[alsha]

#1058874

Hi,
I’m 17 years old and I’ve been diagnosed with Graves Disease for about four years now. These past few years have been a roller coaster ride, both physically and mentally, as I’m sure many of you can attest.
I’ve been on methimazole, and my thyroid levels are now stable.
But one of the most frustrating things for me is my eye. I have protrusion in both of my eyes. I think the worst they’ve been was about 27 or 28mm. As of now, it is about 25mm.
I have slight double vision when I look down or to the left, but it doesn’t affect me too much. I constantly feel a pressure behind my eyes, and I also experience occasional dryness when it is windy out or when I’m sleeping. Light-sensitivity is also sometimes an issue when I’m outdoors.

Overall, my eyes have been pretty stable for the past year (with possibly slight improvement?). They aren’t so much red and swollen anymore.
I am planning on going to college next year, so I am starting to seriously consider having an orbital decompression. I’ve done some research, and I’m aware of some of the risks, which is why as much as I want to have the surgery done, I am still very hesitant.
For those of you who have eye problems as well, I’m sure you can relate. But it’s just the small things that I used to take for granted that starting to bother me now; for example, 1) I use moisture chambers when I sleep at night so it is almost impossible to take a comfortable nap on airplanes, bus rides, long car trips etc. without being looked at funny. 2) As a teenage girl, I also avoid sleepovers and vacation trips as much as possible just so my friends won’t ask questions. 3) My eyes are sensitive to the sun, but when I wear sunglasses, some of them push uncomfortably against my eyes because they protrude so much. 4) My eyes always dry out and tear up when I am playing the violin. 5) I’ve haven’t told any of my friends, but that doesn’t stop them from making comments about how large my eyes are, even though they don’t mean anything hurtful.
I know it may seem trivial, but I feel like my eye problems have had a large emotional impact on both myself and my social life.

After my last check up with my opthamologist, I got the feeling that he was kind of against me having surgery. He thought that overall, my eyes were stable and healthy and not in imminent danger of vision loss. He thinks that I should just go on the way I do now and not risk any surgery complications, especially since I am still young.
I have taken his thoughts into consideration, but the idea of being able to improve my eyes both medically and cosmetically seems too tempting.

I suppose the reason I posted on this board was that I wanted to hear some feedback/opinions/personal experiences about orbital decompression. Any input would be greatly appreciated!

[Kimberly]

#1170564

Hello and welcome! I haven’t had this surgery, although I do have moderate eye involvement.

You might use the “Search Posts” option in the top right-hand corner of the screen and search for “Orbital Decompression” to read first-hand experiences from other patients. Shirley (snelsen) has been great about documenting her experiences with multiple surgeries.

Also, one of the Foundation’s volunteers has been posting her experiences with Orbital Decompression on her blog page:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.greaterthangraves.com/Blog_2011.html

There was some research out of Shiley Eye Center a few years back that noted that eye involvement *does* create a significant emotional burden. And the surprising thing that the researchers found was that the appearance changes were actually more distressing than the actual vision changes…as this changes the way we interact with the world, as you have unfortunately experienced.

Please keep us posted on what you decide!

[snelsen]

#1170565

Hi Aisha,
Gosh, I am sorry that have been burdened with this at such a young age.
I can identify with every eye symptom you have. It’s not fun, that is for sure.

I had an orbital decompression which was very successful for a couple of reasons. It relieved the pressure on my optic nerve (which I had) and my eye was definitely receded in my head. As you may know, the doc who does these procedures is an oculofacial surgeon. I suggest that you try to make an appointment (or get a referral) by asking around for one who is familiar with TED and this surgery. As Kimberly said, I documented my post op experience extensively on this site when I had mine. In summary, there was minimal pain, and the key to an optimal recovery is to keep your head elevated for around a week after the procedure, and have someone bring cold packs for you to apply to your face on a regular basis. Both these things minimize and/or prevent any swelling and bruising. I was up for a short walk the next day, with someone with me. If you have this appointment, you will learn that there is some risk of double vision as a result of the surgery. But I did not have that happen. I ALREADY had significant double vision, which was making me crazy, though. I had the strabismus surgery on my eye muscles to correct that a couple months later.

I think that eye involvement really impacts our lives. It seems that your thoughts about getting this all taken care of before college is a good idea.
Do write again. These procedures should all be covered by insurance, for they are MEDICAL, not cosmetic procedures for people with TED.

