This post was published on April 10, 2018, with newer updates and additional resources at the bottom of the post.
On April 1st, I went for a short walk to watch some Florida marsh hens rustle through the reeds and cackle at the wind. The date marked one month since I started walking again. I sat there, awkward and sore on a tiny bench facing the water, fighting back tears. Despite a newfound excitement about local wildlife, and my gratitude to be to be walking again, this was not where I planned to be.
April 1st also marked the 10-year anniversary of leaving my career as a lawyer in New York. On that date, I set off for Chile, leaving behind a comfy job and half a decade in a city I called home. In the years since, I planned to commemorate my 10-year travel anniversary with a giant party in a city I loved.
Once I moved to Oaxaca, I found it to be the perfect spot. The occasional idea would pop into my head during my long wanders around town. I’d plan for my favourite stalls to participate, giving hungry visitors a taste of Oaxaca’s rich culinary curiosities. Israel’s head tacos, Mateo and Sarai’s grasshopper pizza, mole, tamales, chilaquiles, pozole, and so much more. Anyone who wanted to come could, and I’d put together an itinerary for the week where they could enjoy the city, stuff their faces, and revel in the joy of learning about Zapotec and other cultures through food. We’d have a mezcal-soaked multi-day educational extravaganza, with bumpy collectivo rides into the valley and plenty of smiles.
As I’ve said in prior posts, I did not start Legal Nomads with a goal of becoming a full-time travel/food writer or public speaker. I did not leave the law with even an inkling of a new career. I left for a one-year sabbatical, hoping to return to the law with some adventures and new experiences to call my own.
I don’t think I was particularly good at traveling. I got sick a lot. I hated packing, always and forever. And I didn’t even care how many countries I visited or sights I saw. I just wanted to keep learning, and eating, and exploring.
However, in the course of soaking up everything I could, I found that travel and food were the perfect foils for my enduring need to write. I always wrote, even if no one was reading. In notebooks, on scraps of paper, on my laptop. It was catharsis and processing, rolled into one.
In Mari Andrew’s wonderful, whimsical book Am I There Yet, she shares the story of how a shopkeeper in Berlin changed her perception of art-as-craft. “She spoke about art as though she were talking about her best friend or a bubble bath,” Mari writes. “She wasn’t creating for accolades, but for the satisfaction of a new paintbrush dipped in fuchsia.”
That satisfaction, of stringing words together in new ways, of sharing a perspective that hopefully affected some change, was all I needed to feel creative. Writing was a tool that connected me to the world in ways I never contemplated. Through travel and photography, and the organic journey of my unexpected career shift into food and travel writing, I was able to build a life that taught me new lessons that I could share every day.
Now, in this seemingly endless stretch of shocking changes, writing has been physically difficult at a time I needed it most. For many months, I have been in tremendous amounts of pain, unable to sit or walk or stand. I truly felt like everything I worked hard to build was gone.
It All Began With a Lumbar Puncture…
For those of you just tuning in: sudden and very scary symptoms led me to the ER in Brooklyn, where they performed a lumbar puncture to rule out certain conditions. Truthfully, it was one of the most painful experiences of my life. It’s not supposed to be a painful procedure, but for me it was because the local anesthetic did not work.
I was told one of the rarer risks of the procedure was “a headache” that would go away after a few days. What I didn’t know at the time, and wish that I did, was that lumbar punctures are the most common iatrogenic cause of spinal CSF leaks—and that the risk of a leak is not as rare as believed, especially for petite women like me.
After my painful ER visit, I returned to the apartment I was cat-sitting at after midnight, only to find it burgled in my absence. Upon my sharing this detail with readers after the shock wore off, one thoughtlessly commented that I must have “angered the karma gods.” Actually, it may be quite the opposite. We have a screenshot of the person as he came in through the window, thanks to my friends’ nanny cam in their child’s room, the room climbed the fire escape to enter. His head is fully covered in a patterned ski mask, he is wearing gloves, and he is carrying a white cloth in his hand. His description matched home invasion rapes in that borough, the white cloth in those cases soaked in chloroform.
Do we know what he planned that evening? No. Upon seeing the screenshot, friends agreed with my vile theory that burglary may actually have been the consolation prize. The whole thing made me sick to my stomach to think about.
