Jodi Ettenberg shared her thoughts with us about how she plans to participate in this year’s #duradash. Visit her page to see updates on her progress and give your support!
Jodi Ettenberg, 41, has been living with spinal CSF leak since having a spinal tap in 2017. In the intervening years, she has had four rounds of epidural blood and fibrin glue patching. She is currently still leaking.
What are you doing for #duradash?
I hope to be able to contribute 150 total minutes over the course of the two weeks. I still have a spinal CSF leak, so I will do my best! I love that this campaign is accessible to those who can’t physically “dash” like we used to.
What to you want people to know about spinal CSF leak?
My spinal CSF leak was due to a lumbar puncture. There remains a general belief that lumbar puncture leaks are “self limiting” and cannot be chronic, but I’m not the only patient with ongoing leak from a spinal tap. After writing about my journey with an ongoing spinal CSF leak, I’ve received many messages from patients who also suffered spinal CSF leak following an LP and were told it was migraine, only to get patched and sealed many years later.
I want more people to be aware of the risks of a spinal CSF leak for lumbar punctures. I hope, too, that via the advocacy of the Foundation and its members and volunteers there will be more education and awareness for spontaneous spinal CSF leaks as well as the consequences of lumbar punctures, epidurals, or epidural steroid injections. I hope that people with iatrogenic, chronic spinal CSF leaks can find relief over time. And I hope that practitioners come around to the possibilities of longer-term leaks for patients, especially those with connective tissue disorders.
I’d also be grateful if the narrative could shift around what having a spinal CSF leak feels like. It is not just “a bad headache.” It is completely disabling, and a shock to the body and nervous system. The entire body is affected, the spinal nerves, vestibular system, and so much more—in addition to the component that affects the head itself. I want people to understand the long arc of how a spinal CSF leak affects life in an all-encompassing way, even for those who get sealed. The aftermath of a spinal CSF leak can continue—whether through rebound high pressure, the need to limit movement, having to take medication and make dietary changes—and it takes mental work to not fall into fear about re-leaking. In raising awareness, I hope we can get people with spinal CSF leaks quicker care, more compassion, and hopefully less long-term side effects.
What research on spinal CSF leak do you hope to see in future?
I have many hopes! I hope to see further research in the overlap between connective tissue disorders and chronic spinal CSF leaks. I hope to see advances in imaging, so that locating a spinal CSF leak can be done with less reliance on invasive procedures like CT-Myelograms or DSMs. I hope to see more teamwork between spinal CSF leak centers and doctors specializing in mast cell disorders, so that those with diagnosed mast cell diseases are able to get procedures and imaging with a protocol in place to ensure their safety, and an option for fibrin glue that does not cause anaphylaxis for the subset of those patients who are allergic to it. There has been a lot of great progress in procedures and imaging, but there remains a percentage of patients who fall through the cracks. They are the patients with a constellation of conditions that create a big catch-22, and they are often the ones whose spinal CSF leaks don’t stay sealed.