Under pressure! (my brain that is)
December 18, 2011 12:38 PM   Subscribe

Looking for info, advice, doctor recommendations related to idiopathic intracranial hypertension and neurology in NYC.

You are not my doctor, etc. etc.

Anonymous because I don't want my medical history all over the internet: On Friday my optometrist noticed I had swollen optic nerve and some hemorrhaging in my right eye and suggested I go see neurologist ASAP to make sure it wasn't anything serious. She informed me it could be many things, but better to get the ball rolling before the holidays to cross out anything that could be really bad.

She suggested I go see a neurologist as opposed to waiting around an ER for hours and was able to find someone for me to see that day at a small private office near where I live. The neurologist took a look at photos of my eye asked a few questions and stated that an MRI was definitely in order since one thing my symptoms lined up with was idiopathic intracranial hypertension.

He was good about explaining what that meant and what possible road of treatment it would require (like if my MRI came back clear, then we might move on to lumbar puncture, etc.). But he also didn't really win any confidence points from me because he was sort of giving me mixed messages, both sounding doom and gloom about it as well as not really seeming to think it was a big deal.

For example, he said "You're going to have to be on medication for the rest of your life," after explaining what IIH did, but in my own research after getting back home, it seems like IIH can be chronic and not chronic, so I wasn't too impressed with having him so easily give me a life sentence to prescription medication like that.

Also after hearing his explanation I mentioned that with the holidays coming up, and my own plans for visiting family, was this something I needed to take care of immediately (as in, cancel flights, inform family, schedule hospital visits and such ASAP etc.), and he seemed exasperated by this question and simply answered, paraphrased, "Well, unless you are having bad headaches or the symptoms get worse, you can always schedule the MRI for when you get back I suppose. You won't be able to schedule an MRI appointment until I get this authorization code from your insurance anyways (me in my head: Uh, then what was up with freaking me out about how I'm doomed and stuff earlier and needing to be admitted?). You don't have headaches right now, so if you're with family just make sure you go to the ER if the headaches get worse."

Needless to see I'm looking to get a second opinion.

So on to my question(s):

1. The neurologist wasn't helpful about suggestions for hospitals to go to. Never having had any major health issues I just don't know of what hospitals to head to in NYC for something like this. He said he could admit me to a hospital nearby that's just a few minutes from my house, but I'd rather not go there since I've heard really things about that place (even my eye doc, who is on call there, shook her head and told me not to go there when trying to figure out who I could see ASAP). Does anyone have any suggestions in New York who have had to deal with IIH or just neurology-related stuff (specificially MRI and getting lumbar punctures), as to a hospital I could go to? And if I were to get my MRI there would I get a chance to speak to a doctor at that hospital or do they just do the imaging and send it back to the doctor I saw (who works out of a small private office, so I don't think he's got all the equipment there for further treatment like a lumbar puncture if necessary). If I have to go to a large hospital, I'd prefer to just stick with going there consistently for diagnosis and treatment of this as opposed to traveling all over the city.

I live in Brooklyn, but work in Manhattan, so any hospital in either borough is fine with me. I don't really have a preference in that matter.

2. Has anyone dealt with IIH and have any words of advice recommendation? I understand it's not conclusive yet and I have plenty of tests to work through before that gets sorted out (I might just have an infection or, more seriously, a brain tumor for all I know). I'm not freaked out or anything yet, just wondering if I should be treating this with more urgency than I am at the moment. I am noticing light flashes and discomfort in my right eye (the reason I went to so my eye doc to begin with), but haven't noticed serious things like my peripheral vision deteriorating yet, and in fact I'm going back to my eye doc Monday morning to do some peripheral vision testing because she said she wanted to keep an eye out on that for me. So should I be canceling flights and family holiday visits (just about six days or so) to try and see someone sooner than later or is that pointless considering the holidays coming up and whatnot?

