[elf]

#1063684

Hi Shirley,

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No, I didn’t have a strabismus surgery. I didn’t have diplopia, or any vision problems, during the course of my TED, except for some time after OD, while my eyes were adjusting. It would be quite debilitating, I agree. I had my lid surgery almost exactly at the same time as you had your strabismus surgery, because I remember answering your post about day 3, in the middle of my most painful period, – 7 days or so after the surgery. I did just the upper lids, didn’t need to bring the lower lids up, hence no grafts. One of my lids had a perfect position, but too much fat overhanging, and the other lid had contracted after the OD, so even though it was my perfect "sitting-in" eye, it looked bigger, – so we had to drop that lid down. I was a bit nervous about that, since I’d read about over-done drops, when lids ended up too low.

I have no choice in shopping for doctors. Here in a small Maritime province of Canada, it’s hard to recruit and retain a specialist. The previous specialist, who did OD on me, got too busy and overworked eventually, and left. I was wondering there for a while, how I was going to take care of my lids. This fresh new doctor was not busy yet, and scheduled my surgery a week after I saw him. I did have my reservations about him looking too young (31), but I did not really want to go into the shopping mode, interviewing him, – because what other option did I really have? I usually trust that everything that is going to happen to me, will happen for the better. It served me well so far. He did say that in 90% of cases, everything ends up fine, and in 10% the lid may drop too low, – but that could be correctable, too.

You are awake for the lid surgery, they freeze just the lid area. So I knew they were sewing away, and a couple of times I had to sit up for him to see the symmetry of what he was doing. I must’ve looked like hell afterwards, because my husband and kids came to pick me up, and they just gaped.

For a few days I thought that he butchered me, and my husband said later that he thought that, too. I was lopsided, this was too high, that was too low, with puss coming out. I had to wear dark glasses for 2-3 weeks.

Now, it’s healed for 80% , and I look perfectly symmetrical, – nothing is too low or too high. I am so glad am done with this TED. <dancing on the table> Done!!!! You will get there , too !!!

PS: My light sensitivity ended when my hot stage of TED ended. I am reading that not everyone has the same defined cut-off between hot and cold stages. I had a very defined end, where all sensitivity, for everything, stopped in what seemed like one day. I started feeling like the old me (not feeling the eyes), just looked like a ravaged landscape.

[susandemarco]

#1063685

Hi Ely,
I have a few questions for you. Did you have TED before you took the RAI? You said your active stage of
TED lasted one year although you said you had Od surgery and your eyelids fixed four or five years later.
I started with TED in late June early JUly and am currently going through it. My upper lids and and under my
eyes are very puffy or swollen. You say that will not go away. Both my endo and my ophthomologist say that it
will return to normal, however, they cannot tell me how long this will be. They say it could last around two years.
I am also wondering why you had to wait so long after your hot phase had subsided.

I am so sorry for asking so many questions, but this whole thing has me very confused and upset, and I am trying
to make some sense out this. So far my ophthomologist has not suggested that I need any surgery at all. I just
have to use lubricating drops.

Thanks for any insight you can put on this whole thing for me.

Susan

[Bobbi]

#1063686

Hi, Susan:

There can be many reasons why the lids of the eyes puff up and appear swollen, and not all of them have to do with TED. That tissue is particularly sensitive, and swells with even minor injuries to the eye/forehead area. Allergies can cause swelling. Aging can cause the skin to sag a bit, and appear more swollen than we used to have. Etc. If TED is causing the swollen appearance it is due to the expansion of the MUSCLES of the eyes– it has little or nothing to do with the tissue of the eye lids themselves. Why? Because the eyes sit in a bony box: Except in the front, the eyes are completely protected by bone. When the antibodies aggravate the tissue of the eye muscles, of which there are several pairs (to move the eye around), those muscles enlarge and stiffen. When they enlarge there is NOWHERE for the eye to go but forward/i.e. to protrude a bit. And when the eye protrudes a bit, the fatty pads around the front of the eye are pushed forward and give that swollen appearance. That’s of course "if" TED is causing the problem. Whether or not that swollen look (IF it is caused by TED) goes away completely when the cold phase of the disease sets in depends upon how big and stiff the eye muscles remain — sometimes that enlarged, stiff status does not completely go away.

The reason doctors prefer to wait until everything has resumed normal before doing surgeries to correct the appearance of the eyes is that people who jump the gun, and have corrective surgeries too early can OVERcorrect. That means that when all the changes have finally taken place, you have an ongoing appearance problem that was caused by the surgery, not by the disease. Some of these problems are more difficult to correct than if you wait. It is also more cost effective to wait. (You only have to pay for one surgical correction, hopefully, not two.) It is also more gentle on your body to have fewer surgeries.