Already in so much pain following the spinal tap, I couldn’t be alone in the apartment, even during the day, since I was confined to bed. Friends stepped up and rotated day and night until my mum and stepdad could arrive from Montreal to take me back to Canada. Some brought food, others brought hugs. Most simply sat with me, soaking in the insanity of what I referred to as my “black swan night.”
I didn’t mention this part of the story in my earlier, because at that point my brain was a frozen video, buffering nonstop. But it is important now because many of you have asked why I am not more angry, which is a valid question. I don’t think anger serves me here, and it certainly won’t help my healing. But also, there is a clear line in the sand from that very traumatic night.
The divergence of fates: the Jodi that stayed home, versus the one that went to the ER.
A Winter of Extremes: Post Puncture Dural Headache to Spinal CSF Leak, and Everything in Between
The lumbar puncture (or spinal tap, since many people use that term instead) led to a debilitating condition called a cerebrospinal fluid leak, a spinal CSF leak.
Cerebrospinal fluid is the fluid that surrounds the brain and spinal cord, contained by a connective tissue sheath called the dura mater. Latin for “tough mother,” the dura mater has a critical job: it keeps the CSF within its borders to cushion and protect the brain and spine.
A hole or tear in the dura results in a loss of CSF volume, meaning that the natural waterbed shielding the spine and brain is reduced, and the brain sinks inside the head. When a person is upright, this sinking affects the body in a myriad of torturous ways, including “brain sag,” a telltale sensation of pressure and intense pain at the back of the head.
Other symptoms can include dizziness, nausea, pain between the shoulder blades, bladder dysfunction, low lying cerebellar tonsils, nerve pain, and in rarer cases subdural hematomas, Parkinson’s-like tremors, unsteady gait, seizures, and more.
The positional symptoms are an important diagnostic clue. When lying flat, CSF pressure in the head and spine are equal. When upright, the pressure in the head is much lower than in the bottom of the spine. For those suffering from a CSF leak, the additional loss of CSF volume from the leak causes an even larger drop in pressure when standing.
When I laid flat, the “brain sag” dissipated, as did most of my other symptoms.
I mention these details because few medical providers are specifically taught to recognize and diagnose spinal CSF leaks. Given the lack of training, myths persist that lead patients to be misdiagnosed or deprived of treatment after a post-puncture leak.
Initially, my symptoms were classified as a post-dural puncture headache (PDPH). Truthfully, calling it a “headache” significantly undershoots the systemic pain that I described in the symptoms above.
That “headache” often resolves with conservative management: lying flat, caffeine, lots of hydration. But for many patients it does not and an epidural blood patch is needed. This is a procedure where the doctors inject your own blood into the epidural space, to create a clot that allows your body to heal the area of the leak. The patch is not the lasting “seal” itself; the mechanism of action encourages your body to knit tissue back together at the leak site while temporarily stopping CSF outflow.
I did return to the hospital in New York to try and get one, but was told that it had its own risks and that I ought to heal fine on my own. I specifically asked whether or not it was possible that I didn’t heal, and that not getting a patch would be a problem for healing.
“I’ve never heard of that happening”, said the doctor.
I wish he was right.
Several weeks later, at that point in Montreal, it was clear that I wasn’t healing.
Terrified, and bleakly looking at the calendar toward my supposed departure for Oaxaca in October, I spent my hours in a state of half-shock, half-Nancy Drew. I read studies, forum posts, panicked write-ups and more from around the web for any help I could find.
In retrospect, I realized that many of the aspects of the puncture—the position (curled over the side of the bed), the needles (18g, very large), the type (cutting needles), and that it wasn’t done under guidance—all contributed to my leak being complex but to the fact that I obtained a spinal leak from the procedure.
The hospital’s advice to lay down that evening and then just carry on as normal also prevented self-healing after a procedure with all of those risk factors. I did not know that many of the things I did—like shaving my legs in the shower, bending in certain ways, lifting a jug of milk, etc. were all things that likely impeded my healing at a critical time.
Unsurprisingly, the biggest help for my next steps came from my own community.
A few months prior to the spinal CSF leak, I made a point of visiting a mini cow named Moochi, who I found on Instagram. I may or may not have attended a conference in Los Angeles in part to facilitate this bovine meeting. At the time, he was co-owned by a guy named Tim.
