[runbarb]

in reply to: Thyroid Eye Disease #1173382

I am having strabismus surgery tomorrow in both eyes. I am excited but very nervous. How many of you have had this and was the first surgery successful? I am told that I have both horizontal and vertical double vision so two surgeries may be needed. Wondered if others had experienced this.

[runbarb]

in reply to: Thyroid Eye Disease #1173378

Thanks again for the posts and encouragment. SNelsen: I have not had OD but had radiation in September 2011 and the glaucoma surgery was to put a hole with a laser in the upper part of my eye to relieve the pressure. He did both eyes. My doctor had mentioned prisms but said that I would be changing them so often that it would get expensive. Now my eye is so severely rotated that I think it would not help. Actually both eyes have rotated but the right eye is the worse. Surgeon says I will need strabismus on both eyes which I assume they do at the same time?

Kimberly: Intriguing that there may be, according to your SF presenter, a link between the swings in synthroid dosage and my eye problems. I have been up and down the dosages in the last year and I never seem to be stable in that. I see endo in September for annual visit and plan to ask him then. Will have another blood test in about 4 weeks. Am fatigued constantly and having to adjust to that as I was a marathon runner and now I can barely go 6 miles. It is depressing. Yes, I still run with the patch on but do so very carefully!

[runbarb]

in reply to: Thyroid Eye Disease #1173374

Thank you to all of you who answered my post. It is much appreciated. My experience has been that my eye doctor did measurments every time I saw him usually peripheral vision tests and pressure. I had to have surgery in both eyes for the pressure build-up, glaucoma. He felt that the tests he did were stable and sent me to the surgeon in June. That doctor did other tests with prisms. I was not sure what he was doing as I thought it would be the same tests I had been having with the other doctor. The surgeon says I am still unstable so I assume the tests he did showed this and the other tests by the other doctor are worthless? I do understand from the surgeon that you must be stable for 4-6 mos. before it is recommended that you have surgery as otherwise you may rotate back and have to have the surgery again. I have such bad double vision that I have to wear a patch all the time or cannot function, I cannot walk a straight line for even 10 feet. My eyes are very dry and I use Lotemax and Refresh constantly. I get so depressed about the double vision and my uncovered eye gets so tired as it is doing all the work. I suppose I am lucky as I still can drive, go to work and read. I was concerned that the inability to get my synthroid level correct was causing the eye problems and the waiting for teh strabismus surgery. Sounds like that is not the case. I just need to be patient but it seems to take so long for this to get to the cold phase. It has been 15 mos. now. Am I near the end?

[runbarb]

in reply to: radiation treatment to eyes #1169383

Kimberly: I still wear the eye patch and now am experiencing swelling again around my eyes. I am on the downside of the dose of Prednisone so it appears that as I take less of a dose the swelling is coming back. Very depressing. I go to the eye doctor on December 1 so will see what he says. I assume I will have CT scan again and other in office tests. I think my vision is worsening too.

Are you familar with Wills Eye Hospital in Philadelphia? If so, I would a recommendation as to a doctor to see. I may fly there as it is supposed to be the best eye hospital in the world.

Had a crying session on Sunday night but am more stable now. This disease has taken its toll on me.

barbara

[runbarb]

in reply to: radiation treatment to eyes #1169381

Sorry it has been so long since I posted on this website, a trip and work have kept me busy.

I am sorry to say that the radiation did not work to move my eye back into its proper place. I remain wearing my patch and hate it adn still have such horrible double vision that I cannot even walk with both eyes open. Radiation oncologist was upset that this did not work for me but my eye surgeon who I have been consulting says it did work as it saved by sight. Test resutls for my peripheral vision and color vision are improved from before the radiation treatment. So maybe there is some progress. I am still on prednisone and will be for another 2/1/2 weeks I believe. I have another appt. with my regular eye doctor on Dec. 1 and expect that he will order another CT scan and do the color and peripheral vision tests again.

With the change to Standard TIme this past weekend it has gotten harder to drive home after work. But, I manage this and to work and to run in the dark. This darn disease will NOT defeat me. I get down sometimes and feel sorry for myself especially when strangers ask me about why I wear a patch or I cannot see something clearly. It is frustrating. The patch gives me a headache after wearing it all day as the strap is elastic and it binds. Does anyone haev any other suggetions? As stated above I must keep my right eye covered. If I have both eyes open I cannot function nor can I do so with right eye open and left eye covered except to read.

Has anyone on this site consulted with doctors at Wills Eye Hospital in Philadelphia?

