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I am new to posting on this sight, but have been member for awhile. I got the Graves diagnosis in 2005 and had my radiation on my thyroid done soon after, it had immediately affected my eyes. I have had corneal abrasion procedure on my right eye as a part would pull off when I would open my eye in the morning.
For a while I thought I was doing better, then in september of last year my eyes started in again, bloodshot, swelling, irritated, burning, especially my
right eye. My Opthamologist started my on steroid eye drops, to no avail, and then oral steroids, 80 mg and down for two months.. nothing. Then he suggested I see a plastic surgeon, which I did and he wants to do surgery on both my eyes. I am afraid to do this as it may make me look a little better cosmetically but unsure to go through with it if it is not going to give me any eye relief. I have been reading about alot of others that have had surgery done and want to cover this website in detail before I make any decisions. I feel there is so much I do not know, have exhausted doctors, and really feel at a loss.
I feel like now my eyes are running my life instead of me pushing them. I get so frustrated in the evening I just go to bed. I am feeling depressed and overwhelmed with all this at the moment and need to talk to some people that can relate that I could maybe get some good feedback from. Thank you
kathyGDear Kathy,
Did you see a plastic surgeon, or a reconstructive plastic surgeon? The difference is VAST! The various surgeries that are done for our eyes are NOT cosmetic, but are done to protect our vision. While the results may have us looking better (and most anything is better than looking like a bug eyed from that is hung over), that is not the reason for the surgery.
Be sure to ask questions to that effect. Ask if the doctor is a reconstructive surgeon. He/she will know and understand the difference.
I know of one woman who went to a plastic surgeon, neither of them iknowing that she had Graves’. Some of the tissue of her upper eyelids was removed for cosmetic purposes. Months later, when her eye disease became prominent, there was not enough tissue left to do the reconstructive surgery she needed. There was some solution, but it was extensive, painful, and NOT cosmetic at all.
Dear Kathy,
I can definitely relate, as I’ve had severe corneal erosions that have resulted in an inability to spend time outdoors unless I’m wearing goggles of some kind, and I can’t have any moving air on my eyes, such as fans, air conditioning, etc. I’ve had 8 surgeries on my eyes so far, including orbital decompression and lid retraction surgery.
As Nancy told you, it’s vital that you see a ophthalmic plastic and reconstructive surgeon who does orbital and eyelid surgery on Graves’ Disease patients as a major part of his or her practice. There are too many factors in making any changes in the eyelids that can make the problems worse instead of better, even in the hands of the most experienced surgeons (which is part of the reason I’m still having problems).
There is no guarantee even with surgery that your problems will be entirely eliminated, but surgery may be the best chance of helping you. In the meantime, I’ve found something that was recommended for me by an ophthalmologist who specializes in treating dry eyes from Mayo Clinic. It’s called TranquilEyes, and it’s a goggle-type sleep mask with washable eye pads that keep your eyes closed at night. It’s very comfortable to sleep with and easy to care for; and SO much easier than taping the eyes closed at night.
If anyone is interested, just Google it. I purchased mine from the Dry Eye Zone. You can try other places, of course.
There is also a specific kind of eye-wear that is kind of like a motorcycle goggle, made for dry eye patients. Prescriptions lenses can be put into these; and washable, vented pads help keep the air out. They allow me to go outdoors for a short while if there’s a slight breeze, but not if there’s a strong wind. If anyone is interested in the brand name and where to purchase these, send me an email.
I definitely think it was worth it to me to have surgical correction, but caution you to get opinions on your case from the best doctors possible, even if you have to travel to a city with a teaching hospital. We were fortunate to have family in Los Angeles so that I could stay with them during my reconstructions. If you have friends or family anywhere, that might affect your choice of where to start looking for doctors. There was a doctor in my area who could have done the surgery, but I felt more comfortable in the hands of doctors who had much more experience.
http://www.asoprs.org/custom/directory/ … howTitle=1 This link takes you to the web page of the American Society of Ophthalmic Plastic and Reconstructive Surgeons, where you can do a search for a physician in any state. Members of this society have all trained to do the specialized surgeries on Graves’ Disease patients.
Kathy, I’d like to add that I’d be happy to talk about any of the surgeries specifically and what they’re like, or any other concerns you might have. I also forgot to mention that with upper eyelid retraction there’s a chance it will improve in time without treatment, and that if you have the blepharotomy you will end up with droopy eyelids down the road and need to have them raised. This happened to me. I’m telling you this because it’s apparently common enough that you might want to discuss this with your doctor and make it a factor in whether to have the surgery, or wait to see if it improves on its own. (For me, I was glad to have the surgery, and correcting the droopy lids isn’t a big deal.)
