Swollen Optic Nerves (Idiopathic Intracranial Hypertension)

I went for my annual eye exam and the optometrist told me I had swollen optic nerves and referred me to a specialist. The specialist seems to think I have Idiopathic Intracranial Hypertension (Pseudotumor Cerebri). My following symptoms consisted of very pain headaches mostly in the right temple and small pressure behind my eye. I have only had blurred vision 3 times within two months (and the blurred vision only a lasted a couple of seconds).

My vision field is perfectly fine and my CT Scan results didn't have any problems. I have been prescribed Acetazolamide (Diamox) to help with the swelling. I was been taking the pills for almost a month and have only had 3 headaches and the swelling has went down some. The doctor believes it will get even better.

I am scheduled for a Spinal Tap but I am unsure or not if I should go through the procedure because I do not have insurance. I have talked with a financial counselor at the hospital, but it will still be out of my range. Should I continue with the procedure or  wait until I can find better financial assistance and just continue with the medication and monitor my symptoms? Any other thoughts would be appreciated.

Thank you.  

[Ray T Oyakawa, MD]

You need the spinal tap.  They have to determine the pressure on you brain.  Untreated this could result in serious problems including blindness.

Dr. O.

[cibentley]

2010-Oct 20 My niece was just diagnosed yesterday with IIH, Idiopathic Intracranial Hypertension, pseudo tumor cerebri. Her vision is getting very bad at times & she was told that she could go blind. It was strongly  recommended that her eyes be treated before they put a stint into her brain to drain the fluid so she won't lose her vision. Doctors are checking her eyes every 3 weeks.  She lives in Michigan outside of Detroit. Time is short with her condition progessively getting worse.   Having gone online, we are unable to locate an eye doctor specialist that knows how to treat IIH patients. If you have any recommendations you can post on this site for us, please let us know. Thanks

[Cath278]

Hi. Your niece needs to be under the care of a Neurologist and a Ophthalmologist. If its possible, also a Neuro Ophthalmologist.
These drs usually work as a team, the neuro to take care of the brain and the extra csf, the Ophth to look after her eyes.

If she is having vision problems, she could have paps, Papilloedema, swollen optic nerves. This is caused by the extra pressure from the csf pushing on the optic nerves.

Have they started her on medication yet? Diamox or Topamax.

Try not to worry too much. People who end up losing their sight are the ones who didnt take care of them selves. Left untreated, you can loss your eye sight but it very seldom happens when you are under the care of the specialist.

I  have IIH  or PTC as it is known as well, for two years. I also have a VP shunt. If I can help, drop me a line. Good luck, Cath278