I can definitely tell you, but I am thinking of sending my scans to New York instead as there is a specialist. I am going to reapply at Mayo at another date. Then hopefully who I can speak with will be of the quality of the first person. When it did not go well I should have said I would call back and to answer your question it is no longer idiopathic because the cause had been found it was stenosis,

Unfortunately I am not well enough to travel to even my outpatient appointments. I tried for years to get follow up, but because there is not papiledema anymore there no follow up from the surgery. I tried PT/OT/Speech was not able to recover like others in other states. I spoke with my primary 1 year ago and he was willing to put me on DNR status. When a doctor would refer me I would get an upset medical assistant telling me I was cured and no longer have IIH because I have a stent. Without clearance from the eye doctor I can go to the pain clinic for Botox with a family medicine doctor. I am getting counseling and at this point focusing on quality of life. I had initially wanted to go to Mayo for this in the first place but was encouraged by my family to stay home as it was more comfortable for them. There is not neurologist care. I found a different hospital to go to for the Botox and lidocaine, but because I am vomiting and unhealthy I am confined to bed I am ok. Pain doesn’t bother me. I am used to it. The vomiting does bother me. I appreciate you adding the people, but unfortunately my case is different because it involved my eyes and damage to them permanently. It sounds like what Mayo can offer is the same as here relief from the pain. I was more interested in getting my life back and stopping the vomiting than pain management. Because of the lack of care possibly or the condition of IH for many years untreated I think this is the consequence. I could not get in to get my eye examination for years. I got a regular MRI at one point after 15 years of headache and nothing was found.