The Lumbar Puncture That Changed My Life

This post was published on April 10, 2018, with newer updates at the bottom.

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.

my experience with a lumbar puncture leak and what blood patching
In a field of marigolds during Day of the Dead preparations outside of Oaxaca. This picture was taken near Zaachila.

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.

Like me.

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.

serendipitous meetings led me to seek treatment at duke for a csf leak
I see no reason why this cow shouldn’t contribute to my rationale for attending a conference.

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.

after the spinal tap but before epidural blood patching
Sunset in Montreal during a cold autumn evening in November.

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.

right before blood and fibrin glue patching at duke's radiology department
Me, in my llama rainbow shirt — a gift from my friend Honza — right before my first patch at Duke

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.

For a 2021 update that connects the dots to why my lumbar puncture led to a chronic spinal CSF leak, please see My Chronic Pain Explained. It turns out that I have both a connective tissue disorder, and a mast cell disorder, both of which make my situation more complicated.

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.

recovery post blood patching
I can’t complain with views like these.

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.

shannon a little adrift
Shannon from A Little Adrift, and me, in North Carolina. I could not have gotten through these months without her.

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.

jodi ettenberg
April 1, 2018. I took this after a short walk, marvelling at what an intense ten years it has been.

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.

-Jodi

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: 2022, 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. Presently, I am “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.

When I releaked I thought it would mean I would be dependent forever day-to-day. I am certainly not independent by normal means, but clawing back some semblance of life again has been rewarding, and it has allowed me to spend some of my time working on my own projects.

Among them is a long resources page for CSF leaks (spinal and cranial) that is not yet complete. Hopefully it helps others avoid the confusion and panic of trying to figure out what was going on in my body after my lumbar puncture.

I learned all of this too late, but hopefully my writing helps inform people to have the information in hand when they need it most.

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!)

patreon jodi ettenberg

Resources for Spinal CSF Leaks

 

211 thoughts on “The Lumbar Puncture That Changed My Life”

  1. Oh my, I just came across this while cruising around my bookmarked travel sites and felt compelled to offer a big cyber-hug. While my medical scenario is totally different, I understand the total upheaval that stems from a complex medical issue and its accompanying trauma, both physical and mental. It’s life-changing. Thank goodness for family, friends, and caring strangers, right? I send you comfort, ease, and continued healing on your journey. :-)

  2. I randomly came across your difficult adventure, but so happy for you and where you are at now. I had a ‘routine’ epidural block, in December last year. The next day, I started with the searing headache and a multitude of other symptoms. Two failed blood patches done locally, and many local doctors that just will not give you a diagnosis of a csf leak. Unfortunately, I do not have Facebook, and I have felt very alone in this horrific journey. I would love to hear more of your time and procedures, done down at Duke. I am in the process of gathering all my mris and clinical notes, as well. Thank you for sharing.

    1. Hi Kathie, I’m sorry to hear about your pain. So many people have written with similar stories, and doctors who were not willing to entertain a leak as possibility for symptoms. Despite a spinal tap with large needles, doctors in Montreal simply said it wasn’t possible to be leaking. We all know how THAT turned out!

      I was very impressed with Duke and felt that the whole team worked together and made sure that I got the best care possible. For what it’s worth, others I spoke with compared their Duke BPs with local as being totally different – the Duke doctors do many each per day; it’s their main specialty (along with diagnostics), which is why I opted to go there instead of getting one locally after they initially told me in NY I didn’t need one/they didn’t want to give one to me. I’m happy to answer any questions you might have – just send me an email via the contact form on this site.

      I’m sorry you’re going through this and I understand feeling alone. Happy to help if I can. Sending gentle hugs.

    2. You, Jodi, are all kinds of inspiring, with your two distinctly divergent “adventures into the unknown”. My life will be different today (and I suspect more grateful) for having being touched by your stories. You are a living demonstration of how beautiful, how graceful, brave and resilient humans can be.

