[meegolf November 9, 2008 at 4:32 am Post count: 1]

#1019991

I’m new here but wanted to post about Graves Eye disease. My eyes have been active for about 14 months and I’ve had to have two surgeries. The first being muscle recession and the second four months later being an orbital decompression. I have had Graves for 24 years. At the beginning I had the RAI then synthroid for the last 24 years. Just feeling like a freak with these buggy eyes and having to function with an eye patch on one eye because its so severe in the left eye. Nobody ever told me about Graves eye until I had it.
Anyone elese going thru this? Maybe you can help or I can help?
Thanks
Shirley

[Bobbi November 9, 2008 at 10:40 am Post count: 1324]

#1075480

I no longer have active eye disease, thank goodness, but I do empathize with your current ordeals. When our looks change, it is very hard to feel OK about ourselves.

Unfortunately, when we no longer feel OK about ourselves, our behavior can change. My mother, who had the eye disease as well, withdrew, wore only dark glasses when she went out, etc. It was ironic to me because she had always talked about inner beauty being more important than outer looks. So, I actually got two "lessons" from my mom, and they were both helpful. The first is that inner beauty matters the most, and the eye disease had not changed who I am as a person. The second was that withdrawing, becoming shy, allowing yourself to feel freakish over something that is totally beyond your control, is NOT helpful. Withdrawing did not help my mother’s moods, her sense of well-being, or her relationship with her friends and family. It diminished the quality of her life.

We only get one life. So, I wore a patch, because prisms did not correct my double vision. I thought about (but did not pursue) "color-coordinating" my patches for my outfits. I went to the cosmetics department and asked for "industrial strength" make-up and laughed with the sales clerks who tried to help me find the right concealers, etc. I made faces in front of the mirror, and discovered that I looked much, much better when I smiled. Not good, mind you, but "better." (And, yes, I also wept a lot, and said the Serenity Prayer a lot, just like lots of other folks who get the eye disease. )

I truly encourage you to "forget" how you look right now. The disease is a horrible trial, but it does end and often there are surgical procedures which can restore our looks. I’ve met lots of people who had horrible eye disease, and were treated and "fixed." They may not look like they used to, but they look (to me) terrific — their eyes look normal to others. Try, one day and one step at a time, to be the "real" you, regardless of how you look. I think you will find, as I did, that friends accept the patches, or the heavy concealers, much more easily than they accept being shut out.

Bobbi — Online Facilitator

[cathycnm November 9, 2008 at 11:21 am Post count: 284]

#1075481

Bobbi – You raise a point about make-up. My eyes are mild, but they have the constant "bags" beneath them. I have been told that "I never would have known that was thyroid; it looks like you did not sleep much last night". It has aged my appearance – probably I am the most sensative to it. We look older after we don’t sleep well, too, I think. I have wondered about using make-up products like the ones used for "the day after no sleep". I have been afraid those might make my eyes drier, etc. I do have a tendency toward allergies, etc. But maybe I would feel more zest if I did not see this tired looking woman starring back at me in the mirror. I would love to know more about effective make-up or other strategies to fit into my 60-80 hour work week. Thanks!!!

[Bobbi November 9, 2008 at 2:26 pm Post count: 1324]

#1075482

One of the best-received programs we had at a conference long ago was on make-up techniques. It made such a difference in morale.

Bobbi — NGDF Online Facilitator

[Debbie November 12, 2008 at 6:28 pm Post count: 1]

#1075483

meegolf wrote:I’m new here but wanted to post about Graves Eye disease. My eyes have been active for about 14 months and I’ve had to have two surgeries. The first being muscle recession and the second four months later being an orbital decompression. I have had Graves for 24 years. At the beginning I had the RAI then synthroid for the last 24 years. Just feeling like a freak with these buggy eyes and having to function with an eye patch on one eye because its so severe in the left eye. Nobody ever told me about Graves eye until I had it.
Anyone elese going thru this? Maybe you can help or I can help?
Thanks
Shirley

