[Ski]

in reply to: graves eye disease #1075683

Hi there,

I understand completely ~ our eyes are so important in how we see the world and how we think the world sees us! I’m sorry to hear that you’re going through this. It’s true that it’s possible for your eyes to return to normal, but the fact is that your information is correct, that’s pretty rare. It really depends on the mechanism of your disease, the extent of the changes, the length of the "disease curve." Some people have a very short curve, others a bit longer. The doctors at our recent conference indicated that the symptoms are usually worse, and last longer, for smokers. So, if you smoke, do quit. If you’re around smokers often, minimize that exposure.

Also, younger people are more likely to have issues with the fatty tissue behind the eye expanding, while older patients have swelling in the actual muscles, and that dynamic can make a difference in future prognosis as well.

So it’s really impossible to say for sure, but we can say that every disease curve has a period of improvement near the final stability, or "cold phase." So you know that is ahead of you, and it’s possible that a lot of the changes you’ve experienced will reverse. The thing is that it can take some time. In the meantime, try to keep your stress down, and make sure that you keep your eye moist, since damage to your cornea is something that cannot be reversed. You may want to invest in some lightly tinted sunglasses that you can comfortably wear indoors, since that can minimize the effect of flourescent lights and forced air, plus you can kind of "hide" behind them and that may help you feel more comfortable talking with people. Everyone I talk to that has the eye disease is upset by the fact that it’s difficult to speak with people without either explaining what is going on or watching them fumble with their eyes, not knowing where to look or what to say. Some say it’s better just to begin by explaining what’s going on (in very basic terms), others are overwhelmed at having each conversation begin that way. It’s a tough spot to be in, I know.

Remember, one of my favorite lessons from Bobbi (who will be returning to this forum soon, watch this space! ” title=”Very Happy” />) is that we all look better when we’re smiling than when we’re not. Try to put things in perspective, and remember this is not going to last forever. Once you’re stable, you can look at the options you have for returning your eyes to the state you remember.

There are LOTS of hints and tips in the messages here ~ I’m going to be signing off soon, but I’ll keep an eye on this thread and pop back in with suggestions as they come to me. Best of luck to you. Chin up, keep smiling!

[Ski]

in reply to: Choosing Thyroidectomy on Purpose #1075719

Just wanted to weigh in, since we spoke a little bit about thyroidectomy today at the conference.

First, all three of our treatment options are valid and effective. We each have our own reasons for picking one over another, but I think we need to be cautious about expecting that everyone would agree with our specific choice. Each carries some level of risk, so we’re just lucky to have three choices. Not all patients have that luxury.

I’ve said it before, and I’ll probably say it a million more times ~ I think that the single most important thing for us is that we are a participant in our care, and that we feel we have been allowed to make a fully informed decision. Once WE have decided what we’re willing to do in terms of treatment, I think we find a certain peace and we have a much better experience throughout.

Surgery is a valid option, and it can be done in the U.S. The doctor today reminded us that thyroid surgery is complicated, and is not typically within the repertoire of an ENT surgeon. You need to find a surgeon that does a lot of thyroid surgeries in order to keep your risk low. As the earlier message says, there are other important structures "tangled up" with the thyroid that need a careful, experienced hand to work around and avoid damage. So, given the proper pre-work, I think you can find a good surgeon and have a good experience with thyroidectomy. Ask the potential surgeon how many of these surgeries they do in a year (look for an average of at least 2 or 3 a month), and ask about their complication rate (percentage). If the surgeon refuses to answer, get thee to another doctor.

[Ski]

in reply to: Choosing Thyroidectomy on Purpose #1075715

Yep, everyone is so unique ~ unfortunately, most doctors don’t take that into consideration at all, but another element to it is that we don’t know how our bodies will react to any given treatment either, so in a sense we’re all trying our best to get a good result. Sometimes the doctors confuse what they WOULD do with what they think we SHOULD do, and that’s really not fair.

I think the most important thing to remember is that thyroidectomy is a perfectly valid solution, and what matters most is that we are a participant in the choice, rather than a "subject." Doing the research and choosing for ourselves is SO empowering.

One small point ~ anyone may have trouble getting regulated, so blaming the method of treatment that began the process is a little shortsighted.

This is a complicated condition, getting regulated can resemble art more than science sometimes, and accepting that can be one giant step in the process.

OH I’m glad to be back! ” title=”Very Happy” />

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