An Unfortunate Spinal Tap Update: Leaking Again

After nine months of working so hard to stay sealed, and marking incredible progress with you along the way, I have releaked. When working on getting sealed, I explained here and on social media that the stakes were quite high, as a wrong move could re open the CSF leak that took so many patches to seal.

For many, the body can withstand the uncertainties of daily movement as the dura slowly heals. For others, the connective tissue is weaker or faulty, or they have bone spurs or cysts involved, and small movements carry big risks. Reaching for something too aggressively. Doing laundry. Picking something up off the floor. (One woman’s complicated case study here, with causes of leaks here.)

To maximize my chances of staying sealed, I limited my movements during recovery. I slowly reintroduced actions that put slight traction on the dura – I opened the oven, or drawers, or slowly climbed up hills. But I used a picker-upper device to get anything on the floor, and didn’t lift anything over a few pounds. I was patient, but vigilant.

What happened was a whimper, and not a bang. I simply sat down. And it seems that I sat the wrong way, stretching my hamstrings and dura in a way that it was not ready for. I didn’t notice much at first, except the taste of CSF in my throat occasionally. I texted my doctor about it but with no other obvious symptoms of a leak again, I took it easy and waited.

Days later, I walked to meet friends for dinner and I felt crazy numbness and burning at the leak site, that had spread all over my back and thighs by the time I arrived.

I’ve been back in bed over since.

I have about 20-30 seconds of “uptime” before that nauseatingly familiar “brain sag” feeling starts. Along with it, dizziness, neck pain, nerve pain and back pain. Familiar tortures that had mostly disappeared when I was sealed.

My body is in way healthier shape than last year after a strong focus on eating well and keeping my mind calm. I hoped that the improvement would mean I would be able to seal up the leak again without intervention.

I have spent two full weeks on strict bedrest, even eating lying down, following the protocol for sealing – flat on my back, no pillow, waiting. I started back on the meditation schedule I went to following patch 4. Friends came and brought supplies.

It has been over two weeks and so far no change. I still DO have hope that my body can seal up – my overall health has improved so much this year. But I didn’t want to delay in calling Duke due to their very busy schedule. They have said that they may be able to fit me in for December.


Those who read my prior post on how I went into anaphylaxis during round four of patching at Duke know that I cannot get glue patching again.

I did ask my doctor.

Me: what if you premedicate me with steroids and Benadryl to temper a reaction?

Him: no really Jodi, that was NOT mild anaphylaxis. It was the real deal.

Me: so that’s a no on premedicating?

Him: […]

Nope. No more fibrin.

This means that we can try my own blood, at the same sites as the last round of patching that did work (there were several targeted patches within that round). As with patching generally, it requires the body to kick in and create the scar tissues needed to seal up the leak in the dura.

Until then, I will keep hope that my body may create its own seal.


To state the obvious: this is a real mind-fuck. I worked incredibly hard to stay sealed, to feel vaguely human again. It feels bewildering, and oh so unjust, that climbing Mount Royal weekly was fine but sitting down the wrong way unspooled my healing. And there’s a “PTSD Groundhog Day” aspect to it as well. Yet ANOTHER October on bedrest, anticipating another December at Duke.

The silver lining is that I know the beast I’m working with, and there is no panic. Last autumn there was a lot of panic. This time, the symptoms are familiar and I know they all went away when I got sealed. I now know where to go for treatment, and how to maximize my chances of healing.

But I am heartbroken, really and truly, to be back here.

Regardless, I am doing what I said in my original post. Focusing on the progress I DID make. On the gratitude of being upright for those months of waking again. On this army of help and love I’ve been gifted around the world.

Yes, there are many people who don’t get sealed, but many more who do. And I have a doctor who has my back (literally, in December, and figuratively overall), and who patches people every day in his work.

And when I get too sad, I have Zack the cat at my side here, to keep me smiling.

Csf leak companion

I wanted to update you with this news, and say thank you once again for the incredible grace, love, and compassion you’ve all shown me during the last year of ups and downs. Many of you have already reached out asking how you can best support me in this time. I’m not sure I know yet, but I appreciate the question and will think more about how you can help.

As usual, more frequent updates can be found on Instagram and Facebook on the Legal Nomads pages there, as it’s easier for me than writing on WordPress via mobile.