This plastic surgeon does eyelid and facial surgery, and said he was doing a "Graves consultation" on me, I will see if he is reconstructive or not. I am seeing my regular opthamalogist Feb 16th…my right eye just won’t settle down and I am so tired of the pain. I will ask questions of him and see how he feels about the surgery. I don’t know that I feel it really even needs to be done at this time….not even so sure it would improve my looks much. I will look at the web for the other things you suggested. I feel like my doctor no longer knows what to do with me, and maybe so. After the steroid eye drops and oral steroids, he wanted to send me to the plastic surgery. Guess I need to keep researching as alot is up to the patient in todays time I think. There is no support group here where I live, I think that would help too. If I could just get my right eye to settle in a little I would feel alot better. I appreciate your help with this and if there are others out there with suggestions I would appreciate some input. kathyg
Dianne: I would like to discuss surgeries with you ……..do you want my email address or what? thanks, Kathyg
Kathy – I, too, was diagnosed in 2005, and had RAI shortly after the Dx, in December of 2005.
What is not clear to me in your story, were your eyes acting up after your RAI, or just corneal abrasion problem? (I’m not sure if one gets corneal abrasion BECAUSE of protrusion).
It seems like your eyes has just recently started acting up? If yes, please DO NOT consider ANY surgery until your eyes burn out, or settle.
My eyes were acting up (sandy, gritty, watery, protruding) for a whole year after RAI. Then they settled. I still have the protrusion, but I don’t feel anything.
Your eyes burn out in their time, over 6-18 months. Only then you can think of reconstructive surgery. Surgeries done in the "hot" phase are the best way to further surgeries, since the eyes are still moving, and they don’t respond kindly to any surgical wound.
However, if your eysight is compromized or your optical nerve is squished, then something more urgent is needed.
But only by orbital deconstruction specialist, or oculoplastic doctor, they have different names. Not a plastic surgeon!
Elf: My eyes were bad before they ever diagnosed me with Graves, it was a mess. My eyes seem like they have never settled. After the RAI they were bad too. My corneal abrasion procedure was just done less than a year ago, only because like I mentioned, when I opened my right eye in the morning it would take a little piece off, a few days of eye drops would heal that. And it only did it a couple of times a month, but it doesn’t do it at all anymore, was alot of pain for about four days but worth it. I use restasis drops morning and night and just regular moisturizing drops during the day. My eyes have not moved out any further for quite a while, I always have them check that. My right eye is protruding more but nothing really bad. So I do not think the surgery would help that.
They said they would take the fatty pockets out from either side of the nose, turn the corners of my eyes up some, lower eyelids slightly and do something to the tendon I do not remember. Everyone says that their eyes settle, there was a time the beginning of 2008 they weren’t too bad except for the usual annoyances of wind, light etc. Now they start in each morning and seem to get worse as the days go on. I have decided to look seriously at the surgery thing as far as the physicians are concerned as there are no specialists in Topeka shorr of a couple that come from Kansas City. I could look into the KU med center there, I don’t know. For now, until I understand more about my eyes and more about surgery I will not have it done. I appreciate your input…I feel like there is a ton of knowledge out there I do not know and am floundering around and getting more and more frustrated. To elaborate a little further on the first start of all this…….it was my eyes that started looking horrible and was treated for other things before I realized that my last blood said I was hyperthyroid but I was never told, just to continue on my synthroid. It was brought to my attention when I called them about my eyes, it was then I was told to stop the synthroid and had to take other meds for heart rate etc until I could get the RAI done. thanks again.Kathy, I searched for "blepharotomy" and it seems to be a pure cosmetical procedure. It comes up on plastic surgeons’ websites who do it mostly for aesthetic purposes. No wonder I haven’t been familiar with this term all through my research about Thyroid Eye Disease (TED). Surgeries for TED are called Orbital Deconstruction (you don’t seem to need it as you don’t have bad protrusion) and lid correction.
Your saying "They said they would take the fatty pockets out from either side of the nose, turn the corners of my eyes up some, lower eyelids slightly and do something to the tendon I do not remember." could be a plastic surgeon speaking, but could be a thyroid eye specialist, too. You need to make sure who is it you are talking to.
A thyroid eye specialist will send you to a CT scan of your eyes to determne how bad your protrusion is. He won’t care as much about wrinkles, but about how to make your lids have normal size, not shrinked so you have a stare effect.
My eyes have been feeling OK for 2 years, and I am going to be having an orbital decompression surgery, setting the eyes back into their sockets. I would never have gone under the knife if my eyes were still not feeling quite right. They have to be settled, and you are saying that they have been not quite right for the last 6 months?
