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  • Anonymous
      Post count: 93172

      My eyes are very close to being back but I only had the left eye big
      and after 13 years – age has worked on the good eye, so I’m a little
      lop sided looking. Not quite so suprised looking!!

      Anonymous
        Post count: 93172

        My eyes are very close to being back but I only had the left eye big
        and after 13 years – age has worked on the good eye, so I’m a little
        lop sided looking. Not quite so surprised looking!!

        Anonymous
          Post count: 93172

          I’ve just really noticed that after four years my eyes are still receding back into my head! I had heard somewhere that the proptosis would be permanent, and I am amazed that after the severe problems I had, I am getting close to normal now. (how cool!)

          Anyone know anything about this long term stuff? Is my case unusual?

          Bruce

          Anonymous
            Post count: 93172

            Bruce,

            The only thing I know about eye stuff is from a friend of a friend of mine whose eyes bulged out a lot. She didn’t have any surgery, but she did have an RAI. After that, her eyes started going back into her head on their own. She seemed to think this was pretty normal. I’m not sure, though. I had completely forgotten I had even met her until I read your post tonight… I’m so forgetful.

            WF, Caroline

            Anonymous
              Post count: 93172

              I worked with someone years ago that had a malfuncioning thyroid…not graves disease but thyroid problems none the less…anyway she had bulging eyes for about 2 years then they went back to normal..saw her a year or so later and they were still normal. I hope that’s helpful. I know it wasn’t graves but it was still protosis, I think.

              Anonymous
                Post count: 93172

                I am wondering if there is something that can be done for
                moderate proptosis. Since I got my eyes measured hardly
                a month ago (21) it is becoming more obvious that something is wrong.
                (Gads, a month isn’t very long. What could I look like by my next appt.
                in June!) Is there something that can be done for the “look” or
                must I be patient. Any ideas or serious solutions would be great.
                Makup? Sunglasses (what about indoors)? Medical solution? Or am I doomed for
                what I don’t want to hear- patience! I would love to hear some of what
                you have done.

                Thanks in advance. Juls

                Anonymous
                  Post count: 93172

                  I don’t really know where to start as I’ve never been part of a bulletin board group before, so here goes…

                  Currently my left eye is protruding out 22 mm, but my right eye is not quite as bad. My eyelids no longer close completely so I have to put drops in them to help keep them from drying out.

                  Last week I was told that I could choose steroids or radiation to help with the optic nerve swelling, or possible orbital decompression surgery. I have put off the decision until the first of January.

                  My question is: has anyone tried any of the above methods for optic nerve swelling? I’m afraid of just the word radiation, and I’ve head about so many side effects involving steroids. Surgery that would involve my eyes is very freighting (I mean what if the knife slips??) I would prefer to just bury my head in the sand and wish the whole thing away, but I’m trying to be a little bit more adult about the whole thing.

                  What have any of you experienced with the three different treatments?

                  Anonymous
                    Post count: 93172

                    Hi, I’m new to this group also, so I think I might know how you’re feeling. I can’t answer any of your questions because I don’t know that much myself. I can say that I understand what you mean when you say that the word radiation itself scares you. It scares me too. Keep your chin up…you’re in my prayers and don’t bury your head in the sand….it’ll get in your mouth! Yuckie…Hang in there…i’m here for you!

                    Anonymous
                      Post count: 93172

                      Hello and welcome. This bulletin board has a wealth of information and help for those in various stages of TED. There is usually someone who has gone through what you are experiencing.

                      I have so far had everything you mention and will in the future have strabismus surgery and eyelid surgery (once we get the swollen eye muscles taken care of!).

                      By the way, it’s not the optic nerve that is swelling, but the muscles that control eye movement. If the swelling of the muscles within the eye orbit start compressing the optic nerve, you will start losing vision. Usually color vision loss is most noticeable at first and that’s why they will keep asking you to identify those number designs. If you can’t see the number embedded in the background, you’re starting to get optic nerve compression. Then it’s important to do the decompression surgery to avoid any damage to the optic nerve.

                      When I first saw my surgeons, my proptosis was at about 23 mm. and they said that this was moderate. I would probably need eyelid surgery later on to allow my eyelids to close all the way. However, my eye muscles continued to swell and I was losing vision, so I had decompression surgeries. Yours may stabilize, or continue to progress; no one really can tell you the course of the disease. Usually they will do the decompression after the swelling has stabilized, if it’s necessary because of the extreme degree of proptosis, unless the optic nerve is compromised.