Shirley

[alsha]

#1170566

Thanks so much for both of your replies!
I’ve also been contacting other patients who’ve had the surgery done before.
It seems to me that in addition to orbital decompression surgery, most people still have to undergo many additional surgeries (strabismus, eyelid, cosmetic, etc.) This sounds like it would take a good half year to a year to fit all of these in and recover from them.

Someone actually suggested to me that if I plan on doing surgery, I should take a year off before college so I can just focus on having all of my surgery done and recovering from them.

Any opinions?

[snelsen]

#1170567

I think you have plenty of time to have an OD, recover from it, then have strabismus surgery IF YOU NEED IT. If you have a little double vision and it is not impacting you life, and you are happy with what you have, then don’t have the strabismus surgery. It seems very radical to take off a year. Most of the people who march through TED with surgeries, have full time jobs and many have little kids, and some have both! Not everyone does have eyelid surgery, you would need to heal from the OD’s decide on strabismus yes or now, and if you had eyelid stuff done, it would be last.

I think the idea of taking a year off is a lot dependent on how your feel about it, how much you could get done this summer before you go to school in the fall. I am sure your college apps. are in, and you will be hearing in April?
I know you don’t have enough info from docs right now to know how much time to plan for, but I can tell you that if you are in school, it would be too challenging to have OD’s. If after the OD’s, double vision is a problem, studying for school would be challenging anyway. I totally understand about all the social implications of all this.
The things that might/might not change, are light sensitivity and dry eyes.
Our tear composition changes, and it is not as effective as it once was.
I am a violinist, too, and I know exactly what you mean. STaring at music, reading, using the computer, I always blink a lot less, then my eyes get super uncomfortable.
I am sort of just writing “out loud.” Looking at the pros and cons, which are hard to determine, not knowing the extent of your surgeries.
From my own experience, I’d say 3 weeks recovery (complete) for each OD, 2 2 weeks for strabismus ( they do both eyes at once.) And 1 /12 week for
eyelids.
****I just got moisture goggles! How in the heck do you keep them on all night? Do you like them, are they helpful? I have been taping my eyes at night, then trying onyx goggles. I find the little thing that connects the two sides is too long, with no way to shorten it.
Thanks, Shirley

[alsha]

#1170568

I guess I’m using the term “moisture chambers” quite loosely here.
I actually just use a piece of saran wrap to cover my eyes at night and it seems to trap the moisture in quite well. I had tried taping my eyes shut for about a year, but the sticky ones always irritated my eyelids and the less sticky ones weren’t strong enough.
So I’m a bit surprised, according to your records it seems that you have undergone many surgeries already. Yet, you still need moisture goggles/tape when you sleep at night?
Does this mean your surgeries have not helped you completely close your eyes?

Also, do you think that whether a person ends up with double vision after OD is completely random. Or do people with more severe cases of proptosis or who have uneven eyes have a greater chance?

[snelsen]

#1170569

Alsha,
YOu ask excellent questions! I am engrossed in doing income tax, plus I am tired. so you get the very short version tonight, with more elaboration tomorrow sometime.

1. I did not have any increased double vision after my OD. But I had been having double vision looking every way but down! I would have been happy if the whole world was on the floor, including all the people I was talking to.
After the surgery, though, I was unable to close my upper eyelid all the the way. That is when I began taping my eye. Not sure why it happened.

Just for a small bit of information, OD’s vary a lot, depending on your eyes and where the swollen muscles are, and where the orbital fat might be. If you do any reading about it, or talk to a surgeon about it, they may talk about one wall, two wall or three wall OD’s. Basically, they are making room for you eye to go back in.

I had really severe TED. I needed the OD to relieve pressure on my optic nerve. My doctors explained to me that the Hertel measurement with that metal thing that they use to measure the protrusion of eyes, is pretty unreliable. I can believe that, for one doc put the things on the inside of my eye, the other one on the outside of the bone. One of the surgeons told me that the best way to measure bulgy eyes is to tip my head way back and take a photograph.
Strabismus surgery for double vision was a miracle.
My eyes were not super protruding, but my eyelids were retracted, the upper ones too high, the lower ones too low.
Then I had upper eyelid surgery, to lower my upper lids. That was very successful.
The last two surgeries I had were on my lower eyelids, to raise them, with a graft from my mouth. this procedure has the best results. But in my case,
neither graft was successful, my lids are still way too low, and after the right eye was done, I have not been able to shut my right eye completely.
Remember, I have had a super severe case of TED. Very, very few people do.
I am definitely an exception.

