Crohns and pseudotumor cerebri

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New Member

Date Joined Oct 2007
Total Posts : 13
   Posted 8/3/2009 7:52 PM (GMT -6)   
My son became sick about six years ago.  His first symptoms were stomach aches and then the headaches and blurred vision started.  They first started working him up for Crohn's because I have it, but could never find it.  Then they discovered he has pseudotumor cerebri, or the newer name is idiopathic intracranial hypertension.  Now, they have decided he does have Crohn's also because of his ongoing problems with his peri-rectal fisutula.  I have always thought the two are connected because they started at the same time.  Has anyone else here ever had pseudotumor cerebri?  It is basically too much spinal fluid in the skull and causes the symptoms of a brain tumor, although there is not actually a tumor.  No doctor can really come up with a connection for us, although some have said it could be possible, they just don't know how.

Regular Member

Date Joined May 2009
Total Posts : 201
   Posted 8/3/2009 8:34 PM (GMT -6)   
I've heard of it.  I was diagnosed with it while taking Accutane.  After stopping it and being monitored daily for a few days, the fluid level went down.  They talked of a spinal tap to drain the fluid.  Does he have to have those?  Hope all is well soon and they can determine the cause.
Diagnosed with CD 3 years ago.  Refused to take meds until recently started Colazal. 
 Currently on Prednisone 40mg.
I live by faith and not by sight....

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