  3. I was quite a read, Jodi! You’ve been through quite a lot and thank you for sharing your experience and personal story with us. You are so motivating. I wish you all the luck in Oaxaca as it seems like a great place to live in.

  4. Hi Jodi,

    I have been following your instagram for a while and wasn’t aware of this health crisis. I’m so sorry for all the pain you’ve been through and can relate with my unstable freelance nomadic life and my recent bout of cancer. I am 8 months out of treatment and still dealing with the side effects of chemo, surgery and radiation, chronic pain that forces one relearn how to exist in your own body and to learn to accept everything with equanimity.

    Your story is encouraging as you share with no bitterness and so much wisdom on living ‘moment to moment’.

    I too found salvation in Vipassana meditation and still learning to practice it more diligently and found inspiration in Viktor Frankl’s book.

    Sending you lots of love and lights, healing vibes and thank you for sharing your personal story.

    1. Hi Jules, apologies for the delay. I hope that your recovery continues in a steady, upward fashion. I’ve found Vipassana helpful but also took solace in guided meditations and body scans – for those early months, the deafening silence of pure Vipassana was too much to bear. In my case, I had to make the decision that there was no healing in bitterness (and I believe that to be true), so it was easier to share, and to grow.

      Sending you lots of love and light back. May you continue to heal and evolve.

  5. Girl, I knew you write you amazing, as I have been following you for quite some time, now, but this one brought tears to my eyes! You really deserve all the cockscomb celosia flowers in the entire world :) I am also a lawyer, it’s through our common passion for traveling that I found you some years back – trying to see if there are any lawyers that are more in love with travels than with law :) You give me the courage to dream about changes! I cannot express how sorry I feel for you, the fact that you had to go through so much pain. And yes, meditation can be so helpful. If we could all just put some time aside and just listen to our bodies and our souls. I also fight with serious scoliosis, I am definitely not comparing it to what you’ve been through, but I do know what you mean when you say that sometimes you need to take it easier. I used to do tons of things bad for my back, all in the name of travel and adventure until I had a severe lumbar crisis and ended up spending more than a month in bed. But these things shouldn’t stop us living our dreams. And I reaaaally hope that you will find the strength to continue what you’re doing. Don’t do it for us, your fans, do it for you, for your spirit that loves writing. I should better stop until people start saying I am a stalker :) But take care and I am sending you all the best wishes and tons of love!

    1. Thank you Andra! I’m grateful that you’re still reading. I’m sorry to hear about your lumbar crisis. I think it’s a tough middle ground, to figure out what lies between our dreams and our body’s reality? For me, it still looks like rejoining a life of travel and food isn’t possible – diet remains deeply limited and my body can’t handle the travel. So the dreams still exist, but it’s an exercise of shifting how I derive joy, and what are the microsources of it that I can still call my own.

      Work will probably have to change too – that 10 years post led me to triple (!) my CSF meds because writing seems to affect my body so much! But I think it’ll simply mean a different medium, or strategy, for doing this work that I love. Hope you have a wonderful weekend and are healthy and happy <3

  6. So sorrowful yet hope-inspiring writing. I believe all of us at a certain point in life meet mischievous circumstances which couldn’t be easily changed. Sooner or later, we do learn that lesson of acceptance as you mentioned. The dearest and nearest are those who help us survive, but one’s inner strength must be the ultimate trigger for recovery.
    Thank you for sharing such an intimate experience, Jodi. I admire your personality and wish you enjoy your precious life to the fullest.

  7. Oh my god Jodi. I’ve been following your journey — this unwanted journey — and just can’t even fathom what you’ve been through. I didn’t know about the screenshot of the burglar and who he turned out to be. That is unbelievable.