So-that is the NOT-short version. Once I started, I kept going. do write with more questions.
Now-my question to you is about Saran Wrap. How did you do it? How keep it on your eyes? I’d like to know as much as possible about that.

There are many people on this site who have had great experiences with all their surgeries. I am the ONLY one I know of, I think who had grafts from the mouth to the lower eyelids.

You have every reason to know that you are going to be fine again, and look good. I think it would be helpful for you to take someone with you to appointments to take notes, and help you remember questions. That’s what I do. Also, I think there are other teens on this site. Use the search engine, type “teenager” see what you get.
Good night now.
Shirley

[alsha]

#1170570

When I just started out using the saran wrap, I dabbed a small amount of vaseline/petroleum jelly along my forehead and cheeks so the stickiness would hold the saran in place on my face. I also used gel or ointment for my eyes along with the saran wrap in the very beginning.
But now, I’ve noticed that I don’t really need the gel or ointment anymore so I don’t use anything in my eyes at night. I just use a few drops of systane during the day occasionally. (Plus ointment makes my eyes really sticky and oily!)
Also, I’ve stopped using the vaseline around my face because it gets really sticky and it causes me to break out. So at the moment, the only thing I use is a single sheet of saran wrap. Its naturally stickiness usually clings to my face, and also during the night, the moisture builds up so it sticks even better. This seems to work really well for me, but then again, I guess it varies for different people.
But it’s worth giving it a try! (I’m sure it’s much cheaper than any fancy apparatuses out there)
Oh, and another thing is that since the saran wrap does such a good job of trapping in moisture for me, the moisture can build up on really humid days and make your face annoyingly wet. But to me, it’s a small price to pay for not having to deal with dry, runny eyes or painful tapes.

Another question I have is that since I still have my thyroid and I’m just maintaining it with medication (no thyroidectemy, no radiation), am I advised against having an OD while my thyroid is still active and alive?
Someone warned me that there is still a possibility that my thyroid and eyes may change if its still active and that I should have an OD after it is gone/dead. But I’m not sure if that statement is completely reliable though.

So far, everyone that I’ve read about or I’ve talked to have all seemed satisfied with their surgeries in some way or another. So I’m taking this as a good sign (hopefully)!

[snelsen]

#1170571

Yes, that is a good sign! Lots of people are very satisfied with their choices. I do think it is a very good idea for you to talk to more than one oculofacial surgeon before you choose one. They have different ways of doing OD’s and it is dependent on where they trained, and your eyes. But it is not a sign that either one is wrong. It just makes it more confusing, unless you understand how this happens.
Here’s a thought for you about Graves’ and TED. You may have been misinformed about the relationship of Graves’ and TED.

1. Graves’ is different that TED. It has different antibodies. Graves’ has thryoid antibodies which make the thyroid gland go whacko, and produce too much thyroid. And you have learned a lot about that.
2. Generally speaking, a very small percentage of Graves’ people develop TED in varying severity. As you know, it can range from scratchy eyes to lots of problems in a severe case.
3. TED, however, is like a DIFFERENT autoimmune disease. It has its’ own antibodies, which are very fond of attacking the muscles of the eye. So, while it does not make sense to aggressively elect eye surgeries if a person has uncontrolled Graves’ (cause you are really sick ,and that needs to be dealt with first) The pathway for treating TED, is to wait until the eyes stop changing, getting worse, and are pretty stable. Because many of the eye surgeries are dependent on eye measurements, it makes sense not to do them when our eyes are changing. You wait until they stop, or the inactive or cold phase.
Put another way, addressing what you were told, a Graves patient who has NO thyroid, either by RAI or thyroidectomy, can still develop TED at any time.
It took many decades for my TED to happen.

So, as usual, this is what I have learned as a patient, and from my docs and from books, and they are all consistent. These are great question for you to as the surgeon you talk to, or your endo.

**Thanks for you comments about saran. I really appreciate them.
It seems that your eyes have gotten better! How wonderful that you don’t need to bother with all the night stuff anymore.
I wish you the best of the best as you meet doctors and decide what to do. And, do you have someone to listen with you when you go to appointments? Do you have someone to take care of you and spoil you if you have your surgeries?
Shirley

[alsha]

#1170572

I had always known that Graves and TED had somewhat of a separate track, so I guess I was a little confused when I heard about the thyroid advice.
But anyways thanks for clearing it up.

