I have never been told that...what dr told u that??? A neuro or an opto?

Optho

The last two times I went to my Opthomologist I was told There was no swelling, but since I am still having extreme symptoms they are slowly looking into stuff... It seems to be such a drawn out process of elimination.

They have pretty much told me I have calcification behind my eyes, that Its really fake swelling and that to come back in a year...

Mary, don't mind that coming back in a year! Go and see them now and get some answers! I have sent on the things that I found out all about this. Read it up and then go back and demand some attention. They cant just leave you like this. You deserve an explanation.

Hannah, altho your paps may be healed, that is not to say they healed with out causing some damage, I'm afraid to say.
I have had paps for 4 years with the first sign of improvement this year.I was still having a lot of trouble with my eyes and went back to have them checked, again.Same thing but when I pushed the Optht for an answer he explained that paps can cause long term, permanent damage. But saying that, I did get back a lot of my vision which I thought was gone for good. The rest, well, I have come to accept it and am glad it is not worse.
I hope this is not the case for you but must be considered. Cath

I would like to point out that paps can come and go..depending on your pressure...when I was first dxed I had paps in both eyes..then I had my lp..which lowered my pressure a bit..didnt have paps for months..then they came right back...so although..u may not have paps at the present moment, does not completely mean that they will not return..I would continue to go to the optho..it is vital..

That's how I found out about the PTC - I was getting new glasses and had my eyes dilated - and had bilateral edema. I feel that it's subsided now but I'm not due back for a check-up until November.

I just heard something similar from neuro-op as well. After I had the stent surgery my paps went away...great! But I still feel the same as I did then just without paps so my doctor tells me my IH is controlled. Controlled? How? I still feel like crap. But doctors know everything....I think not. I have heard similar things from others at times even though we know you can have IH without paps, several on here have.
:) Mandy

went to another optho yesterday and He believes theres a chance I still have IIH but theres no way to know unless I have another LP. he is sending in a refferal to see a neuro and to go from there. He explained to me some people just have what it looks like paps but thats just how there body is. He said that if you never had them before and it randomly pops up then there is something to worry about.He also explained that because I got better after my LP last time that its not consistant with psuedo paps and that the optic nerve drusen he sees is not consistant with me seeing light in my eyes. So now another waiting game

I have not had paps in almost two years...my neuro thinks that my symptoms might now be caused by the the Diamox. From his mouth to God's ears. I am weaning off now, but I am hoping that the paps don't come back...I still feel my "wet" brain and some pain, so I don't get the whole "it's over" when the paps are over. We shall see. I will add that I am afraid to come off the Diamox, but I know that I need to do so.