[alsha]

#1059495

I was just wondering whether everyone who had an orbital decompression was completely satisfied with their results or whether they faced any sort of disappointment.

I had my orbital decompression in June/July, and it’s obvious that there are improvements. But to be honest, I am a little disappointed that my eyelids still don’t close properly and that there is stil a bit of protrusion going on. I know it’s unrealistic to wish for everything to go back to normal, and I don’t want to sound ungrateful at all, but sometimes my eyes feel like such a burden and I don’t know how to deal with them.

Anyone else feel the same way?

[Bobbi]

#1175114

I’m truly sorry your results were not as complete as you had hoped.

We have had facilitators on this board from time to time who have had significant eye issues, and several of them had multiple operations to try to get their eyes back to looking more or less normal. Some of the people I’ve met at conferences have eyes that look completely normal — to me, if not to them — after their surgeries, and others do not. So, in answer to your question, yes, there are people out there who were disappointed in the OD results. They may not, however, be posting to this board at this time.

[gatorgirly]

#1175115

I had bilateral OD in late September, so it’s only been seven weeks. I am pleased with the progress so far, but by no means am I 100% satisfied because the surgery process is ongoing. I am still swollen as faces tend to be for months after major surgery. My upper lids are still retracted, but we knew that would happen, which is why an eyelid surgery (medically necessary, not cosmetic) is planned for six months from now…or so. Most people need this additional surgery after OD, so I’m curious as to whether this topic has been discussed with your surgeon?

Also, even though your surgery was several months ago, keep in mind that thyroid levels and swelling can affect the final outcome, so you might need to give yourself a few more months for the swelling to completely cease. Are you thyroid levels stable?

How much decompression did the surgery provide? Mine provided 6mm of decompression in the right eye and 4mm in the left eye so both eyes are now at 19mm, which is normal and once I have the eyelid surgery, my eyes will look exactly the way they did before TED (I can already see it when I smile big).

[Kimberly]

#1175116

@alsha – Agree with gatorgirly that it’s important to talk to your doctor about next steps. In particular, eyelid retraction can cause that “staring” look to persist, even if your decompression surgery was successful.

If you don’t feel you are getting good service from your current doc, this web site has a referral option where you can find eye surgeons:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.asoprs.org/i4a/pages/index.cfm?pageid=3504

Take care!

[hollygsmith]

#1175117

I had OD (bilateral-three wall) in May and I have been very pleased with the results. It took a while to get there though. I had 6mm of improvement in both eyes. My surgeon was very clear that I would likely need eyelid retraction surgery as well. Although the OD surgery helped my lower lid retraction tremendously, it did little to improve my upper eyelid retraction.

I just had the upper eyelid retraction surgery 2 weeks ago and it’s too early to tell what the final result will be but I’m trying to stay hopeful. The position of the eyelids seems good and they seem pretty even as well. When I went for my post op there was only half a millimeter difference. Before I had my eyelid retraction surgery, my surgeon was very up front about the fact that revision surgery could be necessary because of over or under correction or asymmetry. At this point it doesn’t look like that will be needed.

I definitely have had days recently when I look in the mirror and feel disappointed that I don’t look like I did before TED. I really thought I would look like me again after this surgery and I don’t. I try to remind myself that it’s too early to know the final outcome and there is still a lot of swelling to go down. But, I still feel really discouraged at times. TED is such an emotional roller coaster and I’m ready to get off, but I know it takes time to get through the whole process.

I think it’s important to keep in mind that OD and eyelid retraction surgery are both functional surgeries. Although they can improve appearance they are not cosmetic surgeries. Some people choose to have a cosmetic surgery after all of the functional surgeries have been completed to look more like they did pre-TED.

@alsha-What type of decompression did you have? Would they be able to improve your proptosis by doing another decompression, meaning removing more fat and/or bone? I know how discouraging it can be-Hang in there:)

[hollygsmith]

#1175118

I had OD (bilateral-three wall) in May and I have been very pleased with the results. It took a while to get there though. I had 6mm of improvement in both eyes. My surgeon was very clear that I would likely need eyelid retraction surgery as well. Although the OD surgery helped my lower lid retraction tremendously, it did little to improve my upper eyelid retraction.

I just had the upper eyelid retraction surgery 2 weeks ago and it’s too early to tell what the final result will be but I’m trying to stay hopeful. The position of the eyelids seems good and they seem pretty even as well. When I went for my post op there was only half a millimeter difference. Before I had my eyelid retraction surgery, my surgeon was very up front about the fact that revision surgery could be necessary because of over or under correction or asymmetry. At this point it doesn’t look like that will be needed.

I definitely have had days recently when I look in the mirror and feel disappointed that I don’t look like I did before TED. I really thought I would look like me again after this surgery and I don’t. I try to remind myself that it’s too early to know the final outcome and there is still a lot of swelling to go down. But, I still feel really discouraged at times. TED is such an emotional roller coaster and I’m ready to get off, but I know it takes time to get through the whole process.

I think it’s important to keep in mind that OD and eyelid retraction surgery are both functional surgeries. Although they can improve appearance they are not cosmetic surgeries. Some people choose to have a cosmetic surgery after all of the functional surgeries have been completed to look more like they did pre-TED.

@alsha-What type of decompression did you have? Would they be able to improve your proptosis by doing another decompression, meaning removing more fat and/or bone? I know how discouraging it can be-Hang in there:)

[alsha]

#1175119

Thanks for the reply everyone!

I had a two-wall decompression along with fat removal.
I think I was at about 25mm prior to the OD and was around 19mm since the last time I was measured. A three-wall seems to be out of the question because my doctor is afraid of the possible double vision risks.

When I smile, my eyes seem to look normal, but if I don’t, my eyes look protruded and quite abnormal. I know I have to be patient, but my follow-up appointment (in February) feels so far off!
So does it really take half a year or so for all the swelling to go down?

[Kimberly]

#1175120

@alsha – I have not seen stats on swelling, but I suspect that every patient is unique and that some will see swelling improve in a shorter period of time. Hopefully, you will get some additional responses, though.

Take care!

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