Our Neuro Network

02/02/2026

High-performing, driven, perfectionistic people are often the most vulnerable to cerebral venous, CSF, and migraine disorders when rest and recovery are neglected. I learned this the hard way.

Healing required more than procedures. It required regulation.

Rest is not indulgence.

Self-care is not optional.

This is physiology.

This is homeostasis.

🧠 New blog post:
High Performance, Overextension, and the Physiology of Healing

I share the science, lived experience, and the framework that transformed my recovery, along with the daily affirmation that anchors my self-care practice.

🔗 Read here:
https://ourneuronetwork.org/high-performance-overextension-and-the-physiology-of-healing (link in Bio and Story)

Daily Affirmation:

All is as it should be.

My worth is inherent. It requires no achievement, no striving, no proof.

I am whole. I am complete. Everything else is abundance.

I am free to pause, to breathe, to recover in ways that honor my body, mind, and spirit.

I need no permission to care for myself with intention and love.

This is homeostasis.

01/28/2026

🔬 Optic Nerve Ultrasound & Intracranial Pressure (ICP)

Bedside ultrasound of optic nerve sheath diameter (ONSD) and optic disc elevation (ODE) provides rapid, non-invasive screening for intracranial pressure abnormalities.

• ONSD: ~90% sensitivity, ~85% specificity; cutoff 5.0–5.7 mm
• ODE ≥0.6 mm detects papilledema (~82% sensitivity)
• Combined ONSD + ODE: 93% sensitivity, 92% specificity
• Intracranial hypotension: ~10% ONSD reduction supine→upright (AUC ≈ 0.87)

Accuracy depends on standardized technique and training.

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References

Koziarz, A., Sne, N., Kegel, F., et al. (2019). Bedside optic nerve ultrasonography for diagnosing increased intracranial pressure: A systematic review and meta-analysis. Annals of Internal Medicine, 171(12), 896–905. https://doi.org/10.7326/M19-0812

Janitschke, D., Stögbauer, J., Lattanzi, S., Brigo, F., & Lochner, P. (2023). B-mode transorbital ultrasonography for the diagnosis of idiopathic intracranial hypertension: An updated systematic review and meta-analysis. Neurological Sciences, 44(12), 4313–4322. https://doi.org/10.1007/s10072-023-07016-z

Malky, I. E., Aita, W. E., Elkordy, A., et al. (2025). Optic nerve sonographic parameters in idiopathic intracranial hypertension: A case-control study. Scientific Reports, 15(1), 1788. https://doi.org/10.1038/s41598-024-85033-4

Berhanu, D., Ferreira, J. C., Abegão Pinto, L., et al. (2023). The role of optic nerve sheath ultrasonography in increased intracranial pressure: A systematic review and meta-analysis. Journal of the Neurological Sciences, 454, 120853. https://doi.org/10.1016/j.jns.2023.120853

01/10/2026

Intracranial Hypertension can be devastating, especially when standard treatments fail.

A new study may be changing what’s possible.

I break down the River Study, what it found, and what it could mean for patients living with IH.

👉 Read more: https://zurl.co/6JsiJ

01/08/2026

If you are alive, the tables can still turn for you.

12/25/2025

Accessible and affordable genetic testing can be life changing and saving. Thank you .

12/24/2025

🙏🏼All I want for Christmas is this:

If I have helped you or your family in your journey with cerebral venous and CSF disorders through my volunteer work at Our Neuro Network, please kindly consider leaving an honest review of your experience on Trustpilot.

If you are a colleague who has worked with me, please also consider sharing your review so that patients and families can gain a broader, big-picture perspective on the services and value I offer. Thank you so much!

www.ourneuronetwork.org

12/21/2025

When measuring the success of your efforts, please measure what matters — and with reliable instruments.

In December 2016, with a body fat percentage of ~60%, I was living with an aggressive malignancy, morbid obesity, an undiagnosed inherited neurometabolic syndrome, and significant physical suffering.

Today, I am cancer-free, with a body fat percentage of ~15%, measured using validated body-composition methods — not a bathroom scale. This level of body fat is clinically appropriate and ideal for my metabolic profile and medical risk factors, supporting neurologic stability, hormonal balance, and long-term health.

For a long time, I felt discouraged because my scale continued to report body fat readings in the 30%+ range, despite everything I knew about my physiology and function.

The problem wasn’t my body. The problem was the instrument of measurement.

Why bathroom scales are notoriously inaccurate for body fat:

🔵They rely on bioelectrical impedance, which assumes “average” bodies.
🔵Results are distorted by hydration, glycogen, sodium, and temperature.
🔵Accuracy drops sharply in people with high lean mass or metabolic adaptation.
🔵They frequently overestimate fat mass in non-average physiologies.

Today, I realized something important: I had reached my body composition goal long ago — without knowing it.

My focus had remained on imperfection, measured by an inaccurate tool and amplified by perfectionism, rather than on healing and restoration.

I’m sharing this because I want you to understand the power of sustained effort when it’s applied toward health, wellness, and your greatest good.

Change is possible. Goals are achievable. Dreams do come true.

Sometimes it happens in ways you don’t expect — and that is the beauty of life.

12/20/2025

A Holiday Message From a Place of Truth, Care, and Hope

Content note: Chronic illness, depression, su***de prevention.

I shared a deeply personal holiday message on the blog. This reflects my lived experience as a patient and my commitment to truth, dignity, and prevention. I would be grateful if my family, friends, loved ones, and the Our Neuro Network community would read it.

🔗 https://zurl.co/kGtko

12/20/2025

The evidence accumulates and supports the intensely lived and long-echoed narrative of our cerebral venous congestion community. We celebrate this work and its contribution to our community.

We will explore these topics and more on the Our Neuro Network podcast, uniting experts, patients, family members, and loved ones as one ohana of synergistic support.

More episodes coming soon from around the globe. Stay tuned.

https://ourneuronetwork.org/podcast

Think jugular stenosis only happens at 90° head rotation? 🧠 📚 Multi-institutional study finds that fractional head turns can trigger severe IJV narrowing and significant pressure gradients. 📚 https://bit.ly/4pxKSt7

12/19/2025

This month, I celebrate nine years cancer-free following successful treatment of poorly differentiated thyroid carcinoma with angioinvasion.

My course was complicated by an autosomal dominant neurometabolic syndrome—melanocortin-4 receptor (MC4R) deficiency, which contributed to hypothalamic obesity, cerebral venous congestion, multiple venous compressions, intracranial hypertension, recurrent cranial CSF leaks with periods of intracranial hypotension, and recurrent cranial neuropathies with dysautonomia.

To date, I have undergone 13 invasive procedures and surgeries to address these conditions and have sustained a 185-pound weight loss, supported by a comprehensive, holistic neurometabolic rehabilitation plan.

My smile and my scars remind me that life and happiness can thrive in the midst of profound challenge. They are daily evidence that we are all works of kintsugi—not weakened by what has broken us, but refined by it.

I am deeply grateful for my medical team, my family, my friends, and the community of patients and families who have walked this path with me. 🙏🏼