[Kaeljia]

#1071443

On June 1st I had the upper eye lid operation done… for which you stay awake. The smell and knowing that they are burning away tissue from around your eyes was freaky to say the least. THe left eye perusual was done in an hour, the right eye was another matter.. it took an hour an half to complete and it was worse off. They removed more muscle tissue and scar tissue from around that eye and I could feel it when they were burning away down near the side of the eye they had to add more freezing.. felt like a pinching cutting.. but I lived through it. I was miserable though. my eyes hurt, light bothered them even more and I wasn’t at home, and wouldn’t be going home for a day an half. I was not a happy girl.
I still have what I consider paralysis of parts of my upper lips, and my upper teeth still feel strange to me.I can move my eyes better after having the operation, and my eyes do feel better although at the follow up Dr’s appointment he was not happy with the left eye, the crease in the lid is still too high and it is still swollen badly.. and the lid is droopy. That was on the 9th of June, the lid since then is still droopy, although the clrease seems to have fallen a bit more what with the swelling coming down some. I still have pouches of fat that will be removed six months from now. My Dr, figures there maybe another operation to balance the eyes, since I still have problems with vision, but in September when I go in, that may change if the operation was a success, meaning the muslces released my eyes enough that I no longer see blurry or double or triply vision in the left eye in my peripheral.
Overal , I never realized how much time this would take, I was so positive I’d be back at work after the first one… I have made plans to not expect too much, maybe the fall… since walking on uneven ground seems to be a challenge for me. Now all I want is to get rid of all this excess weight.. I"m tired of carrying around two people. And it looks horrible not to mention that I can’t seem to find clothes to fit, I neither fit the plus size nor do I fit the larg to xlarge size.. I’m right in the middle… sucks. I’ve been battling depression and lack of motivation, but I"m working on that.
I hope everyone is doing good.. Happy Father’s Day guys. Take care. Moi

[reginab]

#1071444

Hi,
I’m new to this site. I was diagnosed in May of this year had symptoms since March. Right now I have milky and blurry vision most off the time. my eyes are bulging and are still swollen like a monster. i am on Methimazole and prednisone but according to my last blood work i’m supposed to be slightly Hypo now and now my Methimazole was reduced to 5mg daily. My doc said that radiation just helps with vision not protrution and that this is a big change and to basically suck it up and deal with it. Im refused at 37 years old to spend the rest off my looking like a monster . You had orbital decompression done, right . Can you please show me you before, between and after pics. Can you ever look normal again after this???
I’m sorry I know I sound so sour but I feel so frustrated. can you give me any tips?
Thanks regina

[Ski]

#1071445

Hi there,

I know the eye disease is incredibly emotional to deal with ~ doctors say it is one of the most difficult conditions to handle emotionally. Our eyes are integral to our self-image, literally. It’s how people see us, it’s how we see them, it’s important in all of our interactions.

You won’t have to spend the rest of your life looking like this, but you may not be able to correct it quite yet. Let me explain. Thyroid Eye Disease (TED) is what you’re dealing with ~ it’s connected to Graves’ thyroid disease, but they are not the same condition, and they are treated completely separately. You should be seeing an ophthalmologist for TED, an endocrinologist (or internal med doctor) for Graves’.

TED has a rather predictable disease curve. It starts with a "hot phase," where your eyes bulge and recede, seemingly at random, for a period of time. That is followed by a period of relative stability, where nothing changes. After that, there is a short period of improvement, followed by another period with no changes. The initial phase is called the "hot phase," and it is diagnosed by the frequent changes. The final phase is called the "cold phase," and that is where you are able to make surgical corrections to improve your appearance. Surgical corrections attempted during the hot phase can result in a re-excitement of the antibodies that are causing your condition, so they could erase all the benefit of the surgery and reduce your ability to correct the appearance in the cold phase. The whole disease curve can last anywhere from one year to three years (people who smoke cigarettes typically experience a longer disease curve, and worse symptoms). Once you’ve arrived at the cold phase (typically diagnosed in hindsight, after months and months have passed with no changes at all), you can start talking about the surgery you will need to get your eyes closer to where they started. At that point you’re dealing mostly with the remaining scar tissue from the hot phase. If your eyes still bulge uncomfortably or in an unsightly way (in some cases, our eyes return almost to normal and we need no intervention at the end), then the most common solution is decompression surgery. In this surgery, pieces of bone are removed from your eye socket in order to give your eyes room to "settle back" where they belong. Afterwards, you may need to have additional corrections for double vision that may arise, and finally you can have surgery to bring the eyelids to the right position. After decompression, the other surgeries are not very invasive and all together they come with a very reliable history of returning your eyes closer to normal. If you have pictures of yourself before this all started, you should share those with the surgeon who is trying to correct your vision when it’s time. It can be really hard for them to just imagine where your eyes started.