    The mind (like your fav flower) is amazing and scary all at once and I know you’ve had some very dark moments, but I’m so glad you are literally taking it a step at a time. Sending you gentle hugs, sunlight and good vibes from Chicago. xo

    1. Thank you Lisa! Feels like lifetimes ago that we were hanging out. I didn’t share the part about the burglar publicly until now; I needed the time to process it myself, and honestly it is just so chilling it took all of that time.

  8. This piece is absolutely fascinating, I knew nothing about this sort of leak and found this profoundly enlightening. I also felt strangely proud of you for having referenced the significance of developing mental strength, something that can be so difficult for so many people.

    I’ve been misdiagnosed for a few years now and only now that I am having problems with my heart have the drs recognised I have Pernicious Anaemia. I have suffered with problems with my leg and hand, on the right side of my body for a year, making roller derby impossible and even walks difficult. i find the mental side very hard.

    I hope you enjoy the journey towards your next move, I’m sure you will nail it. x

    1. Hi Kelly, I hope that your PA journey is an easy one, especially compared to the frustrations and dead ends of continuous misdiagnosis (and, I assume, also dismissal along the way). For the mental component, I think it takes a lot of time to wrap our heads around. In a way, because this experience was SO extreme, I had to wrap around it quickly to keep up with my need for healing… the stakes were so unbelievably high. Hoping you are in a place of peace and acceptance about the journey, and that the lessons learned are ones you are grateful for.

  9. Jeremy Branham

    Wow Jodi. I’m struggling to figure out what to say. I just happened to come across this as I was looking at Facebook and I had no idea you had gone through all this. I’m so sorry for all the pain and suffering you’ve gone through. I can’t imagine what it was like to go through all of that. You are incredibly smart, talented, strong, and beautiful and your perspective and perseverance amazes me. I read this in disbelief but encouraged by your attitude, hope, and the support of your friends and family. Knowing a little bit about who you are, it just baffles me to think that a small victory and accomplishment in your life, with all you’ve done, would be just to walk again. I wish you the best in your recovery and in your adventures going forward. I realize you may not know what’s next but then again none of this could have ever been expected. There’s a purpose and plan in this even if it wasn’t yours. And I hope that you find your path and healing and are somehow able to use what you’ve been through to make even more unexpected differences and bring inspiration to others.

  10. Dan Niederschulte

    I just found your blog this morning and I’ve been sucked into your writing. I love how you share these raw moments and how they change your overall perspective on life. I feel honored to be able to live through your journeys with you.

    1. Thank you Dan. I hope you enjoy the many different aspects of the site! I never drilled down on a niche because, honestly, life was just so interesting! The 10 years of Legal Nomads post gives a good overview on the on the whole lot – legalnomads.com/10-years/

  11. Jodi,

    I read and reread your blog before I decided to leave my law firm four years ago. Have not been back to this site for a while, and just saw this. Thinking about you and sending warm thoughts of healing, peace, serenity, connection. This was a very powerful post, leaving me in tears. I am cheering for you.

  12. Jackie Rose Helpern

    There is no joy or relief quite like walking after you thought you couldn’t, or haven’t been able to for a long while. I’m happy you found meditation, and that it was helpful to you. I also came to meditation after a life-changing accident while traveling in 2009 and found it helpful in a way nothing else was. I now live in NYC, travel regularly, and sporadically teach meditation. If you ever need a friend in NY or just to talk/vent, please know you are always welcome to contact me.

  13. I follow your reports on your health and hold my breath – delighted that you are still positive and hopeful (what else is there?) You are courageous and have such a love of life and beauty and simply “the world”! I cheer for your progress and ache for the difficulties! From one former lawyer to another… life matters much more than law!!

  14. Roslia Santamaria

    You are strong and beautiful women. You are an inspiring personality.
    It needs a lot of courage to pin down you life’s tragedies.
    Your story touched my heard and also inspired me .
    You are a wonderful writer girl. Stay blessed always.
    I loved your blog. Keep Blogging !!

