Any experience with orbital edema?

[ArlaMo]

Well, the relief was short-lived. My eye looks and feels worse than before this morning. I'm not quite sure what to do at this point...

Portland is a 9 1/2 hour roundtrip drive. And it was lucky my mom could take me on Wednesday. She works full-time. I'm not sure my depth perception with only one eye functioning is good enough to drive that far and drive around in an area I'm not familiar with.

Seriously, this disease sucks

[annekat]

I hear you. I haven't found Portland the easiest place to drive for one who rarely goes there. I hope the docs can offer you some alternatives that don't involve going there....

[ArlaMo]

I ended up going in to see my local ENT yesterday as all the swelling came back plus some. He lanced and drained everything again, but he put a little plastic drain in at the lacrimal duct spot. It has been so much better the last 36 hours - I am just hoping that the antibiotics (Dr. Ng said I have a couple of different strains of infection going on) will help and things will get back to normal. Best case scenario for me! But it could possibly need surgery. Some days, this disease just makes me so tired...

[KimH]

Hi, I have not been on in a long time. My Wegener's had been not too bad but lingered annoyingly in my nose. After the first of the year the pain in my face became unbelievable. My nose collapsed , my eye was swollen andweepy. My Drsent me to an ENT at Yale. I had a biopsy on the 5th. The pain is less. Now I wait for path report. I am on 60mg of pred . There is a chance that a fungus has eaten the bones around my left eye. That is scary in it's own right. The usual meds used in treating WG is adding fuel to the fire ifthis is fungal. My initial dx was never conclusive as to being def WG. I had a sinus biopsy 3yrs ago , it was negative and all my blood work normalized within 2-3months.My Dr kept an eye on me monitoring my blood and doing a repeat CT. After screamingface and eye pain I had yet another head CT. This time they found the bone deteriorating around the orbit of my left eye. Now I wait.

[annekat]

This doesn't sound too good, but I hope the best for you, Kim.

[ArlaMo]

Kim, that's awful! I, too, am hoping for the best for you.

My saga continues - lancing and draining, and then swelling again. My husband actually did the lancing the last time (no worries, he's a doc, although of the ortho variety.) It was so swollen one night last week that I thought the skin was going to pop. Ugh! He took me over to his office and had my 16 year old son assisting (he loved it - wants to be a doctor someday.)

Not sure at this point what the next step is. Removing the sac?

[marylz]

Sorry to hear that you are going through this. Hopefully it will be resolved soon!
Mary

[drz]

Hope you both get some good help soon to help resolve these unpleasant issues. Sounds like quite the ordeal for both of you.

[KimH]

.I will let you know what the path report shows. Hopefully in day or two. Thank you !

[KimH]

Thinkng of you too. My pain is much better since the surgery removed something. Eye still a bit sticky. I hope to get path results in a day or two.