It turns out that Tim was dating a woman who previously had a CSF leak—except she had hers for years prior to diagnosis. Her leak was spontaneous, making it much harder to locate, and she ended up needing surgery to fix it. She had a connective tissue disorder, common for those with spontaneous CSF leaks (both spinal and cranial) and was a beacon of sanity during these early months.
She added me to a private CSF leak group on Facebook with several thousand leak patients from around the world.
In that Facebook group, I learned about people’s tips and tricks for trying to “self-heal” so I could maximize my own body’s ability to seal up the holes from the lumbar puncture. My days involved lots of rest, supplements, and limited movement.
Unfortunately, sealing up without help proved to be fruitless. Confined to bed, I spent hours reading, and feeling less hopeful by the day.
In addition to the “brain sag” I experienced the moment I was upright, I also suffered a new slew of symptoms that I never had before. Nerve pain in my tailbone and sacrum, burning pain up and down my spine, a new, sudden reactivity to foods I had no issues eating before, muscle twitching, insomnia, and a whole host of unpleasant other things that I won’t bore you with right now.
Suffice it to say that CSF outside the dura mater, the membrane that protects the brain and spinal cord and keeps the CSF from coursing around willy-nilly, does not feel good for the rest of the body. My nervous system was deeply affected, and my body barely felt like my own.
Concurrently, there was a lot of shock and grief.
I was supposed to be hosting readers on food walks in Oaxaca, but instead I was in a lot of pain, more and more deconditioned by the day. From people I spoke with and case studies I read, several months of leaking meant sealing the hole(s) could be more complicated than a simple blood patch.
Spinal CSF leak patients in Canada urged me to head to a specialty centre instead of attempting to pursue treatment domestically.
American patients even said they wished they had gone straight to one of the specialty centres instead of their local hospitals. And given that Canadian doctors had already claimed I had a migraine instead of a spinal CSF leak, I didn’t need much convincing.
The problem was, with ten years of nomadism, I had no residency or main doctor to refer me.
I had to find the strength to get creative and find a way for the centre to take me on, which felt impossible in my current state. But, I slogged through and arranged to get the MRIs needed for my submission to Duke, wrote a cover letter that my friends proofed for me, and sent it off. Lying down for 23 hours out of 24 in a day, I was simply in purgatory, hoping that Duke would agree to see me.
I thought about how to share the sheer futility of what waking up felt like without sounding dramatic, but there truly is no way. Those beginning few months sapped any joy for life that I had out of me, and I would open my eyes in the morning wondering what the point of fighting was. The pain was excruciating moment to moment. I really felt waterlogged with sorrow.
I couldn’t put on my socks for months, or bend, or twist, and my next steps were a swirling limbo of administrative papers and MRIs. I saw life through a prism that only showed me extremes.
During those months, what kept me afloat was friends and family, and support from my community. My close friends were a bridge to a state of sanity that felt far out of reach. They reminded me daily of all the (occasionally crazy) things I did fight for in my life. When I simply replied that I couldn’t formulate words anymore, they’d always hold space for my sadness.
North Carolina for the First Time: Blood Patching at Duke
We all knew was that Duke seemed to be the best in the business for patching spinal leaks. So I tried to put what little energy I had toward fighting for the MRIs I needed from the Canadian side in order to be considered for treatment.
Thankfully my stubbornness paid off, and they agreed to take me on in early December. My mum and stepdad, who had already fetched me in New York and then fed me and changed my socks for months, volunteered to drive me down to North Carolina. Laying in the back seat and staring out the sunroof during several painful days gave me plenty of “what ifs” to think about.
By the time I got to Duke, I was shaking with exhaustion.
I hope to write more about the patching process, as well as things I wished I knew ahead of time, as there are many.
The salient points are: the first and second round of patches did not work. The third did, and threw me into agonizing “rebound high pressure,” where the leak was sealed but I had excess CSF fluid since my body was so accustomed to leaking. Then, two weeks into being sealed, I fell back into a chair as I was sitting for dinner, and tore through my healing.
The rollercoaster of highs and lows from this experience was itself a foreign, polarizing spectrum of emotions. From not knowing if the patching worked, to navigating high pressure, then adjusting medication to try and stabilize pressure, followed by the crushing knowledge that I was back to leaking after I sat too heavily— it was all too much. I was so incredibly careful with every single movement I made, and a small slip was all it took to be thrown back to square one.