While you’re in the hot phase, some people use steroids or directed radiation (a beam of radiation to the eye socket) to keep the swelling down. These both come with risks, though, so it’s something you and your doctor need to consider carefully. You may think your eyes are bad, but believe me I’ve seen some doozies. Your doctor has that perspective, so try to forgive the doctor for minimizing your condition. They may not recommend steroids or radiation because the benefit may not outweigh the risks, and they may use the phrase "your eyes aren’t that bad." I know it’s hard for you ~ any changes are difficult, TED changes can be really devastating ~ but try to remember there’s a predictable end to this, and there are options for correction when you get there. In the meantime, take good care of your corneas. Damage to the cornea can be permanent, if it gets bad enough. It typically occurs when your eyes get too dry, so stock up on preservative-free artificial tears and use them liberally. If your eyes don’t close all the way at night, look into nighttime gels and perhaps even face masks to keep your eyes moist while you sleep. Raising the head of your bed can at least keep fluids from settling in your tissues at night ~ sleeping on a stack of pillows is okay, but raising the head of your bed removes any risk of you ending up NOT elevated during the night.

And lastly, for your own comfort and emotional well-being, look into lightly tinted glasses for indoors, and darkly tinted glasses for outdoors. It can help your self-esteem to "hide" your eyes most of the time, and it can keep people from focusing on what’s different when they’re speaking with you.

We all wish you luck. I didn’t experience the worst of the eye symptoms, so I never had decompression, and I can’t answer your specific questions about how it was, but you can do a search here for people’s stories, there are a lot. Recently there was someone who posted a video of before/after, I’m sure you’ll find it uplifting.

[reginab]

#1071446

Hi, thanks for our quick response. And for the deatailed explaining. i am on prednisone 60mg daiy and the endo wanted me to see a Occulor specialist but I guess my eye dr. didn’t think that my vision was bad enough at this time. i also wear glasses pretty much all day , in and always outside the house. i’m just trying to figure out how to hide my eyes in the winter time, that will be a challenge.Will they do orbital decompression for cosmetic reason too? Because my endo said that they will only to that if the eye are at critical risk . In the 3 step surgery, where the last step is the lid realignment I guess, why is that done?Once the eye has been released back wont the eye lids just look normal again? What can I do about this milky layer that I see the burning , tearing and tryness besides the Blink eye drops and the cream for the night I also cover my eyes up at night too. if this last so long how can the eyes deal with this long lasting dryness, because the eye drops can only do so much.Since the doc said that I am slightly Hypo now does that make my eyes worse as well. Sorry, one more last question do I continue my sodium, iodine and trying to be gluten free diet since I am a little hypo insted of Hyper now. i just don’t know and I don’t want to contribute to make things worse. Thank you again, sooo… much for all your answers.
Regina

[Ski]

#1071447

Once you are ready to consider orbital decompression, you and your doctor will evaluate the seriousness of your remaining condition. It may seem that it’s for cosmetic reasons (and truthfully, the insurance companies will try to deny based on that), but if you need decompression surgery, your doctor just needs to code your procedure correctly. If you are still experiencing chronic dryness due to the proptosis at that time, this is not cosmetic. This is saving your sight.

