[06291972]

in reply to: Teenager/Graves Disease/Orbital Decompression #1170573

alsha wrote:

Hi, I have my daughter who is 14 and half and was diagonsed with graves a year ago and also had the eye protrusion issue. Her were about 26mm and after using predisone they are down to 24-23mm. She has sever dryness too so on artifical tears constantly. We did not try the mositure chamber or goggles as her doc stated but we tap her eyes at night and that seemed to help with drynessa and irritation the next day.She is on 20mg of methimazole and her Free T4 until now have not been stablized and TSH very low. Her endo is suggesting I131 treatment which I am against since she has already issues with the eye. I talk to another endo and he advised syrgery. I was wondering if you have been told that you need to seek another treatment since I see that you have been on medication for 4 years and you got it nearly the same age as my daughter. My husband and daughter are very scared of surgery and would not even hear about it. I was told by another endo it is not recommended to be on methimazole for longer than 2 years!!!?? Was anyone told the same thing??? I was also trying to look for a support group of similar age as my daughter who also has the same health condition to meet /speak with. I cannot really feel what she is going through I am trying but …… Her eye issue is bothering her but she does not completely admit to me it seems all internal, we have days were the mood is up the wall others ….. stomach issues , skin issues and her period was delayed until she was 14years!! Any advise from anyone on a desparte mom seeking help!! Thanks

I’m 17 years old and I’ve been diagnosed with Graves Disease for about four years now. These past few years have been a roller coaster ride, both physically and mentally, as I’m sure many of you can attest.
I’ve been on methimazole, and my thyroid levels are now stable.
But one of the most frustrating things for me is my eye. I have protrusion in both of my eyes. I think the worst they’ve been was about 27 or 28mm. As of now, it is about 25mm.
I have slight double vision when I look down or to the left, but it doesn’t affect me too much. I constantly feel a pressure behind my eyes, and I also experience occasional dryness when it is windy out or when I’m sleeping. Light-sensitivity is also sometimes an issue when I’m outdoors.

Overall, my eyes have been pretty stable for the past year (with possibly slight improvement?). They aren’t so much red and swollen anymore.
I am planning on going to college next year, so I am starting to seriously consider having an orbital decompression. I’ve done some research, and I’m aware of some of the risks, which is why as much as I want to have the surgery done, I am still very hesitant.
For those of you who have eye problems as well, I’m sure you can relate. But it’s just the small things that I used to take for granted that starting to bother me now; for example, 1) I use moisture chambers when I sleep at night so it is almost impossible to take a comfortable nap on airplanes, bus rides, long car trips etc. without being looked at funny. 2) As a teenage girl, I also avoid sleepovers and vacation trips as much as possible just so my friends won’t ask questions. 3) My eyes are sensitive to the sun, but when I wear sunglasses, some of them push uncomfortably against my eyes because they protrude so much. 4) My eyes always dry out and tear up when I am playing the violin. 5) I’ve haven’t told any of my friends, but that doesn’t stop them from making comments about how large my eyes are, even though they don’t mean anything hurtful.
I know it may seem trivial, but I feel like my eye problems have had a large emotional impact on both myself and my social life.

After my last check up with my opthamologist, I got the feeling that he was kind of against me having surgery. He thought that overall, my eyes were stable and healthy and not in imminent danger of vision loss. He thinks that I should just go on the way I do now and not risk any surgery complications, especially since I am still young.
I have taken his thoughts into consideration, but the idea of being able to improve my eyes both medically and cosmetically seems too tempting.

I suppose the reason I posted on this board was that I wanted to hear some feedback/opinions/personal experiences about orbital decompression. Any input would be greatly appreciated!

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