Has anyone here had to have orbital sergurey due to Grave's? I have been on the steriods for over three months now, and the doc said that if it didn't work I might have to have that done. I am down to the last two weeks of the dose and it isn't seeming to get any better. Still have the double vision, and they are now starting to get very irratated again, and the burning is coming back, which I'm sure means they are starting to put pressure on them again.
I had the surgery in 2004. I don't have Graves nor am I hyper. I'm hypo/hashi's but had it in one eye. Had a ptosis in the other eye so I had both repaired.
What would you like to know???
Did it change your features any? How long did it take to recover? How long were you in the hospital? How bad was the pain? Did it take long to have your vision better?
Whats the difference between Graves and Thyroid Eye Desease or is it the same thing? Im 31 with 3 young children and I have TED,this last year has been total hell. Have had total double vision for nearly a year now. I tried to come off the steroids at christmas but my eyes started to swell again and get pain so had to be put back on them. Now Im slowly trying to come off the steroids again, hopefully its gonna be ok this time although I have started noticing my eyes streaming in the night again they feel a bit strained. I keep doing exercises to try and strengthen the muscles and wear an eye patch. One eye has turned inwards now. I have been told the double vision is easy to correct with a simple op to the muscle but if the swelling dosent go down I could have to have op to remove part of the eye sockets. Just preying it wont come to this.
It's the same thing! Let me tell you I know just how you feel. My doc hasn't given me a patch, but I only have double vision when I look up, or to the sides. The streaming I have gotten use too. Upon waking every morning I have to wash my eyes due to the crap that is all over the outside. They are so covered in it that it keeps them shut. It's nasty looking, and that same stuff is in the corners of my eyes almost all day as well, and rubbing them only makes them worse. My eyes haven't started to go inward, thank god. I can't stand the sight of bright light. Every time I go in for eye appointments, my eyes continue to water, due to the lights they use. Thank goodness for the eye drops that deaden the feels in the eyes. I wish they would send the bottle home with me!! They measure the pressure when I go in, and then they say no optical nerve involvement. I can be thankfull for that. It's nice to know that someone else out there is dealing with what I am. Although I wouldn't wish it on anyone. I am now 32, and have four children. I found out that I am about to be loosing my insurance starting in May maybe, and am scared to death that if I do, I will loose my sight from this crap! Found out about the insurance yesterday!
The surgery and recovery are very easy, just slight discomfort for a few days. You look like you went a few rounds with Mike Tyson for about a week and a half!
I also had fluid bags under my eyes which were taken care of with the surgery.
The problem with TED/Graves eye is that it can come back and you may need a few surgeries to get rid of it.
I may be looking at another surgey in the near future but it doesn't look as bad as it did before.
You just want to be sure you see an Oculoplastic surgeon that specializes in TED and unfortunately there aren't too many.
My eyes were very protruding with redness, dryness, blurry vision etc. I have not had surgery. Have hypothyroidism from taking RAI. for Graves. I must say the RAI made my eyes worse for a few months.
Now my left eye seems to look bigger than the right at times. If I am not on enough T4 medicine, or am overdosed, I develop blurry vision and redness of the eyes.
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** RAI ablation for Graves disease 2004**
I just had orbital decompression surgery 2 1/2 weeks ago. I don't know if I can help much because my eyes are still swollen and I don't feel much better than I did before the surgery. I'm hoping that eventually the swelling will go down. If it doesn't I don't know if that means I'll need another decompression surgery. I was already told by the surgeon that I will need eyelid surgery around the end of the summer. Unfortunately there isn't alot of helpful information out there for people with TED. The surgeon who I am seeing is supposed to be the best in the county where I live but he doesn't really give me much info. My symptoms before surgery was blurred vision, double vision and pressure in my eyes. Sometimes orbital decompression surgery leaves you with permanent double vision and you have to have muscle realignment surgery. I wasn't left with the permanent double vision but I don't think the surgeon removed enough bone in my sinuses to give me the relief I needed. If anyone out there has had this surgery can you tell me how long the swelling lasts? I'd like to know if I still have hope of feeling and looking better. This is a very hard disease to deal with psychologically because you look in the mirror and you don't look like you used to look. I don't know about anyone else but it is very hard for me.
There is no difference between Graves Eye Disease and Thyroid Eye Disease. It is also called Graves Ophthalmopathy. It's all the same.
How long have you had the disease? I had mine 4 years before surgery. I was told that they will not operate on you until the disease 'burns itself out' or has been stable (no changes at all) for at least 6 months. I suppose you can get a surgeon to do the surgery before this but then you run the risk of needing more surgery because your eyes will continue to change. I never had one eye turn in but one of my eyes is/was worse than the other. There are all different manifestations of this disease.
Last edited by moderator2; 04-22-2006 at 09:10 AM.
I was dignosed in 2002, and RAI in 2003, am now hypo, and levels have been stable except during pregnancy since....not that that means much. The eye thing just started in August of this last year, and I have been on meds for it since Dec.
I have had hashimoto's since 1980. I developed the eye disease in the spring of 2002. The eye disease is usually associated with Graves but we hypothyroid's can get it too. My doctors never put me on steroids. If you are being treated for the eye disease by your endocrinologist or primary care dr. you should ask for a referral to see a nuero-ophthalmologist or an oculoplastic surgeon. My doctor is both.
Quote:
Originally Posted by lookin4aclue
I was dignosed in 2002, and RAI in 2003, am now hypo, and levels have been stable except during pregnancy since....not that that means much. The eye thing just started in August of this last year, and I have been on meds for it since Dec.
