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Answering Your Questions on IIH

For IIH awareness month, we asked the IIH community what questions they have on this neurological condition.

On Monday, September 16th we held a live webinar Questions on IIH: Answered. For idiopathic intracranial hypertension (IIH) awareness month, we asked the IIH community what questions they have on this neurological condition. By polling via our social media platforms, we had an overwhelming response. Questions ranged from remission to fertility and what is the latest research. This chat session was the most attended and most responsive. We were so impressed by how well informed and well educated people are on this rare condition. The specialists answering questions were neurointerventionalist Dr. Pierre Gobin and neurosurgeon Dr. Brian Snelling. 

Dr. Pierre Gobin is a neurointerventionalist at Weill Cornell Medicine in New York and has more than 30 years of experience in treating cerebrovascular conditions. He also has pioneered research on causes of IIH such as venous sinus stenosis. Dr. Brian is a neurosurgeon and endovascular surgeon at Baptist Health in Boca Raton, Florida. He has over 10 years of experience in the treatment of neurovascular disorders, including those used to manage IIH.

In this one hour lecture, the most discussed topic was the procedure of a lumboperitoneal (LP) versus ventriculoperitoneal (VP) shunt. As most patients with IIH present with high pressure and slit-like ventricles on brain imaging, it is safer to have an LP shunt placed if indicated. The longevity of a shunt placement ranges from days to years and many factors play into its success or failure.

The other commonly asked and discussed topic was the indication and placement of a venous sinus stent. The resolve of headaches, papilledema and recovery is mainly dependent on how severe and for how long these symptoms were prior to placement. 

Many factors are associated with IIH including: higher BMI, pregnancy, hormonal factors, PCOS and the pathophysiology is still unknown, hence the word idiopathic. There are many researchers looking into causes and areas of the brain like the glymphatic system

In case you missed this webinar or would like to rewatch this informative talk, click here

We will be hosting other specialists in the near future to discuss some of the questions we missed. Our next webinar will be on October 22nd at 11 am EST with Dan McQueen, a brain injury survivor who will share his Brain Hacks for those with IIH. You can register for all of our upcoming webinars here.

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Patient stories

“I know everyone says to trust your gut, so I’ll say trust your headache. Your pain is real, and ‘borderline-ish’ does not serve anyone.”
“Knowing your diagnosis and following the latest science and research is crucial in a world where you will encounter medical professionals who have never seen an IIH case.”

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