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Posts (9)

Mar 17, 2018 · Empty Sella Syndrome in Brain & Nervous System

I just get notified thru my email and reply thru there. I haven't gone to the website in a long time due to being active in other groups on social media. But I try to check in when I see someone added a comment or has replied here.

Mar 5, 2018 · Empty Sella Syndrome in Brain & Nervous System

Yes, mine was caused by excess Cerebral Spinal Fluid production. I was diagnosed with Idiopathic Intracranial Hypertension and have lost vision permanently due to it.

Sep 18, 2017 · Empty Sella Syndrome in Brain & Nervous System

@sharenka have you been to an opthalmologist to check your eyes for papilledema? It’s swelling of the optic nerve. What you described in your post sounds a lot like Intracranial Hypertension. As for the CSF leaks, it is possible to leak out if your eyes , nose and ears, although very rare. I would recommend seeing a new Neurologist or neurosurgeon to check into that and ask to be tested for IIH.

Sep 18, 2017 · Idiopathic intracranial hypertension in Brain & Nervous System

Hello! I’ve had Idiopathic Intracranial Hypertension since 2013. I went through 4 hospitals and too many doctors to count to help me. I had 2 strokes due to the high pressure on my frontal lobes. I’ve recovered from them well. I’ve had to have over 30 spinal tap to help control the pressure and in January I had 2 stents placed in my transverse sinus. They have helped tremendously and I’d recommend seeking a neurosurgeon to take a look at that for you. If you have stenosis of the transverse sinuses, you may be a candidate. Also, a shunt may be an option to help drain the fluid continuously. The IHRFoundation.org has a lot of information on their website as well that may be helpful to you. Also, from what you described pain wise after your spinal tap, it sounds like you got the dreaded low pressure headache afterwards. Unfortunately, since I just saw this, it won’t be helpful this time, but if you have another tap and get a crushing headache afterwards, you may need a blood patch after to seal any leaks from the tap. It helps a lot.

Aug 11, 2017 · Head Pressure and Feel like Passing Out in Stroke & Cerebrovascular Diseases

I had those same symptoms and was diagnosed with Idiopathic Intracranial Hypertension, previously known as Pseudo Tumor Cerebri.

Aug 11, 2017 · Empty Sella Syndrome in Brain & Nervous System

Have your doctors discussed with you instead of getting a shunt to have stents placed to open up the stenosis of your transverse sinus? It is A LOT less invasive and has a overnight stay and only a small incision in your groin where they go in with a catheter to place the stents in your brain. I’ve been diagnosed with IIH/PTC for 5 years and researched like crazy and joined all the groups i could find on FB. There are about 8,000 of us world wide now. I had my stents placed in January of this year and it is SO much better! I’m slowly regaining my life back. Will be thinking of you!

Aug 11, 2017 · Empty Sella Syndrome in Brain & Nervous System

@jes078 I’m an IHer too! I’m in several of the groups on social media where we can all instantly talk and ask questions. I’ve been diagnosed for 5 years now and the IH community has grown all over the world.

Aug 11, 2017 · Empty Sella Syndrome in Brain & Nervous System

@cindybrown with the blurry vision have you had your eye doctor check your optic nerves for swelling (papilledema)?