If you wanted decompression now, while you’re still in the hot phase, your vision would need to be in danger, because otherwise it’s not worth the risk. In addition to that, you wouldn’t be finished with the disease process, so they could deny coverage based on the fact that your condition may improve even without the surgery. After you’re safely in the cold phase, no one can say you have the potential for spontaneous improvement, and the surgery would be your only means of relief.

The lid surgery at the end is sometimes required, sometimes not. It depends on a lot of factors, and that’s why they leave it for last. You only want to do small work to the lids, if you have to do anything. Some patients don’t need the muscle surgery either.

The only diet change that has any impact on thyroid hormone is the low iodine portion, and even that is negligible, but it can help some people ~ the others may make you feel better, but neither sodium intake nor gluten have shown any indication of affecting thyroid hormone levels. If you’re feeling better having that diet, stick with it.

As long as you use preservative-free artificial tears, you can use as many as you need for comfort and vision’s sake. Sometimes that means every 15 minutes. Your comfort is worth it, as is your vision. Keep in mind that the drops you use today will keep you more comfortable tomorrow, so if you are in a situation that’s traditionally difficult (windy, very sunny, or working on the computer) just use them because you know they help, and you’ll find that your overall comfort and vision improve. Dryness can actually reduce your clarity of vision, so just keeping them as moist as possible (without preservatives, that’s VERY important, because those are irritants in and of themselves) will go a long way for you.

[reginab]

#1071448

Thank you so much . I feel like you answer my questions better then my docs. yeah I guess I’m still in the hot phase and orbital decom. is still a long way out.
If you dont mind me asking but I saw that you are from San Fransisco, my oldest daughter is going to the University of Art there starting the end of Aug. and i’m scared out of my mind to leave her so far from where we at , we’re military and we are in Md right now. How is it down there on a day to day living safety wise for a 19 ar old and overall.
Thanks ,
Regina

[hayley1]

#1071449

Hi everyone,

Cant believe that i’ve just found this site now after struggling with TED for 4 years now, would have been good to talk to others with TED after feeling so alone and feeling that no one understood why i felt so conscious about my eyes! I had to be measures every 6 months for two and half years to make sure that the TED was inactive and then i was referred to a specialist who offered me the operations, i jumped at the chance to feel ‘normal’ again and not feeling like i had bug eyes! Last october and november i had orbital decompression on both eyes and this was successful and not as painful as i had thought, even tho i looked like i’d been beaten up! Next week i’m going for lower lid surgery on my right eye with a graft being taken out of my ear which i’m quite scared about as you’ve got to be awake!!! I’m hoping that my recovery is quicker than last time as i had 11 weeks off work due to my eyes causing alot of discomfort. I do feel that the process so far has been worth it as i dont feel as self conscious as i did and i dont feel that people stare at me in an unusual way anymore!

Hayley

[Ski]

#1071450

Hi reginab,

You know what, my son is looking into the Academy of the Arts in SF for next fall! San Francisco can be very different from neighborhood to neighborhood, but no matter where you are in the city, I think everything’s pretty safe in the daytime. I get most nervous after night falls, but even then it’s only a very few parts of the City that make me feel that way ~ we go up for evening events quite a lot. For the most part, there are lots of people around, and that can be protective in and of itself. Your daughter should have classmates that will already know quite a bit about the area, so try not to worry (easier said than done, I know).

[reginab]

#1071451

yes,I guess like any other big city, when the night life awakes you better watch your back. This is her very first time on her own, she’s alway’s been a stay at home kind of girl. I guess I’ll see how it is in a few weeks.Your son plans to go to this school too, that’s cool. Does it have a good reputation besides what you read online ?
Thanks
Regina

[Ski]

#1071452

Just sent you a private message to answer your questions ~ we should take this discussion away from the public board now….

