I have been reading your Q's & A's and noone has mentioned losing their eyesight. My mom was told if she didn't have the decompression surgery soon she would go blind! Has anyone had to have this surgery for this reason? We live in Arizona and have seen two Dr.s in Scottsdale.
I live in the Tampa Bay Area and am having this surgery at the end of June. My doctor told me of a patient who needed the surgery becuase her optic nerve was being compressed, and was making her blind. I am not to that stage yet. Did your mom decide to go through with it?
I am considering orbital decompression and would like to hear, from anyone who has had the surgery, how it affected them. ...the resulting placement of the eyes, any side effects, double vision etc;
I would be grateful for any information as I am...slightly freaked by the prospect of this surgery.
Thanks you so much!
I must have this surgery because I wake up at night blind in the eye on which I am sleeping. A cat scan revealed the optic nerve as well as the muscles were pulled taught from the position of my eyes.
My doctor believes this could result in permenant blindness.
...hope this helps.
Good morning Ciem - I began reading this forum since my eye surgeon told me that it was time for decompression surgery due to optic nerve compression. I finally had bilateral orbital decompression done last week, 7/29/08. I was diagnosed with Graves Disease and TED last year.
Here are some general things I can share at this point : the surgery was done by an ENT and my ocular surgeon. It took about 3 hours. I spent 1 night in the hospital. There was discomfort (pressure, aching) afterwards, but no serious pain for me. It took 4-5 days before I felt "with it" again.
If you still want to discuss the surgery, I'm in the early recovery period and would be very happy to help!
Thank you so much for your note. Apparently, if you are sitting at your computer you are doing very well. I wish you a speedy and complete recovery.
I am worried about resulting double vision from the surgery as well as not being able to go back to work within a two week period.
How is your vision now? Are your eye muscles synchronized? Are you able to work?
Again, I am very thankful for your reply and wish you all the best!
I do have double vision, but I had it before the surgery too. From what I read, that was a likely expectation. It had been well corrected by a "Fresnel" prism on one lens of my glasses. The prism isn't quite as effective post-surgery, but that doesn't worry me. I see the eye surgeon on the 18th and he said we'll know then if muscle surgery will benefit me. My near vision is a problem right now but I have some improvements in everything each day, on my 9th day post surgery today.
If you find it necessary, these temporary prisms do a great job for double vision. I didn't get the permanent, ground in type because the ophthalmologist said that frequent vision changes due to this eye disease made that impractical. Man, was he right! ps
Thanks for asking, Ciem. I feel very well. The healing process was pretty easy. The biggest complaint I have is chronically uncomfortable nasal passages and sinuses - itchy and dry wiith a constant pressure. It's annoying but very tolerable.
Unfortunately, I won't drive until after I see my ophthalmologist next week. I need a new prescription for the Fresnel prism that I wear. Though it helps some, the pre-surgery prescription doesn't completely clear my double vision. I also see the eye surgeon today to find out what he thinks I need in the coming months.
Not being able to drive is a difficulty, but a temporary one. I'm working on "patience-is-a-virtue." :-) PS
I'm having bilateral Orbital Decompression Surgery in two weeks! Trying not to be nervous about it. I trust the surgeon, and both my ophthalmologist and my retina guy recommended the surgery. I've had GED since I was 11 years old, and I'm 60 now, so it's been a LONG time since I've looked in the mirror and seen a "normal" pair of eyes. When I asked the surgeon if long term Graves' patients had ever had trouble adjusting to the cosmetic results, he said, "Now that's a question that's never come up!" But it's definitely on my mind. The other thing I'm a LITTLE BIT worried about is diplopia after the surgery, and how that might affect returning to work.
Oddly enough, when I asked about this surgery for purely cosmetic reasons about 20 years ago, the doctor said, "Oh, you don't want that....Too risky!" I'm glad that endoscopic surgery techniques have progressed enough to make it possible for me, now that it's indicated for medical reasons!
