so sorry to hear this! is it from IH? What is the condition exactly? What is their treatment plan?

They said I dont have IIh. But there not really sure its still possible. They said to watch my eye sight if it gets worse go to the emergency room but I can come back in a year. They really arent sure why I see light in my eyes. I walked out feeling like thy didnt care and they knew nothing

Go somewhere else immediatly! Did you ever have an LP to confirm high pressure? What they claim you have is very serious and you need someone following up with you more than every year! Crazy ass people!

I have an eye drusen as well. It can make your optic nerves appear swollen when they are not. My neuro-op tells me that to an inexperienced eye you will see swelling when it is really just the eye drusen. Lucky for us they are not going to cause any problems and there was nothing they wanted to do about it. I did have swollen nerves at one point to but that is now resolved I am told.
Don't worry it isn't too serious but you may want to get another opinion about the PTC.
Good luck :)
Mandy

Hey guys, buttercup especially, is it really not that serious? I thought is was, before my g-pa had glaucoma he has this issue ongoing and the VA NO kept telling my mom that there was no cure and sight will deteriorate, am I wrong, if so sorry for asserting it is serious. I am still hopeful you get another opnion and better care.

I am going to have to look this up!! I have been saying this whole time that something wasn't right with them diagnosing me with PTC because of the fact that the only thing I have is papilledema, slight blur in a spot in my right eye and floaters! Everything else is normal! Just went to the eye dr because I thought I needed some glasses and still think the same thing. I also recently found out that my dad had a proceedure done a few years ago for the onset of glaucoma and fluid build up on the eyes. Who knows what my problem is, all I know is I pray someone figures it out soon!

Good luck to you! The dr I currently go to is my second opinion dr and so far I really like him. He has taken far more steps to figure this out in the last 2 times I have seen him than my last Neuro did in the whole month I was going to see him.

get a second opinion!!

Hi all. Mary and I have done a lot of research about this and after reading a few of your posts I have to add a bit,ok?

First, Marys opening pressure was only 7 which right away was a sign that IIH was not the culprit.
Next, Mary took large quantities of Vit D back when all this started.

Much of what she seems to be going thru, I think can be back tracked to this Vit D intake. And, altho Glaucoma is something she really has to look more deeply in to , I have my doubts about it being anything to do with us IIHers.

To my mind, the poor woman has been badly treated by her drs, very careless, and not at all sympathetic.
Its small wonder she is so confused as to what is really wrong as these arrogant drs seem reluctant to tell her, or help her.

I would agree with you all, she needs to see some new, caring drs. Hopefully, she will be able to find them.
Mary, we have your back! And will do our best to help you get out of this mess. Cath