[jaqeinquotation]

#1059680

Hi I will be meeting with my Ophthalmologist next week and wondered if anyone had any suggestions about the kind of questions I should be asking-re surgeries ect
Should how many surgeries he’s done be a factor? I will be needing OD, lid retraction and the other one to remove the fat and bags. It’s a scary bunch of surgeries and I want to be able to trust the surgeon that touches my face, my eyes.

[Kimberly]

#1176757

Hello – Hopefully others (especially Shirley and Gatorgirly) will jump in here, as they have extensive experience with OD!

In general, absolutely, number of surgeries should be a factor, as well as asking about the types and # of complications that surgeon has experienced.

Whether the surgeon will do one eye at a time for OD, the type of OD (fat or bone) and where the incision will be made (there are several options) are definitely issues you will want to discuss.

Also, the general questions that you would ask before any surgery: recovery time, activity restrictions, time off work, etc..

Hope this helps!

[vanillasky]

#1176758

I found a really good eye doctor last month and he examined me thoroughly and I just asked him right out to look for Graves’ Disease eye involvement. He didnt find anything so that was a relief. I think a good eye doctor should be able to see the swelling inside the eyes and the changes that Graves’ does.

[npatterson]

#1176759

You have probably already done this, but be sure your surgeon is a plastic RECONSTRUCTIVE surgeon. Who will be doing surgery for double vision? It is usually a pediatric eye surgeon. Ask if there are patient who have been through this that you can talk to? That would mean giving permission for his office to give your contact to other patients (HIPPA rules). There are so many improvements in eye surgery these days. Kimberly can tell you how to get to the videos. Go to the ABOUT part of the home page and look for the bulletins about eye disease.

Good luck, and don’t be overwhelmed by what you read. For instance: they always have to warn you about things like blindness, but my surgeon said that no one in his practice, and no one in the United States that he knew of, had experienced blindness as a result of surgery. Your new best frineds will be ICE PACKS

[jaqeinquotation]

#1176760

Either way I’m nervous about the surgeries but I will continue to research and check out the videos suggested.

Kimberly, how do I get to them?

What would I do without you guys? Thanks so much for responding with suggestions and questions that I didn’t even think of.

You guys ROCK!!!

[snelsen]

#1176761

Hi, sorry for the delay in response. I knew I had a little time. When you “get” to the questions about post op experiences of OD, strabismus surgery and eyelid surgery, do check out my posts. I wrote a lot about post op OD, for sure.

I had the same question for you that Nancy did. Are you having strabismus surgery for double vision (diplopia.)
You did not mention it, but I would like to be sure. Since you have done fair amount of reading, I imagine you have already learned there is a definitive order for the corrective eye surgeries. And they are all done in the inactive, or “cold” stage, with the exception of OD, which listed below in #1.

I’d take note of the comments of Kimberly and Nancy.

1st surgery-
OD’s if they are needed and indicated. The major and only reason for
and OD in the active, or hot phase, is optic neuropathy, which is pressure on the optic nerve, when if not relieved, can, and will, result in permanent blindness. So the OD is done to relieve the pressure, caused by extra orbital fat and the bulk of the fibrosis of the eye muscles, which, in turn, happen because we have TED! Otherwise, proptotic eyes are more exposed to light and air, and sometimes so bulging that the eyelids will no longer close.
Or, the impact of TED, which is a medical condition, justifies OD for that reason. There are folks who have milder TED, they may have some protrusion, but life is good and they don’t care. So they elect not to do OD’s. It can be on one eye or two, depending on the protrusion.

A comment here. There is a logic to the sequence. To do strabismus surgery first, correcting the double vision, makes no sense. Cause when the OD is done, the eye/eyes will be in entirely different locations. Same for eyelid surgery. Strabismus is moving the eye muscles to correct the diplopia. So, of course, get the eyes where they are going to be, first.

Next, if needed
#2-strabismus surgery. I had mine done by a pediatric ophthalmologist, as Nancy also mentioned. In my experience, this was a super simple procedure to recover from, and my results of single vision were immediate. Wonderful.

Next, if needed, eyelid surgery. Retracted upper eyelid surgery is pretty simple, you could go out to lunch with someone when you leave the day of surgery place. No pain, a few ointments. And of course, the purpose is to lower the upper eyelids. Lower eyelids are a bigger deal. Cause they are retracted, we want them to go back where they belong, but everything, mainly gravity, is working against that goal. If this is proposed to you, and/ or if you have contemplating have this done, there is a long long time between the first two procedures, so we can discuss that some other time if you are interested.

