Jodi Ettenberg
@legalnomads
Once a lawyer, then a travel and celiac food writer. Now disabled, writing about curiosity, health, and loss.
Today is Rare Disease Day, & I wanted to reshare a piece I wrote about mine, a spinal CSF leak that I sustained 6.5 years ago via lumbar puncture. It’s a debilitating condition, & for some cases like mine a permanent or even long-term fix is elusive. cnn.com/travel/article…
A big thank you to the LN community for their generous donations! Thanks to you, I was at the top of this year's Spinal CSF Leak Awareness leaderboard in the annual fundraising drive.
We want to thank each and every one of our community members who participated in our virtual challenge, donated, or shared our messages to help meet our fundraising goal. We're so grateful for you! Below, the final June 7th leaderboard from duradash® 2025's top 5 participants:
As someone who has had a spinal CSF leak pursuant to a lumbar puncture for 7+ years where repairs have failed, I am very glad to see less invasive tests available for Alzheimer’s.
Most people haven’t heard of this test, which is available in the US. It accurately predicts Alzheimer’s (not just if there’s a risk, but when). It is favorably affected by exercise and likely many other lifestyle factors. Here’s (almost) everything we know about it. In Ground…
New #CSFLeak paper 📝 in @theAJNR: a patient-physician collaboration to develop a structured reporting system for myelography in #SIH - check it out: ajnr.org/content/early/… @NeuroradLal @legalnomads @spinalCSFleak @CUNSGY @CUneurorad
It’s me! Full body hives after patch 2 and 3 when the fibrin dissolved (approx 2 weeks out), then I went into anaphylaxis on the table during patch 4 and needed an epinephrine injection during my patch. No more fibrin for me. 😭
A new study found a 0.49% incidence of hypersensitivity reactions during EBP with fibrin glue, none during 1st exposure, & with younger age, lower BMI, & inadvertent intravenous injection during the procedure increasing likelihood of reactions: ajnr.org/content/early/…
“We believe the solution lies in developing a validated, concise, and reliable scale, designed specifically for patients with these disorders, that captures global disease severity for afflicted patients while also allowing for assessment of core symptom components.”
The Cerebral Venous Disorders Severity Scale is the much-needed equivalent to NIHSS but for venous disorders. Fargen et al bit.ly/3PJGyHg put together a proposed scale for the evaluation of patients with idiopathic or venopathic intracranial #hypertension and are in the…
Helpful POTS article by @broadwaybabyto, including treatment options, mobility aids, tips for how you can make management easier at home, & more. Some spinal CSF leak patients have POTS secondary to a leak, but it also commonly travels with EDS. disabledginger.com/p/learning-to-…
Last night I used an 11" telescope and two cameras to capture the Strawberry Moon as it hung low in the sky. My goal was to reveal all the hidden color that is too faint for your eyes to see, telling the story of the moon's trauma.
New paper on head rotation & its effects on intracranial pressure: "These findings suggest that single position LP OP may only represent a snapshot of CSF pressure in a dynamic pressure system." jnis.bmj.com/content/early/…
I got many questions about our 🇨🇦 elections today from readers, so I put this primer together. Including how we don’t have exit polls, gerrymandering, and don’t allow any corporate donations to federal election campaigns.
Everything you want to know about #CanadaElections2025 happening now. Here's a comprehensive primer from @legalnomads patreon.com/posts/canadian…
Last night I used 4 cameras to capture the ultimate HDR view of the lunar eclipse This 300GB image shows the lunar surface in extreme detail, while revealing all rich color that was projected onto the surface See the full res crop or get a print in the reply to this post
“Chronic post-dural puncture headache (cPDPH) puts an immense burden of disease on affected individuals, families, & the health care system. Our results imply that cPDPH needs to be considered & should be prospectively studied.” frontiersin.org/journals/neuro… (Glad to see this article)
Fascinating piece by @Nate_Rgrs, diving deep into the increasingly bright (TOO bright) headlights on cars—both why it's happening, & how companies are leveraging their tech to appeal to safety-conscious consumers, despite it being poorer for roads overall: theringer.com/2024/12/03/tec…