I know that it is hard to "sit tight" when your appearance is changing, and your vision is changing this way. I truly remember how scared I was. But unless the disease is actually imperiling your vision, it is generally better for your overall health to wait it out. You risk fewer long-term complications if you wait.

[elf]

#1063687

Hi Susan,

Sorry to hear that you’ve started TED. Your drs are right, there is not much that could be done right now in the hot stage.

I didn’t do eye surgeries right after my hot phase ended, because at first I was trying to understand what I was the most comfortable with, – living the rest of my life the way I looked, or taking a risk allowing someone to go straight into my skull. Because I had (still have) little kids to think about. Eventually, life in the shadows (refusal to have pictures taken of me, shying away from face-to-face contacts) got to me to the point that living full life became the most important. That realization came about 1.5 years after the end of the hot phase, and yet another year was spent going through preliminary tests and waiting for the surgery. After the OD on one eye, the Dr talked about having the other eye’s OD two months down the road, and eventually lid surgeries, but everything was being delayed by her busy practice, and then the bomb was dropped on me that she left. Another orbital specialist was hired a year after my OD, just this last August. We decided not to do the second eye’s OD since the protrusion there is insignificant, both eyes look about the same.

I know how hard it is to be in the center of the hot stage, and not knowing when it is going to end, and how far it is going to go. It’s hard to just wait, as well. I was a stay at home mom during my hot stage, and that helped, – I do feel for people who have a job, struggling with their eyes that are out of their control.

My TED started shortly before my RAI, – about a week before my RAI I was asking my Endo why my one upper lid was swelling up, and whether it was TED. So I don’t really think that RAI was a trigger for my TED, – a contributor, maybe, but I know I would have had TED anyways.

[susandemarco]

#1063688

Hi Ely,
I do have TED, but I do not have the protrusion of the eyeballs. I have significant swelling or "puffiness" of the upper
and lower lids and actually my cheekbone and cheeks also seem puffy. I have had this since July of this year. How
did you know that your hot phase was over, and why did you wait so long to have the surgery to fix your puffy
lids. My both doctors told me that my eyes would most probably go back to normal on there own. You also said
your hot phase lasted only one year, but it seems that it took more than that for you to complete everything. I
realize, that everyone is different, but I just cannot make heads nor tails out of this whole disease. My endo and I
are still trying to get my levels back to normal. I am presently on 50mcgs. of synthroid and going for my next blood
work on Wednesday. I still do not think that it is going to be perfect , because as soon as I overdue something I
get tired, and sometimes when I wake up in the morning, for a second, I feel very hot, and then when that passes I

feel cold. Who knows.
Thank you for any information you may offer to me.

Susan

[elf]

#1063689

Hi Susan,

I waited for so long to do my surgeries because of combination of my doctors availability, and my need to make sure that I was really in the cold phase. If I lived in a more populated place, my surgeries would have been done faster.

Do you have any uncomfortable feelings in your eyes (grittiness, sandy feeling, or your eyes cannot stand sun/wind/air-conditioning/cold) ? Because I had all those feelings, and they all stopped exactly 1 year after the start. That’s how I knew I was out of the hot stage. I had tears streaming at night for 6 more months, that’s why I didn’t do the surgeries right away, waited some more. Then it was a problem finding a doctor. After the OD, the doctor left. I waited for a year until another doctor arrived, for lid surgeries.

If you don’t have any uncomfortable feelings in your eyes, just the puffiness, then you are in a better shape than I was. Maybe that’s why your doctors say your puffiness may disappear, – after you find a correct Synthroid dosage. In my experience, though, my puffiness never disappeared. Though my Synthroid dose was the right one from the start.

[susandemarco]

#1063690

Hi Elf,
I do not have the grittiness, or the sensitivity to the sunlight. I do have some tearing somtime, but not constantly.
However, the eye specialist that I go to, did in fact, diagnose it as TED. Hopefully, it is not as severe as some.
I just had bloodwork done on Wednesday, and the nurse called to tell me that it was ok this time, and that I
should stay on the same dose of synthroid, which is 50mcg. I will see and talk to my endo on Tuesday to see if she
has any other inofrmation. Hopefully, my eyes will not get any worse, only better in the future.

Thank you for your reply, it really made me feel a little more optimistic.

Susan

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