And yes, both of my parents have been with me from the beginning and they take me to appointments, checkups, bloodworks, etc.
I actually saw your response to another post about Dr. Douglas from Kellogg, and he is the one that I would most likely to go for my OD.
I’m also seeing another opthamalogist at the moment as well. He’s been terrific and he is very meticulous with his work. But he was the one who suggested I wait to do surgery until a later period in my life. His reasoning was not that I wasn’t physically ready for it, it was just that he didn’t want me to have to experience any risks or disappointments since I’m not at risk of losing vision. But my parents and I decided that if I were to do surgery, we would have a Kellogg doctor perform it since they have more surgical experience.

I agree that it’s great to not have to bother with the gels and ointments and vaselines anymore. But I still have to use the saran wrap every night.
I remember back when I was using the tapes, I would often wake up with bloodshot eyes. I’d pretty much lost track of the number of times my friends came up to me and asked me if I had pink eye…
Anyways, I’m just waiting for the day when I can finally go to bed without bothering with all the hassle, including saran wraps and eye drops.

[06291972]

#1170573

alsha wrote:

Hi, I have my daughter who is 14 and half and was diagonsed with graves a year ago and also had the eye protrusion issue. Her were about 26mm and after using predisone they are down to 24-23mm. She has sever dryness too so on artifical tears constantly. We did not try the mositure chamber or goggles as her doc stated but we tap her eyes at night and that seemed to help with drynessa and irritation the next day.She is on 20mg of methimazole and her Free T4 until now have not been stablized and TSH very low. Her endo is suggesting I131 treatment which I am against since she has already issues with the eye. I talk to another endo and he advised syrgery. I was wondering if you have been told that you need to seek another treatment since I see that you have been on medication for 4 years and you got it nearly the same age as my daughter. My husband and daughter are very scared of surgery and would not even hear about it. I was told by another endo it is not recommended to be on methimazole for longer than 2 years!!!?? Was anyone told the same thing??? I was also trying to look for a support group of similar age as my daughter who also has the same health condition to meet /speak with. I cannot really feel what she is going through I am trying but …… Her eye issue is bothering her but she does not completely admit to me it seems all internal, we have days were the mood is up the wall others ….. stomach issues , skin issues and her period was delayed until she was 14years!! Any advise from anyone on a desparte mom seeking help!! Thanks

I’m 17 years old and I’ve been diagnosed with Graves Disease for about four years now. These past few years have been a roller coaster ride, both physically and mentally, as I’m sure many of you can attest.
I’ve been on methimazole, and my thyroid levels are now stable.
But one of the most frustrating things for me is my eye. I have protrusion in both of my eyes. I think the worst they’ve been was about 27 or 28mm. As of now, it is about 25mm.
I have slight double vision when I look down or to the left, but it doesn’t affect me too much. I constantly feel a pressure behind my eyes, and I also experience occasional dryness when it is windy out or when I’m sleeping. Light-sensitivity is also sometimes an issue when I’m outdoors.

Overall, my eyes have been pretty stable for the past year (with possibly slight improvement?). They aren’t so much red and swollen anymore.
I am planning on going to college next year, so I am starting to seriously consider having an orbital decompression. I’ve done some research, and I’m aware of some of the risks, which is why as much as I want to have the surgery done, I am still very hesitant.
For those of you who have eye problems as well, I’m sure you can relate. But it’s just the small things that I used to take for granted that starting to bother me now; for example, 1) I use moisture chambers when I sleep at night so it is almost impossible to take a comfortable nap on airplanes, bus rides, long car trips etc. without being looked at funny. 2) As a teenage girl, I also avoid sleepovers and vacation trips as much as possible just so my friends won’t ask questions. 3) My eyes are sensitive to the sun, but when I wear sunglasses, some of them push uncomfortably against my eyes because they protrude so much. 4) My eyes always dry out and tear up when I am playing the violin. 5) I’ve haven’t told any of my friends, but that doesn’t stop them from making comments about how large my eyes are, even though they don’t mean anything hurtful.
I know it may seem trivial, but I feel like my eye problems have had a large emotional impact on both myself and my social life.

