this trip for so long. And Ryan is just so aware. She understands that my head hurts and that I see doctors who try to help me feel better. She always asks, unprompted, how my appointments go. Sometimes at bedtime, she uses her little hands to give me "neck massages." And she understood how important this trip was for our family. 

Looking back on the last two years, I'm able to appreciate the gift of time a little more. My most recent surgery in November 2021 (my third occipital nerve surgery, if you're keeping track) was 200% the right decision to make. Dr. Peled cut both my right and left lesser occipital nerves. I'd already had those nerves cut in a previous surgery, but this time around, he tackled an aberrant branch of those nerves - branches not present in every patient (about 10% he estimates) and I'm so glad we took the chance a second time. 

After going on eleven years of this headache, I've reached a point of knowing that a cure is not and never will be a silver bullet. It's not that I don't believe better days are possible (because I do), but I know that solutions don't come packaged neatly with a bow. Relief is multifaceted. One treatment...one procedure...one therapeutic journey, gives the next one a fighting chance. It's also one of the most exhausting realities of battling chronic pain - the work you put in today doesn't always make tomorrow easier. But it might give legs to the work you put in tomorrow (or the next day).

Four months post op, I've definitely experienced a positive change. The "hot spots" I could pinpoint with my fingers are completely gone. Actually (snip snip) gone - those were my angry lesser occipital nerves! That's huge. Aside from having some time on my side, I've also been working with a physical therapist to strengthen my deep neck flexors. To prove my point above, these are really basic DNS exercises I've done time and time again over the last 6 or 7 years post C1/C2 fusion and craniectomy. But for the first time ever, they seem to actually be making a difference.

This third video in particular shows how engaging my deep flexors helps take the load off my overworked erectors, ideally improving the overall mobility and function of my cervical spine. 

As far as the redness/blotchiness you see on my neck, I have no idea. It comes and goes. We think that's the complex regional pain syndrome (CRPS) I seem to have developed over the last few years. 

So great progress but the relief hasn't translated as much as I would have hoped to the rest of my head pain - still suboccipital but primarily frontal/temporal (i.e. the holy shit my head is going to explode kind of pain), but I'm hopeful that this week's treatment can be a big step forward. 

I've consulted with Dr. Centeno over the last year so heading into this trip, we knew some definite reinjection sites, but the final treatment plan wasn't set in stone until I met with him in person this past Tuesday. 

So here was the week...

We flew in to Grand Cayman on Monday. The next morning was the start of Regenexx-C Phase 2. I needed a fresh blood draw three days prior to my reinjection to collect platelet lysate (PL), which was needed to grow my cells. My stem cells themselves have been cryo-preserved at their biologic age but too much time had elapsed for PL since my blood was last collected. 

Then I sat down with Dr. Centeno to go over our plan of attack. We discussed the relief I've experienced from my last ON surgery and reviewed some imaging. He performed a physical exam (including diagnostic ultrasound). We had quite a bit to work through because I have also been dealing with some chronic hip issues that we planned to treat. Sort of separate...but also sort of related to my head. I have a history of labral tears and moderate osteoarthritis in one of my hips. Both were surgically repaired over a decade ago but one has become increasingly problematic over the few years and hasn't responded well to physical therapy and some different interventional procedures (including PRP). The mechanical dysfunction from my head down my spine and beyond seems to only create more problems as time goes on. 

The final reinjection plan was:

Cervical spine: C0/C1 (right), C1/C2 (left), C2/C3 (bilateral), myodural bridge* (see note below on MDB)

Lumbar spine/SI joint: sacroiliac ligaments (bilateral), interspinous and supraspinous ligaments, iliolumbar ligament, QL tendon (left), greater tronchanter, multifidus, SI joint (left), and S1 nerve. 

He also injected tendons and ligaments in my right knee, which have recently become affected by that Si nerve irritation. Ugh. 

Dr. Centeno also pointed out what appeared to be a possible cyst of some kind (see that solid mass where his pen is pointing?) that could be compressing my third occipital nerve. If it was a fluid-filled cyst, his plan was to drain it, but it ended up being scar tissue. The unfortunate price I'm paying for having four surgeries in that area. Hopefully, some of what he injected will have a positive impact on that space.

*I've mentioned the myodural bridge before, but it's not a very commonly talked about structure (even for those of us who live in the world of upper cervical injury), so here's a recap. 

The MDB is the connective tissue connecting the suboccipital muscles and cervical spinal dura mater (remember that the dura is the outermost/toughest/most fibrous membrane that covers the brain and spinal cord). This soft tissue bridge anchors the spinal cord during passive and active cervical spinal movements. It was first reported in 2011 by Dr. Frank Scali. 

