Any experience with orbital edema?

[ArlaMo]

The scleritis in my right eye was improving after my rtx infusions in December, but the last week or so, my lacrimal duct has been blocked and a bit painful. I woke up yesterday and the whole right side of my face is swollen and hurts like crazy. The edema is worse under my eye - today, it is so swollen, my eye won't open.

My local optometrist took pictures and sent them to Dr. Rosenbaum - Dr. R wants me to see an orbital specialist. His secretary called this morning to help me schedule that, but the first available appointment is on the 25th. I have a pretty high tolerance for pain, but this has had me in tears a few times over the last 48 hours :crying:

Anybody had any experience with this? I don't know if there is anything I can do here at home for the next 10 days to help it.

[Dirty Don]

No experience, sorry there, but I would be on that phone everyday and twice if needs be to the doc's office. Hang tough AM!

[ArlaMo]

Thanks Don! Just got a call that they had a cancellation tomorrow - I'm just hoping I can make the four hour drive to Portland!!

[Dirty Don]

EXCELLENT! You'll make it...I know it...best of luck now!

[drz]

Thanks Don! Just got a call that they had a cancellation tomorrow - I'm just hoping I can make the four hour drive to Portland!!

Get a helper to go with you as the ride might be too much for you and then you can maybe try nap a little on the trips there and back. Or plan to stay over night cause those long trips can be exhausting when you feel ill already.

Best wishes for a safe trip and good consult.

[ArlaMo]

Yay - my sweet mom is going to come with me. Thank goodness for moms!

[ArlaMo]

Saw Dr. Ng, who is an orbital specialist at Casey Eye Institute. He was a bit abrupt in his "bedside" manner, but thorough. He actually lanced the lacrimal sac and drained out all the fluid, took some cultures, and told me I was not a good candidate for a stent. He said at some point, I might need the lacrimal sac excised completely. :ohmy: The swelling has gone down some, but I look I got a good jab to the face in a boxing arena.

[Dirty Don]

You made it! Albeit a bit bruised! But I imagine you feel a ton better! Congrats!

[jola57]

Ouch and a double :ohmy:

[Jaha]

Glad you got some relief, that sounds very painfull.

Jana

[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 :crying:

[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...:sad:

[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 :ohmy: (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.

[Debbie C]

I'm still trying to find an answer to my puffy cheek.It feels like I have bubble wrap under my skin.Mt ent said it wasn't my glands.I got my bloodwork back and my calcium level was high -at 11, I don't know if that has anything to do with it.Keep looking up things on google but I am get so frustrated,it's been this way for a long time and no one can explain it.:confused1:

[KimH]

How is your eye? Are you feeling better? Thinking of you!

[Marci]

Have you found out anything yet to explain this? Can't get over the weird things that happen to our bodys with WG. A bubble wrap feeling can't be fun. Are you able to sleep?

[Barbara N]

I am very familiar with your situation. After having my tear sac lanced with a scalpel, I cleared the hospital with my screams, It was and repeating event more or less every 3 weeks they would swell again. I finally went to Madrid to my great hospital and the doctor told me that he would remove them during my next surgery but until then drain them every 3 week with a number 20 needle and syringe. I was horrified at the idea of a needle coming to my eye but he was very good and the whole thing gone and not any pain. He also always has to remove eye lashes from the inside of my eye lid or they make ulcers in the cornea and I go blind, not to mention the pain. I asked him if he thought my local doctor could do it because it was so far and expensive for a 5 minute procedure. He said if my doctor wasn't afraid then it was fine with him. My doctor said he would give it a go and has been doing it ever since but then about two years ago when I went for my last eye surgery he said he didn't have to remove them. Something that happens when I ride seems to keep them empty, then I realized that my doctor hadn't been doing them lately either. This was all when I started experimenting with different therapies on the horse, so I discovered one more valuable benefit to my therapy. I live in a backwards southern coastal town so I have to travel quite a distance to get doctors that are able to understand my problem. I had one great, old fashioned family doctor here and he was actually the one that discovered both of my rare diseases be he has changed location and my new doctor won't even talk to me.

[Barbara N]

You mentioned destruction of the bone in your left eye socket. I also have one place where the bone is practically gone. In my last operation they were going to put a titanium insert to hold the bone together then it was decided among the group of Doctors, that in short time the WG would destroy the bone around the insert and it would drop into my face. They were right about that because now the bone is almost completely gone around the right eye and starting on the left eye.