Hello and thanks for your question. AIt sounds as though your husband is an unfortunate victim of thyroid eye disease. It is not uncommon at all for someone with an active thyroid eye disease to need this surgical decompression.
The issue in thyroid eye disease is that the muscles that move the eyes enlarge in the orbital cavity, taking up more space than they are supposed to, which leaves less space for them to function properly and therefore double vision results from the eyes being misaligned related to this orbital congestion. The order of the surgeries is important in this problem: it's important to decompress the walls of the orbit first before attempting surgery on the muscles of the eyes to realign them. It seems however that your husband requires even more than two wall decompression for the muscle surgery to be successful so this sounds like a reasonable path to take to achieve alignment in muscle surgery. Does that make sense?
Is it standard procedure to have an ENT do the 'nose' side decompression? Is the muscle adjustment then usually successful? His vision is so bad that prisms are not an option. Are the any other options?
While I think it is standard procedure to have an orbital surgeon do the nasal decompression, it is not unheard of for an ENT surgeon to do this and they have considerable experience doing this. Unfortunately in this kind of condition, there really aren't other options; this is a mechanical congestion and he needs more space for the muscles to function and there really isn't any other way to get this increased space other than decompression.
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My opinion is solely informative and does not constitute a formal medical opinion or recommendation. For a formal medical opinion and/or recommendation you must see an eye doctor.
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Some of my research has suggested radiation for the enlarged muscles; but our dr thinks it is too dangerous. Do you have an opinion on this. We are trying to decide if we should just continue with present drs or seek another opinion from either Johns-Hopkins or Wills Eye Institute in Phila. Thanks
Radiation has been shown to be of some effect, but the effect is not immediate, nor is it very reliable. And in someone who has a history of lymphoma, I suspect would not be desirable (so in that case I agree with your doctor). However, I do think a second opinion is never a bad idea. At worse you're able to hear that the same treatment is recommended and feel better about it being a consensus, and at best you have some new options to explore.