Questions and helpful stuff.
1. Experienced surgeon who is happy to tell you how many procedures done a year.
2. A surgeon who is happy to provide a name or two who has had the procedure, and of course they will check with the person to see if they are happy to share their experience. I have already done this a couple times.

For OD
1.How long do I need help? (you get the best information from people who have had the same surgery)
2. May I read and have the post op instructions AHEAD OF TIME? I realize there may be additional information.
3. Do you do two eyes at once? Most docs won’t, for you are entirely blind and helpless with both eyes covered, and you will need help a lot longer. And OR time is a lot longer. Better one at a time.

Write again if my post generates more questions, I am happy to chat on the phone, too. PM me if you would like to do that. Tomorrow is a pretty good day for me to do that.
Shirley

[gatorgirly]

#1176762

I had a successful bilateral OD in September. Here’s what I asked:

1. What will I look like once I’m healed? I brought my surgeon several photos of how I looked before TED, and he used them during the surgery.
2. What approach will you use – removing bone, orbital fat, or both? If bone – which ones – lateral walls, medial walls, orbital floor, or a combination? I had both medial and floor, plus some orbital fat removed from behind my eyes. This resulted in incisions in my upper lids, through my bottom lids, and an endonasal approach for the medial walls – an ENT did the latter while my oculofacial surgeon did the two former.
3. How long will I be bandaged? Normally my surgeon bandages both eyes for 48 hours. He only bandaged my right eye (the eye that required slightly more work) because he knew I’d freak out if I woke up “blind.”
4. How long will I need help? I was completely incapacitated for an entire week. I needed my dad and brother around the clock to help me get food, change bandages, apply ointments, manage medications, etc. By Day 2 I could move around enough to get myself to the bathroom, but I didn’t dare attempt to go downstairs until Day 4.
5. What side effects will I experience, even temporary ones? My only complaint about my OD was neither surgeon told me that nerve damage resulting in long-term (albeit temporary) facial numbness. I woke up the morning after my surgery in a panic because the entire right side of my face was numb. It still is four months later. They tell me this is because of the extensive nerve damage during surgery, but that the feeling will return after 6-12 months. I hope it does!
6. How will my nausea be handled? I received Zofran (ondansetron) intra-op and post-op and continued taking it for almost a week because I was unable to keep any food down for the first 72 hours. This obviously made taking the pain meds more difficult, leading to #7…
7. How will my pain be handled? I needed pain medication for two full weeks. They only allowed me to take the heavy stuff (percocet) for the first week, then switched me to a high dose of ibuprofen or acetaminophen (I forget which).
8. When can I resume normal activity? I was allowed to go back to work on a PT basis after two weeks. After three, I went back to FT, but my eyes still tired easily from 8 hours of computer work. I returned to yoga and exercise after the three weeks as well.
9. How often will I be checked after surgery? Since I had two surgeons from two separate practices, I saw the oculofacial surgeon at 2 days post-op (normally it’s one but day 1 was observing a Jewish holiday and my surgeon was observing), one week, three weeks, and then every 2 months. I saw the ENT surgeon at one week, two weeks, and two months, at which point he discharged me since my oculofacial will handle the rest of the surgeries alone.
10. When can I have the next surgery/surgeries? I was fortunate not to need strabismus surgery, so my eyelid surgery was always planned for about six months after the OD. I see my surgeon mid-February, at which point I expect to schedule the eyelid surgery for some time in March. My facial swelling continued to come down for an entire three months after the surgery, so be patient in not rushing into the next phase because you want your face fully healed first.
11. How can I speed up the post-op recovery process? I used drops, elevated the head of my bed about a foot, used LOTS of pillows so I could sleep comfortably upright and on my back, kept a mini fridge beside my bed for water, snacks like yogurt and fruit (after the first 72 hours of puking), used this wonderful ice pack the hospital gave me that wraps around your head and velcros at the back, and kept a humidifier going 24/7 because of the sinus issues I had due to the endonasal approach. I also used a netipot twice a day for the first two weeks but again, that was only because of the endonasal approach. I began using Vitamin E oil on my eyelid scars as soon as the stitches dissolved, and the scars are now completely invisible.

I’m going to have to politely disagree with Shirley as to one eye vs. two at a time. As long as your surgeon is willing, you are a good candidate, and you have a great support system at home, I highly recommend getting it all over with at once. All you want to do for the first two days is sleep anyway, so being bandaged and “blind” isn’t so bad as long as you have a short path to the bathroom, and someone who is willing to take care of you – and stay with you – until you can see again. And after those first few days, you can pretty much manage maneuvering around the house, you’re just really slow and easily tired. I was given the all clear to drive after exactly 10 days, but I wasn’t entirely comfortable with heavy traffic and night driving until the day 14, when I returned to work. But that’s just me. Everyone is different.