Courage to all. Runbarb

[runbarb]

in reply to: radiation treatment to eyes #1169379

I am now through all 12 radiation treatments. No improvement yet. They say it will be several weeks and any improvement will be slow. Any one else have experience in how long it takes to notice any effects? Off on a trip for 2 weeks tomorrow and am so hoping I will be able to take off the patch and throw it away.

[runbarb]

in reply to: radiation treatment to eyes #1169378

I am now through 9 of the 12 radiation treatments and counting down to the end. All has been painless and other than delays at the hospital when others receiving radiation are late etc. all has gone quite smoothly. I meet with the radiation onocologist every Wednesday. This past Wednesday he said he thought my right eye, which is the one so horribly pointing inward to my nose, has a little more ability to move to the right than it did the previous week. I was thrilled as I needed a boost. Other than that the swelling around my eyes seems to be down some too which is another positive. I will finish this week and see doctor after my final treatment. I am still taking steroids and have maybe another week to go on them. I remain hopeful. I will see my eye doctor tomorrow and am anxious for his report as well. I am tired of the patch and just hope it is soon a fashion acccessory that I can rid myself of. I am leaving for a trip soon and would love to be able to be patch free. I see endocrinoloigst this coming week too-the one who told me that I didn’t have Graves in my eyes-that it is too rare and it was likely allergies. I plan on eliciting an apology from him for his mis-diagnosis and his cavelier attitude about it when last I saw him. He was a jerk and laughed at my swollen eyes. i have been bitter ever since and want him to see that it has been a very real problem. Do you find that most doctors really are baffled by this disease? Anyway, counting down to the end of the radiation and remaining hopeful that I will actually see some improvement over the next few weeks.

[runbarb]

in reply to: radiation treatment to eyes #1169375

Scarlett: 3 down 9 to go! Treatments are going well. Today took less time than other two. Have you been on steroids as well? Doc put me on another round of them yesterday saying he was being agressive with this. He hopes, I think, that the combination of the steroids and the radiation will help. I am still hopeful. Radiation is painless and the only downside is the time factor as it takes a few times for the technicians to get the angles correct-no problem there I want them to get it right too. Thanks for the encouragement. Working and doing all this is a struggle-my eyes are shot by the end of the day. Like now. Bye. will want info on the surgery you had if I get to that point.

[runbarb]

in reply to: radiation treatment to eyes #1169373

First treatment done and not too bad but for the fact that it occurred 30 minutes late and I was nervous. Lots of re-postioning, checking, Xrays then the treatment. Glad it is over with. 1 down 11 to go. I remain hopeful.

[runbarb]

in reply to: radiation treatment to eyes #1169372

Scarlett:
Thank you so much for the reply to my earlier post as it was just what I was looking for. Sounds like our paths were similar with this disease. I was diagnosed in January 2011 with Graves, had the radioactive iodine treatment on February 1 then in March started to notice eye problems. My endo did not think it was Graves (said that would be rare) and thought it was allergies as I live in an area that is bad for them. I started to get blisters in my eyes in March and had a CT scan in early April which confirmed I had Graves in the eyes. I had blisters and swelling then about 2 months ago my right eye started to turn inward. I have such bad double vision that I have to wear an eye patch to be able to see. I still drive, work and exercise but it is getting more and more difficult. I went this past week for eye doc checkup which showed loss of peripheral vision in my right eye as well as loss of color contrast. Another CT scan showed that the condition had worsened. Hence I was sent to a surgeon then on to the radiation onocologist. I was fitted for the mask that afternoon so am ready to go on Tuesday best I can tell. I was really hopeful that this would be a cure for this double vision. The onocologist indicated that the results were 50/50% but he said he thought it might cure my double vision as the muscles closest to my nose would not be as constricted and thus move the eyeball back. Seems like that did not happen with you. My left eye is not pointing towards my nose yet so maybe at least this treatment will stop that from occurring. I would rather try this than have the surgery. I assume your surgery was the orbital decompression surgery? I am so fearful of that. I remain hopeful that between the steroids which have had no effect as yet and this radiation I will see some change. I have to do 12 treatments. Thank you again for your insight. I have gained so much from this site and the folks supporting each other. Scarlett, I too was mindful that I go to an infusion center and there are patients there that make this disease look like a mere cold. I try to keep in my mind that I can still see even if it is not as well as I used to. Barbara