With love from Montreal,




21 thoughts on “An Unfortunate Spinal Tap Update: Leaking Again”

  1. Oh, Jodi – my heart breaks for you, too. Sending lots of love and healing vibes for a well-sealed Christmas!

    Wynne (mutual friend of several of our travel tribe!)

  2. I am heartbroken to read this update, Jodi. It just all seems so unfair! Praying for you daily that God gives you the strength you need to endure another round of patching and recovery! ❤️

  3. Dear Jodi, you have been so brave and patient. Reading your latest entry really brought tears to my eyes. Will think of you during this season, which can be difficult even for those in the best of health. Hopefully, life won’t always be such a bumpy road. ida

    1. Thank you Doris. I’m hoping first and foremost that my body pulls through without needing to return to Duke, but I admit that’s looking less probable after several weeks of bedrest. <3

  4. Jodi, I so hope your doctor will be able to see you soon and fix your leak. Lots of love and encouragement, Nadine ❤️

  5. You are stronger than you now, braver than you realize. Plus, you basically have an entire industry cheering you on — that’s more than most people. You are SO loved and are in so many peoples thoughts. You’re in mine. I love you, Jodiface. You’ve got this and will be walking up hills again sooner than you know. Well, this spring since it’s cold in Canada <3 I LOVE YOU.

  6. Sending you strength, perseverance, and healing thought as you are being challenged once again. You will overcome. Take care.

  7. Oh no! I’m so sorry to hear this Jodi. You must be in absolute agony.
    Just know that we’re all thinking of you, and keeping our fingers crossed for you as you go through a painless-as-possible healing to fix-that-leak procedure. Lots of love,
    Victoria xx

  8. Jacques Lafortune

    Hi Jodi. I share your frustration in this unfortunate temporary setback. Your mental and physical strength will see you through this situation and you’ll be walking up Mount Royal in no time. Bonne chance et bonne guérison.

  9. My heart goes out to you–we were all thinking of you in Austin. As a fellow celiac with anaphylactic and other mysterious issues (two different years mostly incapacitated with unknown causes/eventual recovery), none of that helps me even begin to fathom what you have been experiencing. But there is hope. I am clinging to it for you. And praying for you. Please know you are not alone in this.

  10. I’m so sorry to hear about this setback. I’ve followed your blog for years and even met you at WDS in 2013. I’m sending good thoughts for a speedy recovery and (if necessary) successful next round of blood patching.

  11. Jodi,

    I do not know you, but feel as though I do, through your writing. I want to wish you my best for a speedy and complete recovery, and thank you for sharing your words and thoughts.


  12. Hi Jodi-
    We have been reading your blog for years. Thank you for sharing your story and your adventures. It helped give us the courage in 2016 to pack up our lives, take off on the trip of a lifetime and yes, start a travel blog. We are both sending you good vibes and positive thoughts that this difficult period of your life passes by quickly and you’ll be back up and running soon. You’ve got this. Please get well soon!

  13. So sorry that you’re going through this. I’ve had some injuries and recently hurt myself just unfolding my leg! It’s nothing like what you’re dealing with, so I’m not saying it’s the same, but to the degree I can, I understand the frustration of this thing happening again from something so simple…and the heartbreak of it happening again at all. It is unjust, and I do hope the wisdom of your body will heal this soon. Until then–or your doctors’ help–I’m glad you have so much love surrounding you and that adorable kitty to comfort you.

  14. Hi! I was just reading this post about your health issues, when the word fibrin jumped out at me. I was 6 years old when my parents were told that my very rare type of Hemophillia was from a lack of fibrin in my blood. (I had so many blood transfusions, as I would start “bleeding out”. My dad researched and discovered that peanuts help to rebuild the fibrin in the blood, which helps the clotting. He started feeding me massive amounts of plain peanuts, and I am here to say that I am now almost 62 years old, with no sign of it in my blood for YEARS!

  15. Hi Jodi:

    I’m so sorry you’re struggling through this. I also had a spinal tap gone wrong, which similarly resulted in a leakage of my cerebrospinal fluid. Ultimately, in my case, the issue was resolved after a few rounds of the blood patches, but I recall the pain I experienced during those weeks vividly and I don’t know how I could push past the pain if it continued for any longer. I am extremely moved by your strength and your candor during your experience and hope that you are ultimately pulled out of this nightmare. There is hope.

    I am keeping you in my thoughts.

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