In 2008, I quit my job as a lawyer to visit Siberia. I started Legal Nomads to share photos and stories from my travels with friends and family. I planned to take only a year sabbatical to travel the world.
The travel itch all started back in high school, when I saw a documentary about the Trans-Siberian and Trans-Mongolian trains. This documentary planted a seed that grew over time, and I never fully put it out of my mind.
I never returned to the law. Instead, this site became the backbone of a new career in the decade that followed. As its audience grew, so did my appetite. Food was the best way I could connect to others in a new place. As a celiac, learning about food helped me navigate with less anxiety and chance of illness
In 2017, a lumbar puncture derailed my life when it left me with a chronic spinal CSF leak and disabled. Though my travels ground to a halt as a result, Legal Nomads remains a place to share lessons from the road, gluten free travel guides, and alternative careers for those wanting to leave the practice of law. On my sister site, I share resources about coping with grief and chronic pain, and what I’ve learned from this journey with chronic illness.
My CSF Leak journey began with a routine lumbar puncture (LP) to check for a brain bleed. At the time, I was living in Oaxaca, Mexico, working as a food and travel writer. When I got the LP, though, I was in the States, house-sitting in Brooklyn for a friend who was out of town.
The doctor explained that they would first do a CT scan, and then if it turned up nothing, a LP to ensure it was safe for me to fly home. I had friends and family who received LPs for various reasons without incident, and the doctor said it would be a routine procedure, over quickly. Not in my case.
What followed was excruciating. The needle was inserted then reinserted with attempts to reach my CSF. The local anesthetic did not work for me, and it was legitimately the most painful medical procedure I’ve had. I do not know how long it was, but friends waiting at the hospital with me said at least 30-45 minutes. Ultimately, they were able to access CSF and had me lay flat thereafter. They discharged me later that evening.
After the procedure, it felt like a horse had kicked me in the back, but I did not have the headache that often accompanies low pressure leaks. Until day 3, that is.
Three days after the LP, I stood to get some food and suddenly it felt like someone had hit me in the back of a head with a baseball bat. I became dizzy and nauseous and would have fallen over were it not for the friend helping care for me at the time. I had no history of migraines and this was unlike anything I’ve felt. It felt like I lost control of my entire body and brain.
During the next few days, I kept in touch with the nurse line at hospital where I got the LP to understand what was happening. Eventually, after a week of it not abating and my only able to lay completely flat — and even then, the room sometimes spun — they said to come in for a blood patch.
Unfortunately, the pain management doctor at the time said I seemed ok and that things would heal on their own. He said he’d never heard of someone not healing eventually, and the blood patch simply helped speed up the process. They declined me for a patch.
My amazing mum and stepdad then drove to Brooklyn from Canada to pick me up. Back in Canada, I went through months of frustration and pain as many leakers do at the beginning of their journey. For me personally it was a reckoning.
With sadness, I began to understand based on stories from other leakers with similar facts that my life as I led it - the freedom to live abroad and work for myself anywhere in the world- was likely going to change. As a non-resident of Canada at that time, I did not have a GP and had to seek treatment via the ER. There, the doctor told me I had migraines, and the neurologists wanted me to go to a headache clinic.
The continuous insistence that I did not have a leak is something many other leakers deal with. In my case, it surprised me because I did not have chronic headaches, and then I got an LP with 18g needles with multiple attempts, and then 3 days later the brain headaches began. These were accompanied by the “brain sag” occipital pain, photophobia, phantom smells, tinnitus, word-finding issues, nausea, tremors, and more — which almost entirely went away when I laid down. Except my new friend tinnitus - the tinnitus was around regardless.
Despite trying to focus on the positional aspects of my symptoms, the narrative of how I had none of these symptoms until the LP, and bringing papers from Duke, Cedars-Sinai, and other leak experts, I was told I had migraines.
Still, the local doctors were willing to do an MRI of the brain, which I seized as an opportunity to try and get leak treatment on my own.
