[runbarb]

#1058686

I am to begin radiation treatment to my eyes on Tuesday. If anyone has had experience with this I would appreciate hearing from you. I am on steroid dose pack (began on Friday) and will have radiation. Doc states this is effective 50% of the time. I have horrible double vision and eye muscles closest to my nose are very swollen. Will treatment hurt? Doc says no but want to know if someone has been through this treatment. Was it effective for you? What can I expect as to time frame for any relief from the double vision? I will have 12 treatments-is this normal amount? Has anyone had any success with this treatment? I am hopeful after speaking with doctors but also want to be realistic. Appreciate any comments on this course of action. Barb

[gatorgirly]

#1169370

Hi Barb,

I don’t have any insight (no pun intended) to offer on eye radiation, but I’m very interested in keeping up with your journey. I suddenly developed TED at the exact same time I went hypo, six months after RAI – before and during which I took prednisone to reduce the likelihood of developing TED. But, alas, thyroid antibodies have minds of their own.

My neuro-ophthamologist started me on a very high dose of prednisone – 50mg/day for 3 weeks, then 40mg/day for 3 weeks, and now I am down to 30mg/day for another 3 weeks and will continue tapering down and see him on Sept. 23. The prednisone started working instantly for me – the same day. He said if I reacted well to the prednisone, I would react well to radiation, but he was so impressed with my reaction to prednisone that we did not even discuss radiation at my last appointment. However, he did say the TED could come back in full force once I taper off the prednisone, which is when we would need to have the radiation conversation.

So what I was trying to say in not so many words, is that I hope you will keep us updated on the radiation. Good luck on Tuesday. Sorry I couldn’t be more helpful.

[scarlett]

#1169371

I had my radiation treatments in May 2010, about six months after my symptoms first appeared. My earliest symptom was swelling — my double vision didn’t kick in until later. My right eye was considerably worse. Because it was progressing somewhat rapidly, my doctors recommended radiation. Even though they thought it was progressing quickly, they said I still had a moderate case at the time of the treatments. I couldn’t believe it — moderate was awful!!

I had ten treatments in total. It is completely painless. I never felt a thing during my radiation treatments.

Where I went, the process went like this. My first day was very long — lots of preparation. They made a mask type thing that they used each day — they’d strap it on and use the markings on it to determine where to point the radiation.

Then, each day, I would lay on the table, they would line up all their equipment, zap me, and then I’d be done for the day. All together, my actual radiation treatments took less than 20 seconds per eye per day. I work near the hospital, so I scheduled all my appointments at lunch.

For me, the worst thing was the steroid they had me taking. I can’t remember which it was, but I felt awful while taking it. It made me so thirsty, I couldn’t drink enough — but was still thirsty, and I was so tired.

Afterwards, the skin around my eyes was very dry — but like leather, not flaky. That has gone away. Also, I had some discoloration which has also faded. I am, though, very very pale so this might not be something you face. I did use a lot of lotions and creams to fix these things.

As for my outcome. My doctors’ goal was to stop the progress of this disease. It did that. My swelling and other problems stopped after the treatments, and continued to correct for quite a while. My right eye is still more prominent than my left, but the swelling has gone down so much. It’s not a quick fix by any means. You have the treatments and then just wait and hope. I had several follow up visits where my doctors were very pleased by my progress — when I still didn’t see any!

For me, though, it did not correct or stop my double vision at all. But, they told me that it wouldn’t. I was repeatedly reminded that the treatments likely would not fix my double vision, so I was not surprised or disappointed by this. I had surgery about a year later (in June of 2011) to correct my vision. So, yes, I did live with double vision for about a year and three months. And yes, it’s awful.

Just as an aside — a perspective I quickly gained. I had my treatments at a large radiation oncology center in a big city. I would go in every day, and see all these other people there, going through radiation for cancer, etc. They were so obviously sick, they had lost their hair, they had family with them — they were so scared and in such pain. I’d go in at lunch, from work, in my little work clothes, all put together. I didn’t look like there was anything wrong with me. And I was in and out so fast. I would see these other people and just feel so bad for them. I actually felt fortunate to "just" have thyroid eye disease.

I know this is kind of choppy — please ask any questions you have. I’m trying to get this posted quickly — it’s storming where I live and my power is blinking!