Are you checking your thyroid levels? (TSH, FT3 and FT4). If they are out of normal ranges, that could be impacting your eyes, too.
My best,.
Elf: I have me TSH done every three months, even tho the doctor says once a year is enough. In October my TSH was 9.171 so they increased my synthroid dose to .112mcg. My count in December was 0.338, so I stayed at the increased dosage. I don’t know about the FT3 & FT4 levels…
Thank you for looking into the blepharotomy. I am seeing my opthamalogist in February and going to talk to him about doctors that should be doing the surgery. I do believe my looks could be improved some, but looking at some peoples eyes in pictures, mine are not nearly that protruding. And right now until my eyes are not ever present on my mind as they sting, burn, bloodshot (right) and tear, I am not going to do anything.
How is orbital decompression done? Is that just for people that have a severe protruding problem? The doctors have never mentioned that to me.
What, if anything do you use for your eyes? (drops?) I certainly appreciate your information and replies to me.
Kathy
I did TSH test every 6 months, but slipped last year and went the whole year not testing. This January my test showed hyper (TSH < 0.01, FT4 closer to the upper range) so my synthroid was decreased to 88 mcg.
Many thyroid patients on boards like this one stress how important it is to test Ft3 and FT4 in addition to TSH, and many doctors dont’ realize that. TSH levels may be lagging behind.
The orbital decompression surgery is for protruding eyes.
These are pictures of what’s done during orbital decompression:
– but remember they don’t break any bones as may seem from these pictures. They get in between the eyeball and the side wallthrough a small incision in the laugh line.
To see how a young man with severe TED was recovering after his orbital decompression over 4 months, go to YouTube.com and search for Pat’s Orbital Decompression Surgery – Part II . He had severe TED and was much improved.
If it’s mild TED then people dont’ need such drastic measures, they just do lid surgeries. I don’t have severe TED, I’d say it’s moderate.
If your eyes sting and burn then a thyroid eye doctor will never ever offer any surgery on you – yet. I hope your ophtalmologist would know or refer to a thyroid eye specialist, or maybe you can find and apply directly.
When my eyes stung and were gritty in the year after RAI, I used eye gel(or ointment, it’s a small tube that you squish out like toothpaste) that was prescribed for my husband (you can’t buy it over the counter). My husband was in a fire, burned his face, and they prescribed this eye ointment for his eyes – he didn’t need it after all, and I found it extremely soothing for my eyes, as opposite to OTC eye drops that burned my eyes. I wish I could remember what it’s called! If maybe you could ask doctors what they prescribe for burned eyes, if a person actually burned his/her eyes in a fire. The next time I see my GP I will ask her of the name.
My best, Kathy
DIANNE: Went to the website for the surgeons and the one I saw was on that website, Khan Eyelid and Facial Plastic Surgery, Overland Park, KS. At this point I am still doing my homework and see my regular opthamologist on February 16th. Has anyone you know of gone to the Mayo Clinic for their eyes. One of my friends insists I do that, so I was just wondering. I am interested in your surgeries you mentioned. My email address is klgreen53@yahoo.com if you want to email me, or anyone else that would like to reply. I so appreciate the help. Thank you. Elf?
ELF: sorry, didn’t see your post at first. I have to look at home but I did have some eye ointment that I used, I will look at home and see what its called, I have not used it since I had the corneal abrasion (hope that is the right name) procedure done. Thank you for the info on the orbital decompression, I had not even heard of it. Guess I need to ask my doctor alot of questions when I go in. Right now I feel my eyes are not "right" for whatever reason and nothing I do seems to help. I appreciate all your information. Really nice to get on here and get such good information and know there are others willing to help out, and those that are still seeking help from this site, wish I would have jumped in a long time ago, but I am here now! I only have my TSH done but will ask about the others before my next lab in March.
Kathy
A blepharotomy is not the same thing as a blepharoplasty (which is a cosmetic procedure). A bleharotomy is a procedure for doing eyelid retraction surgery for Graves’ Disease patients, and has been shown to be highly successful with few complications. However, the description of removing fat from around the eyes sounds more like a blepharoplasty, and that won’t help the function of the eyelids. It will help the appearance, and usually insurance won’t pay, even though these fatty deposits were caused by the disease.
Even though a blepharoplasty can be done by any plastic surgeon, it’s important for Graves’ Disease patients to have it done by an oculoplastic surgeon. When too much fat is removed, or if the eyelids are tightened too much, it can cause more problems than it solves. The surgeon I’m seeing now does corrective surgeries on botched cosmetic surgeries, many of them blepharoplasties. I think you’re wise to learn all you can about the procedures before having anything done. It’s much easier if you have it done right the first time. Finding the most qualified surgeon possible to do the surgery is worth the time and effort. (I’ve had over 30 surgeries in the last 15 years, and many of them were a direct result of surgical complications, so I’m speaking from experience here.)
