[frefluterb]

in reply to: Orbital Decompression Surgery Question #1170976

thanks Shirley….. I am laying in wait for my Stabismus surgery!!!!!

[frefluterb]

in reply to: Orbital Decompression Surgery Question #1170973

Thank you, I am glad it helped…… I saw your post and it was so familar to me. You know all the feelings that i have experienced, this is a great place to dump them…. and keep dumping them, they serve us no purpose to hold them in…in fact it can be detrimental

[frefluterb]

in reply to: Orbital Decompression Surgery Question #1170971

So much good info. I can only tell you my experience….. My TED came out of no where…so I thought. At first I thought I had a brain tumor or stroke. Nope!!!
TED for sure. Wait and ‘see’ was the treatment… 6 months later, shooting pain in my right eye brought me to the ER. MRI showed optic nerve compression. 4 months later emergency bilateral OrbitalDecompression…too late…..Legally Blind. OK so the surgery gave me immediate relief of the pain in my sockets…less headaches . So even though I have permanat damage, for me it was a success. The vision I have left is still affected by the disease, diplopia, cross eyed ( from the muscle aspect), color issues, tunnel vision. Not to mention all the emotional stuff that goes with this stupid stupid disease.
On a good note, 2.5 years later, I was just granted Social Security, so I can now have my additional surgeries and get on with life.

good luck!!!

[frefluterb]

in reply to: DRIVING AND TED #1063050

Hi,

I also have TED and have given up driving completly. I have not regretted this decision because of the danger I pose to others. I have a bicycle, I am not likely to kill anyone with it, but don’t ride it much. I also have not worked in the last year, nor have read a book. I have had OD surgery and am making a good recovery, the surgery did exactly what it was designed to do, save what vision I have left. I suffered some permenant damage to my optic nerve. So I encourage you to trust yourself AND be your own advocate. It is a awful disease and changes ones outlook…..

[frefluterb]

in reply to: SSI #1063153

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[frefluterb]

in reply to: Driving a car #1066104

So I saw a new eye specilist on Monday, which said I have a mild case. I find that interesting….because I do not feel mild.
lol….what is bad though is the right vertical deviation…..so he said NOT to drive the car…doesn’t sound mild. But at this time I am not a canidate for any treatment… just shift my head….hahahaha seems ridiculous

[frefluterb]

in reply to: Two Different Eyes #1070924

Hello,

My eyes have been very different from the start. I appreciate this forum for the reason that I know I am not alone with these goofy symptoms. I have also learned that there are allsorts of diffrences between all of us. My right eye is more affected than the left, however I see better with the right, but have skewed side vision on the right. I seem to tilt my head to the right and look slightly left which seems to give me the best ability to see correctly, ( but now I have a kink in my neck) lol. hat, dark glasses and window blinds are lifesavers because of severe light sensitivity. I am not driving because it is too difficult to focus and my right periphael is so bad, it gives me wreched headaches. I sleep alot… I have a long wait for the cold phase, "I hate the wait and see" but cannot do the steroids… but ‘just for today’ I will wait and see

[frefluterb]

in reply to: Graves’ Eye Disease #1066474

Well my DR suggested I join a support group and there is none in my area. So here I am …. I too had radio-iodine for the first part of this disease in 05. The Hyper…… I regret that decision ever since. But it was behind me and I had learned to accept a new body and way of thinking of myself.

There was a day just around the beginning of Dec 09 that felt like I had a sudden loss of vision in my right eye. So I started paying attention to my eyes. I noticed swelling, more pronounced in one, headaches, overwhelming tiredness. Finally 2 weeks later I ended up in the ER because I became frighted over the distorted vision …. no stroke, no infection…ER sends me to the eye specilist.

GED is the diagnoses. I thought that when they nuked my thyroid I was done with this disease…. I guess not.

So now I can not drive at night and even some days are scarey. I can’t read for any length of time, bright lights, flouresent is the worst. If I have a busy day it takes me 2 to recover. I have been put on disability, that’s a whole other subject. I can not take steroids, for I would go to jail for murder…..seriously.

So I wait….

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