[KimberlyOnline Facilitator October 27, 2016 at 8:15 am Post count: 4288]

#1184533

Hello – There have been some studies indicating a possible benefit to thyroidectomy in terms of TED outcomes, most recently out of University of Michigan Kellogg Eye Center.

However, for the studies I’ve seen that mapped out the actual antibody levels, the reduction in antibodies over the first year is similar for antithyroid drug therapy and surgery. The big difference is with RAI, where antibody levels tend to spike in the months following treatment.

All three treatment options have risks, including surgery. The risks of surgery can be reduced significantly – although not completely eliminated – if you use a high volume surgeon who does a lot of thyroidectomies each year. If you do have a high-volume surgeon in your area, a consultation would be helpful to determine if this is a good option for you.

[mojon October 28, 2016 at 9:17 am Post count: 25]

#1184534

Thanks Liz and Kimberly! This is good information. I have been confused about what thyroidectomy may or may not do. I will take this info with me to my next Endo visit.

[mojon March 26, 2017 at 7:04 pm Post count: 25]

#1184535

UPDATE: Just had my first Orbital Decompression surgery. It is 16 months after the day I woke up with bulging eyes and the onset of GD with TED.

Surgery went fine. I don’t even have black eyes or bad swelling. Double-vision is actually a bit worse, but doc said that might happen. That won’t get addressed until Strabismus surgery. Doc did one eye first and will do the other in 2 weeks. I’m still trying to figure out the best place to do Strabismus surgery. There are some docs that do it locally, but they don’t seem to be specifically familiar with Graves or TED. I think they mostly have done children with “Lazy Eye” problems. Do you think that would be sufficient?

I continue to read with much interest the information and postings here. THANKS for this website!

[Liz1967 March 27, 2017 at 5:03 am Post count: 305]

#1184536

As TED is relatively rare, there are not going to be large volumes of TED patients with strabismus being seen in pediatric ophthalmologists’ offices in smaller cities. Muscles in Graves patients present some challenges. I live in Cincinnati, which is a medium sized city, but still traveled to a center at a University that specializes in Graves (Kellogg Eye Center) for strabismus surgery. If you look at the CV’s of the surgeons you are considering, you might find some have trained at centers where they would have seen lots of Graves patients, like Wilmer or Shiley or Kellogg. Sometimes on their websites, they will list an interest in Graves. My husband is an ophthalmologist and if he is not comfortable with a difficult case, he has no problem referring the patient on to a large volume national specialty center so you also have to trust the doc to know the limits of his expertise. If you are close to a major eye center or large city, that might be your best bet.

[klassey March 28, 2017 at 6:24 pm Post count: 21]

#1184537

Wow, thanks for your update. It will be a year in April for me since the TED started and double vision in June started. So hopefully, I can see the light at the end of the tunnel soon. This is a journey like no other. Stay strong !

[mojon March 28, 2017 at 7:31 pm Post count: 25]

#1184538

Thanks Liz!

I did manage to get a consult appointment with a specialist in St. Louis (Washington University) who has been recommended by several ophthalmologists. I will keep that appointment and at least get his recommendation.

[mojon March 28, 2017 at 7:44 pm Post count: 25]

#1184539

klassey,

It seemed like forever ago when my TED symptoms began, and like you, the double vision followed several months later. It certainly is crazy living with this, but as I’m finally getting underway with my surgery, it is a huge relief. I have gained so much understanding from the people on this site, that just was not available otherwise. Hopefully Strabismus will address double vision, or most of it. It really is hard to wait until surgery is possible, but I think it will work out.

Is your TED beginning to resolve? I know the biggest question I had was “How will I know?” when it’s no longer active. After lots of visits and lab tests with the Endocrinologist, along with many visits to the Eye doc, doing (Field of Vision) tests and measurements, it finally became clear that the TED had done what it was going to do.

I hope all goes well for you, and in a year or two you will be able to look back on this and all will be cleared up.

[Liz1967 March 29, 2017 at 4:02 am Post count: 305]

#1184540

Mojon, Washington Univ in St Louis is a good choice. My husband did his fellowship there. Wait awhile after the decompressions to let your vision stabilize. Even though I had lateral walls which are supposed to cause less diplopia, it took several months for my double vision to return to its presurgery status.

[mojon April 25, 2017 at 5:42 pm Post count: 25]

#1184541

Hi all,

Checking back in, and I’ve made some real progress. First of all, I had orbital decompression first in one eye, then 2 weeks later in the other. I was expecting it to be rough, but it was the opposite. They went in through my nose, so no outside cutting. I was a little sore with nose bleeds for a few weeks, but otherwise could not tell that anything happened. Result is my eyes have fallen back, are not pushed out any longer. The doc was very happy and so am I. This was not difficult at all.

So onto the next step, which had been my biggest worry. There really is no one here locally who does a lot of strabismus surgery, especially having experience with Graves. I met with Dr James Banks Shepherd at Washington University Eye Clinic in St. Louis. Immediate relief. This is his specialty. He had already done 3 strabismus surgeries with Graves patients that week, and has plenty of experience working with folks like me/us. He explained what he will be doing with the eye muscles that he compares to beef jerky now – tough, scarred as a result of TED. He also said he thought there was a good chance that one surgery could be all that I need. However in order to get things right, some patients require several surgeries.

Let me tell you, finding someone who knows what they are doing solved the biggest worry in my life right now. That will be a few months off, but already I feel like at least I’m in the right place, and finally am starting to look forward to coming out of the woods since all this started.

The support and information on this site has been the most valuable resource to me in the process.

Thanks!

[Liz1967 April 26, 2017 at 3:55 pm Post count: 305]

#1184542

Sounds perfect, mojon. Three Graves patients strabismus surgery is a lot in a week so sounds like you are in good hands.

[KimberlyOnline Facilitator April 28, 2017 at 9:40 am Post count: 4288]

#1184543

Great news, mojon – so glad that the OD went well and that you’ve found someone with a lot of experience in doing the strabismus surgery!

[klassey May 6, 2017 at 2:49 pm Post count: 21]

#1184544

WOW, I’m a year into it and wondering how I will know when it goes inactive. Still have some swelling and some days eyes are really bloodshot and other days they look find. Crazy. Thanks for sharing your information, it keeps me positive.

[klassey May 6, 2017 at 2:55 pm Post count: 21]

#1184545

Thanks for posting your progress, gives us all a sense of hope that things will get better!! So happy for you.

[Liz1967 May 7, 2017 at 6:09 am Post count: 305]

#1184546

Things do get better. I am finally on the “other side”, all corrective surgery done, and back to pretty much normal. A little dry eye, a slight lid asymmetry and double vision to the sides making me have to turn my head. Nothing that intereferes with daily life or appearance. You will get there but it requires so much patience!

[klassey May 23, 2017 at 5:47 pm Post count: 21]

#1184547

Update,
Saw my eye Dr and he is pleased with my numbers upon measuring my eyes. I have more movement from side to side and they are not as swollen. Feels that i’m on the burn out side now and will see what happens in the next 6 months. If I stay this way or get better we won’t have to do decompression surgery. : ) Still will have muscle surgery and reconstructive. Best news I’ve had in a year ! Still have double vision in morning and also at night when I get tired but still able to drive and work and play on the computer. Sunglasses are a must, and of course eye drops. Just wanted to share.

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