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."
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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.
