I am an (almost) 42 yo female who was diagnosed with Graves in 2007. By that time, I had probably had the disease for 3-4 years, but my lack of insurance and poor health care and mental illness issues meant the one doctor I could afford to see blamed my symptoms on anxiety.
I was finally tested for thyroid problems AFTER my eyes presented with the classic popped out and open appearance… so much so that the doctor I was seeing started the conversation by asking me who my endocrinologist was.
Because of a large toxic goiter and continued uncontrollable TSH levels, I had a total thyroidectomy in Nov 2010. At that point, the occuloplastic surgeon felt that while I would eventually need surgery for my eyes, it was not immediately necessary.
One year later, he changed his mind and I had endoscopic orbital decompression on the right side in January of this year, and on the left side in February. Then, in June, my eyesight started to go dark and/or blurry all of a sudden, and it was determined that I had optic nerve involvement again. So I went on a high dosage of steroids and then had the 3-wall decompression surgery (that cuts through at the side of the eyes) and now they've removed as much bone as possible.
Last night my right eye went dark twice. My issues are complicated by the fact that I have lupus and take plaquenil, which also affects the eyes.
Has anyone else had the decompression surgeries, and still had issues afterwards? For swelling, has anyone had any success with a medication other than prednisone?
I'm trying to conceive, because for the first time in a decade I am euthyroid, but I am not supposed to get pregnant while on prednisone because I get blood sugar issues… so I am hoping that if there is swelling near my optic nerve again, I have some option other than prednisone. Or if anyone else has temporary vision dark-outs without it meaning there is an immediate threat to one's eyesight…