Chiari Malformation Community
Idiopathic Intracranial Hypertension
About This Community:

This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Idiopathic Intracranial Hypertension

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 ?
Blank
620923_tn?1405964489

  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....
5 Comments Post a Comment
Blank
620923_tn?1405964489

  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....
Blank
3147301_tn?1345717634
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.
Blank
3147301_tn?1345717634
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.
Blank
620923_tn?1405964489

  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 : )
Blank
3147301_tn?1345717634
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.
Blank
Post a Comment
To
MedHelp Health Answers
Recent Activity
10588019_tn?1411320063
Blank
kkluv added the Heart Rhythm Tracker
2 hrs ago
10588019_tn?1411320063
Blank
kkluv added the Gastro Tracker
2 hrs ago
10588019_tn?1411320063
Blank
kkluv added the Autoimmune Disorder Tracker
2 hrs ago
Top Neurology Answerers
620923_tn?1405964489
Blank
selmaS
Allentown, PA
Avatar_f_tn
Blank
mikeysmom1995
Oxford, MI
1667208_tn?1333111449
Blank
zygy2
NH
5640779_tn?1375816966
Blank
desertstorm2009
AZ
Avatar_f_tn
Blank
Elisaandbucky
Charlotte, NC
7530528_tn?1405298278
Blank
AKC_75
TX
Chiari Malformation Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
Top Neurology Answerers
620923_tn?1405964489
Blank
selmaS
Allentown, PA
Avatar_f_tn
Blank
mikeysmom1995
Oxford, MI
1667208_tn?1333111449
Blank
zygy2
NH
5640779_tn?1375816966
Blank
desertstorm2009
AZ
Avatar_f_tn
Blank
Elisaandbucky
Charlotte, NC
7530528_tn?1405298278
Blank
AKC_75
TX