Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Found this April 2014 link to paper discussing optic nerve findings in IIH and IIHWOP patients. No, I have not purchased this paper, but here's link to portal site: http://informahealthcare.com/doi/abs/10.3109/01658107.2013.874452
Abstract: This study seeks to characterise potential differences in the cup-to-disc ratio (CDR) of patients with idiopathic intracranial hypertension (IIH) with papilloedema (IIHWP) compared with IIH without papilloedema (IIHWOP). The medical charts, optical coherence tomography (OCT), and digital optic disc photos of 30 patients (59 eyes) with IIHWP and 4 patients (8 eyes) with IIHWOP were reviewed retrospectively. The CDR values of the two groups were analysed using the Wilcoxon-Mann-Whitney test. Results showed a statistically significant smaller CDR in patients with IIHWP as compared with IIHWOP. These findings suggest that structural factors of the optic disc may play a role in the development of or lack thereof of papilloedema in patients with IIH.
I'm wondering if any of us with or without pap have ever seen clinic notes referring to this CD ratio? Especially since pap is such a tipping point in the DX process?
Abstract: This study seeks to characterise potential differences in the cup-to-disc ratio (CDR) of patients with idiopathic intracranial hypertension (IIH) with papilloedema (IIHWP) compared with IIH without papilloedema (IIHWOP). The medical charts, optical coherence tomography (OCT), and digital optic disc photos of 30 patients (59 eyes) with IIHWP and 4 patients (8 eyes) with IIHWOP were reviewed retrospectively. The CDR values of the two groups were analysed using the Wilcoxon-Mann-Whitney test. Results showed a statistically significant smaller CDR in patients with IIHWP as compared with IIHWOP. These findings suggest that structural factors of the optic disc may play a role in the development of or lack thereof of papilloedema in patients with IIH.
I'm wondering if any of us with or without pap have ever seen clinic notes referring to this CD ratio? Especially since pap is such a tipping point in the DX process?
He did say though that my Optic disc was elongated, something to do with that's why people might think that I had swelling when I actually don't. If I understand the cup-to-disc concept it sounds like I may have a larger ratio, which could explain why I have only had intermittent papilledema. I am going to check his notes though...
but this is great and I knew there had to be something different anatomically about IIHWOP vs. IIHWP. I have proptosis that dates back to 8 months after my first symptoms of IIH (which went undiagnosed for 12 years), but no one will acknowledge that the proptosis and vertical phoria are from IIH and not Graves.
I have one other source and she has never not come through for me on a paper, and I pay about 11.00 for the papers, through my county library. so nobody purchase it, I'll let you know when I get it. I definitely want this one and it will be going with me to my next and my son's next ophtho appts.
I have nothing in my Neuro-Ophth notes that even suggest such a measurement. And of course with my "conversion/functional loss" DX, I'm hunting desperately for anything that might throw some mud on this ridiculous diagnosis that must be made of exclusion.
Taleema: can't wait to see if anything shows up in your notes!
Thanks SM for checking your sources on this paper!!!!! Darn it with Graves it must be deadly hard to argue the proptosis -- so very frustrating.
then 2 weeks later, suddenly, my vertical phoria worsened to the point I had to go find my prism glasses which I had not needed in over 5 years. this was a primary symptom from my "graves". I also saw a worsening in my proptosis in my left eye, and my father saw it too.
so I had the antibody test done, and it was the lowest it's ever been: therefore NOT a graves eye flare. since I was on a steroid taper, that would be extremely unlikely. I would not flare, but as the steroid dose decreased, my ICP would go up.
I feel that I proved that the vertical phoria (and probably the proptosis as well) is due to ICP, and not graves. of course my ophthalmologist was unimpressed. WHATEVER.
I had Graves disease, was also having headaches and brain fog but no one thought to imagine I had anything else on top of it like IIH. was having pulsatile tinnitus and told my doc.....duh.
then I developed proptosis and diplopia all of a sudden. so they thought it was Graves and still think so.
I had bad eyestrain, told my ophtho my eyes were not working together. he said nothing wrong, sent me to a strabismologist. so, a specialist for lazy eyes. I told her that when I look at the horizon, there are two of them. then when I tilt my head to the side, the two images merge. OK, so as a medical student I knew that this indicates a superior oblique palsy. what do you think the strabismologist said? "I can't find anything wrong with your eyes, maybe you should go back on your antidepressant" WTF??? she had a really good reputation too and I used to refer patients to her all the time. I went to see an optometrist trained in vision therapy. this is a very specialized type of optometrist, who has special machines to test with. SHE found the vertical phoria, and was able to refract me to 1 diopter prism. the glasses corrected the eye strain and double images. now how the hell could I actually be refracted to a prism prescription if all that is wrong with me is in my head????
take home lesson: always trust your intuition. you know your body best. keep asking questions and get second third and fourth opinions until everything makes sense. it's rarely in your head. unless, of course, it IS (inside your skull).