Any other advice would be appreciated, even if it isn't IIH related and just even about things like how to talk to neurologists, what to bring up, the whole process of diagnosis (for example, if I get this authorization code from my insurance company, CIGNA, can I just schedule the MRI anywhere? Or is it something I gotta work out with the neurologist who wrote the script first? I really don't want him to be packing me off to the shitty hospital near me.)

I know the default answer here is go see a doctor about medical issues, but I have already and both professionals I've seen have made it sound like it's a concern but not an immediate one and my own reading on the topic makes it sound like any ill effect wouldn't be something that drops me dead instantaneously. I'm just mostly confused at the moment than worried, so just wanted to bounce this off the hive mind for some concrete answers before I go through another round of phone calls and doctor visits on Monday.
posted by anonymous to Health & Fitness (4 answers total)
Columbia-Presbyterian (at 168th & Broadway) has a neuro-opthalmology division in their Ophthalmology department.
posted by ThePinkSuperhero at 12:43 PM on December 18, 2011

I was diagnosed with a very mild case of this, so mild in fact it only came to notice when combined with a bad sinus infection it put so much pressure on my optic nerves I got weird visual disturbances.

I was diagnosed and treated in Australia so not sure how relevant how the doctors handle it will be to a case in the US what with insurance concerns at all, though I imagine treatments to be pretty standard.

Anyway I had a LOT of tests before they came to that diagnoses as there are a lot of other things to eliminate, the name basically translates as you have increased pressure in your cerebral fluid and we don't know why. I got the impression I got that diagnosis after everything else has been eliminated. I would push to get the tests done as a lot of the things that need to be eliminated can be pretty serious, I had tests that covered everything from Brain tumors to MS. I had a cat scan, an MRI, and 2 lumbar punctures (which sucked as they could not get the needle in due to my apparently weirdly shaped vertebra and I needed xrays and a specialist dude to come in and do them for me both times (specialist dude being his technical description)

Like you I didn't get headaches, for which I am forever thankful as they are supposed to be horrendous.

In the end the diagnosis was confirmed because basically they couldn't find any other cause for it so I spent every 6 months after that going to see an ophthalmologist and a neurologist for follow up exams and it never got better and it never went away and much to the puzzlement of my doctors it never seemed to become anything else.

As my only symptoms were the weird eye problems and the odd ocular migraine there was a lot of vigorous shrugging of shoulders and now I just keep an eye on it. I am not on any meds and never was the only times it effects me is when I am stressed or if I get sinus troubles (which apparently is not a normal symptom but the conclusion was it all just added to the pressure up there). Oh and birth control pills set it off for me as well.

I know someone who had it so bad that they needed a shunt in their brain to drain the fluid down to their abdominal cavity, their symptoms where screamingly bad migraines and continual dizziness and a lot of other stuff it doesn't sound like you have.

Find a doctor you trust and who has experience in handling this sort of thing there is a LOT to be eliminated so you want someone that knows what to look for, I was at a major Australian teaching hospital so they had seen most everything and got amazing care and all my doctors and equipment in one place.

Get all the tests. I was lucky in that my doctors never told me what they were looking for before they did all the tests but there is a lot of things that can present like this that are super serious and respond best to early treatment so make sure they are all eliminated. Ok so now I've scared you, which was not my intent.

MeMail me if you have any questions at all. I am not an expert on this subject or a doctor in anyway just someone that has had a very mild case of this for 6 years or so.

TL;DR Find a good doctor that can do all the test you need in one place. Get ALL the tests.
posted by wwax at 1:18 PM on December 18, 2011

This guy specializes in it.
posted by Wordwoman at 1:59 PM on December 18, 2011

Mamainodes in Brooklyn has a good neurosurgery dept. I have a great neurologist in Brooklyn Heights on Joralemon St: Dr Dominique Crosien. One of the best doctors I've ever been to regardless of specialty
posted by spicynuts at 2:25 PM on December 18, 2011

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