After my last check up with my opthamologist, I got the feeling that he was kind of against me having surgery. He thought that overall, my eyes were stable and healthy and not in imminent danger of vision loss. He thinks that I should just go on the way I do now and not risk any surgery complications, especially since I am still young.
I have taken his thoughts into consideration, but the idea of being able to improve my eyes both medically and cosmetically seems too tempting.

I suppose the reason I posted on this board was that I wanted to hear some feedback/opinions/personal experiences about orbital decompression. Any input would be greatly appreciated!

[snelsen]

#1170574

Hi alsha, this post may be be redundant, for we have exchanged posts previously.
I am not considering OD on the other eye-approximately 23-24 proptosis, I think this is a pretty subjective measurement in some ways, for i can feel by where the place the things at the corners of both orbits, they are in different places, either deeper or more superficial. But, aside from that, I think my elective OD will help my cornea,for there will be less protrusion. Since my eyelids are retracted, also, my eyes do not close completely when I sleep. If I decrease the proptosis by OD, I think it would be helpful.
Cosmetically, I have given up on looking like I used to look. Which, in hindsite, was pretty darn good. I simply look different now, with the use of sun glasses most of the time, and dabbing my eyes when the tear and overflow a lot.

To the mom of the teenager. It sounds like your daughter has pretty severe TED. I think you are right to be concerned about having RAI with TED. I just had an appt with my endo today, and he had a joint meeting with ophthalmologists, and neuro/op docs, and the evidence is growing relating to RAI exacerbating TED. Even with the prednisone before. But this has just come to the attention of docs, and there is not good body of literature yet. Most is anecdotal, as I just described.
Re surgery,it is important that she feel comfortable with it. It was my choice, and I don’t regret it at all. I think you will hear from facilitators on this site have been on much longer ATD regimen than two years. But yes, this is another area where the literature is not there to support decades of use.

As I previously said, I was extremely happy with my choice of thyroidectomy. It seemed the quickest to permanently get my life back, as fast as possible.
Shirley

[alsha]

#1170575

06291972,

I am so sorry to hear that your daughter has to go through these things as well! It really is a tough thing to deal with especially when you’re a teenager.

Yes, I have been on methimazole and levothyroxine for four years.
My endo is trying to wean me off of the medication and see if I could go into remission, however, I am having my orbital decompression soon and I didn’t want to make so many changes at once.
The reason that I’ve been on meds for so long is that my doctor says that the longer you are on medications, the better chance you have for going into remission. (Although, I’m not positive, but remission rates don’t seem extremely high.)
I have never heard that you shouldn’t be on medication for more than two years. According to my doctor, my doses are so low that it I shouldn’t be experiencing severe symptoms. (I take 10mg of methimazole everyday and between 50-100 mcg of levothyroxine everyday). Although I’m not sure if taking medication for a long time could have long term effects – MY doctor never mentioned anything – but so far the only mild side effects I’ve experienced is some weight gain (around 5-10 lbs) and some hair loss.

But of course, surgery is another option. I definitely encourage you to avoid radiation as many people warn me about the negative effects on the eyes, as you already know. I’ve talked to a couple people who’ve had thyroidectemies and it seems that their surgeries have gone fairly well without much complications. I did not opt for surgery yet because it has been hard to find time to take off and have the surgery. Also, I didn’t know if having the surgery would mess everything up again and force me to take off more time to recover and readjust.

My levels are pretty stable now, and more the most part I feel pretty good.
However, I am currently still dealing with the eye issues.
And I understand firsthand how all of this can take a toll on my psychological state as well as my social life.

If your daughter ever wants someone to talk to, shoot me a private message and I would be more than happy to share my email.
In retrospect, it would have been really nice for me if I could have talked to someone who knew exactly how I felt when I first started out.

Best of luck with everything!

[Kimberly]

#1170576

06291972 – Wow, I’m sorry to hear that your daughter is dealing with all this at 14…Graves’ and TED are difficult enough to deal with as an adult!

I posted some info about long-term use of methimazole in this thread:

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://gdatf.org/forum/topic/42509/

Also, you might be interested in the following presentations from our 2011 Patient & Family Conference in Boston:

http://www.youtube.com/watch?v=-HttLLtRg7s

http://www.youtube.com/watch?v=oC_yM7Lk1pI

Wishing you and your daughter all the best.

[Author]

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