I'm seeing an opthimolagist, he's been treating me since Dec. He is saying that if the meds don't work, which I know at this time they are not working as of today(eyes getting inflamed again)after lowering my does to 20mg he is going to send me to an orbital surgeon, which the nearest one is 4 hours away!!!!! Why can't they all live here....No real specialist.
Teresa,
Who did your surgery?
I had mine done at UCLA but I'm in Ct for the summer and am looking into Oculoplastic surgeons here. My UCLA doc gave me the name of one that's coming to Cornell but he won't be here until June or July.
As far as the swelling it will take at least a month for most of the swelling to go down though you will look pretty presentable after a few weeks.
I think it then takes about 6 months for the eyes to "settle" into their final shape and position. My eyes were changing on a daily basis for a few months LOL! I never knew what or who I was going to look like every morning.
Their OK now but the pressure did come back (not as bad) and they've been trying Botox but it doesn't seem to be helping.
Four hours away is really hard. I wish there were more help and support out there for this disease. You should probably try to make plans to see this specialist even though it is so far away because you might get a better idea of what you are dealing with. My advice to you is to make a list of any question you can think of if you do go. I don't know if you smoke or not but if you do and you can quit, it will help. I smoked and when I quit I found the pressure to my eyes eased up and the flare-ups I was having stopped totally. The disease stablized once I quit smoking.
Last edited by moderator2; 04-22-2006 at 09:09 AM.
The doctor who did my surgery is Gideon Schneck. He works out of Stony Brook University Hospital in Suffolk County on Long Island, NY. I don't know where you are in CT but the ferry from Bridgeport, CT to Port Jefferson, LI, NY gets you to within about 20 minutes of this doctor's 2 offices. He has private practice and he works out of the hospital's Ophthalmology Group. His private practice doesn't take as many insurance plans as the Stony Brook Ophthalmology Group takes so if you were interested you would have to check that all out. If you are interested I can give you the telephone numbers to both offices.
Did you have the disease for a long time before your surgery? Did you have the eyelid surgery too? Dr. Schneck told me that I will need the eyelid surgery in a few months. I will do whatever it takes to get my eyes back.
Last edited by moderator2; 04-22-2006 at 09:09 AM.
Teresa, thanks for the info. I'm going to keep his name for when I'm ready (which will be pretty soon).
Yes they also did my lids at the same time as the decompression and they got rid of the fluid bags while they were there.
I'm getting the pressure again though not as bad but what bugs me is that my eyes still aren't even. One is more "open" than the other though they claim it doesn't stick out further than the other.
My UCLA Doc is very, very conservative which in some ways is a good thing but he also isn't living with MY eyes. I made friends with some of his patients while in the waiting room who all have Graves Eye so we all comiserate with one another. We keep in touch via email.
We have this running joke that all of us have been told we look like Susan Sarandon. We're all pretty sure she has Graves also. If you look at older photos of her you can see it. I'm sure she's had a few surgeries by now because you can see the cahnges in her eyes over the years.
I know what you mean about one eye being more open, I have that too. It's great that you made friends with some patients with this disease so you can discuss things. I find there isn't alot of support out there, at least it's not easy to find.
I never realized Susan Sarandon might have this disease too, but now that you mention it I can see where that is possible.
Quote:
Originally Posted by juner50
Teresa, thanks for the info. I'm going to keep his name for when I'm ready (which will be pretty soon).
Yes they also did my lids at the same time as the decompression and they got rid of the fluid bags while they were there.
I'm getting the pressure again though not as bad but what bugs me is that my eyes still aren't even. One is more "open" than the other though they claim it doesn't stick out further than the other.
My UCLA Doc is very, very conservative which in some ways is a good thing but he also isn't living with MY eyes. I made friends with some of his patients while in the waiting room who all have Graves Eye so we all comiserate with one another. We keep in touch via email.
We have this running joke that all of us have been told we look like Susan Sarandon. We're all pretty sure she has Graves also. If you look at older photos of her you can see it. I'm sure she's had a few surgeries by now because you can see the cahnges in her eyes over the years.
Today there was a "Godfather" marathon on tv and now I think Al Pacino may have it too. I know he's had eye surgery but now I wonder if it was decompression surgery?
I do know that JFK jr had Graves and his eyes did show a bit of it.
Now it seems to jump out at me LOL! The "Runaway Bride" was a textbook example of Graves eye!
I wish I knew why some doctors are so conservative. My doctor was too and now I'm pretty sure I'll need another decompression surgery because just 3 weeks post op I can see that there wasn't enough relief for my eyes. They are almost as bad as they were before and I still have the same light sensitivity, still feel the pressure and can't move my eyes up, down, left and right just like before. The scar tissue is still a problem, there wasn't enough room made to give me the proper relief. Having decompression surgery is not easy to go through; having to go through it a second time is upsetting to me. I will do it, though; in fact, I will insist on it because I need relief for my eyes.
Quote:
Originally Posted by juner50
Teresa, thanks for the info. I'm going to keep his name for when I'm ready (which will be pretty soon).
Yes they also did my lids at the same time as the decompression and they got rid of the fluid bags while they were there.
I'm getting the pressure again though not as bad but what bugs me is that my eyes still aren't even. One is more "open" than the other though they claim it doesn't stick out further than the other.
My UCLA Doc is very, very conservative which in some ways is a good thing but he also isn't living with MY eyes. I made friends with some of his patients while in the waiting room who all have Graves Eye so we all comiserate with one another. We keep in touch via email.
We have this running joke that all of us have been told we look like Susan Sarandon. We're all pretty sure she has Graves also. If you look at older photos of her you can see it. I'm sure she's had a few surgeries by now because you can see the cahnges in her eyes over the years.
