[Anonymous]

#1039761

Hi Erica,

I also had swelling in my upper and lower lids prior to the radiation treatments but I had the treatments because there was slight pressure on my optic nerve and my doc hoped the treatments would reduce the swelling enough that I could avoid decompression surgery. The radiation did do the trick and decompression surgery was unnecessary. There are now studies that indicate radiation treatments may be ineffective in treating TED, but I for one had positive results as far as my vision was concerned. There was some decrease in the visual swelling in my upper and lower lids, but not significant. After I reached the “cold” phase I did have surgery to remove the fatty deposits that had developed beneath my eyes and the results were wonderful. I will be having my upper lids done in the near future. Let us know how your radiologist visit goes!!

Best wishes,
Donna

[Anonymous]

#1128400

Donna,

I have had Graves for about three years. I am interested in hearing about your radiation therapy. My Thyroid has balanced – I am no longer on any medication, but I still have swelling and protrusion of the eye. My doc told me that he thinks the swelling may actually be scar tissue on the eye muscles due to the time that has passed. He is now recommending the orbital decompression surgery rather than radiation. he feels the radiation will not affect the eye muscles because they are already scarred. I still wonder if I should give radiation a try. Any thoughts. Do you see an eye surgeon? Who recommended the eye radiation for you, and how much time had passed from when you were first diagnosed with Graves? Thanks in advance for your help.

Debbie

[Anonymous]

#1128401

I had radiation 3 years into the GED, post orbital decompressions. In my case, it seemed to make no difference. My radiologist was a very honest, informative man, who told me that while it is impossible to predict who radiation may help, it is more likely to be helpful early on in the disease process. While it may seem less intrusive than surgery, having gone both routes, the 10-12 trips back and forth and the time spent immobilized were not much easier than undergoing surgery, and the resulting fatigue was just as hard to recover from. If you trust your doctors and they don’t recommend it strongly, I would go with their opinion. Good luck with your decision.
Mag

[Anonymous]

#1128402

Debbie,

I just started radiation treatments on Thursday; I will have 10 treatments altogether. I see an opthomologist who does treat a lot of Graves patients and he took one look at me and recommended radiation. I am in it to hopefully decrease some of the swelling (my lids and under eyes are horrible) and to arrest the progression of the eye disease. I was diagnosed last July and the optho told me you have more success the sooner they begin. He did mention that once there is scar tissue behind the eye, it’s harder to correct. But I don’t see what harm there would be to try the radiation first before opting for surgery. From the way it was explained to me, there is very little risk involved and the treatments themselves are very simple. Only takes about 5 minutes once all the prep work is done (they make a face mask for you so the radiation hits exactly where its supposed to). The opthomologist I am seeing is also a plastic surgeon. He told me that he wouldn’t do eyelid surgery on anyone with Graves Eye before they had radiation. There’s too much chance that your eyelids could swell again and then ruin everything. I can tell you this, if I have to go thru life looking like an old houndog, I will definitely have surgery. My eyes aren’t really bulging thank God. That is the thing I’m hoping to avoid by having these treatments now. I understand that it takes at least 3 mos and up to 6 before I start to see any improvement. I hope this helps with your decision. I hope I am as lucky as you were to have the thyroid stablize itself. I am on PTU and probably will be for a while. I will avoid radioactive iodine because of the eye involvement and sure am not anxious to have surgery.
Erica

[Anonymous]

#1128403

Donna,

I’m so glad you wrote. I started the radiation treatments on Thursday and it seems to be going fine. There’s really nothing to it once the face mask was made. I am not getting my hopes up that it is going to do much for my appearance. I’m already thinking about plastic surgery for my puffy upper lids and baggy lower lids. The opthomologist I’m seeing is also a plastic surgeon. He told me right off the bat that he wouldn’t do plastic surgery on a Graves patient unless they had the radiation first. That’s all I had to hear; my mind was made up to start ASAP. I’ll wait another year or so, but if I still look like an old houndog, I will definitely have surgery. I’m happy to hear that your surgery was so successful; how long do you have to wait before having the upper lids done? I didn’t realize they did them separately. How long from the time you were diagnosed did you have the radiation treatments? How long from that til you had surgery? I look forward to your advice? Many thanks.

Erica

[Anonymous]

#1128404

Hi Erica,

Best wishes with the radiation treatments! I had them about 6 months after developing TED. I had to wait about 4 years to have surgeries because my ophthalmologist will not do any surgeries (unless absolutely necessary due to possible loss of vision) until the TED is in the cold phase ~~ in my case it took about 4 years for the TED to burn out. This of course varies from person to person.

Don’t let the idea of having several surgeries scare you ~~ each surgery is for a very specific area. I will hopefully be having my upper lids done this summer. There were some minor pressure changes in my eyes the last time I saw my ophthalmologist (December) and he preferred I wait another six months before having the upper lids done just to be absolutely sure that there was nothing new going on with my eyes. I trust his judgment. No sense in having surgery to only possibly need to have it done again!

Again, best wishes with your treatments and please let us know how you are doing. Feel free to email me!

Take care,
Donna

[Author]

Posts