Update 6/1

Wow! A huge thank you to everyone who has donated so far. We’ve doubled my goal!

I’m chipping away at my activity goal: 13 hours of dedicated walking. This past weekend, Anya and I went out both Saturday and Sunday on walks. We did a 1.5 hour walk to Penn’s Landing on Saturday, and spent all afternoon walking to and around the Philadelphia Zoo! We had a great time.

Today, after I wrapped up my work at school, I set out on a southward quest to reach Wells Fargo Center, home of my now-beloved Philadelphia Flyers. All told, that took me another 2 hours or so, putting me at a grand total of just over 10 hours!

Walking South took me by a major landmark of my leak story. I passed Jefferson Methodist Hospital in South Philadelphia, where I had previously stayed for a week for inpatient treatment and invasive imaging. The inpatient treatment was catered towards migraine; it didn’t really help me. The imaging was separate; it was an effort by my treating physicians to localize my leak.

I had a spinal longitudinal epidural collection (SLEC) visible on imaging, but they didn’t know where all the fluid was coming from and therefore couldn’t treat it. Traditional CT myelograms had failed to localize the leak. A CT myelogram, for those who are unaware, involves the insertion of a needle into your spine to inject iodinated contrast into the CSF, which shows up when you are subsequently run through a CT scanner. This can help visualize CSF spaces, and in my case, it would ideally identify the site of the leak.
Since those CT myelograms had all failed to localize my leak, my physicians resolved to do an atypical procedure: an MR myelogram with intrathecal gadolinium contrast. Instead of CT, this would use an MRI. That necessitates a different type of contrast: gadolinium-based contrast.

Gadolinium doesn’t play nicely with the central nervous system, as far as I understand. Of course, the doses at which the contrast is added in this special type of myelogram aren’t toxic, but that doesn’t ease the anxiety. In fact, this was the most anxiety-inducing and overwhelming hurdle of my entire clinical journey. I remember sitting upright in my hospital bed, pumped full of dihydroergotamine (DHE), Benadryl, and lidocaine, in the throes of a panic attack in the hours before the procedure. In all prior procedures, I had the comfort of them being routine. This was the first truly unusual one. Even my surgery, years later, gave me little to no anxiety. There was little that was unknown about it, unlike this MR myelogram.

Obviously, I survived the MR myelogram. It didn’t end up helping to localize my leak, but thankfully it also didn’t lead to complications. Walking by the very window I looked out of as a petrified patient wasn’t quite therapeutic, but it was a nice reminder of how far I’ve come since that day.

In the spirit of looking back on anxiety and panic, I suggest anyone reading this far listen to “I Get Overwhelmed” by Dark Rooms.  

Thank you again for all the support!

Update 5/28

Today I walked with a friend over to University City. Thankfully it's not very hot out so it was quite a nice little journey. We walked for a total of 1:45, which takes me to just over 3.5 hours of walking! Planning to do much more in the coming days...

Update 5/26

Another walk today, this one much longer. Anya and I took a stroll around our neighborhood and Old City. Despite being in Philadelphia almost a full year now, I still feel like I’ve barely explored it. I guess I’ve been busy with class.

I have no epiphanies to report today, but I’ve now finished a total of 1:50 of my 13:00 hour goal!

Update 5/25

I started duradash® 2026 off with a simple 20-minute walk to the beach while visiting a friend on Memorial Day. The weather was awful in the best way: cool, windy, and raining just a bit. I couldn’t help but be reminded of Iceland, where I traveled this past summer with with my dad. Our hiking trips up and down mountains there served the same purpose as my walking now, allowing me to reclaim an adventurous and spontaneous nature. Something about Icelandic-like weather is especially good at reminding me to be thankful of what I can do now. Queue “Don’t Be So Serious” by Low Roar for the full effect.

Background

I’m thrilled to participate in duradash® again this year to support the mission of the Spinal CSF Leak Foundation! I have participated twice before, supported by family and friends in a quest to go walking for 1303 minutes over 2 weeks: 1 minute for every day I spent with a leak. I choose walking as my goal every year as a chance to reclaim the simple activity that was once excruciating; it shows the progress I have made in recovery despite continued setbacks.

Speaking of setbacks, over the past year I have noticed the return of several troubling symptoms. Thankfully, I’m still able to keep up with my studies and professional opportunities, but my activity level has had to decrease. I am grateful that my symptoms remain mild and I’m still hopeful that they are simply the result of living with an untreated leak for 1303 days, but it has gotten to the point where I must investigate. I am pursuing treatment again.

My goal:

For the sake of my own wellness while attending school, I will be setting a more moderate goal for myself this year: 13 hours of dedicated walking over 2 weeks, 1 hour for every ~100 days I lived with an untreated leak. This should allow me to be active in my day-to-day activities, while still adding dedicated walking on the side.

I am nothing short of utterly grateful that I can be upright at all; the condition is devastating and severely restrictive. I vividly remember the early days of my leak journey where I was restricted to crawling around my living space. Being able to spontaneously walk around the city, albeit with pernicious ensuing pain, is a freedom that I do not take lightly. Doing so to raise money for the Spinal CSF Leak Foundation is even more meaningful.

Why:

The Spinal CSF Leak Foundation is a beacon for patients suffering from this disabling condition. It offers broad programming: patient support through forums and responses to queries, sponsorship and support of conferences, establishment of the upcoming international patient registry, and much more. It does all of this on a limited budget with a volunteer Board of Directors comprised entirely of patients. Every donation helps maintain the Foundation’s broad programming and supports patients in utter suffering, as I was years ago.

What you can do:

This year, as with all years, I am accepting donations towards my goal. All donations go to supporting the Spinal CSF Leak Foundation in its programming, which includes patient support, advocacy, research, conferences, and more. Please know that for an organization for an underrecognized rare disease, every donation counts!

 Where I am now:

I am currently a student at Thomas Jefferson University in the Postbaccalaureate Pre-Professional Program: a lot of words to say that I’m redoing undergrad over 2 years to prepare to apply to medical school. Despite my passion for engineering and the wonderful experiences I had in that field, I am drawn to medicine owing to my own experiences as a patient. The program has been fantastic, and I could not have asked for a better group of students and professors. I am entering my second and final year of the program. Next duradash®, I’ll hopefully be gearing up for medical school!