Blood and Glue Patching for a Spinal CSF Leak
I ended up needing four rounds of blood and glue patching at Duke.
This involved injecting the blood and glue into my epidural space, spread along twenty-two targeted patches total. The jaw-dropping part of this entire CSF leak experience is that it’s very difficult to know exactly where to inject. For iatrogenic leakers like me, who got a lumbar puncture or epidural or injection, they have a general idea. But puncture leaks show up on imaging only a small percentage of the time and thus pinpointing the exact location in the dura is very difficult.
So despite knowing the general “lumbar area”, it still took several rounds to get me sealed. The initial spinal tap was not done with fluoroscopic guidance, and there were multiple attempts. In some cases, the needles go through to the anterior side and the patient requires a 360 degree patch—something Duke pioneered, and I received.
The entire CSF leak team at Duke Radiology was extraordinary, and often work together for challenging cases. I tipped into that category following patching round two, and was impressed with how they each consulted each other. They were transparent about their process, and prior to each patch my doctor sat down with me to discuss his strategy for the procedure.
My doctor was compassionate and kind, and willing to answer my many questions. He checked in with me frequently by text following each patch, and called when things got worse. Given that he was the only doctor I had, I very much appreciated his care. He also gave me more faith in the medical profession after feeling so disillusioned by my treatment in New York and Montreal.
Spontaneous spinal CSF leakers like Tim’s ex-girlfriend can blow leaks in their dura simply living life. The condition is called SIH, spontaneous intracranial hypotension. These patients often have an underlying connective tissue disorder that makes their tissue less robust than normal. Because MRI and CT imaging is not yet sensitive enough to easily show smaller leaks, it remains very difficult to diagnose these patients and/or know where to patch.
The imaging to find leaks is itself invasive: looking for a leak often requires a CT-Myelogram or Digital Subtraction Myelogram, both requiring intrathecal (inside the dura) injections of contrast dye to look for the leak site. So finding the leak requires making a new hole, which itself can and has made new leaks.
It often takes them years and years of misdiagnoses before SIH patients are able to get treatment for a CSF leak.
In my case, my narrative was clear: I had a lumbar puncture, and was incapacitated right after it. Despite those facts, and that I did not have neurological issues or headaches prior to the lumbar puncture, the doctors I saw rejected me for a blood patch until I got to Duke. It’s even more difficult to get care for spontaneous spinal CSF leak patients.
These spontaneous spinal CSF patients are a big percentage of Duke’s CSF practice.
Slow and Steady Wins the Race: Recovering from my CSF Leak
After the fourth round of patching, it wasn’t clear whether I was sealed. I was in a cycle of having leak symptoms and laying flat, then propped up with higher pressure symptoms, feeling like my head was going to pop off my neck. Rising above the snarled periphery of very difficult facts proved to be a challenge.
It wasn’t until early March 2018 that my symptoms evened out. I decided that I would start walking on March 1 regardless of how I felt, but in late February I still wasn’t sure what was going on. After patching, I spent most of my days meditating, visualizing my body’s healing, and reading. Vipassana meditation proved very valuable, as did other meditations I’ve tried over the years.
Throughout, the focus is on a ‘moment to moment’ scale. When all of your moments are strung together with a tightrope of pain, however, seconds feel like hours. It took constant vigilance to tirelessly reroute my thoughts and stay in a place of possibility. I fought myself on the facts that augured failure, and the hum of dread that sucked me back into a spiral of ‘what ifs’.
By early March, my dad and stepmum were taking care of me in Florida. On March 1, I walked from their house to the end of their street, a few houses away. I came back exhausted. Every day, I forced myself a house further. By the end of the week, I made it to the stop sign. And by mid-March, in what felt like a miracle, I was walking an hour a day.
The walks came with a lot of back pain and brain fog, but without the “brain sag” feeling that I felt for five months when leaking.
In my determination to quiet my mind, I’ve been able to listen to my body. In the past, I’ve pushed my body past exhaustion. Now, when it says to stop, I stop. There is a difference between adding an extra house on my walk and tipping into a deep weariness.