And in a very random turn of events (thanks Jeff!), I ended up speaking to Dr. Scali on the phone last Friday (actually just hours before my reinjection). My brain's no where near smart enough to pick his, but we did have a really interesting conversation. He basically lives and breathes upper cervical anatomy and the MDB (technically bridges, as he explained to me) is a major focus of his research, including their role in a dural tension monitoring system to prevent dural infolding and maintain patency (opening) of the spinal cord. (This also impacts cerebral spinal fluid flow.) And it makes sense that hyperflexion extension injuries (aka whiplash aka riding my bike into a tree) have the ability to send a damage those bridges. 

As someone who tries to the best of my (limited) ability to grasp these concepts simply out of desperation for my own health, I'm really appreciative to Dr. Scali for taking the time to chat with me. 

After Tuesday's appointment, we had some downtime until Friday's procedure. And hey, there are worse places to have downtime. My parents and I relaxed on the white sands of Seven Mile Beach, swam in salty, crystal clear, turquoise water that is the perfect temperature to lose track of time in. We ate some incredible meals (there's no shortage of healthy options), and went on an epic excursion. We snorkeled over coral reef, stopped at a sandbar where we hung out in waist deep water with stingrays, and explored Starfish point. 10/10 recommend! 

On Friday morning, I was back over at the Regenexx clinic for another blood draw. This blood was used to prepare my cells for reinjection. And by Friday afternoon, it was GO time! 

I was under conscious sedation for the reinjection, so about 10% aware and 90% out of it. I know the procedure lasted quite a while just because of the number of injection sites (and getting everything set up under x-ray guidance takes time too). I remember feeling a bit of discomfort but overall, compared to what I've been through, it was a piece of cake. The only rough part of the whole ordeal was the nausea from the Oxycodone a few hours later. It was one and done on the heavy pain killer for me (I never tolerate them well) and luckily, I didn't need them anyway. Post-reinjection pain and discomfort have been quite minimal. 

What now?

The first few days of recovery is a balance of R&R (including use of an infrared heating pad) with light movement, including some stretching and mobility work along with walking up to 30 minutes or so. This morning, on our way to the airport, we stopped back at Regenexx for my final appointment. Dr. Centeno injected PRP into my knee and hip this morning, which will help with healing. (These post procedure injections aren't part of the upper cervical protocol.)

After a Regenexx-C procedure, tissue healing progresses through 3 phases. 

1. Inflammation (week 1): when other healing cells are being recruited to the area to begin the healing process 

2. Proliferation (day 4 to week 6): when collagen and the building blocks for the injured tissue are being laid down 

3. Remodeling (week 2 to 3-6 months): when the tissue is constantly improving to become stronger, functional, and closer to normal

I'll resume physical therapy when I get home and gradually return to normal activity over the next few weeks. 

Full healing can take 6-12 months for stem cell procedures and data outcome suggests peak functionality at 1-2 years after Regenexx-C treatment, but Dr. Centeno told me that I should have a good sense of its outcome over the next few months. 

So there we go! With what felt like never ending obstacles standing in the way, I can't tell you how good it feels to be on the other side of this procedure. Now just one more flight to go to get home to my babies. 

These photos just needed a place. Taken the day before my departure - Ryan's first (balance) bike race...she crushed it!

Four weeks post-op

A quick update from my last post in July. Did Craig and I make it NYC for my brain scan? We came close! We were visiting my family in MA at the time, prepared for our first overnight from Ryan. We drove to the airport, we boarded the plane, we sat on the plane for two hours, the flight got cancelled due to extreme weather, we got off the plane, we drove home. Hah. So we are still working on that. 

Also, I don't have any real update on my stem cells. We're hoping Dr. Centeno's clinic in Grand Cayman will be able to reopen in the spring and we'll finally get down there for re-injection. 

Now jump ahead. This week, I'll be four weeks post-op. You didn't think I would make it a whole year without going under the knife, did you?

After our trip to San Francisco in early October to see Dr. Peled, I decided it was worth trying a third occipital nerve surgery. This time, Dr. Peled would be targeting both my right and left lesser occipital nerves. If you're keeping track, he had already decompressed both during my first surgery with him in 2017 and had gone back in to cut the left during my second surgery a few months later. My decision to move forward with this latest procedure was based on the temporary (diagnostic) relief from the nerve blocks he performed this fall. But why hasn't this relief I seem to get from the blocks translated to lasting relief from previous nerve resections and excisions? A valid question.

