[shadowrider]

#1019065

Hello Everyone,
I am not sure where to begin, but I’ve been diagnosed only 1.5 yrs with Grave’s. and have been able to get my thyroid under control with atd’s- so normal tests for 6mos. Feeling pretty good- except for TED getting worse. Recently had a couple of mos of prednisone-some benefit in terms of comfort and a little reduction in swelling-no real help with the muscle problems(double vision, hard to look up) I do have prism in one eyeglass lens. The side effects were very sudden and dramatic-I kept telling myself it would be worth it- if it helped.
So now we are up to the point when the eye surgeon will let me choose to get this radiation procedure. I have a scheduled consult with the radiation oncology dept in a nearby hosp. Does anyone have any experience with this treatment? My eye surgeon did explain to me it would have limited benefit to the underlying muscle problem(only eye surgery to correct this)but the low dose radiation could help with swelling and puffiness. What should I ask at this consult, besides if they have had experience with this type of treatment? Many thanks for any comments and input. Susan

[Ski]

#1068974

Orbital radiation does much the same thing as prednisone. At our last conference, the doctor indicated that he often uses both orbital radiation and prednisone in order to limit the amount you need to use of each, if you catch my meaning. If you’ve had success with prednisone, you are likely to also have success with radiation, but neither of these things do anything to bring you back to "normal," they just keep the swelling from getting very much worse. It can help to keep your need for surgical correction at a minimum as well. Ask the doctor what benefit they feel they can ADD to your current treatment, because you don’t necessarily need it at this point unless your optic nerve is in danger of being compressed.

[Sue_Conard]

#1068975

Hello Susan: I’ve gone through three IV Steroid infusions as well as the Orbital Radiation Therapy for 10 days. I will tell you that I learned you can only have the Radiation Therapy TWICE A LIFETIME. There are side effects to every procedure, but it was 15 mins. EVERY DAY for 10 days and did it work?? I’ve seen not much difference but the dr. seems to think it worked. He can tell when he measures my eyes….

[Ski]

#1068976

I have not heard that about the radiation therapy (twice in a lifetime). We’ll have to ask about it at our next conference. They spoke at length about it last year, I would have thought that detail would’ve been high on the list of things to say about it. We’ll get some clarification.

[Sue_Conard]

#1068977

Thanks Ski. I’m just letting you know what the radiation oncologist told me when he treated me. It may vary from person to person, but I agree with you on the prednisone. They had me on prednisone while going through the radiation therapy at the same time b/c they say you get better results. I can tell you they also said that I should see results for up to 6 months after the radiation, but I’m not sure it was worth it for me.

[lakeview]

#1068978

I am also wondering – is radiation and steriods worthwhile …
Also what are the side effects of steriods and do they happen to everyone….
I am awaiting tests and results and wondering what the next course of action will be for me… so far I have had no treatments but my eyes are swollen and I have double vision. I am going to my optomotrist tomorrow to see if I can get prisms for my glasses.
I am euthyroid… and my endocrinologist has seen this before… but mentioned that thryoid drugs can help the eyes… but no drugs for me yet.
So I am in limbo… and wondering if anyone else has been there before
Thanks
Lakeview

[Ski]

#1068979

Lots of folks here have been through it ~ if your vision is not threatened, often it is not worth the risk of prednisone or radiation therapy. This is a topic for discussion with your ophthalmologist. Thyroid meds typically have no impact on the eye disease ~ they are separate diseases. Sometimes hypothyroid can trigger swelling in the tissues around the eyes, but not behind the eyes, that belongs solely to TED. For the most part, TED "resolves" to the best state possible within a period of 1-3 years (smokers are typically the people with longer periods of time), then you can talk with your doctor about correcting whatever issues remain with surgery. Some people revert almost completely to normal and never need surgery, just so you know. The side effects with prednisone do not necessarily happen to everyone, but I believe some of the effects are common (moon face, weight gain, feeling tired). The advantage of prednisone, if your vision is NOT threatened, is in keeping the overall swelling down, which minimizes the need for surgery afterward, but that needs to be balanced against the side effects.

[Sue_Conard]

#1068980

Hello Lakeview…my eyes are usually a lot more swollen in the morning than during the day and I have the double vision too. It’s a BEAR to have double vision…and, I also have prism glasses. I believe Jake also has the prism glasses and they do work for me, but my eyes are still too unstable to wear them all the time. It’s easier for me to just patch one eye and then I’m not so aggravated. I agree with Ski that my thyroid meds (tapazole) hasn’t made any impact on my eye disease so I’d be interested to see how your appt. goes. Please report back to us your test results and the path you choose for treatment!! Good luck!!