[runbarb]

#1169372

Scarlett:
Thank you so much for the reply to my earlier post as it was just what I was looking for. Sounds like our paths were similar with this disease. I was diagnosed in January 2011 with Graves, had the radioactive iodine treatment on February 1 then in March started to notice eye problems. My endo did not think it was Graves (said that would be rare) and thought it was allergies as I live in an area that is bad for them. I started to get blisters in my eyes in March and had a CT scan in early April which confirmed I had Graves in the eyes. I had blisters and swelling then about 2 months ago my right eye started to turn inward. I have such bad double vision that I have to wear an eye patch to be able to see. I still drive, work and exercise but it is getting more and more difficult. I went this past week for eye doc checkup which showed loss of peripheral vision in my right eye as well as loss of color contrast. Another CT scan showed that the condition had worsened. Hence I was sent to a surgeon then on to the radiation onocologist. I was fitted for the mask that afternoon so am ready to go on Tuesday best I can tell. I was really hopeful that this would be a cure for this double vision. The onocologist indicated that the results were 50/50% but he said he thought it might cure my double vision as the muscles closest to my nose would not be as constricted and thus move the eyeball back. Seems like that did not happen with you. My left eye is not pointing towards my nose yet so maybe at least this treatment will stop that from occurring. I would rather try this than have the surgery. I assume your surgery was the orbital decompression surgery? I am so fearful of that. I remain hopeful that between the steroids which have had no effect as yet and this radiation I will see some change. I have to do 12 treatments. Thank you again for your insight. I have gained so much from this site and the folks supporting each other. Scarlett, I too was mindful that I go to an infusion center and there are patients there that make this disease look like a mere cold. I try to keep in my mind that I can still see even if it is not as well as I used to. Barbara

[runbarb]

#1169373

First treatment done and not too bad but for the fact that it occurred 30 minutes late and I was nervous. Lots of re-postioning, checking, Xrays then the treatment. Glad it is over with. 1 down 11 to go. I remain hopeful.

[scarlett]

#1169374

Hey! I was thinking about you yesterday! I live in an area that was being pounded by Tropical Storm Lee — so I didn’t get to check this site.

I’m glad your first day went well. It does get better and quicker as they get used to you and to what they’re doing with you.

I think you have a great attitude! Stay hopeful! A couple of times, while I was laying on that table, I’d think, "What the heck am I doing here?!?!?" and just hope I was doing the right thing. So far, though, I’m glad that I did it and pleased with the results.

Oh, and the surgery I had was not the orbital decompression. For some reason, my doctors all discouraged that for me, from the start. (It could have been my "I don’t want any surgery I don’t HAVE to have" attitude!) I had the eye muscle surgery to correct my double vision. I think the general term is strabismus surgery. It went great!

By the time you read this, only ten more treatments!!! Yippee!!!!!

[runbarb]

#1169375

Scarlett: 3 down 9 to go! Treatments are going well. Today took less time than other two. Have you been on steroids as well? Doc put me on another round of them yesterday saying he was being agressive with this. He hopes, I think, that the combination of the steroids and the radiation will help. I am still hopeful. Radiation is painless and the only downside is the time factor as it takes a few times for the technicians to get the angles correct-no problem there I want them to get it right too. Thanks for the encouragement. Working and doing all this is a struggle-my eyes are shot by the end of the day. Like now. Bye. will want info on the surgery you had if I get to that point.

[Ski]

#1169376

Hello ladies!

runbarb, I’m so glad you are feeling good about the treatments!

I just wanted to inject a tiny bit of basic info in case it helps — at our last conference, there was some talk of the fact that these two methods of treatment, early on in the process, may serve to keep the worst of the changes at bay during the active phase of TED. (I’m sure you both know of the hot/cold phases?) Once the active phase is over, there is typically some period of stability, followed by a period of improvement. It’s possible that the more you can keep down the swelling now, you can minimize the need for surgery later, or make surgical corrections less complex in the end.

So, while it’s true that both prednisone and orbital radiation are effective only while you’re taking them (in other words, stop treatment and the swelling returns), TED has a fairly well-defined disease curve, so if you can keep the swelling down when it’s likely to be at its worst, you may just "wait out" the hot phase and end up with a milder result overall.

I know it seems drastic to be treated with either of these methods, but we’ve heard that a patient who responds well to one will usually respond well to the other, and that means you can use them both in order to use less of each and minimize the risks.

Wishing you well, please do keep us updated!

[scarlett]

#1169377

Hey, Runbarb! Just wanted to check in on you and see how you’re doing. You’re almost through, aren’t you? Hope you’re feeling well.