Two more weeks.....Gads. Wish me luck, and steady hands for the surgeon! (I've considered writing "Remember your Hippocratic Oath!" and taping it upside down to my forehead....and I WOULD, if I didn't know that they'd take it off before I got to the OR!)
Okay, I need to have a look at this Fresnel prism thing. It's not going to make me look like I have Coke bottle glasses, is it? The surgeon said that when I was healed up from the first surgery, if there was a double vision problem, he would refer me to another surgeon to fix it.
The temporary prism is a thin piece of pliable material. It's noticable to others but doesn't look like the bottom of a Coke bottle. That worried me a bit, too, before I got them.
I've also - finally - been referred to another surgeon who will do the eye muscle surgery to correct my double vision. I see her next month. Yea! But before and in between surgeries, the Fresnel prism has made my life easier by correcting that two-of-everything, looking-at-life-through-fun-house-mirrors view I'd have without them. :-)
Let us know how your decompression surgery goes. I can say again that my experience with it was not too difficult and the recovery was not so hard. PSpinz
I'm two days post-op, and everything went fine. I do have some diplopia, but it's not as troublesome as I anticipated, and I can manage fine by closing my left eye. The reduction in proptosis was immediate and dramatic, and I can't wait to see the final result after the swelling goes down. My surgeon did THREE of these surgeries on Monday, and apparently I turned out the best looking of the three immediately after surgery.
The anesthesiologist and nurse anesthetist were terrific, and I remember NOTHING after I was settled on the OR table, so the Versed must have hit my IV immediately, since they knew I was anxious. Discomfort has been minimal, and I can get both eyes open now. Slept well the first night in the recovery center and last night at home.
I have a suture in each lower lid, taped to my forehead, and those will come out tomorrow.
I'm glad to hear that things went well! It's also good to hear that you had very little discomfort post-op. My experience was the same. How was the bruising?
You're right about the Versed...an amazing drug! Incredible how quickly it worked - you're here and aware and then totally gone in an instant. I hope you've healed beautifully. PSpinz
Well, tonight I'm not so sure. My eyes won't stop tearing and "gunking up", the left eye is still aching, and I can't see all that well through the film of tears. The double vision is still around, but somewhat improved from last week. Not too much bruising. Almost none, in fact. I had two patches of reddish bruise on my cheekbones, but that's dissipated. Right now, the ache and the tears are the main problems. I'm probably going to call the surgeon tomorrow, just to get some reassurance that this is normal. I also have a headache that came on after I stopped taking Lortab.
How long was it before your eyes felt like YOUR eyes and you didn't feel like you had to baby them? My friends at work wanted to bring up a pizza yesterday, and I asked them not to because I didn't feel well enough to deal with socializing.
My other question is about healing. How long before I know what this is really going to look like? I can't see much difference right now, and I'm kind of depressed about it.
I realize that my mood has changed dramatically since I was just post-op. It's still kind of scary to have had all this work done. I feel like my eyes are fragile now.
Today things are better. I drove into town for groceries without too much difficulty, and tonight the double vision is almost resolved. Coworkers delivered a pizza tonight after work! The lawn guy came down to mow and said, "Wow!" when he saw my eyes. (Gotta love a wow from the lawn guy!) The constant tearing has slowed down a bit, and I can actually see clearly again.
Hi I would like to know if there is an alternate option to orbital decompression surgery eg. medication. I have lived with T.E.D for many years since, I was 13 I am now 35. I am always self consious of my appearace and would like to improve the way I look and feel about myself, also when I sleep on my side I cannot see very well out of the eye I was lying on. I am really nervous about surgery it seems very invasive and due to the fact that I have lost the central vision in my right eye due to a car accident a few years ago, so without my left eye I would by almost helpless. I live in South Africa so maybe there is some new drug or technology that I have not hear of, any input would be greatly appreciated.
