HI
I'm Sarah. I'm 33 years old. I'm looking for a little advice.

About 4 years ago I went to the eye doctor for a scratch cornea and he said I had papilledema and rushed me to get an MRI and to see a Neuro-ophthalmologist. It's kind of a blur now, I just remember them saying possible brain tumor and being so relieved when they said it was clear. The neuro-ophthalmologist said I had drusen, and there wasn't much that could be done except watch it. I did not have an LP.

Flash forward to 3 days ago I live in a different state and went to an eye doc to get new glasses. This doc saw the papilledema again. At the time I couldn't remember the name drusen, but I told him what I went through before and he said this could be something new or the same thing. Then he asked me if I had headaches? "Yes, like every day." If I ever have whooshing in my ears, "Actually, yes it's really annoying." If I ever see spots "Yes, like floaters." If I ever have darkness in my vision, "Well sometimes, it's like a veil over my eyes but it doesn't last long." He said I really needed to get checked out again immediately and he sent a referral to a neuro-ophthalmologist.

I wasn't worried because I had been through it before. But after coming home I thought about it and realized I didn't have these other symptoms the last time, just headaches/migraines. I'm wondering if maybe I just now developed IIH or if the drusan was a misdiagnosis, or if I have both. If I have IIH at all that is.

The past two days I've had every worse headaches, though maybe I'm just noticing them more. This all happened on a Friday and the neuro-ophthalmologist hasn't set up an appointment yet. I called their office and they said they doctor won't probably get to looking at my referral until next week.

My question/s to all of you. Have you experienced this when getting diagnosed? The eye doc acted like there was such urgency and now the neuro doc isn't even looking at the file. The last time this happened I was sent straight to an MRI the same day.
Also, looking at my symptoms, what do you all think?
And, anyone been diagnosed with drusen to then be diagnosed with IIH later?

Lots of questions I know, thanks for your input!

Honestly, I had never heard of Drusen and had to look it up. I know nothing about it, but I do know that they confirm IIH with a spinal tap. If you didn't have one back then, there's really no way to know. It could have resolved itself and reappeared or just gotten worse over time. You can definitely get used to most symptoms, so it doesn't seem as bad until someone brings attention to it.

Your symptoms do seem like IIH, but a lot of people are missed diagnosed in the beginning. I was diagnosed with Encephalitis as a teenager and now they're thinking it was the start of my IIH. My doctor at the time also didn't do a complete panel of tests, so I'll also never know. I think most do the best they can based on their education and experiences, but unfortunately that usually doesn't include rare diseases like IIH.

When you're working with specialists, it can take a long time. I think most of us have been plagued with the "hurry up and wait" process throughout our treatment. If you notice any changes, especially to your vision, I would call them back and let them know. Otherwise, it's just a waiting game. It's frustrating and tedious, but hopefully they'll find the right diagnosis and treatment.

I'm not sure if that helps at all, but let us know if you have any questions or concerns. We'll do our best to help you through it!

Take care,
Julie

hi Sarah;
my gut tells me that the Drusen was a misdiagnosis.  I don't know how they justified not doing an LP 4 years ago, especially if you were having headaches.  maybe the neuro-ophthalmologist can speak to this when you see him.  I think the eye doc this time did not flag this as urgent because you had the MRI last time and it ruled out a brain tumor, so he is assuming that this is the same thing.  you definitely have all the symptoms of IIH now.  hopefully this eye doc did complete vision testing on you and there is no vision loss?  if so, that is a good sign that since you have had this for 4 years or more, you haven't had any vision loss.  vision loss would be the other thing making this urgent.  if you perceive vision loss then this is a medical emergency and I would call back that clinic to get in ASAP, or try to get in ASAP to a regular ophthalmologist or neurologist.  After 4 years and worsening symptoms, I do think that another MRI is in order, plus an MRV of the brain.  I also think an MRV of the neck should be done.  the neuro-ophth should be able to set up an LP for opening pressure by a neuro-radiologist, but you probably ought to have the imaging done first.  they like to rule out a brain tumor before doing an LP, since if the pressure is hugely elevated then releasing it all of a sudden can cause issues.  you should be able to have all of it done in the same day at a radiology suite, ordered by the neuro-ophth.  but any doc can order it, if you think you can get in with a neurologist sooner.  once you have the testing done, they can start treatment.
Deb