I struggled to differentiate between the two over the years, but the high stakes during this journey have proven an excellent motivator to get better at listening. This means taking things very slowly, much more slowly than a Jodi would have done during the magnetic, vivid intensity of these last ten years.
The Gift of Surrender
When I checked into Duke for that last round of patching, I was no longer nervous for the procedures. I thought I knew exactly what to expect. The blood patches were painful but straightforward. I even knew the nurses by name! But round four veered far off-script when I had an allergic reaction to the fibrin glue and went into anaphylaxis. Fuchsia from head to toe, my heart racing, eyes swollen shut and throat beginning to constrict, I received IV steroids and then an epinephrine jab in the leg.
I’ve never needed to carry an EpiPen or had allergies before. The experience of anaphylaxis was both surreal and scary, but I am sharing for one main reason: in the midst of all the commotion, I felt complete calm. Though my body was shaking wildly from the epinephrine, my mind was steady.
Later that day, my doctor asked me if I was calm due to shock. But it wasn’t that at all. I felt deeply at peace with the prospect of dying. I felt no big regrets, only the small nagging ache of specific time wasted that I wished I could undo. I pursued a life that excited me, and I built a business I loved. I stuck to my standards and wrote pieces I was proud of. Somehow, these things brought in an incredible community of readers who supported my work and found value in it. Of course I preferred to live, but if this was the end, I was ok with that.
At the end of last year’s post, I wrote that the lesson for that year was one of acceptance. After almost a decade of being a digital nomad, I settled down in Oaxaca and put down some roots in a delicious city I loved.
As with almost everything else in this tale of unwitting transformation, acceptance teed me up for this year’s fundamental message: surrender. When everything that makes sense distorts into a haze of senseless confusion, all you can do is let go.
It took many months for me to get here.
First, the disbelief. Then, as I understood more of what had happened to my body and the limitations many have, even when healed from a CSF leak, more grief. “Ultimately there’s no escape from living with uncertainty, for anyone,” says The Atlantic. There’s no rocket science there. But what happens when the not-knowing involves every aspect of your movement and life?
Many of the spinal CSF leak patients who had a hard time getting sealed, or re-leaked months or years later doing something seemingly innocuous. They blew a leak in their dura doing downward-facing dog during yoga, or when the plane re-pressurized upon landing. Or leaning down to pick up some laundry. Some never get sealed at all.
For now, there is no bending, lifting, or twisting. “Maybe forever!” jokes a fellow patient, and as with any morbid humour, there is some truth.
Who knows. None of us knows much. After all, life is essentially chaos and our personalities dictate where on the “exhilarated to terrifying” line we fall to handle the disarray.
My current not-knowing is so disproportionate, so definitive. Regardless of what happens, I will never be able to move without consciously thinking of potential damage. I can’t risk it. And I will never be able to live the life I led before. That’s not to say I can’t build a different, good, life with what I have now. I’m working toward building a different version that can bring me joy in new ways.
But there remains a great deal to process and grieve within the very eventful last seven months, as things have irrevocably changed.
I reread Viktor Frankl’s book Man’s Search For Meaning during these difficult months. Frankl’s time in Auschwitz led to his development of logotherapy in his psychiatry practice, but the book delves into his theories of why certain people managed to survive the Nazi camps.
Frankl saw life as a quest for meaning, found in work, in love, and in courage during difficult times. Among his beliefs was that suffering itself is meaningless, but we give suffering meaning by the way we respond to it. Or, as Harold S. Kushner writes in the introduction to the latest version, that “forces beyond your control can take away everything you possess except one thing, your freedom to choose how you respond to the situation.”
Instead of thrashing around in grief, I’ve chosen to focus on the gifts that have come out of this very complicated year. With these facts, things could have been a lot worse. Instead of being confined to isolation, I have you to walk this path with me. My community around the world raised their voices and opened their pocketbooks to keep me afloat when I couldn’t manage it. You respond to my progress walks on Instagram, you cheerlead every update, and your birding skills helped me identify the beloved marsh hens that I fell for during this recovery.
Several of you have said you will be pursuing a diagnosis for CSF leaks based on the symptoms I shared. Others wrote to say you were doctors or anesthesiologists, and while you were trained to know CSF leaks, my story helped remind you of the risks. When I say community, I mean everyone. Family. Friends. Readers. Travel bloggers. Parents of travel bloggers (the amount of notes from parents of travel bloggers has been astounding and beautiful.) Strangers.