Had my thyroid removed 2 years ago. 1 year later I started having bouts of double vision,and
swelling around my eyes. Every month I went to my family doctor thinking I had a sinus
infection. Now the double vision is permanent. MRI – MRA showed graves. The muscles behindmy eyes
were so swollen it almost hit the optical nerve,came close to losing my eye sight. Had to take steroids and have raditation treatments to reduce the muscles from swelling any more Surgeon can’t operate until I become inactive. Debbie

[msjoany November 21, 2008 at 4:38 pm Post count: 2]

#1075484

I am 52 years old, and I was diagnosed with Grave’s disease in March 2007 and had RAI in May 2007. That was the worst mistake I ever made. Upon initial diagnosis, the only symptoms I had were rapid, unexplained weight loss and constant fatigue. Blood tests and a couple of trips to an endocrinologist made the Grave’s diagnosis, which was confirmed by a thyroid scan. The endo highly recommended the RAI over trying to regulate the thyroid with meds, so I listened to him.

About 6 months after the scan, I started having Grave’s eye disease symptoms, as well as pretibial myxedemia, and extreme swelling in my hands (to the point where I couldn’t wear my rings), feet and ankles (to the point where I could not wear any of my shoes — I had to go out and buy shoes 2 sizes bigger just to have some to wear). I have been on Prednisone for about a year, at gradually decreasing doses, and the swelling in my hands, ankles, and feet is gone, but my eyes have only gotten worse, not to mention the facial puffiness that comes with being on a prolonged dose of Prednisone.

I absolutely can’t stand the way I look now. I was never overly-vain, but I did like to look nice, and used to be rather proud of the fact that no one believed I was as old as I am. Now, my eyes are so bugged out and puffy, I have to wear my sunglasses and reading glasses way down on my nose so my lids don’t rub against them. My face is SO swollen and puffy that I look like a chubby little teddy bear.

My eye doctor does not want to do the decompression surgery because of the risk involved unless my eyesight gets really, really bad (it has dimished significantly since the symptoms started) or unless the optic nerve is threatened by the swelling.

I am a runner, and still maintain my exercise routine, plus eat fairly healthy, and this seems to be keeping my weght under control (thank goodness), but the facial and eye swelling, puffiness, and protusion is wearing me down. Anyone have any suggestions?

[Ski November 21, 2008 at 5:38 pm Post count: 1569]

#1075485

Hi msjoany,

The good news is that your eyes may have a phase of improvement, and some of the protrusion and discomfort may disappear. At our most recent conference, the doctors said that the eye disease typically follows a course that is somewhere between 12 and 36 months. Smokers seem to experience the longest disease curve. Near the end of the curve (referred to as the "cold phase"), the eyes can improve, and typically they stay that way. If you are willing to wait even longer, further improvement is possible, though it would likely be in tiny degrees and over a long, long time. In any event, you can look at your current condition as temporary, and that may help.

Please don’t presume that the treatment you had was the cause. Only one study has shown that a small percentage of RAI patients experience "temporary worsening" of eye symptoms after RAI, and no one has been able to repeat even that percentage (all more recent studies have had far smaller groups). None has shown it to be a "trigger," meaning that you would not have had the eye disease without RAI.

I am sorry that your doctor railroaded you into treatment without offering the options. One of our goals is to ensure that patients find out they have options before treatment.

During the "hot phase," when your eyes are still changing, the decompression surgery may well be useless, as further changes could be triggered by the trauma to the eyes. Your doctor is right to refuse it unless your optic nerve is at risk. Once you have hit the "cold phase," decompression will definitely be an option for you, and the procedure has been used long enough that the surgeons are VERY good at what they do. You can expect a return at least NEAR what you had. Make sure your doctor knows what you looked like before ~ it’s hard to figure out, after the changes have begun.

