Hi I was diagnosed in October after my eye dr found papilledema on a retinal imaging. I think that's what it's called anyhow. I opted for the picture rather than dilation and has left my old eye dr as I perceived I was getting poor care and was normally waiting over 2 hours past my scheduled apt time. She then has my neuro who I have been seeing for years for what we thought was migraine do a lp which came back elevated and the diagnosis of iih was made. I have been referred to a neurosurgeon as conservative measures have failed. The surgeon wants to reconfirm all findings because he is surprised I am not overweight. Frustrating! He thence me see my past eye dr who missed all of my signs over the past years such as double vision, dilated pupils that would not respond to light. The eye dr again said I am not heavy enough to fit the dx. He found some anomalies but brushed them off. I again made him take the pictures which showed papilledema but he did not send these to the neurosurgeon. Just wondering if this is normal and how everyone else's pap was diagnosed. Also would some of you share your opening pressures? Mine was only 28 but I attributed that to my being thin and having less intrabominal pressure. The lp made my headache magically disappear which I thought was telling in itself. Same surgeon says this is not high and he doesn't think I have iih. Not that I want to have a disease but it is so fitting and I want treatment, not to be thrown in the migraine category. Also my new eye dr that I like has been monitoring my progressing vision loss. I am afraid if they write me off as migraines my vision will not be monitored. Any feedback would be much appreciated!

28 is high and you have IIH by that criteria and also by the fact you have papilledema.  your docs are idiots.  so sorry!  there are a great many of us here who are thin and living proof that the stereotype is completely misleading if doctors are thinking it has to be there.  it doesn't.  they don't know what causes IIH so until they do the docs need to use the Dandy criteria, not their own personal bias, to make the diagnosis.  look it up on Wikipedia; you fit it.  take it to your surgeon and ask him why he thinks you don't have it when the Dandy criteria say you DO?
I actually have had OPs 220-230, but I improved with the tap and was diagnosed.  I don't have pap.  I think it's because of the anatomy of my eyes and the fact my OP is lower.  I actually have proptosis.  which of course they don't think is from the ICP.  whatever.

My papilledema has always been diagnosed by dialating and looking into my eyes..it takes like 5 mins once your eyes are dialated. And, you dont have to have papilledema to have IIH..its just one symptom. I think I've only had pics done once and they use them for comparison. Usually opening pressure from LP & symptoms following LP confirm diagnoses of IIH. Body size has no bearing on IIH or pressure levels. The largest percentage of people diagnosed with IIH have traditionally been overweight women of child bearing years, but men, women, & children of all ages & sizes have been diagnosed. There are even some folks that gained their weight AFTER diagnosis.

My opening pressures have varied, but was only 20 when diagnosed..my symptoms went away once CSF drained, so decided that pressure was too high for me. Now it's one of my "normal" pressure settings. Everyones normal is different and can change. The scale used is really just a guide. I've had pressures in mid 20s, high 30's, & so high it blew the needle out of my spine or gauge didn't go high enough to measure it..just to give you an idea of how drastically it can change. Oh, Ive also had pressures so low that they couldn't be measured, but that's another story.

I would suggest keeping a symptom log through the process & remind the specialists that the only time your symptoms improved was following LP..especially if meds haven't helped & your vision has been affected. It may take time, but keep looking and eventually you'll find someone that hears you.

Good luck!!!

Megan, I don't have pap, never did.  My opening pressures have been between 22 and 24, but as the others have said, the big determining factor was that my symptoms improved after having fluid drawn off.  You need to find a better set of docs.

I do not have pap, but my diagnostic opening pressure was listed as 32-36 (i STILL dont know why they put a range). I have had one other LP with an OP of 21, done while on Diamox, 2.5 months after first lp. but, yes, an op of 20 can be too high for some people. i think it's crap that they run it to 25, which is supposedly to account for obesity. I am 5'10 and 165lbs, the same as I was at my first lp; so i am not obese.

I have no clue what my eye pressures were when diagnosed, mine was first noted when the retinas were bulging then detached. My initial LP pressures unknown as the gage toped out at 550 and mine went out the top. The Dr. said he should bottle it for those who don't have enough. I had LPs 2-3 times a week for 5 weeks before the LP shunt was placed, This was in 1992 Its now june 2013 and they are finally doing a revision as all the Symptoms returned, they are placing a programmable LP shunt and going to try to unwrap the current catheter as it has wrapped around my spinal cord and is causing problems. About time.

I had papilledema on right eye, the left one was normal, when I was diagnosed.
I went to the hospital for a neuropapillitis (I had an image on my optic nerve on the MRI, and the doctors did a LP to see if I had multiple sclerosis or lyme disease, or ???). The doc was surprised to see the high pressure (I was sitting, and don't remember the pressure). I had a few LP after that, and felt better every time.

The papilledema was better after 3 years, but I have an optic atrophy, which I have to watch over.
This year, the papilledema came back, and appeared on the left eye. The symptoms are here again, and I lost 36 kg since I was diagnosed.