[Raspberry]

#1060197

I’m curious how common it is for the eyes at some point to move back into their right position in the eye socket on their own. I know it can happen, but I’m not sure if the accounts I’ve read are very rare or not. So far I’ve been pretty lucky that things haven’t been worse, but I still have one eye 2mm farther out than the other and it is noticeable. I’m wondering whether it will ever reverse, but it’s been a year and a half now with no change. I still get pain behind the eyes and other symptoms that let me know TED isn’t done with me yet too.

So should I just count my blessings or is it worth it down the line to think of surgery OR will that eye get with the program and just go back eventually????

[Raspberry]

#1181195

35 views and no replies….does this mean it hasn’t reversed for anyone here or people are saying 2mm, get outta here ya wimp!

[ChristinaDe]

#1181196

Raspberry wrote:

35 views and no replies….does this mean it hasn’t reversed for anyone here or people are saying 2mm, get outta here ya wimp!

Too funny Raspberry!!!
Perhaps many of us are wondering the same thing about our own eye issues & waiting WITH YOU to hear the responses you get!!! There’s definitely a deafening silence tho!!! LOL

I only have swelling at this point & the only thing I know so far is that I have to “wait & see” – no surgical cosmetic fixes until we know where it all ends. And they tell me that we won’t know that until my levels are normal & stable for at least 6 months to years – and – the eyes themselves have stabilized for a period of time. But as far as whether or not my swelling will go away completely on its own, no one I see seems to know.

Can’t wait to hear what kind of responses you get…

[Kimberly]

#1181197

Hello – I wouldn’t read too much in to the view count on this forum, as anyone with an Internet connection can view these posts, but only registered users can reply.

From what I’ve heard from ophthalmologists at past conferences, there is often *some* improvement in appearance before TED finally moves on to the cold phase, but I don’t know that anyone – even an eye doc – could predict exactly how much improvement you can expect. Hopefully, others will chime in here with their experiences, but I don’t think I’ve heard from anyone whose eyes went *completely* back to normal.

[snelsen]

#1181198

Quick reply cause sitting in eye doc exam room now
My eyes never improved in any way. But I am the severe TED exception not the rule. Thank goodness!

[Raspberry]

#1181199

Christina, I sure hope things can reverse for you too. Swelling seems like something that could/should resolve. One hopes! My thyroid levels of have been pretty stable for a year now though my methimazole dose keeps changing.

Kimberly, I was hoping you’d weigh in, and that you’d tell me of the legions of people where it all went back to normal. Even some improvement would be nice. I think what stands out the most for me is not the proptosis itself but how it makes the eyelids sit and where the crease is different on the bigger eye. The first time they measured it the doc said oh it could have always been like that and I’m like “um, no” while restraining myself from hitting him because he minimized and discounted everything.

Shirley, thanks for not calling me a wimp! I know you are a true warrior with the TED. Did any of your many eye docs advise you to wait at any point in the hopes of positive change?

[Robboford]

#1181200

Hi Raspberry,
I think my swelling has reduced slightly since having TT on the 19th August, however I am having issues with Double Vision at the moment. Not sure whether this will pass or will get worse but won’t see my opthalmologist for another 5 weeks, so will be able to tell you then how much they have gone down. (I have still got bruising and swelling around my throat/neck and maybe that is why people are saying that the swelling on my eyes has gone down so time will tell). At my last opthalmologist appointment my left eye was protruding 31mm and my right eye 27mm. Will let you know the outcome and will also see my Endo this Tuesday so will see what his comments are.
Take care
Deb

[Ski]

#1181201

My eyes are largely back to normal, but they never went completely nuts either. The truth is that the normal curve of TED includes some improvement at the end for all patients — the downside is that it’s usually much further down the road than you want to believe (all patients are different, but my recollection, faulty as it may be, is that it was 5-6 years after my symptoms began). The scar tissue is the thing that could keep them from coming back to normal completely, which is where the surgical options come in. As I’m sure you appreciate, surgery on your face carries with it some risk of “looking different” because miniscule differences in alignment of tissue can create quite a variation in the way your face looks, so while most of us would prefer to look “the way we used to,” we need to realistically look at the potential for improvement vs. risks of needing new adjustments afterward, when we contemplate surgical correction.

When we’re early on in the process, the swelling can change fairly randomly, so it’s hard to know whether it’s a result of something we’ve done or not. In the end, enjoy every period of improvement you get…

[Geezer]

#1181202

Hi! I had noticeable eye problems and I don’t anymore. It is not back to normal, but it is much better.

[Raspberry]

#1181203

Thanks Ski, I’m glad you experienced improvement, but whew 5-6 years is a long time. But you are right surgery itself could add more problems than it fixes at this point for me. So I will stay in wait and see mode.

Thanks for your reply too Geezer. How long did you have eye issues and how long did it take to improve?

[shimself]

#1181204

I’va had TED for six years. A few months ago I had a week long course of prednisone (for an arthritic problem), and one of my eyes went back to near normal, and the other retreated a lost as well.

The endo said it wasn’t supposed to happen, but agreed it definitely had.

[shimself]

#1181205

I’va had TED for six years. A few months ago I had a week long course of prednisone (for an arthritic problem), and one of my eyes went back to near normal, and the other retreated a lost as well.

The endo said it wasn’t supposed to happen, but agreed it definitely had.

[snelsen]

#1181206

My experience is that prednisone helps A LOT with double vision, but the minute it is stopped, the vision gets worse again. Unfortunately, we cannot have sustained doses of pred for that reason.
Shirley

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