  15. Hi Jodi. My wife has been bedridden for several months and we just recenlty discovered her condition is likely from a CSF leak. Our journey has been beyond difficult, she has endured migraine nerve decompression surgery and an extended stay at one of the Nation’s premier headache clinics. She continues to decline and through research we have noticed she has all the hallmarks of CSF leak(s). Any chance we could reach out to you directly, not looking for diagnosis or medical opinions, purely looking for support. Kudos to you on getting your message out to the world, as humans we are all connected one way or another. We are currently seeking CSF treatment: very initial stages with Duke and with her local Neuro team. Your time is beyond appreciated.

    1. Hi Chris, unfortunately I releaked and am not mobile at the moment, so I may take a bit to reply — but you can reach me via the contact form on this site and I’d be happy to help in any way if I can.

  16. Dear Jodi,
    I’m so blown away by your strength and courage! You are an amazing woman.

    I have just started my travel blog and have been following you and am so impressed.

    I’m not blowing smoke up your skirt, so to speak, but have opted to speak my heart and mind in this email. Your challenges are so intense that words aren’t coming to me to express what I want. (Not a very good trait for a writer).

    I guess partly is because I spent several years driving (265mi)my newborn and then baby to Children’s Hospital at Stanford for chemo and radiation. 13 of our roommates died. My son, Kyle, was the first person to survive his disease twice in the world for 26 years. A miracle.

    I wrote a book called, Cancer’s Gift, that I would like to send you a copy if you’re interested.

    I’m stateside for a few weeks and was just paring down my belongings to six boxes. I’m shipping my kids some of my most treasured possessions so they don’t sit in boxes for another 7mo+. I’m 59 years old and embarking again to parts unknown with no particular plan. It’s a bit scary but it’s what I’m meant to do. You inspire me so much.

    You should be so proud of your resiliency, your work, the Legal Nomad family you have built, and putting it all out there for us to read.

    You touched my heart,
    Donna

  17. Hi ms jodi,
    I stumbled on your blog a few years back and reading this just now, i feel bad learning of your medical condition.

    I always enjoy reading and following your adventures and include me to the long list of total strangers wishing all the best for you

    This comment is part well-wishing and also part thanking you for all those times your write ups have inspired me in my travels and life in general. It is sometimes weird how you feel a connection to someone you’ve never met.

    I hope this comment reaches you in the best of spirits.

    Cheers!

    Sheng
    Philippines

  18. Jodi,

    I don’t know all the issues you have, but I am being helped by learning about the power of sunlight, water and magnetism to heal. Dr. Jack Kruse is an incredible guy and you can access him by googling Youtube + Jack Kruse. I did a consultation with him and he said I could heal from my severe lung issues (that western allopathic medicine has no cure for) using natural means. He speaks at a natural food conference in 2016 [link removed] Nourish Vermont 2017 [link removed]
    I trust you are healing. I am gleaning wonderful tips from you to send to my pastor who will soon embark on a trip to India with other devoted ministers to bring the love of God and Jesus and his healing to many village women leading devotional groups in their remote villages. You are helping the world become a better place and improving lives by your hard-earned and willingly shared wisdom. God bless you and keep you in the hollow of his hand. Amanda

  19. I am so sorry I have missed all that has happened since you were ready to leave for Duke. I live less than three hours from Duke in NC and might have been of some help. I certainly would have loved to participate in the group meditation. You might remember the individual meditation that involved a group of people revolving around the person who needed healing. I am so happy that you have found help at Duke and elsewhere. I am still catching up on what I found in searching my email. My spam filter must have been working overtime. For now I have a great healing aid, a puppy. He won’t stay a puppy forever. You could Google Irish Water Spaniel in an idle moment to see him. They all look alike. All of my best wishes, John

    1. Hi John, this is an older post (from April 2018) but when I updated it to note that I was re-leaking it also updated the publish date. I’m still leaking presently, and yes I remember and so appreciated your meditation visualizations! Enjoy the puppy. I sent you an email as well.

