[tnapavlu]

#1059414

Is it normal to have see a neuro optho before you have the OD surgery? My surgeon just said I needed to see one and didn’t say why. Now I’m a little nervous that maybe this has to do with my peripheal test and something might be wrong! HELP

[gatorgirly]

#1174569

Everyone with Graves should see a neuro-ophthalmologist or at least an experienced ophthalmologist trained in TED to get established in case TED shows up at some point, since these specialists are usually booked months in advance and hard to get an appointment with.

I saw a neuro-op for a year during my TED, while it was active and then inactive, and then when I moved, there was no neuro-op around so I went directly to the oculofacial surgeon who would be performing my OD, and he did all the same testing that the neuro-op did. I think this is common in suburban areas where neuro-ops either don’t practice or are very hard to get in with. Someone else on this board, maybe Shirley, also mentioned seeing a surgeon for all the TED testing prior.

Your surgeon probably doesn’t do as much of this testing (visual field, MRI, CT, etc.) and wants you to see someone who does so he/she can have all the right information before proceeding with your OD. Don’t be concerned – it’s good that you’re seeing both specialists before this big surgery!

[snelsen]

#1174570

I think it is wise, prudent and good medical care to see a neuro opthalmologist when we have TED. They are very familiar with TED, and some of the tests they do, especially a visual field test with a Humphrey machine, help them determine if our vision is being impacted by pressure on the optic nerve.
IT is possible to lose our vision permanently if we have optic nerve atrophy (pressure on the optic nerve.) The tests are combined with your own observations about your vision. One of the first ones they neuro/op docs and you can do by yourself, is look at the color red with each eye, see if there is a difference.
But I am speaking as a patient, and telling you my experience.
In a direct answer to your question, I think your surgeon who is going to do the OD is very wise to do this, and wants this information to know if there is any urgency in scheduling the surgery. You are getting good and conscientious medical care. And, yes, it may have something to do with your peripheral vision test, and it IS possible that there might be something wrong (as there was in my case.) I had to have an OD in the active phase to save my vision. The OD can correct this.
If you have a chance to see your surgeon again before you see the neuro/op doc, you can ask your surgeon your question. Or as him if he is concerned about your vision. All that I have said here, is in any good reference that explains TED.

Shirley

[tnapavlu]

#1174571

Thank you soooo much Gator and Shirley. I don’t know what I would do without you all and this forum. All of you have been such a huge help and so supportive, I can’t express how much it means to me. Especially on the days you feel like you’re fighting this alone!

Gator, I’m so happy for you and your post op appointment. Sounds like everything went great. Hang in there and recover at your own pace, not your co-workers. Your full recovery is the main priority right now.

Shirley, I love your posts, they are always so informative and supportive. I always look forward to reading them as you are able to explain everything (i.e. the emotions, physical, etc.) aspect of this disease. What would we do without you!

Again, thank you both, and hugs!

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