[leon764]

#1058851

I was diagnosed with GD in Jan. 2011. My symptoms were drooping eyelid on one eye and the other eye was bulging. Since Apr. of 2011 I been taking Methimazole to control my thyroid levels, and now they are in check. So as the eyelid and bulging eye became more or less normal. However, since about Nov. of 2011 I have developed a blurry and double vision. Mostly when I’m looking down, and it seems as it’s getting worse. I have been to 2 ophthalmology doctors. They were not very helpful. One of them sent me to an Oculoplastics surgeon, and the other one to a Neuro-Ophthalmologist. Can someone help me with this and tell me which doctor I should go to, Oculoplastics surgeon or Neuro-Ophthalmologiest?
Thank you,

[Kimberly]

#1170394

Hello – Hopefully, others will chime in here, but if you no longer have bulging/protrusion issues, the surgery that is performed to correct double vision issues is strabismus surgery. One referral web site for surgeons in general that we recommend is http://www.asoprs.org.

(Note on links: if you click directly on the above link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

We have also just launched a physician registry of doctors who have told us they have particular expertise in Graves’. To access the registry, go to the home page at http://www.gdatf.org and click on “physician registry” in the box on the top right-hand side of the screen. Because we are just getting started, we might not yet have listings in your part of the country.

[snelsen]

#1170395

Hi, I am sorry you have TED. i have it too, and it is tough to have. Since you are pretty new, I am not sure how much you know about the path of TED. There is a lot of information in the forum, but sometimes it is hard to dig out when you want it RIGHT NOW. I understand.
So-the short version of TED. There is an active (hot) and inactive (cold) phase. Basically, the active phase is when your eyes are changing all the time, usually not for the better, and unfortunately, there is not a lot of permanent treatment at this phase. No surgical treatment can help us during the active phase, for the measurements are always changing. We have to wait until the cold or inactive phase. There is one exception to that statement I made about surgery in the active phase, and that is in the next paragraph. We can try to help ourselves with the things that are driving us crazy (double vision, dry eyes, scratchy eyes, burning eyes, light sensitivity etc.) We can do this with eye drops, ointments, gels, sunglasses, warm compresses.
You are in the active phase.

Regarding your doctors, you have had very good referrals. Definitely continue going to the neuro-opthalmologist, for they do very important tests, to be sure your vision will not be permanently damaged by the pressure behind your eye on the optic nerve.

*Exception for surgery in the active phase- In all probability, the neuro/opthal referred you to the oculoplastic surgeon, just in case the tests show that your optic nerve is having too much pressure (called optic neuropathy) This is done by color tests and visual fields by the neuro/opthal/
IF this occurred, you would need surgery (OD or optic decompression) in the active phase, to save your vision and relieve that pressure. This is pretty rare, and only folks with severe TED (like myself) are in this situation. It was the neuro/opthal doc who diagnosed it, referred me to to the oculoplastic doc. And I did have that surgery in the active phase.
In answer to your question, do continue to see the neuro doc, and I imagine you will see the oculopastic surgeon on an irregular basis unless you need emergent surgery. (IN the inactive phase,you might be having more surgery from the oculoplastic surgeon.)

I do suggest you check around, and find a pediatric surgeon who “does” strabismus surgery. It is usually a doc who also “does” graves patients.
This is the life saving surgery for me, for it corrected my nightmarish double vision. BUT in the meantime, they check your double vision carefully, and they (and you) will be able to tell when you have moved into the cold phase.
**AND their measurements provide information that will help you by prescribing prisms as a temporary measure to help correct the double vision.
They help most people, they did not help me much. I am worried that I am exceeding the length of the posting, so will send this. shirley

[snelsen]

#1170396

I’ll write more later, I have a dental appt right now

[SallyB62]

#1170397

Sorry to hear of your plight with TED. I went through that blurry / double vision for a loooong time too. Has your endocrinologist or other doctors had antibody testing done to see if your levels are getting worse? My antibodies were off the chart and blurry vision was getting really bad, so I had to get my thyroid taken out. Doctor said that as long as the thyroid was in my body and stimulating my immune response, my eyes would only get worse.

I’m not a doctor, and not trying to say that this is what is going on with you. But, I encourage you to do lots of homework on TED and discuss with both your endocrinologist and an ophthalmologist who specializes in endocrine eye disorders.

I hope things get better for you.

[Kimberly]

#1170398

SallyB62 wrote:

Doctor said that as long as the thyroid was in my body and stimulating my immune response, my eyes would only get worse.

Just a quick reminder that every patient is unique. Shirley, who has been wonderful about documenting her experiences with TED, was actually treated with thyroidectomy decades ago, but in the last couple of years has experienced a severe case of TED.

We had one presenter at our Boston conference mention that he had never seen two Graves’ patients have an identical experience with the course of the disease — even identical twins!

[leon764]

#1170399

Thank you to everyone who participated. Your inputs were very helpful. It’s looks like TED is the kind of disease that will keep me entertained for quite a while.

[jstephens]

#1170400

Kimberly wrote:

Hello – Hopefully, others will chime in here, but if you no longer have bulging/protrusion issues, the surgery that is performed to correct double vision issues is strabismus surgery. One referral web site for surgeons in general that we recommend is http://www.asoprs.com.

(Note on links: if you click directly on the above link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

We have also just launched a physician registry of doctors who have told us they have particular expertise in Graves’. To access the registry, go to the home page at http://www.gdatf.org and click on “physician registry” in the box on the top right-hand side of the screen. Because we are just getting started, we might not yet have listings in your part of the country.

Looks like http://www.asoprs.com is no longer aatctive website

[Kimberly]

#1170401

Ugh, sorry, it’s http://www.asoprs.org. That’s what I get for trying to type from memory instead of cutting and pasting! I’ll go back and edit the original post in case anyone else tries to use that link.

[Author]

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