Thankfully, at that time Duke was still accepting self-referrals, and I submitted the brain scans and a cover letter with my story. They agreed to see me and added me to their waiting list. My family and I trekked down to Duke - me laying flat in the back seat along the way. Duke performed a CT myelogram (CTM) that did not show a visible leak, and then 4 rounds of fibrin and blood patching total. Despite the negative CTM, Duke agreed to patch based on my narrative: no issues of positional headaches or migraines, nor the other symptoms, until my LP. They also said that it was generally more difficult to find LP leaks on CTMs.
I had improvements after each round of patching at Duke, and the third round sealed me -- and it felt very different right away. As soon as I stood up at the hospital, I remember turning to my doctor excitedly to tell him that I felt really different. After two weeks of this positive change, I fell while sitting down into a chair and blew the patch.
Duke agreed to one more round of patching mirroring the 3rd one since the 3rd patch worked but blew aggressively. During the patching process, however, I went into anaphylaxis, most likely (they think) due to the fibrin glue. It was toward the end of the patching, and I could feel my face swelling and my arms burning. They did IV steroids, and then flipped me over on my back to inject me with epinephrine for the first time in my life. Thankfully, the epi took down the reaction and I was able to wheel into recovery.
That 4th patch did seal me, though it took 6 weeks for the rebound high pressure to kick in. I was taking methazolamide throughout to keep pressure low, so at first it seemed like the patch didn’t work. But bit by bit, I started to get upright and walk and by a month after patching I was walking several kilometers a day very slowly. The months after were the slow process of managing high pressure and not pushing too hard, protecting my leak site with no bending, lifting, or twisting.
I spent 9 months sealed and was regaining some mobility when I blew my seal. I did so by sitting on the ground gently, so I’ve learned sitting is a problem for my leak fixing!
Unfortunately, that was September 2018 and as of yet I am still not sealed. While many people find great success with normal patching process, this leak revealed comorbidities that I only learned of during my journey: a connective tissue disorder, mast cell dysfunction, and most recently, the early stages of adhesive arachnoiditis.
My spinal CSF leak derailed my life, and my work. Many of us can say the same. Life changes in just a moment, and while I am not yet sealed again, I am thankful for those 9 months where I did get a semblance of normalcy back. I hope for more scientific developments: less invasive and more precise imaging, treatments for the underlying conditions that make patients like me harder to seal, and a better understanding of connective tissue and its role in hampering leak sealing.
Doctors and leak foundations are hard at work to educate and raise awareness for this condition. I’m grateful for the technology that led me to a group of likeminded people and helped me know that I could self-refer to Duke. Even for those who are lucky enough to be sealed, this condition leaves an indelible mark, and the community of leakers remains close and supportive.
Losing my mobility, the travel, and most of the food I could eat have been very hard. In the year since, I have worked hard on my mental mindset, and on processing the grief of losing the life I loved.
I don’t know what comes next, but it is important to me to continue sharing the good and the bad, in the hopes it makes my community feel less alone. I also want to keep raising awareness for the under-diagnosed spinal CSF leak condition, as well as the other chronic conditions I have.
For me, seven years into being disabled, I’m better at accepting that this is where my life is. My life with a leak may be indefinite. It may be not. The medicine may evolve to help me eventually in a safe way. It may not. Right now, this is where I am. And I’m not lying to you when I say that I’m honestly okay with that. Objectively, people pity the life that I have, and I think they pity me. I can see it in their eyes. And I get it because I think I would potentially pity myself if I heard my story from the outside. But I really promise that I have found this place of contentment even in the face of all that mess.
Ultimately, these last few years have taught me a lot about grief and loss, and about perspective. Health journeys can force us to look inward, and I look forward to the day when I can look outward once again.
In 2022, I joined the Board of Directors for the Spinal CSF Leak Foundation in the United States, and in 2023 I was named the Vice-President of the Foundation’s Board of Directors..