Greetings from a sunny S.A
There's nothing in particular that I've heard of, but then, only a few years ago, my doctors were dead set against Orbital Decompression Surgery as "too risky". Now they're doing it on almost an outpatient basis.
I certainly understand both your self-consciousness about your appearance AND your anxiety about the surgery. I've had T.E.D. since I was 11, and as you know, it's no picnic growing up with that! Even if nobody says anything, you become very sensitive to people staring. They have no idea how aware we are of the way they look at us. It hurts!
The thing that convinced me once and for all that I could handle surgery was that I knew my Graves' Eye Disease could lead to a loss of vision, either because of keratitis or because of optic nerve compression. You're 35 now, but one day you'll be 60, and although your main concern right now might be cosmetic, down the road you may want to consider surgery for medical reasons. I was afraid of the surgery, myself, and wouldn't have submitted to it if I had not had a very good surgeon with a proven track record. I'll bet there are some pretty darn good surgeons in Johannesburg who could allay your fears. Yes, the surgery is invasive, but it's not all that uncomfortable to recover from. I have one "bad" eye, too. But honestly, I'm so happy I had this surgery! Don't rule it out as a possibility for yourself. Talk to your ophthalmologist about it, ask for a surgical consult. You don't have to sign on the dotted line, and you may find that it's not as scary as it looks. (It really isn't!) I wish there were some other way to address the problem, but I certainly haven't heard of any medication that affects proptosis.
I'm now two weeks post-op, feeling 100% like myself again. It was nice to return to work today and have coworkers say, "Oh, they look GREAT!!!" I still look like myself, but I don't attract unwanted attention in the checkout line at the grocery store.
Hi, I would firstly like to thank you for your words of encouragement, and wish you a continued recovery after your surgery, you are brave!
It is good to know there is someone I can relate to about my feelings on this subject, where I live I do not know of another person with T.E.D although I'm sure there are many.
I will make an appointment with my opthalmologist and discuss if further with him, I read a bit on the net about orbital radiation and sham therapy so maybe these are alternate options.
I will let you know of the progress.
T.E.D. is common enough that there may be a support group around. There are certainly lots of us out there. As a kid, I used to see people with the same problem on a city bus or on the train, and I'd think, "Wow....do I look THAT bad?" It was hard to decide just how other people perceived me, and I never trusted the friends and family who would say, "Oh, your eyes don't look that prominent!" It takes only a few early experiences with teasing or even bold staring to convince us that we appear pretty freakish to others. That's especially wounding to an adolescent!
I hope you find a solution for yourself and your own situation. Hang in there!
It's so good to hear that you had improvement after your 9/30 post. (And that "Wow!" from the lawn guy really had to have given you encouragement!) I am looking forward to eye muscle surgery to help with my double vision. It never cleared up. I am happy that you had a better experience with that!
My upper cheekbones and sinuses still don't feel like "mine." It's not serious by any means, just an annoyance. The numbness hasn't completely gone away since 7/29. My nasal passages have been dry and itchy since then too. But that's just another annoyance.
I am so glad that I had the decompression surgery. It was not a difficult thing to go through and most importantly, my optic nerves are no longer being squished back there. :-)
Hope your eye muscle surgery clears up the double vision for good. I still have a little "tightness" when I look hard left or hard right, but nothing serious. I saw the surgeon again today, and he also said, "Wow!"....so he's happy. I did see the before pictures, and we took after pictures today. I'm currently at 24 mm of proptosis bilaterally, and he's happy with that, too. He said that between now and my next appointment in December, I may have a bit more reduction in proptosis, which would put my eyes in the normal range. In the meantime, I have to massage my lower lid to encourage the tear ducts to empty. They're still compressed by a little swelling around them. The left eye, where he did a little more work, is still a little red, especially when I'm tired. Sounds like you had more small complications. I was lucky and had no difficulty with my sinuses. Yep, I think our optic nerves are thanking us for this decision!
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