Any experience with orbital edema?

[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.

[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.