In the meantime, protect your eyes any way you can. It may make you more comfortable to buy lightly tinted sunglasses to wear indoors, that will protect them AND hide them from people. The most troublesome part of the eye disease is what it does to our EMOTIONS, to our sense of well being.

I must run now, but please take heart. You will see improvement, one way or another.

[LaurenC December 4, 2008 at 8:15 am Post count: 3]

#1075486

Hi. I’m new to this forum. I had RAI for Grave’s a few years ago and have spent the past, oh, year and a half or so with the opthalmopathy mostly affecting my right eye. I have some double vision, though I can focus pretty well when I look straight ahead. It mostly limits my peripheral vision and upward gaze, but in the mornings when I first wake up, my eyelids are swollen, the eye is runny, and I can hardly focus at all. I tried prisms, but they seem to blur things a lot, and I write for a living and have to be able to read, so they didn’t work very well for me. I wear a patch when the double vision is really bothering me. I’ve been seeing a neuroopthalmologist in NJ who has been a very good physician–very thorough in following this–who says it’s stabilizing enough that he’s willing to start talking about the decompression surgery. I understand the risks but I do want to have this corrected as much as possible. I’m thinking I’d like to get an opinion from another surgeon before I do the surgery though, at least in regards to whether it truly is the right time to do it (as opposed to waiting a little longer) and exactly what type of decompression to perform. Are we allowed in this forum to provide referrals? If so, has anyone used a surgeon (particularly one in the northeast US) they would recommend for orbital decompression?

[Ski December 4, 2008 at 1:53 pm Post count: 1569]

#1075487

Actually, we are not allowed to recommend (or bash) doctors here, but we can provide you some links to find doctors with certain qualifications. At our most recent conference, one of the doctors suggested looking for doctors affiliated with the American Society of Ophthalmic Plastic and Reconstructive Surgery (ASOPRS).

[note to BB members: you could send referrals through private messages.]

The most important thing to know, before you embark on surgery, is that you are in the "cold phase," meaning no further changes are happening. The determining factor for the doctor who spoke was at least three months (perhaps six) when no changes have occurred at all.

These two points (from the conference) seem helpful for you: first, the highest risk of double vision after decompression occurs when surgery involves the nasal wall and floor, and second, the doctor recommended that overall, you avoid surgery on the floor or roof of the orbital cavity.

Recommendations on whether to do decompression have to do with your overall symptoms and their severity.

FYI, it is possible to have a bone decompression at the same time as a fat decompression in order to keep the bone removal to a minimum, but it’s important to know whether your proptosis comes from muscle swelling or fat expansion. The ophthalmologist should be able to figure that out, but it may take a CT scan to know for sure. If your issue is primarily muscle involvement, fat decompression may not help much.

I wish you luck through the process, let us know how it works out!

[elf December 16, 2008 at 2:01 pm Post count: 181]

#1075488

Bobbi wrote: So, I actually got two "lessons" from my mom, and they were both helpful. The first is that inner beauty matters the most, and the eye disease had not changed who I am as a person. The second was that withdrawing, becoming shy, allowing yourself to feel freakish over something that is totally beyond your control, is NOT helpful. Withdrawing did not help my mother’s moods, her sense of well-being, or her relationship with her friends and family. It diminished the quality of her life.

We only get one life. … I truly encourage you to "forget" how you look right now.

This struck a chord with me, as that’s what I’ve been doing for the last 3 years – talking myself into accepting the "new me". 3 years ago, I had RAI, and my eyes have been settled for the last 2 years. I almost succeded in forgetting how I look – except for "silly" little things like catching a stare from a stranger, or aversion to taking pictures of myself (this has been painful since my kids have no pics of mommy with them from the time they were 1 and 2 years old, and they are 4 and 5 years old now), or just looking at earrings and necklaces, not daring to buy them – to avoid drawing attention to my face.

