[hollygsmith]

in reply to: upper eyelid retraction surgery assymetric results? #1176062

@rowzzer
I totally know how you feel. I had upper eyelid retraction repair at the beginning of November. For the first couple of weeks the lids looked fairly even, but then they started to heal differently. Now they are asymmetric by 1.5mm. They feel fantastic-so functionally they are better. But cosmetically the asymmetry definitely bothers me. One of my eyes actually looks normal again (after OD in May and the upper eyelid retraction repair). The other eye will be getting a slight revision. In my case it is slightly overcorrected so my surgeon will be raising it to match the one that looks normal for me. My surgeon wants to wait a full 4 months for swelling to go down before proceeding just in case there is any more movement of the lids.

If you just had your surgery this month it may be a little early to know where the final lid position is going to be, so hopefully it will improve some. My surgeon said you have a pretty good idea where the final position is going to be at the 6 week mark but there could be changes for up to 4 months. With eyelid retraction repair, my understanding is that it can take 2 to 3 surgeries to get the positioning of the lids right (both of my oculoplasts were very up front about this). I know how discouraging it can be to think of having another surgery, but hopefully you are through the worst of it with the eye disease.

[hollygsmith]

in reply to: Need info about IV steroid therapy #1175876

Steroids can cause an increase in eye pressure. TED can cause an increase in eye pressure as well. High eye pressure can lead to vision loss if it goes untreated. The good news is that there are drops that can be used to regulate eye pressure. I had to use Timolol drops twice a day in my eyes while on steroids to keep my pressures within normal range.

[hollygsmith]

in reply to: Need info about IV steroid therapy #1175874

I attempted to do 6 weeks of IV steroid therapy in order to get off of oral steroids (there are supposed to be less systemic side effects with the IV steroid therapy). Every time I would try to decrease my oral steroid dosage my eyes would get worse. I made it through 3 weeks of IV steroid therapy and couldn’t do anymore because I could not deal with the side effects. I couldn’t sleep and my anxiety levels were through the roof. It was very difficult at work because I was so irritable and would get so easily annoyed. It was a bit like when I was very hyperthyroid and initially diagnosed with Graves except way worse. When I couldn’t tolerate the IV steroids, I tried a steroid injection directly into the fat below my eye. That was an awful experience and I didn’t get any improvement. So, I ended up being on oral steroids for close to a year before being able to taper off completely. I still had side effects, but they weren’t as severe as with the IV steroids.

That being said, you may have a very different reaction to the IV steroids and of course have to weigh benefits vs. risks for your individual case. Even after all of the steroids I still had to have OD and upper eyelid retraction repair. But it likely would have been much worse without the steroids.

I’m so sorry you are going through this.

[hollygsmith]

in reply to: will lower lid retraction improve after OD? #1175927

I had significant improvement in my lower lid retraction after my OD surgery. I only had a slight improvement in my upper lid retraction which I recently had surgically corrected.

I would definitely talk with your surgeon about your concern. Hopefully he/she will be able to give you an idea of the expected outcome for your individual case.

Good Luck!

[hollygsmith]

in reply to: OD Disappointment? #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:)

[hollygsmith]

in reply to: OD Disappointment? #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]

in reply to: Pain after steroid shot into eye muscle #1174036

I received a steroid injection into my lower eyelid during the active phase of TED. It did actually worsen the pain and pressure, but only for a few days. It also caused pockets of fluid to form on the surface of my eye for about a week. I did not experience any improvement in swelling, pain or pressure from the injection. Sorry you are experiencing headaches and pain behind your eyes. I know TED is no fun.

[hollygsmith]

in reply to: Question for people that have had OD surgery #1172696

I’m actually in southern California too-San Diego. As far as having OD on both eyes at the same time, I think a lot of it has to do with the surgeon’s preference. I’m sure they take each individual case into account as well. I was happy to have them done at the same time since it meant only going under anesthesia once and only going through one recovery process. I’m sure there are pros and cons to both ways though. Good luck with your surgery!

[hollygsmith]

in reply to: Question for people that have had OD surgery #1172693

Hi! This is my first time posting. So many of the posts that I have read over the past months have really helped me get through some tough times, so I hope this can help you feel a little more at ease about your upcoming surgery. I had orbital decompression surgery 7 weeks ago. I had a 3 wall decompression on both eyes at the same time. The main side effect I had was numbness on my right cheek and nose. I’m happy to say that as of yesterday I have full feeling back in my cheek and my nose has been tingling quite a bit, so I think it’s almost there. My oculoplast had told me that the numbness would likely go away but that it could take several months. She had personally never had any patients with permanent numbness, but said it could happen. I have not had any double vision from the OD surgery, so I am looking forward to eyelid surgery in a few months to achieve the final results. I know what a horrible disease TED is and how scary it is in the days leading up to OD surgery, but just try to think of the positive outcome the surgery will have and remember that you are not alone!

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