It could be that your surgeon is thinking of doing both procedures. The tendon procedure could be one involving the lateral canthal tendon, which controls the muscles to the lower eyelid. I’ve had a procedure known as a "lateral canthal resuspension" intended to raise my lower eyelids, but it helped only temporarily. I’m sure it’s different for every patient, but you might want to know exactly what your doctor plans to do (and why) going in.
As in your case, my proptosis wasn’t the worst I’d seen. It wasn’t immediately threatening my vision, but it was certainly disfiguring. I always hated it. Back in 1996 when I was diagnosed, orbital decompressions weren’t done simply because the patient felt disfigured. They were done mostly when vision was threatened, or when symptoms from continued proptosis were so severe that discomfort was profound. The first several surgeries done on me were to correct my eyelid retraction, which was quite significant, and to mask the appearance of proptosis. I had medpore orbital implants, meant to look like bone, thus putting the relative position of my eyes not so far out. Unfortunately, one implant became infected and had to be removed. It was later re-implanted, but the muscles of my face didn’t stay attached to the implants and pulled my lower eyelids down as they drooped. I ended up looking like a hound dog, and hard palate grafts failed to raise my lower lids. During these surgeries I also had upper lid retraction surgeries that failed, as the scarring process (fibrosis) of TED that occurs during the healing phase in some people caused my lids to bounce right back up again.
Eventually I had a procedure that managed to get my upper lids in position, but my upper lids eventually became droopy, so with both droopy upper and lower lids, it wasn’t nice. I still wasn’t happy with my buggy eyeballs, so by 2002 my surgeon agreed to do an orbital decompression, thinking it would help my lower eyelid position too, and that was the procedure that made me the happiest of all. It did more for restoring a normal appearance than anything that had yet been done. On top of that, I awoke from the surgery feeling a relief of pressure behind my eyes that I hadn’t even realized I’d been feeling. After that I had a mostly successful procedure to bring my lower eyelids up (finally!) which unfortunately resulted in the loss of blood supply to part of my eyelid in the area of my face that had previously been infected, so I lost part of the lower eyelid in 2006. It will be reconstructed this spring (the surgeon gave it time to develop a new blood supply). This will take two surgeries, #9 and 10, and then my droopy upper lids will be addressed. Then I hope to be done! (i still have double vision, but it can’t be surgically corrected because it varies too much.)
I think these days, orbital decompression is worth considering for anyone with any degree of proptosis. There are procedures available from mild fat removal for very mild cases, to staged bone and fat removal for severe cases. There’s no reason these days for a person to be forced to remain disfigured by this disease (other than lack of insurance and other financial resources).
At the same time, there’s no sense seeking a surgical solution too soon. If Ski had been in a hurry, she might have chosen to do something, but when I saw her at the Conference this year in San Diego I was amazed to see how much improvement she had undergone; so much that if I didn’t already know she has Graves’ Disease I wouldn’t guess it now. I don’t know how often this happens, as I know plenty of people who were treated years ago and chose not to seek surgical solutions, and didn’t ever improve. Among those you probably all recognize are comedian Rodney Dangerfield and actor Marty Feldman.
Kathy, feel free to click on my name and send me an email. I’d be glad to give you a call if you want to talk more about this.
Hi Everyone, It’s been almost a year since I’ve been on this bulletin board. I wish to thank everyone who helped me when I was in a crisis with my newly diagnosed Graves Eye Disease in Spring, 2007. Bilateral orbital decompression surgery was strongly recommended by my eye MD, but I opted to try oribital radiation treatments — a series of 9 or 10. They seem to have helped, but I continue to have very dry eyes — I’ve been told that this treatment has this side effect. I was on steroids for about a year and suffered mild side effects from this med. In January of 2008 I did have a total thyroidectomy — the surgery went well, but I know I’m "not out of the woods" yet — and probably never will be. My last TSH level was only 0.4 — I’m taking 125 mc of Synthroid a day. I would like a T3 and T4 test as I’m concerned that the TSH isn’t really a complete test
I’ve been unusually tired and now have started to have a stomach condition called Acid Reflus and I had a very questionable colonoscopy last August which revealed an area of ischemic tissue. Can Graves Disease cause these conditions —- even though I guess I no longer have Graves Disease since I had the thyroidectomy. Any advice you could give would be most appreciated. It’s great to be back "in touch". Nina -
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