[Digarza]

#1058819

I don’t think my ophthalmologist specializes in TED. I was diagnosed in July 2010 with hyperthyroidism, I was allergic to both medications so in February 2011, I took the radioactive iodine. I have been taking Levothyroxine since April 2011. In December 2011 my eye dr. Did the strabismus surgery for the double vision, it didn’t work, now my eyes are even more swollen. I won’t leave my house anymore because of the way I look. Please someone help me find a doctor who can help me. I’m getting very depressed.

Diana

[Kimberly]

#1170182

Welcome – I’m so sorry to hear that you are dealing with this. There was some research done out of Shiley Eye Center a few years ago that showed the emotional burden of dealing with TED is actually comparable to living with cancer. Hopefully, you can connect with a doctor who will get you back on the right path.

(Note on links: if you click directly on the following links, 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)

One site that we recommend for finding surgeons is http://www.asoprs.org. There is a “find a surgeon” option towards the top of the screen. These docs tend to be more knowledgeable when it comes to TED.

We have also just started a physician registry that might also be of assistance. However, we are just getting started, so there might not be a lot of options yet where you are. The registry is located at:

http://gdatf.org/registry/search/

Wishing you all the best — please keep us posted on how you are doing!

[snelsen]

#1170183

It would be helpful to know where you live, if you say it in a post, there might be someone in your area who could recommend someone.
Just as an experiment, I tried the two sites Kimberly mentioned in her post. O live in a major metropolitan city, and there are at least 8 oculoplastic facial surgeons in town that I know of, but the site said there were none. Not sure what this means, for I think some are members of the appropriate organization, aspoprs. So I suggested the other idea for this reason.

I have had TED a long time. I encourage all folks who have it, to see a neuro opthalmologist at least once, for a baseline exam, and preferably, continue to have appointments with them. There are some symptoms that could be serious, and need If you read some of my old posts, either under my name, or strabismus surgery, you will see that this surgery was the most wonderful procedure of all my surgeries. Generally, it is pediatric opthalmologist who do
this surgery.
How long have you had your diagnosis of tED? Generally, it takes a year or more for the eyes to change, to have it be effective to have strabismus surgery. When the eyes are always changing the measurements cannot be accurate. Are you going to an eye doc who is familiar with TED?

I understand how you feel, what you are going through. Been through it all, still am going through it. Do write again on the forum, send a PM if you like.
Shirley

[Ski]

#1170184

Hi Shirley,

Just a comment on the links Kimberly put up — the first link was to the ASOPRS site, and when I put in the data for your metropolitan area (a lovely one, I might add), I found all 5 of the surgeons you’re probably talking about.

The second link Kimberly put up is to an “infant” physician registry we are beginning to build, which is attached to the GDATF site and includes patient input, so I’m not surprised it didn’t have information on your local surgeons. That will be a better resource as time goes by and folks contribute — as a matter of fact, when you get a spare minute, it’d be great if you could take a look and see if you can provide any info based on your own experiences for others who may be looking for it. I’m just sure you’ll have some excellent input!

[Ski]

#1170185

Hi Diana,

I wish you luck in finding a doctor that you like better! Try to remember that, during some phases of TED, there really isn’t a lot that a doctor can do, and sometimes interventions are just temporary fixes (or don’t work for a certain person), and sometimes they just aren’t recommended, so you may still need to wait through some discomfort. We understand, believe me!

Some of the better advice I’ve heard is to wear big sunglasses when you go out (it’s so much easier when you feel your eyes are hidden), to also wear a hat (protects your eyes and further obscures your eyes from others’ view), and to keep in mind that everyone is more attractive when they smile, so keep that smile on your face and realize this condition is not permanent! No matter how it works out for you, there is an end to TED, and there are corrective procedures that can bring your eyes closer to normal once you’ve reached the cold phase. Depending on the progression you experience, you may not be able to come back to absolutely the same look you had prior to TED, but procedures are better all the time and doctors get more proficient at those procedures, so you will have good options no matter what.

[snelsen]

#1170186

WOW! i surely must have done something wrong. I found it hard to believe, and sure enough it wasn’t to be believed. I will try it again and let you know that I succeeded!

[snelsen]

#1170187

Tried it. I saw no way to sign up or register. Perhaps that is the problem.
Came up with zip again. I’ll send a pm to you, Ski.
s

[Kimberly]

#1170188

Hi Shirley – On the registry, we don’t yet have any docs listed in your area. As Ski said, any recommendations would be appreciated!

On the ASOPRS site, click on “Find a Surgeon” at the top of the page. You don’t have to sign in. Remember that the narrower your search, the fewer options will return. So if you include a zip code in your search, you might not get many options unless you have selected the option to “search within xxx miles of this zip code”. I got 5 returns by putting only your city name and 15 returns by putting in only your state name. Hope this helps!

[Author]

Posts