[runbarb]

#1169378

I am now through 9 of the 12 radiation treatments and counting down to the end. All has been painless and other than delays at the hospital when others receiving radiation are late etc. all has gone quite smoothly. I meet with the radiation onocologist every Wednesday. This past Wednesday he said he thought my right eye, which is the one so horribly pointing inward to my nose, has a little more ability to move to the right than it did the previous week. I was thrilled as I needed a boost. Other than that the swelling around my eyes seems to be down some too which is another positive. I will finish this week and see doctor after my final treatment. I am still taking steroids and have maybe another week to go on them. I remain hopeful. I will see my eye doctor tomorrow and am anxious for his report as well. I am tired of the patch and just hope it is soon a fashion acccessory that I can rid myself of. I am leaving for a trip soon and would love to be able to be patch free. I see endocrinoloigst this coming week too-the one who told me that I didn’t have Graves in my eyes-that it is too rare and it was likely allergies. I plan on eliciting an apology from him for his mis-diagnosis and his cavelier attitude about it when last I saw him. He was a jerk and laughed at my swollen eyes. i have been bitter ever since and want him to see that it has been a very real problem. Do you find that most doctors really are baffled by this disease? Anyway, counting down to the end of the radiation and remaining hopeful that I will actually see some improvement over the next few weeks.

[runbarb]

#1169379

I am now through all 12 radiation treatments. No improvement yet. They say it will be several weeks and any improvement will be slow. Any one else have experience in how long it takes to notice any effects? Off on a trip for 2 weeks tomorrow and am so hoping I will be able to take off the patch and throw it away.

[Kellimoe]

#1169380

I have been reading your posts and I’m hoping that doctor felt a little of your pain from the misdiagnosis. I realize that this TED is a rare disease but to not apologize is just rude. When you’re wrong you’re wrong. Doctor or no doctor. How are your eyes now? Are you feeling any different or is it comparable? They want to start radiation on me but I can’t seem to get past the fitting of the mask. I’m so claustrophobic it’s pure terror for me. I just don’t know if it is worth it or not. I’m hoping you are patch free and happy with your results! I look forward to hearing from you!

[runbarb]

#1169381

Sorry it has been so long since I posted on this website, a trip and work have kept me busy.

I am sorry to say that the radiation did not work to move my eye back into its proper place. I remain wearing my patch and hate it adn still have such horrible double vision that I cannot even walk with both eyes open. Radiation oncologist was upset that this did not work for me but my eye surgeon who I have been consulting says it did work as it saved by sight. Test resutls for my peripheral vision and color vision are improved from before the radiation treatment. So maybe there is some progress. I am still on prednisone and will be for another 2/1/2 weeks I believe. I have another appt. with my regular eye doctor on Dec. 1 and expect that he will order another CT scan and do the color and peripheral vision tests again.

With the change to Standard TIme this past weekend it has gotten harder to drive home after work. But, I manage this and to work and to run in the dark. This darn disease will NOT defeat me. I get down sometimes and feel sorry for myself especially when strangers ask me about why I wear a patch or I cannot see something clearly. It is frustrating. The patch gives me a headache after wearing it all day as the strap is elastic and it binds. Does anyone haev any other suggetions? As stated above I must keep my right eye covered. If I have both eyes open I cannot function nor can I do so with right eye open and left eye covered except to read.

Has anyone on this site consulted with doctors at Wills Eye Hospital in Philadelphia?

Courage to all. Runbarb

[Kimberly]

#1169382

Hello – I’m sorry to hear that the radiotherapy did not help your double vision…but if it helped preserve your overall vision, that was certainly worth going through the process.

Hopefully, you will get some responses on the eye patch. Is the double vision by chance stabilizing? If so, you might be a candidate for prisms, which could provide some relief.

Take care!

[runbarb]

#1169383

Kimberly: I still wear the eye patch and now am experiencing swelling again around my eyes. I am on the downside of the dose of Prednisone so it appears that as I take less of a dose the swelling is coming back. Very depressing. I go to the eye doctor on December 1 so will see what he says. I assume I will have CT scan again and other in office tests. I think my vision is worsening too.

Are you familar with Wills Eye Hospital in Philadelphia? If so, I would a recommendation as to a doctor to see. I may fly there as it is supposed to be the best eye hospital in the world.

Had a crying session on Sunday night but am more stable now. This disease has taken its toll on me.

barbara

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