Idiopathic Intracranial Hypertension

Question

I finally had my dr visit with a neurologist !! He was great Listened to everything i had to say and explained everything multiple times so i could understand. He said besides my Chiari i could have something called Idiopathic Intracranial Hypertension . He thinks i may have this too because my optic nerve in my right eye was swollen. He ordered a CINE , a MRI of my head ( i never had a full mri of my head done..they found my chiari during an mri of my neck), and an EEG (because i keep passing out when i sneeze cough strain...r just randomly ). He said that if he thinks my Chiari isnt whats causing my symptoms and the scans show nothing else wrong that he wants to do a spinal tap because its the only way to diagnose Idiopathic Intracranial Hypertension. He also said that either one can cause the other. Has anyone been told this ?

selmaS · Accepted Answer

Hi...I did reply to this but there was a glitch and it did not post.

 This is very common, as I mention many times that we shoulsd be tested for ICP which is what the Dr feels u have and a LP is the best way to rule this out, ICP can cause the cerebral tonsils to herniate when chiari is not congenital....so u would have acquired chiari.

 As long as the techs and Drs r all well aware of ur herniation and u follow directions to lay flat for 48 hrs afterward, no lifting  etc... u should be able to have this testing,

 Not all NS's and techs r aware of how this can affect us and may draw the fluid too fast causing the tonsils to herniate further...

 Having a well informed chiari NS is best....

selmaS · Answer

I am sure it is possible, but over time I am sure at some point optic issues would develop, unless the pressure was addressed. JMHO

SimmyRae · Answer

Im very glad i switched also. I know i been fighting with it my whole life..whats another few months to a year . Just want to make sure i have all the right test done before i decide on anything. I think its important to have all the information in front of me.

selmaS · Answer

So glad u switched !!

 Make sure they rule out syrinx's and EDS too !!

 It may seem like it ids taking forever to get newhere, but the more testing is the best way to go.

 Keep us posted : )

SimmyRae · Answer

he doesnt operate so he also said that if he feels i should have r possible have surgery that he will send all my info to a chiari specialist in texas i forgot the name that he told me.

SimmyRae · Answer

he did mention how he had to do it slowly cause of the herniation. He explained all of this. (: Hes getting all the scans first to get a better look at my chiari because my last dr didnt do it ..he just seen it and wanted to operate. I wanted another opinion so i switched to this dr. who is the first one to actually order the right tests and check for other conditions as well.