Hold control (command on a Mac) and press the + key as many times as necessary to increase the font size.
Hold control (command on a Mac) and press the - key to reduce the font size. - hide

#1 March 28, 2017 19:31:39

mojon
Registered: 2016-07-09
Posts: 18
Profile  

GD with TED

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.

Offline

#2 March 28, 2017 19:44:14

mojon
Registered: 2016-07-09
Posts: 18
Profile  

GD with TED

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 when it's no longer active.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.

Offline

#3 March 29, 2017 04:02:12

Liz1967
Registered: 2014-02-25
Posts: 172
Profile  

GD with TED

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.

Offline

#4 April 25, 2017 17:42:42

mojon
Registered: 2016-07-09
Posts: 18
Profile  

GD with TED

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!

Offline

#5 April 26, 2017 15:55:49

Liz1967
Registered: 2014-02-25
Posts: 172
Profile  

GD with TED

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

Offline

#6 April 28, 2017 09:40:31

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 3962
Profile  

GD with TED

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!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

Offline

#7 May 6, 2017 14:49:55

klassey
Registered: 2016-08-14
Posts: 15
Profile  

GD with TED

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.

Offline

#8 May 6, 2017 14:55:31

klassey
Registered: 2016-08-14
Posts: 15
Profile  

GD with TED

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

Offline

#9 May 7, 2017 06:09:47

Liz1967
Registered: 2014-02-25
Posts: 172
Profile  

GD with TED

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!

Offline

#10 May 23, 2017 17:47:40

klassey
Registered: 2016-08-14
Posts: 15
Profile  

GD with TED

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.

Offline

Board footer

Moderator control

Questions? Problems? Please contact us at info@ngdf.org or 877-643-3123.

GDATF on Facebook

Support the GDATF and become a member today!

© 2017 Graves' Disease & Thyroid Foundation