  20. Wow. I’m sitting in a bed looking at the ocean in Punta del Diablo Uruguay. My friends and family are at the beach while I’m stuck inside with some sort of gut problem. Which, while I’m sure is just temporary, having had cancer 13 years ago and a mom who died of pancreatic cancer relatively recently, I can never shake the worry of “what if”. In reading your story, while I wish you would not be going through the leaks at all, I am reminded that I am not alone in dealing with the trauma of life. Your story inspires me to embrace life and get up off this bed. Shit happens. It’s what you do with it that defines you. I admire you and wish a solid resolution of the leaks for you Jodi. I want you to be back in Oaxaca, doing what you love.

    1. Hi Sandra, Thank you for the comment and for sharing some of your story. The “what if” is a hard beast to tame, and I think a natural and human place for the mind to go. The challenge of course is how to maneuver through life without letting it suck away the energy you have. I hope for resolution too, and for a great 2020 for you and your family <3

  21. Thank you so much for this. I am sitting in a hotel room in Durham right now. My wife had her 3rd glue patch yesterday. I have lived this struggle with her and it is true so far that none of it has been permanent but the time in between patches has gotten a little longer, 14 months this time.
    Maybe this time will be the last… I hope.

  22. Frank Neuschaefer

    Jodi,
    You are a brilliant storyteller, and your strength and courage in the face of adversity is remarkable and inspiring. I’m happy I discovered your writings, and I’ll be sending all the best vibes as you heal.
    Yours,
    Frank

  23. I guess I came across this site because I was feeling so sorry for myself–I am 82 and this was to have been my last year of travel anyway, but three upcoming trips are obviously cancelled (and one may not refund any money as I had thought I only needed my health insurance while traveling and did not insure flights and cost of trip). I have had microscopic colitis for the last 4 years but have learned to live and travel with that by omitting gluten and taking loperamide daily. But you are so young to have handled such adversity! And still look forward, I am awed by your courage. I am now so grateful that I had the travel experiences I did, a career in science that I loved, and a wonderful second husband who shared my love of travel in the 32 years we were married until his death 7 years ago. I am now not sad because my travel days are over, but happy because I had the life I did.

    1. Thank you for the kind comment, Dawn. I’m sorry for your suffering and your pain, and I am honoured that my writing has helped shift perspective for you. All the best to you.

  24. Hi Jodi,

    I took a community service trip to Oaxaca a few years ago. I stayed with a local family, planted copal trees, and passed out food to those in need. I’m looking forward to the day that I can go back to eat the delicious “7 moles.”

    I recently also got a CSF leak after getting a spinal tap, so I know about the debilitating headache that you are talking about :( I just got my blood patch and I’m hoping for the best. I’m sending good vibes your way. Good luck!

    Marcos

  25. Someone forwarded your blog post to me after reading my IG post about the inability to ride my bike due to multiple sclerosis. I’ve had it for 34 years since I was 28 years old, and I clearly remember being diagnosed with a spinal tap and CT scan. There was no internet back then, or FDA approved meds to help me, no support groups, no information to find. No one told me not to stand up after the spinal tap – let the headache pain begin! OUCH!!!!!!
    Oh, how I wish there was a community for me back then.

    Keep going, the way you already are, to find your answers, and live your life. And keep this site going, because people really need it.

    Nice “meeting” you and take good care. Stay safe, too.

  26. Was looking for some takes regarding this topic and I found your article quite informative. It has given me a fresh perspective on the topic tackled. Thanks!

  27. Jodi, I’ve been a subscriber of yours for at least 8 years. I’ve always been inspired by your adventures, by your leap of faith from a safe career to life-fulfilment, by your perspectives on life and by your writing ability. I’ve recently stumbled back onto your emails after some years out of touch. I’m saddened to read of the condition you are dealing with, but super-pleased that something much worse didn’t befall you! I look forward to continuing to follow your writings. :)

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