[carla]

#1071453

Hi there, if you don’t mind me asking, why did you end up having the orbital decompression? Did you ever have oral or iv steroids? How long have you had Graves eye disease? Val

[Kaeljia]

#1071454

Hi Guys, its been some times since I was on last. The summer has gone by, and I can tell you.. the process was not a joy.
So I’ve had the Bilateral orbital 3 wall decompression done, in January. In June I had the the Bilateral Upperlids Mulletectomy. That one was oh so much fun. Being awake for that was stressfull to me, not to mention the left eye was more severe than the right. So I’ve not only gained excess weight this year,but I found I didn’t want to drive and did not go back to work. I got so depressed that I stopped going out, I just couldn’t stand to look at myself in the mirror. Thats just not me lookin back at me any more. My left eye lid droops, the right eye looks much better. I still have numbness in my upper jaw, my teeth feel wooden, and I can’t stretch my upper face to smile still. Its like I have two toothpicks going straight down from the nerve under each eye keeping my face imobile. So I have good days and I have bad days. My next operation is for my left eye, Ptosis Repair, Blepharoplasty, Extropin/Entropion Repair. I’m having my left eye lid repaired, the muscle needs to be reattached to the lid so it doesn’t droop as much and the large patch of fat removed in the corner of the eye lid. I’m on call right now for this one, or it won’t be till January. I’ll be awake for this one as well, and it is going to be another half hour operation.

[vitoa420]

#1071455

hi ,Im getting eye muscle surgury in my left eye due to my double vision. the bottom muscle needs to be repositioned. has anyone had the surgury. can you tell me the how it went , the pain during the second part of the surgury when your awake while the surgions realianing the eye. how long before back to normal activity

[Anonymous]

#1071456

lHello Ski and all others,
I just found this site, thanks to a TED online friend from Denver. I have some optic neuropathy in my left eye, so the optic nerve is having some pressure from the fibrosed muscles. Therefore, I am scheduled for and OD 2/2/10. I am NOT looking forward to this, and tried hard to avoid having it done. Now, having spoken to TED people, and four surgeons, I feel pretty good about moving forward. The symptoms I have are increased blurring in the eye, and less clear color recognition. It seems like I go to eye docs every other day! A neuro-ophthamologist (keeper of the optic nerves) and a strablsmus surgeon (for much later) and a surgeon or two who do OD. After speaking to several docs, I have decided to choose the eye/oto team, where the ENT doc does the medial wall, and the eye doc does the lateral wall. I will be happy to document the whole experience for this site. I am interested if anyone else has had the procedure I will have, ie., a team of eye and ENT. I have diplopia (double vision) of both eyes, so I have to used my downward vision to look up and straight ahead.
THe inferior muscles are extremely fibrosed, especially on the left eye. One worry I have is that we do not know if I am still in the hot phase. I did react well to a recent Solu Medro burst in the hospital, but the improvements disappeared in a few weeks. But all the other times I had prednisone orally or another Solu Medrol, there was not reaction or improvement at all. In my case, the eye part popped up many decades later, from when I had thyrotoxicosis after I had my first child. I had a subtotal thyroidectomy, after I could not be controlled with propylthiouracil.
I would like to hear more from people who have had OD. I am wondering if I have one eye done, what the rationale is for doing the other eye, if it is not as bulging, and the optic nerve is ok. Also wondering if my visual fields will improve after OD.
shirley

[Ski]

#1071457

There should be present medical reasons to do OD surgery, so you would not want to do a surgery on the eye that is not affected at this point. Surgery is always the last resort, and there’s no such thing as a "pre-emptive strike," you really need to just deal with what IS. It’s possible the other eye will never develop these kinds of symptoms, just so you know. Many people end up with TED in just one eye.

It’d be good to know if you’re in the hot phase or not, but the bottom line is that optic nerve involvement (the change in color vision is usually the first symptom of that) MUST be corrected, hot phase or not, or you may well lose all vision in that eye. The optic nerve (we found out at our conference in October) is not really a nerve at all, it’s brain tissue that extends into the orbital cavity. You cannot regenerate it, once it’s been destroyed, so saving it is incredibly important.

I’m so glad you’re feeling comfortable about the procedure! It’s CERTAINLY got a good history, and in good hands you’ll be just fine. More people who’ve had the surgery will weigh in, I’m sure.

Best of luck to you!!

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