[Ski]

#1066449

I wanted to say welcome ~ I apologize that I don’t know the answer to your question, but we have several facilitators who can probably give you some assistance. I just approved the message so the post can be seen by everyone, so an answer will hopefully be forthcoming.

It is NOT typical for the eye disease to recur, in terms of additional swelling, so I hope that provides some relief for you. He’s early on in the healing process, and I’m not really certain of the additional complications brought on by the second condition. If you’re VERY concerned, please feel free to contact the doctor in order to get an answer for all of your questions. I’m sure you both want the healing to be as quick as possible.

[BPGrum04]

#1066450

Thank you ski for replying..my husband has had such a long road …his graves disease is not cold yet but had to have the surgery because his right eye was out of the socket and his left was not as bad so .I guess we are just really scared..I really hope somone has some input on both diseases.The doctors in Pittsburgh Pa said that he is a mystery . They told Brian that he would have to take chemo drugs to kill his immune system and antibodies. I have tried to find information on that treatment. but have not found anything about it . Thank you

[BPGrum04]

#1018683

My husband had decompression surgery done on jan 25 2010 ….his eyes look good ..is it normal to have swelling of the eye lids and some pressure. he also has ocular Myasthentina gravis with the Graves eye disease..his eyelids need to be taped open. I guess we are really worried that the eye will swell again. Has anyone had the two autoimune disorders togeather and will the eyes open at some point. also he is not moving around like he should ..will walking help him with the swelling..I think I read that at some point..If anyone has any input please let me know..Thank you.

[Bobbi]

#1066451

Hi. I want to say welcome, too. I do not know anything about the treatments for myasthenia gravis in particular. I do have a couple of friends with severe rheumatoid arthritis who have to take immune system suppressants to keep their disease under some sort of control. It’s not a perfect solution, but it has helped them somewhat.

As for the thyroid eye disease (TED), if it isn’t "cold" yet, there could be additional swelling. But if your husband’s doctors are putting him on an immune suppressant, that drug would also suppress the antibodies causing the eye muscles to swell. So there could be a double benefit.

I would recommend that you start a list of questions you and your husband have. It’s really common for us all to forget questions when we are seeing our doctors. The minute we leave, or get home, there’s this "DRAT!" moment when we remember a question that we forgot to ask. But if they’re written down, we’re less likely to forget them.

I hope this information — puny though it is — helps.

[Constance]

#1066452

Hello. I am new to online bulletin boards, but I truly need some direction and I have nobody that wants to listen any longer about my issues with Graves. I was diagnosed 12 years ago. After RAI, a cosmetic plastic surgeon removed the fat from my lower lids. Afterward, an orbital specialist brought down my upper lids because I could no longer close my eyes. Then he brought up my lower lids from the ptosis that developed. Then he sewed up the corners of my eyes. Then he took out some tissue from the roof of my mouth (yuk!) and sewed the graft into my lower lids. Needless to say, I look terrible, but I also feel the same dryness, irritation and sometimes gooey-ness in the eyes. I still look reptilian. I have asked 2 doctors for an orbital decompression. They both said that it was not a good idea. I think that due to so many surgeries to mask the distance that my eyes bulge, even they can no longer appreciate the abnormality of the eyes positions. Today I made a phone call to the orbital specialist to again ask him to please consider this surgery for me. Many of the images that I see on the internet are of people whose eyes are not bulging as much as mine, yet they are cleared for surgery. I don’t understand why I have to be the courageous one who must just live with the irritation and disfigurement. I started this unenjoyable journey in my late 40’s. Is there a good reason that someone with my condition should avoid orbital decompression?

[Ski]

#1066453

The only reason I can think of is that it would create difficulties given the other surgeries you’ve had to date ~ in other words, now your eyelids would be "too big." I would advise finding an ophthalmologist associated with ASOPRS (http://www.asoprs.org), because they are specifically trained in issues related to TED. It may not be too late for you, but you may have to do some extra procedures in order to get everything lined back up. There are several ways to do decompression, so make sure you’re dealing with a doctor who knows it ALL.

[Constance]

#1066454

You may be right, Ski. I was able to speak with the doctor last evening, who is a member of ASOPRS, and he said that hardly any doctor in Michigan continues to do OD’s. He said that the surgery is simply to break the orbital bones, allowing the "stuff" attached to the back of the eyeball to fall into the sinus cavity. I knew that. However he said that, without those bones, things can happen like "sunset eye," which allows the eyeball to fall down into the cavity, too. [yuk!] He said the only reason he would consider such a surgery is if it was to save me from going blind, and that during the surgery I could lose part or all of my vision. We made another appointment to take measurements again. "Be careful what you wish for, you just may get it!" I continue to read others’ entries in order to learn from their experiences. Thank you for your response.

[Kimberly]

#1066455

Hi Constance – Any surgery has potential complications; the most common ones I have heard with OD are double vision (which can be corrected with a subsequent surgery) and sinus issues. And it’s true that when the eye disease is in the "hot" phase, doctors prefer to NOT do an OD unless the patient’s sight is threatened due to compression of the optic nerve. Your case may be more complex, having been through previous surgeries.

If your eyes aren’t closing completely, you do run the risk of corneal abrasions. Hopefully, you will find a doc that can help you find a long-term solution. In the meantime, frequent use of eye drops can provide some relief, as can wearing a mask at night or using surgical tape to keep the eyelids shut.

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