[runbarb]

in reply to: CT scan shows worsening condiotn-surgery may be in future #1169434

After a busy two days my doctors have recommended that I do a steroid dose pack and radiation. I am to begin on Tuesday and will have twelve treatments. CT scan shows inflammed muscles close to my nose though outside muscles look normal. This is causing the eyes to rotate and causing this horrid double vision. It is hard for me to be on the computer for long and I don’t see misspellings well. I apologize. I will search for any of you all who have had the radiation treatment and gather info on your experience. I feel more hopeful than I did earlier this week as I was fearful of the surgery. I realize that may be down the road for me as doctor stated that radiation is effective 50% of the time. He is hopeful that it will relieve the pressure and move my eyes back to center. My understanding is that if this does not provide relief that the orbital decompression surgery is next step. I do feel more hopeful now than I did on Thursday and feel very comfortable with the 3 eye doctors I have seen to get this far. All the stars lined up on Thursday and Friday for me to get from my doctor to eye surgeon to radiation onocologist. Given how unusual that is to happen so quickly I think it is the right thing to do and will proceed with the radiation. I asked and was told that I can still take my trip so that also was glorious news. If you have had experience with radiation treatment I would appreciate hearing from you and will search for that on this site. barbara

[runbarb]

in reply to: CT scan shows worsening condiotn-surgery may be in future #1169432

Shirley: How nice of you to respond so quickly. I thank you ever so much. I will review the previous posts as you suggested. Had done so and didn’t see anything but will try again with your words noted. I guess my wonder is that my eyes are not bulging so I didn’t think I would have to have surgery. Guess I was wrong. Will know more tomorrow when I hopefully see another doctor. I am very frightened by the prospect of this surgery as it sounds so horrid but your experience seems to be that it helped so much that it was worth it. I am worried about work and taking that much time off and also had a marvelous trip planned for later this month which may now not happen but I guess I can’t worry about that and have to make this surgery a priority now. I will see what tomorrow brings. Thanks again. Barb

[runbarb]

in reply to: Will eye problems (diplopia) continue to escalate? #1169516

Kimberley: Thank you for your answer. Sounds like a very depressing time ahead for me. If double vision lasts 2-3 years I am just at the beginning. My doc doesn’t seem to have any recommendations for me. He has mentioned prisms but says that with my eyes changing so much that until I am more stabilized it would be fruitless. I am getting some as I am about to take a trip and want to be able to see. He has alerted me that the prisims will be the stick on type and will cost about $100. They won’t be useful for long as eyes are changing.
What happens if both of my eyes turn inward? Right now just one is but I fear other is moving as well. I am petrified. Is the pain I am experiencing the muscles becoming more inflamed and thus worsening my ability to see? Other than prisims I have no other suggestions from the opthamologist. He says steroids are a possibility but with side effects is not giving to me now. Radiation into eyes is also possibility but he htinks I am not bad enough. I don’t know where the line is to be bad enough. But,I think I am pretty bad. Surgery has been discussed also but is way down the line as things must stabilize. But I believe two surgeries are recommended, one to pull the eye back into place that has turned inward then one to correct bags, retracted eyelids and puffiness. Has anyone had the surgery to pull the eye back? My doc said he would send me to a pediatic opthamolgist for this surgery as they are more used to performing this surgery since kids are more likely to have crossed eyes.

I guess the other aspect of all of this is that I am so depressed about my condition. I have always been super healthy and am very active. I am a marathon runner and am athletic. This disease has totally changed my lifestyle and i am trying to cope with that. I still run but very slowly and carefully as I am scared of falling. I do not run with a group any longer as I am unstable with a patch on and weave and don’t want to ruin someone else’s run. I have terrible down days when I sob and am so depressed. My spouse has been wonderful and I try not to get down as it effects him too. But, it is a struggle every day. I know no one else around me who has this disease so feel isolated. WHile my brother had this as well he did not have such a severe case and was treated with prednisone and got over it rapidly. So he can’t offer any advice on how to cope as he got well in just a short time.

I am worried about being able to drive once daylight saving time ends. Now I can see fine to drive in the light but am concerned about driving home from work at night in the winter. Suggestions?

How do you cope with this disease? I am struggling.

[runbarb]

in reply to: Will eye problems (diplopia) continue to escalate? #1169514

I am new to this forum and have had a lot of trouble trying to post a message. I have ocular graves disease and am really suffering with double vision. I have a patch over one eye but the other eye is now cloudy. I also have pain in both eyes. I became aware of the Graves eye problems in March 2011 with redness, blisters in my eyes and pain. Now I have a right eye that points inwards so I have double vision. Does anyone have suggetions for how to soothe the "good" eye so that it keeps seeing? I wear a patch but it is awkward and everyone stares at me. Any other things to suggest? How long will double vision be a part of my life? I am already sick of it and am very depressed because of the worsening condition. Thanks.

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