[jaqeinquotation]

#1060293

vdoroshenko: Thanks for sharing your story with me. It was a bit scary but very informative

Its hard to make this decision and I cannot find any good information to help make me feel any better about the decision I have to make.

Any suggestions? Resources? sites to visit?

[Ski]

#1181813

If you’re talking about the radiation treatments directly to the eye, for treating TED, I know that it can be effective during the early phases of TED, but is not typically effective in later phases. Doctors can use it as one way to minimize the major changes that can occur, while you “wait out” the typical TED curve. Sometimes it is used in conjunction with oral steroids, to minimize the amount of either treatment you need, since they both carry some level of risk.

I’m sure it’s tough to make the decision. I don’t have any resources to point you to for help, but the advice of a second doctor may well give you a higher comfort level.

[bllucas]

#1181814

Hello jaqeinquotation,
I went through the 10 radiation treatments to my eyes to help stop the progression of my TED in January of 2012. I wish I could say it solved my eye issues but it has not. I feel it did stop the progression of my TED and I feel my eyes gradually did get better due to the treatment but they are still no where near what they used to be.

I was diagnosed with Graves disease and TED December 2011 after several months of being misdiagnosed and several emergency room visits due to extreme eye swelling. Over the past two years I have bounced from hyper to normal to hypo TSH levels. Currently I am normal with my TSH levels but my TSI level is still in the 500 range and normal is less than 150 so my ophthalmologist says I am still in the active phase of TED (after two years and three months since the onset of this awful disease) and cannot have the eye surgery I pray for every day.

The radiation did seem to help with some of the intense symptoms such as the continous tearing and intense swelling and helped me to be able to continue to work without so much pain and discomfort. It did help stopped the swelling to a point meaning my eyes did not continue to get worse but it did not make it go away. People who know me told me my eyes looked better after the radiation treatments. The doctor told me the radiation treatments would continue to work on my eyes up to six months after the treatments and I do feel my eyes did gradually show improvements. Today, my eyes look much better than they did two years ago but my eye lids are still pretty swollen, my eye bulge has improved only slightly according to eye measurements and now my eyes feel extremely dry all the time. It has been a long road and looks like an even longer one ahead but you just have to continue to educate yourself, take care of yourself, and hang in there.

Hope my personal experience may help, I know it is difficult to make some of the medical decisions that come with having this disease.
Take care,
Brenda

[ksale]

#1181815

I went through 10 radiation treatments in January 2013. It was about 8 months after the onset of TED symptoms. I had moderate double vision and was starting to lose color vision.
The 2nd week of treatment and a few weeks after treatment were pretty rough. The radiation caused nausea, exhaustion and pretty significant skin irritation. Plus I lost all of my eyelashes, lol.
BUT…based on the results I would do it again in a minute. My doctor had warned me that the hope of the treatment was to stop the progression of TED, not reverse what had already been done. However, within 3 months my double vision was gone, my color vision returned and instead of facing OD and eye muscle surgery, I have just had surgery to repair my upper eyelid retraction.
The radiation oncologist did lay out the risks pretty clearly – cataracts, meningiomas or something more sinister. I had a hard time deciding, but ultimately figured the risk of getting cancer in 40 years was still better than the risks TED was presenting in that moment.
It is a pretty serious decision and I wish you luck in whatever you decide.

[ksale]

#1181816

Sorry….here is the link to the website for the International Thyroid Eye Disease Society (iTEDS). http://thyroideyedisease.org/radiotherapy/

My doctor is the president of this society and from what I gather, very well respected in the field of TED.

[snelsen]

#1181817

This is an area where there is no consensus about this issue. Some docs believe in it in certain situations, some actively do not recommend it. My doc did not recommend it. I took prednisone to relieve the pressure on my optic nerve, until I could have an OD.

It is a tough decision. Probably no definitive answer at all. Many times, whether it is recommended or not recommended, depends on where the doc trained.
I am not current on the recent studies, and/or if there are any.
I wish you the best with your decision.
Shirley

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