I’m lucky because you’ve helped me feel like my work matters. You’ve helped me remember why my life had meaning. And even if I can’t go back and do everything I used to do, I still have my words.
Getting to surrender wouldn’t have been possible without my close friends. There are several who stepped up, but I wouldn’t be here without my sister-from-another-mister Shannon. You may know her from my 2011 winter in Chiang Mai and many subsequent misadventures. She happened to be in Virginia when I got to Duke, a mere four hours drive away. Thanks to her flexible schedule and ability to work anywhere, I was able to stay near Duke and get the treatment I needed over the course of many weeks. She not only drove me down from North Carolina to Florida, but stayed with me for over two and a half months, and shouldered the exhausting task of taking care of me while managing the many, many nights of tears.
I did spend time mired in the unfairness of the situation, and scared of what could go wrong next. Despite the stats that say many people leak and re-leak again when their first leaks are difficult to fix, I decided to choose possibility. Despite the moment to moment pain that is my present. It doesn’t matter, because truly we just don’t know what’s possible.
There was a quiet, twisted grace in that surrender to possibility, a gift I never expected.
What’s Next for Legal Nomads?
My friends, I do not know.
I still want to write, and I’m grateful that I have Legal Nomads, where I can do so. I still have many celiac guides to put up. I have a course about storytelling I was planning to launch. And so many stories about Oaxaca and Day of the Dead, about the history of different foods, and photos from around the world.
The beauty of a location independent business is that it exists wherever there is wifi. Whether or not I will be able to travel, however, is very much up in the air. This will be something I take one day at a time, just like my healing.
It is this business that gave me a full shot at healing. The ability to stay near Duke as needed. The friends who also led flexible lives and could come to help out. The celiac cards and maps of food that sell even though I’m not online. The fact that I don’t need to file for disability or worry about losing my job. I have plenty to worry about in terms of stability and ability to work, but it’s a lot less stressful than had I still been a lawyer.
There is plenty of talk about digital nomads, and more and more mainstream news pieces covering the movement. Most interviews point out how freeing it is to move at will, and for me doing so while forging great, lasting friendships has made the last ten years an incredible ride. But the flipside is the flexibility when life goes awry, something I thought of but never had to exercise with such impunity.
One Day We Will Have a Party Together
The flowers in this post’s header photo are cockscomb celosia, my favourite flower in the world. I discovered them years ago, and loved that they looked like tiny brains. To me, they symbolized resilience and wonder, and I often bought them in New York during my lawyering days. I fell for Saigon in a heartbeat, and clapped my hands with absolute glee when I found out that my beloved flowers were a mainstay of the lunar new year, Tet. In Oaxaca, the third city I fell for, I learned that they were an important component to Day of the Dead.
(If you’re wondering, the second city I fell for was Lisbon, and though I planned to move there Oaxaca stole my heart in the interim.)
People tell me that these flowers symbolize courage and boldness. I was drawn to them for their quirky shape, but after the last seven months I feel courageous, too.
After traveling to places during military coups, getting sick along the way as travellers do, getting into accidents, and so much more, it was a simple medical procedure in New York that brought me down.
The stubbornness that kept me going during the shadow days of long term travel helped keep me afloat here. And the community I built along the way took over when I just didn’t have the energy.
I still plan to have that party one day. It doesn’t matter how long it takes, or where it ends up being held. All of you who want to attend and celebrate with me, should. A commemoration of what others may see as unconventional, but now also a nod to resilience. To the support we can afford each other when shit gets real. To remembering that while we sometimes seem very different from one another, deep down we all share so much.
It feels surreal that this all happened during the past seven months. Life can change with one small misstep, or a series of big ones. I couldn’t have written this movie-like script if I tried, in my most creative flow state. It’s just so crazy, and even with this extensive post, I haven’t shared the full extent of what has gone wrong.
It’s been one deeply tangled web of a year, all sharp angles and fear. Even the small events seem almost excessive in their depth and effect.
But I’m still here.
That alone is celebration enough for me.
