Has anyone had difficulty getting diagnosed with IH because the only symptom not showing is papilledema? I have all of the other textbook classic symptoms and have recently undergone 2 spontaneous cranial csf leak repairs. I have seen 2 local neurologists and neither believes that IH is the underlying problem despite the fact that I have had headaches since I was 17 (now 43) that have never responded to any treatment and no history of previous sinus surgery or head trauma to account for the leak. I have dizziness, balance problems, difficulty thinking/remembering/concentrating, constant ringing in ears, pulsatile tinnitus, empty sella noted on recent MRI (as well as on an MRI in 2005 which was ignored although the MRI was ordered for headaches). I am just feeling broken and lost at this point because until the leak became obvious last July, I knew that something was causing some problems that I was having and considering the leak with no other known cause, I thought IH was the answer and with treatment, I may be able to find help. I have also had so many symptoms related to my pituitary having pressure on it that no doctor had ever been able to explain. I have thoroughly researched IH and noted in several medical publications that not everyone with IH has papilledema. I'm so discouraged that the 2 neurologists that I've seen refuse to acknowledge this. Can anyone help? I am several hours from Duke, Chapel Hill if anyone knows of a neuro that specialized in IH there.


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If you have not done so already, call Duke & ask them!