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Hi Mammaw,
What to ask your eye doctor about TED? WELL!
First, make sure you are seeing an opthalmologist ~ they are the only ones who have the training and experience to deal with TED patients.
Second, ask the opthalmologist about taking prednisone over a two-three week period surrounding your RAI. SOME patients (the one study that’s been done shows about 16%) experience a temporary worsening of their TED symptoms following RAI, but NONE in that study experienced it if they were taking prednisone in the period surrounding the RAI. Prednisone carries its own risks, so it’s good to talk over the risks/benefits with the opthalmologist.
As I think Bobbi mentioned recently, for the most part it is recommended that TED patients “wait out” the symptoms until you have officially hit what they call the “cold phase.”
The initial period is usually referred to as the “hot phase,” when there are fairly constant changes occurring in your eyes — more/less blurriness, difficulty moving the eyes, etc. etc. — and at some point (it could be a year or more in the future) those changes stop happening and they say you are in the “cold phase.”
While you are in the hot phase, there are things that you can do to relieve symptoms — steroids, directed radiation to the eye sockets — but any surgical remedies are typically not pursued until you’ve hit the cold phase. This is because surgery can irritate the tissues and cause the hot phase to accelerate, which can negate any positive results you got out of the surgery. The only exception is if the doctor is worried that your optic nerve is in the process of being compressed. If it is compressed completely, that’s the end of your vision in that eye, so surgical remedies would be pursued if they feel that’s happening. The simple layman’s test to see if your optic nerve is being affected is to look at something VERY red with each eye separately. If either eye sees the color as more “washed out” than the other eye sees it, it’s time to make an emergency appointment with the opthalmologist.
There are also strategies to make yourself more comfortable and see more clearly during the hot phase ~ prisms for glasses, for instance, may help with any double vision you may have (though not for everyone).
That’s all I can think of quickly ~ I’ll defer to the other experts for any additional information.
OH, one more thing! If you raise the head of your bed, you can help gravity help you throughout the night. It has helped my eyes a lot, but I’ve never had the worst of the symptoms, so I’m not sure what to say about the degree of relief it may provide you. Sleeping on mounds of pillows is hard on your back and they’re easy to slip off of, so raising the head of your bed provides more consistent results. I know it looks weird and it’s difficult, but it can really help. We have a 4×4 under the frame at the head of the bed, and it works wonders.
Good luck!
~Ski
NGDF Assistant Online Facilitator
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