                      My experience has been that if my eyes were quite inflamed and red, they would try prednisone for a month or so, so see if that would get them to a more stable place. I’ve had four or five courses of prednisone. Finally, I had radiation treatments (10 treatments, every day except weekends) in an attempt to stop the swelling for good. it’s low-dose, the front of the eye and the pituitary are blocked off, and the damage to the eye muscles is minimal in terms of the formation of scar tissue (creating inflexibility). Most people whose eye muscles had swollen as much as mine had already have quite a bit of scar tissue anyway. I finished the radiation three weeks ago, and my night vision has already improved, as has my visual acuity in general and the way my eyes feel as I taper off the prednisone (they don’t FEEL swollen or inflamed).

                      I’m sure you will be seeing your doctors before January, so that they can observe the degree of inflammation of your eyes, your visual acuity, peripheral vision, color vision, and proptosis. In that way they can determine what would be right for your particular case. It may be that you will need nothing more right now, if your eyes stay at 22 mm. If they continue to progress, then you may need more treatment.

                      Please let us know how you’re doing. There are many people on this BB who’ve had TED and have come through it just fine. It does take A LOT of patience, but if you address one problem at a time, you can do it, too.

                      Northstar

                      Anonymous
                        Post count: 93172

                        Currently my left eye is protruding out 21 mm, but my right eye is not quite as bad. My eyelids do still close completely however I have to put drops in them all the time (try the opthalmic vaseline products for nights fabulous!)

                        6 months ago I was told that I could choose steroids or radiation to help with the swelling, or possible orbital decompression surgery.

                        I did the steroids and responded however symptoms cam right back after weaned of prednisone.

                        I did the radiation treatment + prednisone (12 radiation treatments in both eyes) that was 6 weeks ago and still waiting for improvement.

                        I do have another autoimmune eye condition Superior limbic keratocomjuctivitis for which a clear conatct lense gives me much relief from my eyelid scratching my cornea

                        Believe me after visiting radiation oncology you will think yourself lucky that you only have graves disease. Not to belittle the annoyance of all of this. I’d love to look normal and wear eye make-up again but I really do count my blessings somedays, not all!

                        Good Luck, be patient, and take care

                        Anonymous
                          Post count: 93172

                          My daughter (22) has been using gel at night and if she has to….she has taped them shut. But, unless its a windy day…usually the get works wonders. Also, use the drops more often during the day if you feel the need. This may just be temporary due to climate conditions, etc. Good Luck!

                          Anonymous
                            Post count: 93172

                            I’ve been a lurker here for a long time, but now I pray I am finally coming to the end of this ordeal, and I wanted to give some of my insights and experiences so that maybe I can help others. This TED is a really horrible thing. I’ve been going through it for 3 years now, and I’m finally coming to resolution. In a nutshell:
                            1. Graves diagnosis 4 years ago
                            2. TED diagnosis 3 years ago (my eye doctor thought it was allergies) but my endocrinologist figued it out pretty quickly).
                            3. Prednisone treatments until Fall ’01
                            4. Discovered a fantastic eye surgeon who specializes in TED in Phila. in Nov ’01
                            5. Radiation Treatments in Dec ’01
                            6. Decompression surgery in June ’02
                            7. Tremendous relief, and my former “good looks” back by July ’02

                            Take from this what you want, but here is what I would do if I had to do it again:
                            *Be more aggressive in seeking a specialist who knew TED, and how to treat it. I waited too long.
                            *Prednisone was awful for me. It made me feel crappy and look bloated. I started feeling better 4 weeks after radiation, and never went back to prednisone.
                            *Radiation stabilized me for the surgery within 6 months.

                            I’m still recovering, and have some sinus problems as a result of the surgery, but that is being corrected. I would do the surgery again in a heartbeat. I was quite nervous before the surgery, but I am SOOOOO happy I had it done. Be AGGRESSIVE with this condition. Seek out the experts, and embark on a course of action that is right for you. Don’t settle for working with Docs who are not experts on this disease. And keep a positive attitude (I know, easier said then done). Like was mentioned before, until you spend 2 weeks straight hanging out in the waiting room with cancer patients in radiation oncology, you don’t realize how lucky you are. Don’t withdraw. Keep in touch with your family and friends, as they will be your support. Sometimes your eyes just hurt so much you just want to hide, but don’t! As for me, I adopted a dog, and he has been very therapeutic too. So, those are my words of advice. Hope that this helps you and others. Good Luck!

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