[scarlett]

in reply to: radiation treatment to eyes #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.

[scarlett]

in reply to: radiation treatment to eyes #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!!!!!

[scarlett]

in reply to: radiation treatment to eyes #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!

[scarlett]

in reply to: STRABISMUS (Eye Muscle) SURGERY, ANYONE HAD IT LATELY? #1065269

Hi! I had my eye muscle surgery on May 26 – about a month ago. I really think my doctor is a wizard or magician or something – I left that day with such an improvement, I couldn’t believe it. Seriously – I noticed improvement immediately.

First off, about waiting “long enough” to have the surgery. My doctor told me repeatedly “I’m not going to fix you if you’re going to fix yourself.” He reminded me several times that this condition can correct itself, either wholly or in part, so I needed to be patient. I went back three times over the course of several months to have my vision measured, and the measurements never significantly changed.

I had awful double vision that could not be corrected with prisms. Of the three kinds of DV, (horizontal, vertical and torsional/twisted), I had some of each. My doctor said that if the degree of difference between the two images that you see is under approximately five degrees, (they are less than five degrees apart) your brain can ignore/compensate for it and you’ll never know that something is off when you focus on it with both eyes. If it’s over five degrees, you do see both images.

Before the surgery, my vertical difference was roughly 18 degrees, meaning that one image was 18 degrees above (or below?) the other. At my two week post-op visit, it was three. He knocked out 15 degrees in one swipe and it may get better as the healing continues.

Before surgery, my torsional measurement was about 7 degrees — what I saw was rotated seven degrees from vertical. Now, it’s about 1.5.

Before surgery, I’m not sure what the horizontal was, but now it’s insignficant.

My peripheral vision to the right is pretty bad – which he predicted – but that’s fine. I can just turn my whole head if I need to see to the right.

He had prepared me for the possibility of two surgeries to get the DV corrected, but, if things continue, it’ll be just the one! I go back to see him in September, but right now, I’m satisfied enough to stop here.

It was done under general anesthesia. I had no pain at all afterwards – just wild itching in my eyes that was helped greatly by an ointment he gave me. By that, I mean it wasn’t really a constant itch – it was like a stabbing itch. It would come! and then it would go away. And it sort of felt like I had something in my eye for a while. Also, my eyeballs were vivid red for a few days afterward and a little swollen. He told me I wouldn’t have any bruising, but I did have a little – I’m extremely fair-skinned, so what shows up on me wouldn’t show up on people who actually have some pigment.

As for having someone with you after the surgery – I live alone and don’t really have family to stay with me – I was fine alone. (I’m in my 40s) I went home immediately after the surgery and didn’t leave the house for a few days. I had people check in on me, but really – I’m one who doesn’t like to be doted over when I’m recovering from something. I took it extremely slow, and didn’t do anything except watch TV. It was amazing to watch TV and see only one image!

And I bought one of those huge wedge pillows to sleep on to keep my head elevated and to reduce swelling.

I was always scared of eye surgery – my big fear is to have permanent vision impairment of any kind. This surgery, however, was such a life-changer. I’m so glad I had it and so thankful for the results.

[scarlett]

in reply to: Bizare vision symptoms….. #1061757

Do some research on ocular migraines — see if your symptoms fit.

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