Bulging eyes

[Bob65]

I know this is a terrible title for a thread but that is what is happing to me. I had a sinuse, lung and kidney CT Scan last week and they discovered I had fluid behind my eyes causing them to bulg out. I find it very hard to focus my eyes and it has given me "raccoon eyes", it looks like I have been punced in the eyes, it's not black and blue, its just black. It is very painful and it makes my eyes tear and turn red. They set me up for a "Orbital CT Scan" of my eyes on Monday. My eye doctor told me that this has a potential to cause blindness. I'm starting invusion (Cytoxan) treatment next week. Has anyone else had this problem with their eyes?
WG is a new adventure everyday. I told my wife, if it doesn't fall off and land in the sink, I'm not going to worry about it. Thanks Bob

[Sangye]

(Well that last line just made me crack up laughing. That's a keeper!)

What's the name of the condition? It's not pseudotumor cerebri, is it? That's an accumulation of cerebrospinal fluid in the brain (no tumor). Because the skull can't expand, the pressure pushes on the eyes and the optic nerve bulges. I have it-- a rare complication of Wegs, not due to Wegs itself.

[Sangye]

I had an orbital MRI a few months ago. Usually they just do a brain MRI to assess the eyes. No one told me the orbital MRI was so different. (I've had a ton of MRI's on pretty much every body part). The whole machine shook and vibrated so loudly for the first 10 minutes it literally rattled my head. I got a whale of a headache, felt very nauseous and felt like I had a mini-concussion. It wasn't just the usual loud MRI noise and vibration.

Even though you're not having an MRI, I just thought I should register my complaint.

[Maestra]

(Well that last line just made me crack up laughing. That's a keeper!)

What's the name of the condition? It's not pseudotumor cerebri, is it? That's an accumulation of cerebrospinal fluid in the brain (no tumor). Because the skull can't expand, the pressure pushes on the eyes and the optic nerve bulges. I have it-- a rare complication of Wegs, not due to Wegs itself.

Interesting: I had that about 15 years ago. Long before a Wegs diagnosis. Never really connected the two.

[Bob65]

Bob here,
My eye doctor called this bulging of the eye "Orbital Pseudotumor" it causes "proptosis" or protrusion of the eyes. The big problem is it puts pressue on the optic nerve and it can cause major loss of vision. Hopefully, they caught this in time. My rhumy called it a retro-orbital mass, and he said it is not uncommon with WG. Anyway it's painful and it really messes up my vision. It is almost impossible to focus my eyes. My rhumy told me that the chemo treatments should relieve the pressure but it may take awhile. Most of my symtoms are in my head and upper respiratory. My lungs and kidneys are good for the moment. I still have joint and muscle pain also.

[Sangye]

Orbital Pseudotumor is more common with Wegs than what I have. OP involves one eye usually, and doesn't affect brain pressure. There is the potential to lose some or all vision with either.

I'm wondering why they've ordered a CT instead of an MRI. An MRI shows soft tissue in better detail and is the preferred test for something like this. Maybe you have a contraindication for MRI.

It's vital to determine which it is--OP or retro-orbital mass. OP is a complication of Wegs, but not Wegs itself. ROM is Wegs. OP is limited to the eye, but ROM can progress like any other Wegs lesion. Please have top radiologists who really know Wegs read your films. If no one near you is qualified, you can probably have them sent to Hopkins for a radiology read.

You also need to get an ultra-specialist involved, for treatment and follow-up. Mayo Arizona sent me to a neuro-opthalmologist for evaluation and follow-up. Neuro-opthalmologists are hard to find. There was only one in all of Phoenix! JHU has several. (They even have a "Pseudotumor Team" comprised of neurologists, and other specialists. Don't know if that's for OP, also.)

I hope you find relief very quickly. How much pred are you on?

[jola57]

Hi Bob, I do not have as advance protrusion as you, but I remember that at the beginning my eyes hurt terrible, had pink eye and were slightly protruding. tests did not indicate your condition and i was just given steroid eye drops. I was on cylo and steroid already. The condition cleared in abot 3 to 4 week. I am on methotrexate now for 6 weeks and stopped cyclo after a full year of treatment just 2 weeks ago.
The other day while putting on makup I noticed that my eyes were protruding again, so I just keep a watch out. They hurt a bit once in a while. I don't have racoon eyes but like I have not had enough sleep.

[Sangye]

Please don't wait to get your eyes checked, Jola! One thing I've been told about pseudotumor (cerebri or orbital) is that most people who lose their vision permanently do so because they aren't following up regularly with docs. Even though my condition is stable on meds and the doses haven't changed in 3 yrs, I still see a neuro-opthalmologist every 3 months for a recheck.

[jola57]

I hear what you are saying, the pain is so negligible that I hardly can call it pain so it is not a rush. I guess I got used to not bothering my doc except wehn I need a refil.
I see my rheymy next in november, maybe I will ask my family doc to send me to get my eyes checked again as a follow up.

[Cindy M]

I also have a protruding eye. At first it was quite noticable but after being on preds it slowly decreased but as I lowered my preds in July it really to protrude alot, I had what looked like either an infection or pink eye. I had almost total loss of vision and alot of pain and headaches. I had waited too long to see the ophthalmologist and he was very concerned about the vision and protrusion. The first time I had an MRI done it showed that I had one mass behind the eye, the second time in August I had another MRI done it showed that I now have 3 masses behind the eye, all because of WG's. Surgery was not an option because of all the inflamation. I went up to 80 mgs of preds from 30 and did 3 days of IV preds. The vision has improved quite abit, not total but the opth is very happy with the improvement. The bulging has decreased. I am not sure about you but the days that I am not feeling well it really shows in my eyes. It is also very sensitive to light.