[Ski]

#1071618

Hi kyagos,

You say you were diagnosed fairly recently, which would suggest that you haven’t had symptoms very long. TED (the "newest" name for Graves’ Ophthalmopathy) has several distinct phases. The first phase is called the "hot phase," and during this period of time, your eyes may change rapidly. They can bulge and go back often, your double vision can change. After the hot phase, there is typically a period of stability, and following that, a period of improvement. After ALL that is done, they say you’re in the "cold phase." Cold phase is diagnosed in retrospect, after the doctor has seen no changes at all for at least six months. The whole process can take anywhere from 1-3 years. Smokers typically have the longer durations.

I mention this because until the cold phase finally happens, surgery can be premature, and you MAY find that the eyes go back to a nearly normal state. If you do surgery to change things, then the eye goes back, you will again be at a disadvantage.

I completely understand the frustration of your type of double vision ~ our most recent conference was focused largely on TED and the possible treatments, and just one slide showing us what "up/down" double vision looks like was enough to make us all gasp. It is FAR worse than side by side double vision. So I understand the desire to take care of it, and SOON. I’m not sure if you can use prisms to correct this type of double vision (I can check my notes to be sure), but if you can, that’d be a way to avoid surgery right now, so you could wait and see if your vision corrects by itself.

If you are going to have surgery, we are told that it is best to do the surgeries in the order you mention ~ decompression, then strabismus, then lids. Doing them out of order can sometimes result in difficulties down the road, but if you and your doctor feel that decompression will never be necessary for you, of course you could skip that step.

There is no reliable treatment that shortens the phases of TED. Symptoms could potentially resolve in one year without ANY intervention. Keep in mind that this is an autoimmune condition, so keeping your stress level down can keep the antibodies from attacking so much. Stress causes an adrenaline rush and stimulates the immune system, and since we have antibodies that attack us in a bad way, keeping stress at bay will help keep those symptoms to a minimum.

A second opinion might be a good idea for you. Look for an ophthalmologist, and if possible, look for one that is affiliated with the American Society of Ophthalmic Plastic and Reconstructive Surgery ~ these are ophthalmologists who have had additional training in the precise surgical procedures you’re contemplating.

[kyagos]

#1019430

]Hi everyone,

I was diagnosed w/ graves/graves opthamology back in October of 2008. I have severe double vision. I dont see 2 images side by side, i see them on top of each other. Well becuase of this i have to tilt my head up in order to see one image. And from doing so I am developing neck pain.
Well I see blurry all the time. I have good days and bad days, today is a bad day, but i was wondering if allergies make the eye symptoms worse. I asked my eye doctor and he said possibly??? i would think he would know the answer..
I have been waiting to have my surgeries. The doctor had mentioned i need 3 first surgery would be the Orbital decompression Surgery which they have to go in and shave the eye sockets to place my eyes back into place. (i have little buldging) and swelling. which some days arent bad and some are worse. the 2nd surgery is for my double vision, and last would be the eye lid retraction surgery.
Ok my doctor told me that he recommends that i go straight to the double vision (muscle) surgery. he doesnt think i need the orbital decompression. I am listening to him becasue he is the "doctor" my concern is my appearance. which he did say unless im reallllllllllly insecure w/ the way i look. He could fix that deer in the headlight look … but its not that its the bulgy look.. will they eventually go back into place on their own? I also visited a Natural Pharmacist physician.. he told he me had a lady once w/ really bad bug eyes..and he had her back to normal w/in a year… I want to go straight to the muscle surgery (double vision) because i am having a hard time focusing on things.. i fell down my steps the other day becuase i had misjudged the first step. and i am starting to have difficulty driving.. so i will listen to the doctor and skip the first surgery.. but i am just concerned about.. how long and will they every go back on their own w/out surgery?? ” title=”Sad” /> please if someone has had experience or know of anyone who has.. Please share… and one more thing … could allergies make the symptoms worse on your eyes???[/b][/size]

[kyagos]

#1071619

Thank you so much Ski for responding,

Yes i have tried the Prism glasses. I wound up chucking them after an hour of trying to use them. The problem with them were, the minute i focused on one image and i moved, It was all over. my vision gets worse with them on. So no luck with them. My eyes have been stable since January. Ive been to my eye doctor 3x and there has been no change in my eyes, if anything they may be getting better. (measurement wise) I asked about if my double vision can correct itself on its own. THe problem with Vertical Diplopia is that in most cases it will not correct itself. I could live w/ the buldginess that i have (which is very mild from what my doctor says) i see it, but alot of people say they cant notice. The only thing they tell me is Karen, you have a totally differnt look to you w/out knowing what it wrong .. Also my doctor that i have is "THE BEST surgeon for orbital decompression surgery in NEW YORk where i live. And if he is telling me i dont need it.. i believe him lol. he said he could correct that look by the eye lid surgery, by pulling my lid down a bit so i dont have that look. Also like i mentioned i am seeing this Holistic Pharmasist, and he doesnt want me to do any surgery besides the double vision, He swears he can get me back to normal Naturally. He also put me on a special diet.

Have you heard of gluten free diet for graves disease patients? well he said if i cut gluten out of my diet i will be feeling so much better and there will be less puffiness around my eyes.. "if i keep it up" He said alot of food that has gluten in it are "toxic substances to the thyroid, and these should be removed from the diet" and a gluten free diet will help reduce symptoms of the disease. Ive been trying to follow it. As i just started the diet. and i do have to say i feel better! But when i go off my diet i feel puffy swollen aggitated.. Just wondering if you heard the same thing???

[Ski]

#1071620

I haven’t heard it specifically associated with Graves’ or thyroid conditions, but I do know many people who have cut out gluten and found themselves feeling much better in all respects, inflammation in their body goes down, and their weight drops. These are not people diagnosed with celiac disease, just stopping to see if it helps, and it has. There are probably more people sensitive to it than we realize ~ and (as I’m sure you’ve noticed) we live in a VERY gluten-based world. It’s in so many products, people don’t even realize they’re ingesting it. So, whatever the reason, if it works, good for you!

The only thing I would say is that you may want to have a quick blood test done for the TED antibodies prior to surgery. There is a theory that high levels of those antibodies can be associated with symptoms returning after surgery, so testing and finding low levels could be reassuring.

Sounds like you have your issues well in hand, and a good doctor too ~ good luck with your surgery!! ” title=”Very Happy” />

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