As I mentioned in my last post, Dr. Peled had explained to Craig and I that there was a small but entirely plausible chance (something he sees in about 10% of patients) that I could have an aberrant lesser occipital nerve branch located next to my trapezius muscle (instead of behind the sternocleidomastoid, where it's traditionally found). Nothing is a guarantee, of course, and I can understand how the thought of a somewhat exploratory surgery seems....aggressive? But the reality is, until you are living and breathing this pain every waking and sleeping moment of your life for over a decade, you just can't fully appreciate what I would do to feel relief. Before every surgery or procedure I've had, I'm inevitably met with reactions from friends and family that go something like this: "Oh I'm so sorry you need another surgery." I understand the knee jerk sentiment, but please don't ever be sympathetic toward's someone's hope. Just say whatever you think you could that can give them more of it. 

Between COVID and a toddler at home, traveling for medical procedures is a little extra challenging these days, but thanks to my mom, Ryan was in the best hands while we Craig and I were in California. Now, almost a month later, she tells us on a daily basis "I missed you when you were in San Francisco." Cue heart melting. 

Anyway, our trip was short as we could make up. Out on a Tuesday, pre-op on a Wednesday, surgery on Thursday, post-op on Friday and straight to the airport home. 

Surgery took a couple of hours but I came out of it relatively comfortable, as is typically the case. Prescriptions filled as always but no meds needed to control surgical pain. And most importantly, we were so relieved to hear that Dr. Peled had indeed found (and cut) those aberrant branches on both the left and right sides. 

It's an incredibly validating feeling to know there was some clear damage to those nerves. Now we just wait, heal, and pray to every higher power that a reduction in pain will follow. Recovery from these surgeries can be a bit of a rollercoaster. Everyone is different, of course, but it's not uncommon to experience a "honeymoon phase" in the first few days post-op, as everything is pretty numb. Then the nerves start waking up and surrounding nerves tend to get a little angry, going to into overdrive to take over the job of their compromised neighbors. This phase can last weeks (sometimes months) but Dr. Peled has reminded me that the 3-6 month period is generally when the most lasting relief is felt. Patience, patience, patience. 

Here's a look at my incisions the morning after surgery. 

So how's my recovery going? Well, see above. I'm optimistic (I have to be) but this last month has been really challenging...no way around that. The actual spots where the nerves were cut feel decent, but pain at the base of my skull, over the top of my head, deep into my temples, over my eyes, and across my forehead has just been so intense and unrelenting. At times, unbearable. Then again, what does unbearable even mean when not bearing it is simply not an option.  

I have to take it easy from working out for at least another couple of weeks, but in the meantime I'm able to continue my daily walks and have gotten back into my early morning cold plunges in an attempt to help regulate my nervous system. 

I've been trying to get into a more consistent breathing exercises routine too, but it doesn't come easy to me. The voice I'm following along to is telling me to focus on my inhale and exhale. To be present in the moment. That this moment you're in is all you have. That worrying about the pasts breeds depression, that worrying about the future breeds anxiety. I get all of that. But what if it's present moment that is suffocating me? When it's 1:15 on a Wednesday afternoon and I'm feeling absolutely suffocated by the physical pain I'm in. Where does that leave me?

Every single night when we're getting into bed, Craig asks me "Can I get you anything?" He means it too. My head is usually already "tucked in" with its ice packs so I tell him no, thank you, that I'm okay. But a few nights ago, before he could finish the second half - "Wake me up if you need anything" - my eyes swelled with tears. Oh boy, here we go. They fall hard and fast. There is nothing you or anyone else can get me right now and that's why this is so hard. Imagine falling asleep drenched in pain that is taking your breath away. Hoping with every ounce of your being that something in your body shifts overnight so that tomorrow can start differently, and then crushed when you wake up and realize it hasn't. Day after day after day after day.

That's a glimpse into this reality that I've always hated sharing because I never want it to detract from my optimism. Not for you, but for me. In the thick of this pain, I know that the voice inside my own head matters, which is why I force myself to keep looking forward. But hope and suffering are not mutually exclusive. On especially hard days, my undeniably empathic two-year old looks at me, tilts her head, and asks with concern in her sweet little voice "Mom, you feelin' good?" She already recognizes the look in my eyes, the strain in my voice, the rubbing of my temples. And holy shit does that break my heart. I imagined one day talking to Ryan about Mommy's head but never in a million years did I think it would be so soon. But I try to appreciate the compassion and resilience it's teaching her as much as I appreciate the love and light she shines on my darkest moments. 

And let's face it, if I'm not feeling good, how am I ever going to keep keep up with this?

Fingers crossed I'll have some good news to report in the coming months.