[runbarb]

#1058694

All: I was diagnosed Graves Disease in January 2011, had radioactive iodine treatment on Feb. 1. Diagnosed with ocular Graves in March. Since then I have had swollen eyes, headaches and in the past few months my right eye has moved such that the eyeball is pointing towards my nose and I have double vision andmust wear a patch at all times. Today I went for a checkup with my opthamologist and he did tests. I also told him of what I felt were worsening vision, horrible headaches and itching in my eyes. He told me to immediately get a CT scan and he just called with news that the scan today shows much worse swelling in my muscles than the CT scan I had in March. He is sending report to another eye specialist and has alluded that I may be facing orbital decompression surgery. Wow, all this in one day. Can someone help me with explaining this surgery in layman’s terms, the time frame for recovery and the prospects for what is ahead after this surgery? I hope that another approach may be recommended at this time, perhaps trying steroids. I think doc was alarmed as I had just been to see him 5 or 6 weeks ago and my peripheral vision and color vision have both gotten worse pretty significantly. I am scared and don’t know what to expect. I am to take CT scan disc to doc tomorrow for specialist to view the two scans and see how much worse things are. I am worried about being able to work, drive and read. If I don’t do the surgery is blindness my future? Imagine I need to ask all of these questiosn of the docotrs but thought you all may have some experience and suggestions. Thank you.

[snelsen]

#1169431

Hi Barb,
If you put:
my name, orbital decompression,pre-op and post-op in the search engine you can read a lot about orbital decompression. As I recall, I wrote day by day for a while.
To briefly answer your last question, yes, if the pressure is not relieved on the optic nerve, permanent blindness is the result. You do not need to be scared about driving, working or driving-IF you have the surgical intervention. If you don’t, there is valid reason to be concerned about all of the above.
I am thinking they might put you on steroids to relieve the pressure (and it will) temporarily, to prevent permanent damage to the optic nerve, and that is a good thing. That was also my experience.
I had the same symptoms you did. YOu really don’t have a choice of doing anything else.
Briefly (and there are so many good references on this site about this, too, plus your docs.) I understand how much it means to hear from someone who’s "been there.
Here are my suggestions, and I might be forgetting some of them, so check the search engine.
Purpose of OD-to make more room in the orblt, relieving pressure on the optic nerve. Also many people have it done to make more room for the eye, when it is really bulging out. They do this by trimming the "walls" of the orbit. Orbit is the "hole," or the cavity that contains the eyball, muscles and nerves of the eye.
Preop-set up your bed so you can be in at least a 45 degrees head up, more is better. Try to sleep that way for several days. It greatly reduces any swelling and bruising. I put pillows and blankets UNDER the mattress, so the entire head of the bed was elevated.
The surgery-it did not hurt at all. I think some people were more uncomfortable than I was, but probably because they did not continue to sleep with their head elevated. It is uncomfortable when there is a lot of swelling.
Day of surgery- It really is a relatively short procedure, about 60-90 minutes. You will probably have a general. You won’t remember a thing. I was hungry after the surgery, and stopped for a hamburger on the way back to the house (a little bit of a dumb thing to do, only because I probably should have gone straight home, gone to bed with a cold pack on my eye. I emailed this site, so you can look for that post.*******cold packs are wonderful. Put about six washclothes in a ziplock bag with ice. You dont want a lot of pressure. or ice itself on your eye, but the cold washclothes feel marvelous.
Day 1-I walked around the house, walked around the block, spent the rest of the day in a chair or in bed. Had some bruising.
Ate anything I wanted.
Day 2 forward-just kept getting better and better. I could tell by then how much I WASN’T seeing. The leaves on the trees were more distinct.

If you work, I think it is a good idea to take 2 weeks off, minimum. The eye should not have extreme pressure, try to sneeze with your mouth open if you need to. The more you have your head up and use cold packs, the less swelling you will have.
The less you do of those two things, the more swelling (and discomfort and bruising) you will have.

Before the surgery, I had a HUGE loss of peripheral vision that I was not even aware of, until the visual fields tests showed it.
I was seeing colors more muted, but was not very aware of that, either. However, my eye was getting more and more uncomfortable and a little painful. After the surgery my visual fields were full, colors were bright and i could see the leaves on the trees very distinctly.
Hope this is a little bit helpful to you. They are right to stress the seriousness of this. You’ll need to move ahead and plan the surgery in a reasonable period of time, say 3 weeks or so.
I did have someone with me for 5 days. Was wonderful, having the washclothes ready, good food, and you really need to be careful about bending over and putting pressure on your face.
Shirley

[runbarb]

#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

[snelsen]

#1169433

Hi Barb, you are most welcome. I know how much it meant to me to hear from to others about all my surgeries. And I have two more coming up, as I mentioned.
Well, if you can get on the schedule, get it done in the early part of September, you might be able to take your vacation if it doesn’t involve lots of strenuous exercise. Be sure to ask all these questions. I did drag my feet about having this surgery, cause it was December. Of course, I did not want to do it, and it took a few days for me to believe that Ireally needed this surgery.
Get your questions ready. Ask them them about the degree of urgency to do the procedure. Ask them about your vacation. Ask them about flying if you will fly after the surgery, as I recall there was a waiting period. Keep writing, I am happy to cheer you along with this. I dreaded it and i was scared. All the fears were unfounded, especially when I really believed I had a serious problem.
Shirley

[runbarb]

#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

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