Where I live, we’ve had no orbital surgeons, so whether you liked it or not, there has been not much choice but accepting your looks. Recently, an orbital surgeon was hired, a bright lady, and I have these overwhelming hopes now that at least I may be able to take pictures with my children as they keep growing up. I’m on the wating list, and as I understand, by the end of 2009 I may look different. (2 separate surgeries on each eye with a few weeks in between, and then lid surgery).

PS: Just wanted to add that I don’t blame RAI for anything, in fact RAI saved my sanity, and freed me from the "unwell" feeling. I’m healthy 3 years after RAI, taking fixed daily supplement (don’t need to monitor my levels and keep adjusting, as in ATDs). Too bad doctors are being bashed for recommending RAI. That is the best thing invented – our predecessors, if they got Graves, had to live with increasing goiters and eyes with no cure.

[cathycnm December 16, 2008 at 2:54 pm Post count: 284]

#1075489

Meegolf – How wonderful for you! Something to look forward to.

I feel blessed that my eyes stayed mild – but I get so many comments on looking tired and my look in photos looks sadder and older than before. I don’t mind aging – but I do mind the sad stuff. I don’t like sending that message to the world. I don’t know what my eyes will do once things settle a bit – and I probably am lucky enough not to need orbital surgery. However – I have read botox can be effective in reducing the bags left by Graves. (Anyone have any info on this).

I am curious to see how your surgery goes for you – and I wish you the best with the waiting list. REminds me a bit of the lines at Disney land on the really good rides. Cathy ” title=”Cool” />

[elf December 16, 2008 at 3:11 pm Post count: 181]

#1075490

Cathy – that is a very good comparison – I do feel like a Cinderella, a fairy appearing from nowhere, waving her wand, transforming me. I know I won’t look a 100% like before Graves, but better than now, anyways.

I don’t have bad protrusion, neither, my eyes are closing, I don’t need to tape them at night. I don’t use eye drops. My CAT scan shows bad protrusion, though, with 1/3 – 1/4 of eyes under the bone line (should be 2/3 of the eye under). I’m Asian (well, half-Asian, but look 100% Asian) – so the natural puffinness camouflages the protrusion somewhat.

I am excited out my skin, maybe I should temper myself down. I didn’t realize how bad I felt about myself until this surgery opportunity has arisen.

[Madame_X December 16, 2008 at 6:15 pm Post count: 128]

#1075491

I’ve always had puffy undereyes. Try chamomile (comes in stick form) or even Preparation H (I’ve heard that beauty contest contestants swear by it).

[Ski December 16, 2008 at 6:20 pm Post count: 1569]

#1075492

Responding to Cathy’s comment:

I have read botox can be effective in reducing the bags left by Graves. (Anyone have any info on this).

I went running for my notes from October’s conference because I remembered Botox being mentioned. What I found was that they did not refer to it as help for the bags left by TED. The only mention of it at the conference was as a possible help for double vision (they can "freeze" the eye muscles to keep them from pulling the eye the wrong way).

The bags are a separate issue, best handled last, because they MAY go down on their own as you heal. You don’t want to overcorrect.

In addition ~ Preparation H does NOT solve the puffy undereyes we get from Graves’. Typically ours is caused by fat being "pushed" out into the tissues surrounding our eyes, and Prep H can’t solve that (before I knew what was wrong, I DID try Prep H ~ It did not help). There’s not really much you can do ~ raising the head of your bed helps some (it’s what helped me most).

[cathycnm December 16, 2008 at 7:28 pm Post count: 284]

#1075493

Ski – Thanks for the info. I have some eye cream that I got at Sephora (sp?) called baggage handlers that is supose to help bags – I don’t see much difference. I also got some make up that is supose to help – and the coloring helps some but it is irritating to my eyes so I only use it when I need to be beautiful. I did not expect miracles due to knowing this was not so much extra fluid but fat/muscle changes. I guess I need to practice smiling more – It really helps over come the message my eyes send. It is interesting that we sleep less with Graves and our eyes give the tired message with bags. Thanks again! Cathy

[Author]

Posts