UPDATE October 2018: my spinal CSF leak reopened
My healing continued on a steady course, despite some setbacks, and in August 2018 I was able to climb Mount Royal in Montreal with my mum – a huge feat after everything you read in this post. I was clocking in 4-5km a day of walking comfortably, and looking to finally get back to work.
Unfortunately, late September 2018 I sat on the floor and stretched the wrong way. I felt a bit of a “pop,” and then all of the symptoms of leaking returned over the next few weeks: the brain sag, the neuro symptoms (muscle twitching), circulation issues, light sensitivity, neck pain, tailbone burning and pain, and much more.
I knew I could not do fibrin patching again, given the anaphylaxis I wrote about above. Blood patching alone, the doctors said, often took multiple attempts for complex cases, and I had already tried four patching rounds with fibrin.
People have asked about surgery, but I do not have an exact leak location, since my precise area of the leak did not show up on imaging. There is the option of exploratory surgery with one doctor, but they suggested exhausting less invasive options first, like another round of patching.
I hope to return to Duke for blood-only patching when I can.
UPDATE: 2023, still leaking
It turned out that there were other complications that got in the way of going back to Duke. I have not been in touch with them for some time while I figure these complications out with the help of specialists. Among them is significant mast cell dysfunction, which led me to write a resources page about mast cell activation disorder (12,000 words and counting!). I update that guide when new studies come out. Trying to get on top of that condition is a big challenge.
In addition, I have some nerve damage and adhesions in my spine that showed up on a recent MRI, which add additional risks to patching. I hope to get my body strong enough to get patched in the future.
It has been a heartbreaking development after slowly building up strength during those months of being sealed and on my way to healed. The hardest part of being back here is knowing how hard it was to seal up last time, and the fragility of that seal even months later.
Since 2018, I spent a long time in bed and slowly gained more mobility over time. For most of 2021-2022, I was “functionally leaking”—or semi-functionally at least. Since 2021, I live independently. My brother and his partner come over once a week to help with groceries, laundry, and batch cooking when needed.
I have set up the apartment I’m in with accessible options to help me day-to-day. I walk 3km a few times a week when weather allows. I stand up to type and write when I can, trying to make the most of my few “up” hours a day. Some of that time goes to the basics of living alone, like cooking or doing dishes or the like. Mostly, it’s a day of calculus: how much can I do before I need to lay flat again?
And it’s a day full of pain.
In the last few years, I self-experimented with regenerative medicine, supplements, and more to try and get me upright enough to function as I am. These did get me more standing time, but did not seal the leak. I anticipate needing to be patched again to try and get a seal, but the complications mentioned above factor into the decision and for now I have taken a conservative approach.
After living with family and extended family for four years, living alone has been delightfully quiet. My head is so sensitive with a spinal CSF leak that having no one talking around you makes a big difference.
But, in 2023 I reopened the leak further when sliding on the winter slush. So I’m not sure how I’ll be able to manage living alone like I used to.
These last few years, one of the hardest things has been the mental aspect of adjusting to the fact that a life I loved was taken away. Accepting this situation took a lot of work, but I more resilient for it.
I talk a bit about how I’ve done that in an October 2021 video interview with The Browser:
I highly recommend a therapist specializing in grief for anyone working through this significant of a life shift. The loss of what you knew and the acceptance of this hard place instead are both very difficult without that extra guidance.
How You Can Help
I get many lovely messages asking how to support me in this time. The best ways are:
- Via a one-time support donation, below, which helps cover my business expenses and rent and allows me to help sharing free resources and raise more awareness for my condition.
- Via my Patreon, where you can support me in my writing and work on a monthly basis. I share videos and resources for coping with chronic pain, meditation techniques that work for me, and answer questions from the community about accessibility, leaks, travel, and more. (You’ll also get a hand-drawn bird as part of your rewards for whatever tier you choose!)
Resources for Spinal CSF Leaks
- My interview with the Spinal CSF Leak Foundation (US) chronic lumbar puncture leaks.
- Spinal CSF Leak Foundation (USA)
- Spinal CSF Leak Foundation (Canada)
- CSF Leak Association (UK)
- Dysautonomia International, which can help patients that have POTS (Postural Orthostatic Tachycardia Syndrome), a type of dysautonomia that can be secondary to a CSF leak. Some patients diagnosed with POTS after a CSF leak have found that it went away when their leak was sealed.