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Hi wandak,
Was the opthalmologist experienced with TED — and are you absolutely certain you saw an opthalmologist? Optometrists and opticians can dispense glasses and look at vision changes, but it takes an opthalmologist to handle eye conditions that may require surgical interventions. Finding an opthalmologist with specific knowledge about TED can be a lifesaver, because there are many intricacies to the condition that can contribute to what’s going on, and someone with only a passing knowledge may not be able to give you all the help that’s available.
Glasses typically wouldn’t reduce the symptoms of double vision (unless you use prisms, which I talk about below) or headaches, and if the blurriness is due to the fluctuations as the eye muscles swell, glasses would not be able to help much because the changes are happening day-to-day.
People with TED get double vision because the eye muscles do not swell uniformly. There are at least three muscle sets governing eye function, and if any one of the muscles is swollen more than another, the eyes will not move smoothly in tandem. This will create double images. For some people, they can incorporate “prisms” into the glasses that will correct the disparity, but in order for that to be effective, the disparity needs to be constant. That is rarely the case at this phase of TED. It is very typical for TED patients to have worse involvement in one eye than another, and in some muscles more than others within the eye, and for further changes to occur at random intervals.
The headaches are probably due to the swelling of the eye muscles. The eye, the optic nerve and all the muscles are contained within a cone-shaped cavity of bone. When the muscles swell, the only possible result is that the eye pushes forward, and in all likelihood, the patient feels pain. Some of that pain can be alleviated with cold compresses — we recommend using ziploc bags of frozen peas or corn, because they conform nicely to the contours of the eye socket and provide the most possible relief. Ziploc bags are recommended so you don’t confuse these peas with the ones you might cook for dinner. You can refreeze & reuse the ones for your eyes as long as you don’t plan on cooking them.
There are some treatments that can be pursued prior to surgery on her eyes, such as prednisone or directed radiation. Both of these treatments have shown some success on TED patients to reduce swelling. Reduce the swelling and then the blurriness, double vision and headaches should subside, though there’s not much chance it would go away entirely. It would be an improvement, not a cure, and for some people the risks of prednisone or radiation are too high to consider using them. On the other hand, if the swelling gets too severe, the optic nerve could be compressed, and that would be the end of vision in that eye. These are all things a trained opthalmologist would be able to tell you, and they could evaluate her eyes to see how close she may be to a danger point.
I know that TED carries with it so much pain besides the pain in the eyes — we use our eyes to relate to people, and when they are disfigured there are SO many additional issues that come up it is difficult to just “let it be.” The real challenge is that TED has a “hot phase” and a “cold phase,” and within the hot phase, surgical treatments are typically not an option unless the optic nerve is threatened. This is because during the hot phase, the antibodies are active and the fluctuation is constant — surgical intervention can cause the antibody levels to spike and the resulting antibody action can reverse any benefits obtained by the surgery. Once the cold phase is reached (after a few months of stability — not normalcy, but stability), there are multiple surgical procedures that can help to bring the eyes back to a normal look. It may not be exactly what the eyes were beforehand, but I know many people who have had the surgery, and they are simply gorgeous.
In the interim, though, while the hot phase is going on, this is the very worst time. It’s hard to sit and wait through the changes that occur, and accept the fact that there’s not much that can be done.You may want to raise the head of her bed to keep fluid from collecting in her eyes overnight. This has helped me a lot, but I never had the severe symptoms your daughter is having. I’m not sure the level of relief she may see from this, but I feel it’s worth a try. Also, get her sunglasses that protect her eyes from all angles. We refer to them as my “space man” sunglasses. They may look a little strange at first, but again, the relief they provide from wind and sun irritation are a real blessing. And one last hint — get her lots of artificial tears. If her eyes are not completely closing, or if they are constantly irritated and dry, she could suffer corneal abrasions, which may not be treatable. This is another sight-stealer that is completely avoidable. Artificial tears can be a little expensive, but they have no preservatives, which is critical for people who need to use them a lot during the day. When we’re in irritating situations (on the computer, in the sun), using them every 15 minutes is NOT too often.
The day will come when this is all behind your daughter. In the meantime, it is good that she has you for support. She is facing some tough day-to-day issues.
The best you can do is to make sure you are seeing the very best medical professionals available to you. Get as many opinions as you feel you need. Anyone who brushes you off is not someone who is a team member, no matter their expertise.
I do hope this helps. I feel for your daughter. It is no fun being where she is right now.
~Ski
NGDF Assistant Online Facilitator
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