[DaylilySue]

#1060613

Have any of you been treated for double vision with radiation? if so, could you tell me about the procedure and if you were satisfied with the treatment? How soon did you see results? My doctor wants to send me for radiation treatments since prednisone has failed to correct my double vision.

[Kimberly]

#1183634

Hello and welcome – hopefully, others who have had this treatment will jump in here with their experiences, but here are a couple of resources that will hopefully be of interest. Please check back and let us know how you are doing!

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

Info from the International Thyroid Eye Disease Society:
http://thyroideyedisease.org/radiotherapy/

Presentation from the GDATF’s 2011 Conference in Boston:
https://www.youtube.com/watch?v=jy5y6gb2AHk

[Robboford]

#1183635

Hi DaylilySue, welcome to the forum. It is a very hard question to answer, I had radiation treatments for TED last February and although my left eye is a lot worse than my right, the radiation worked in my “better” eye and not at all in my left eye. My ophthalmologist is against the steroid treatments as he has had a high percentage of patients whose immune systems have been comprised so Radiation was the only option for me. After researching it I was not inclined to go ahead with the treatments but then really had no other option or treatments available to me. Both my ophthalmologist and endo guided me towards the treatments as there does not seem to be any info or research available for who it may work for and who it won’t. My “better” eye has not deteriorated any further since treatments although my “worse” eye has deteriorated and my antibody levels are still very high which has resulted in surgery being put on hold until the levels decrease. I am suffering from double vision and driving has been limited to daylight hours and fine weather only. Hopefully you will make a decision that you are comfortable with and it will be of some relief to you. This forum is awesome for answers and information and hopefully some of the fellow Graves’ Warriors will chime in with their experiences and thoughts.
Cheers
Debbie (A.K.A Robbford)
PS: I am from Sydney, Australia and some of our treatments and medication may be different to other countries.

[DaylilySue]

#1183636

Hi Debbie,

Thanks so much for your comment. I went to my eye dr initially due to vision loss caused by my optic nerve being compressed. I responded to steroid treatment and my vision got better but as I was stepping down on my dosage I developed double vision.

Do you wear glasses with prisms? I’m going to ask if this would help me at my next appointment. I can’t do much at this point. Thanks!

[Robboford]

#1183637

Hi DaylilySue, Prisms won’t be helpful to me according to my ophthalmologist. I currently use glasses for long distance. Have tried wearing a patch (my ophthalmologist tells me the double vision is only a problem when both eyes are open), but wearing the patch caused vertigo so not an option. Can’t count how many times I have missed a glass when I have poured a drink or how many times I have vacuumed over the same spot trying to suck up a piece of fluff, or how hard it is to navigate stairs (both up and down). Many fellow warriors will relate to this and many other problems/challenges with the double vision. Best wishes to you on your journey and please keep us up to date with your progress.
Cheers
Debbie (A.K.A. Robboford)

[snelsen]

#1183638

Sue,
Pressure on the optic nerve is serious. It happens when the eye muscle get much bigger because of TED, plus an increase in orbital fat. Please ask your doctor for more explanation about this. It makes sense that you would be better with a course of steroids, but when they are tapered, then discontinued, you get worse again.
Pressure on the optic nerve can cause optic nerve atrophy. In other words, it can permanently damage your optic nerve, resulting in blindness. So, do follow through with you docs, or perhaps the kind I will mention in the next paragraph.

Is your eye doctor familiar with TED, thyroid eye disease? Maybe seeing a neuro-opthalmologist is a very good step for you to take. Have you considered this?

Regarding myself. I had pressure on my optic nerve, with vision changes, and I had an emergency orbital decompression. I had severe double vision. It is TERRIBLE! I could only look down, not straight ahead, or to either side.
As you can see below, I had many procedures, and severe TED. I do wear prisms in both glasses now, in addition to my regular corrections.

Shirley

[DaylilySue]

#1183639

Hi Shirley,
Thanks for your response. I do go to a neuro opthamologist at OSU. He sees a great deal of graves patients. Was your muscle surgery an attempt to correct the double vision? Can you function normally with the prisms? Can you see up close and far away?

Susan

[snelsen]

#1183640

Hi Sue,
Yes, the strabismus surgery was done to correct the double vision. IT is an easy experience with an easy recovery, and the outcome was immediate. As in wonderful! You have a MAC (monitored anesthesia) which means they put to sleep with an IV. After then have moved some muscles around, you walk up, look at pictures and writing on the wall of the OR (operating room) tell them if you see one or two of objects or writing. They are large enough to correct for any vision issues unrelated to TED.

The hardest part was waiting to HAVE the procedure, for in the “hot” or beginning phase of TED, eyes are always changing, so the measurements or surgical corrections cannot be done reliably. When you get to the point where your eyes are not changing with every exam, and considered “stable” which does NOT mean just fine, it means that your eyes have not changed for a while. Then the strabismus surgery happens. Usually pediatric ophthalmologists do it, simply because they do this procedure frequently on kids (sometimes called squint surgery, somethings other things.)

The outcome was miraculous, and I felt that I had my life back. Able to safely drive again, read, and all that you already know about.

Yes, I function just fine with prisms. I have an exam from a pediatric oculo-facial surgeon every year or so..but have been stable for a long time.
I cannot tolerate having my glasses off!
shirley

[DaylilySue]

#1183641

Shirley,

Just a couple more questions. If the surgery to correct your double vision was successful why do you use prisms? Have your eyes gotten worse over time? Are the prisms very noticeable? I sure hope this active period doesn’t last too long.

Susan

[Liz1967]

#1183642

I had orbital radiation about nine months into Graves ophthalmopathy. I should have had it sooner as studies show it works better earlier. My lid retraction was so bad I could not close my left eye past the top of the iris, like not at all! I had about 4 prism diopters of esotropia ( double vision). The radiation was accompanied by oral steroids. Halfway through the twelve treatments, the lid retraction improved so I could shut my eye. The chemosis improved too. The double vision progressed a bit to seven over the next couple months but basically everything pretty much stopped progressing after that. I did end up with a cataract, a known risk, but as I am 66, this would have happened eventually anyway. I waited a year after radiation to be sure things were stable but nothing changed at all and in retrospect, I could have started rehabilitative surgeries sooner. Just had decompressions last month. Anyway, I have no way of knowing if things would have gotten worse with diplopia without the radiation. I was more comfortable and could wear prisms so I would say it helped.

[snelsen]

#1183643

Susan, the prisms are ground in my regular prescription. They are not the stick on kind, that are used temporarily. They do not show at all.
Although I don’t have double vision without my glasses, my eyes are MUCH mre comfortable with the prisms. I don’t have to strain at all. And since I need bifocals or trifocals anyway, adding the prisms is fine. Of course, the glasses RX costs a bit more that way. Worth every penny to me.
Shirley

[DaylilySue]

#1183644

I love my prisms! It’s like a miracle. I can drive, read, watch television. Life is good! My doctor gave me a script for prisms at my last visit. I go back in a week for an MRI to see if my eye disease is still active. Thanks for all your comments. I wouldn’t have known to ask for the prisms if it hadn’t been for you.

Susan

[Kimberly]

#1183645

Susan – That’s awesome news! Thanks to all who took the time to share their TED experiences!

[Author]

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