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Dear Nina,
I guess you and I are in the same boat as far as our TED is concerned. Like yourself my eyes are very blurry and I can’t see much at all. I already had one round of radiation and the only thing that happened to me is the fact I got extremely tired after the treatment. My doctor has also mention the surgery, but didn’t say anything about it on my last visit. I’ve been on prednisone for over a year now which has given my cushion’s syndrome. I have decided to seek another doctor for a second opinion because to me, my doctor doesn’t truly give a crap about how scared I am or how I’m feeling. He’s always in a rush. I do hope you begin to feel better soon and get some good results from which ever option you choose. Having TED is no fun, but together we can all help each other. Please take care and I’ll keep you in my prayers.
Diane
Dear Grneyedlady and other fellow TED patients,
It made me sad to learn that you’re feeling so poorly after your surgery. I have moderate to severe TED and am faced now with the choice of receiving orbital radiation to reduce my symptoms or decompression surgery. I’ll need to make a decision, I believe, in the next few weeks. I wss very hopeful that the massive IV doses of steroids I received in mid May and the oral Prednisone I’m now taking would reduce my symptoms for a longer time period thatn they did. I know I can’t stay on steroids forever, but I’m very frightened re both options. I have appointments with both the radiologist and the eye surgeon in the next few weeks — and, alos, I plan to get a second opinion from another Endo MD. It would be most helpful to me if I could receive some feedback as to what course of treatment you chose and what complications — ifany pp that you experienced. This seems like a nightmare to me, but I know it’s one that many have experienced and I do feel things will get better eventually. Any advice you could give me would be most appreciated. Thanks much. NinaPlease excuse any spelling errors but my eyes are very blurry today.
There are two schools of thought on orbital radiation prior to orbital decompression.
One school teaches decompression first followed by orbital radiation second. The reason being that the orbital radiation makes the muscles and fatty tissue shrink in size. Because they have shrunk in size, they are less mobile and decompression of the radiated eyes does not see as great a benefit as decompression first.
The second school of thought is orbital radiation first in hopes not decreasing the further need of orbital decompression. So they say orbital radiation first.
A new thought has been circulated the past few years at the thyroid and thyroid eye national and international meetings. That being, that orbital radiation needs to be done with steroids. Studies how that often steroid use alone provides the same benefit as the orbital radiation and radiation may not be the case in many instances. Orbital radiation works great for a quick means to save eyesight if the optic nerve is involved.
I had orbital decompression first followed two years later by orbital decompression. I have no complaints about the way it was done for me. Fact is when both groups (orbital radiation first, or decompression first) each group was happy with the outcome of their treatment.
Mostly it boils down to personal preference and what you the patient are comfortable with. In other words there does not seem to be a major deciding factor for Pro or Con.
Jake George
On-line FacilitatorDear Jake,
Thanks much for your message re the orbital radiation and decompression surgery. I really appreciated your feedback and learning of your experience. Could I be so bold as to inquire as to the number of radiation treatments you had to receive and if you noticed any side effects from this. Also, did you have to take an oral steroid preparation while receiving the radiation treatments? I’ll be meeting with both the radiologist and the eye surgeon in the next few weeks, and will need to make a decision by late July. Needless to say, I’m very anxious, etc., but knowing that I’m not alone has been very comforting to me. I can’t thank you and the other on line facilitators enough for your responses, as well as to the others who share this disease with me. I would be interested in knowing more about these special people and wonder how I could do a brief biographical summary of my status. I noticed that one was posted by gryneyedlady and would like to respond to this. Thanks again for your help. Happy July 4th to all of you. NinaI took steroids with the decompression. It works much better with steroids that without.
I had ten treatments on each eye. I received 100 RADs per eye for a total of 2000 RADs total.
Side effects were dry eyes and I was tired after each treatment and sleep and rest was my friend.
It worked for me very well. Ask your doctors any questions you have. You will be fine. Let us know what you decide and keep us posted.
Jake
Dear Jake,
Thanks for your response re my questions re the orbital radiation and decompression surgery. I’m somewhat confused as to which treatment you had first, as you inadvertenly stated decompression surgery both times. Did you need to take oral steroids with both treatments or just with the radiation? I’ll be meeting with the radiologist later this week. I’m very fearful of being under a general anesthetic for 5 to 6 hours because of a mild to moderate lung condition which I have and my age of 66 (even though my general health is quite good). I wonder ifthe decompression surgery could ever be performed under a local anesthetic. Thanks again for your responses.
NinaI Nina,
I see your concern. I had decompression first. Followed up almost two years later with the decompression. I only took steroids for the Orbital Radiation.
You cannot do an orbital decompression with a local. You must be under a general for that surgery. I can see why your doctors are looking at orbital radiation first.
My orbital radiation was a success and I have not had a problem with vision loss since then and it has now been over six years.
Make sure to ask to start the steroids before the orbital radiation starts.
You will be fine and I am glad you found us to ask questions. You are never alone now and that is simply amazing when you think about it. We are only a click away.
Jake
Dear Jake and fellow TED patients,
Thanks for your recent message re orbital radiation and decompression surgery. I started my radiation treatments 3 days ago and have 7 more to go. I’m very hopeful that the tentatively scheduled decompression surgery for 7/19/2007 will be postponed so the results of the radiation can be better evaluated. The eye and ENT surgeons seem determined that I’ll need the surgery, but I feel I should have the right to postpone it if the radiation MD feels this would be adviseable. Could I ask how high a dose of steroids you took while you were receiving the radiation? My last radiation dose is scheduled for 7/23/2007. So far the only side effect I’ve felt from the radiation have been fatigue and increased dryness of the eyes. Thanks much in advance for your response.
Please accept my apology for changing the current subject to ask these questions. Nina -
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