Venous Stenting for Intracranial Hypertension + My Experience

Venous stenting is an alternative treatment for intracranial hypertension patents that have something called cerebral stenosis. It is less invasive than a VP or LP shunt, and often has less complications. Recent studies have shown that most patients that have undergone stenting have had a significant reduction in ICP levels and symptoms associated.

In order to know if you qualify for stenting, you must first have something called a cerebral angiogram. Many have to travel to find a specialist to treat them, as this is not a common procedure.

Last year, I had 2 stents placed in my right transverse sinus at Weill Cornell in NYC. Here is my experience with stenting and some information that I've learned along the way.

My left transverse sinus was hypoplastic (not fully developed) and didn't have any flow, and my right transverse sinus had severe stenosis. Unfortunately, I didn't have much symptom relief, but my case is a bit more complex than many.

I later learned I have a connective tissue disorder called Ehlers-Danlos Syndrome. I also have chiari malformation and craniocervical instability. These conditions can cause all the same symptoms of IIH--and I will soon undergo surgery to treat them.

FACEBOOK GROUP: "Stent/IIH"
https://www.facebook.com/groups/198904797135988/

Doctors/centers that specialize in venous stenting for IIH:
**comment below if you know of more doctors**
-Dr. Athos Patsalides (Weill Cornell)
-Dr. Moghekar (Johns Hopkins CSF center)
-Dr. Kenneth Liu (currently not practicing)
-Dr. Kyle Fargen (Winsten Salem, NC)
-Mayo Clinic Rochester
-Dr. Dale King (Kentucky)

My surgeon talking about venous stenting: https://youtu.be/0kPvLySVJlo

Dr. Athos Patsalides + recent research study on venous stenting:
https://jnis.bmj.com/content/11/2/175

Dr. Liu + venous stenting in EDS patients: https://vimeo.com/190164038

Johns Hopkins + venous stenting:
https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/cerebral-fluid/procedures/ptc-stent.html

Patient experiences:
http://weillcornellbrainandspine.org/venous-sinus-stenting-patient-stories
https://weillcornell.org/news/how-a-venous-stenting-procedure-helped-one-woman-find-relief-from-pulsatile-tinnitus
http://weillcornellbrainandspine.org/patient-story/i-was-ready-not-be-lost-cause
http://weillcornellbrainandspine.org/patient-story/it-was-time-do-something
https://youtu.be/__M9v1FEHfs
https://youtu.be/kLa_EqrSl50
#intracranialhypertension #pseudotumorcerebri #venousstenting
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Видео Venous Stenting for Intracranial Hypertension + My Experience канала Rachael Elizabeth