[shadowrider]

#1068981

Hi Thanks to all that have replied to my original post. My experience with the prednisone side effects include; swollen face, bloating and immediate weight gain. I also felt very hyper, as if I was on big doses of caffeine, and need I mention the incredible excess sweating? But I was able to start wearing my contacts again, and not feel like my eyes were popping out of my head literally. Did I want to quit taking the prednisone right away? Absolutely!

My eye Dr did not mention the possibility of taking the prednisone at the same time as undergoing the radiation therapy. My big question to those who have had this procedure, is what side effects did you experience from the treatment? The literature the hospital sent me was geared towards cancer patients, and mentioned burns on the skin, hair loss from the area treated, and a feeling of tiredness through the duration of treatment. Is this true? What happened to you? Why did you do the treatment twice? Was it different the 2nd time?
How come you wouldn’t do it again? I have my consult with the radiologists tomorrow-wish me luck.
P.S. I also have a prism in my eye glasses, and they have definitely helped. The double vision is worse when I am tired.

[Sue_Conard]

#1068982

Hello Shadowrider:
I don’t know that I can answer all of your questions, but will tell you my experience with the radiation therapy. I stayed on prednisone while going through the radiation therapy, as the dr. said it would be beneficial. I didn’t have the burns on the skin, the hair loss (they radiated my eyes around my temple area) or the feeling of tiredness (could have been from the prednisone). The only thing I will tell you, is that if you’re claustrophobic, it could be bothersome as they put a full mask over your head and screw the face mask into the table, so you don’t move any while getting the treatment. However, the treatment is so quick, it didn’t bother me. Good luck and let us know what you decide and how your treatment goes.

[MsRango]

#1068983

I was diagnosed with Graves 2 years ago. Went to several Endocrinologists who all wanted to cure me with pills. I finally ended up taking Radioactive Iodine pill that threw me into a thyroid storm. Thought I was going to die. This only happens to 1% of people treated. After 90 days and no relief, I had total thyroid removed. Day after surgery, I felt better… no fatigue or muscle weakness. Best decision I ever made. Then the Graves attacked my eyes. They "popped" outward and within weeks the double vision started. I have now had 7 IV Steroid Infusions and one radiation therapy today. Steroid treatments make me hyper but after a few days without treatment…. I crash. During Radiation treatment I felt a burning sensation… no pain and lasted only seconds. Worse part is the making the mask and then the mask being strapped down to table but I can endure anything for 15 minutes. Eyes are moving better and don’t feel so tight in the sockets. Still having double vision but grateful to still have my vision. I went online and I thought the eye surgery was done thru the outside of the eye around the temple area but seems like all of you had it done thru sinus area. Is that true of all the surgeries?

[Kimberly]

#1068984

Hello – Hopefully, you will get some responses on the incision issue from others who have had this surgery. I have a textbook on Thyroid Eye Disease that shows 9 different incisions that can be made for OD surgery — one is indeed in the sinus area, but the majority are directly around the eye area.

[snelsen]

#1068985

Hi, just to echo what Ski and Kimberly referenced, plus add my experiences. Both prednisone and radiation to the eyes, reduce inflammation and swelling, thus you are more comfortable, and that is pretty much the goal of those treatments..to get you past a rough spot. But they are not permanent treatments for tED. The disease has to run it’s course. I suggest you see a neuro-ophthalmologist for a good baseline of where you are with your vision. The question you asked about eye surgery and the sinuses-one of the muscles is close the sinuses-some eye surgeons have ENT docs do the medial part of the orbital decompression, many do not. I think you are referring to an OD or orbital decompression, as was mentioned in another post by a facilitator. The approaches (top.bottom, each side, upper sideways and lower sideways) are entirely dependent on which double vision you have, It’s a logical thing-if you cannot look up comfortably, and have double vision, the lower (inferior) muscles are moved by the eye doc cause that will allow you to look up comfortably. If the prisms are pretty much making you happy, and resolving the double vision, you may not decide to have that surgery, called strabismus surgery. I had it, it is great, and solved all my double vision problems. I still do have a little prism on my RX glasses.
For some reason, as I respond to your post, your recent post does not show, so now I am not sure I have addressed all that you asked.
*if you were on prednisone, it is critical that you do the taper as prescribed (decrease the dose a little bit each week) it is not ok to stop the drug all at once, so check that out with you doc if it applicable.
OD is usually done to save vision in the eye when there is pressure on the optic nerve, so someone should be checking your visual fields (usually a neuro/eye doc.)

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