I posted my entire OD journey on my blog along with photos, and I’d be happy to PM you the link if you’re interested.

[jaqeinquotation]

#1176763

Hi,

Thank you so much for the great suggestions and information. The questions are great and I will ask them all!

gatorgirly I would love for you to PM me the link. Also I will definitely bring pictures of what I used to look like to my appointment. I have to look for some though because I tend to tear them up as I find them…

I really don’t mind if they do both eyes at the same time. The less I have to look at my face now the better. Also, I have a great support system and very very very thankful for them. Ever since I’ve been dealing with my vision changing, I sometimes use my hands to get around or count my steps. don’t get me wrong I can see but it very obvious to me that I don’t see they way I used to. I’ve become somewhat obsessed to the point that I know that I need these surgeries. We were not born this way.

I’m even more overwhelmed than ever before…but that’s ok because its for my own good.

Forgive me if I don’t use the big words….

snelson, thanks to you as well….I figured there was an order..which makes sense but did not read it anywhere. The one for double vision is needed because I definitely have it. Left, right, up and down its there but not when i look straight or turn my head in whatever direction I need to look in.

The sensitivity to light is ridiculous. I prefer to be in the dark or use a soft dim light because I can see better and my vision is affected when I’m outside during the day-hence why I wear sunglasses all day every day. I still wake up feeling like they are rocks in my eyes and I’m pretty sure the left eye is not closing when I go to sleep at night. I almost always wake up at least 2xs a night (unless I take prescribed sleeping pills) at which time I usually put in eye drops. I still use the ice packs to relieve the pressure and I’m not getting as many headaches.

I need to have the fat removed and the bone. My eyes are out there and it looks like I have two swollen rainbows under my eyebrows; the left bigger than the right. I don’t think I will need lower lid but upper lid…yes for sure I can have the “deer in the had light look” no doubt. And my eyes need to reset. They look like golf balls when I close my eyes. They can’t get any bigger. The last time it was measured I think the specialist said they were 17 (does that make sense?)
The other things mentioned medial, lateral walls orbital floor or a combination….not sure and never even heard of that so back to the drawing table literally.

I read from some of the other posts (1996 or 1998) that I won’t be able to swim in a lake or river or anything over 5ft…something about sinus infections.

I now know that there are three surgeons involved. Paediatric Ophthalmologist, ENT, and Ocufacial Plastic Surgeon…oh no 4 and a plastic reconstructive surgeon. I don’t know if the ophthalmologist I’ve been seeing specializes in ocuplastic surgery or if he is a paediatric ophthalmologist but he did say he does surgeries and mentioned removal of bone and fat; that it would be messy blah blah blah so I’ll have to ask him what he specializes in when I see him on Tuesday. I can’t believe what this disease has done to us.

Scratching my head, tears are coming now…. Gosh I just want to look like I did before or at least as close to it as possible.

Thanks again everyone

[snelsen]

#1176764

Hi JIQ!
I TOTALLY understand! I did it all. Horrible light sensitivity, wore a visor and sunglasses, the wrap around kind, even in the house—in Gloomy Seattle…..in the winter! The glare is terrible. That is why the wrap arounds. Yes, you can check out what kind of a surgeon he is, the one who will do the OD. Sounds like you ended up in the right place with the right doc, but ask lots of questions, tell him you ARE willing to have both eyes done at once. He/she may not agree. This is not a walk in the park surgery. The outcome is good, some people take a longer time recovering than others. As I said, it will double, at least, the OR time. So glad you have lots of help and a good support system.

Usually, they want to wait around 3 months before the double vision surgery. IT takes quite a while for total healing from OD. and they need to know the can depend on the measurements when they move muscles. NOTHING happens as fast as we want it to happen.

I HATED the double vision. I could only look straight down. So lower and side muscles were very affected. I could not look straight ahead at all.

Re terms for doctors, some oculofacial plastic surgeons may be the same as themselves as plastic reconstructive surgeons. And, ask the surgeon you see who will do OD if he does do strabismus surgery. Generally, they don’t, but he might. I encourage you to go to the ped eye surgeon for that.
Shirley

[Kimberly]

#1176765

I knew that Shirley and gatorgirly would come through with a great list.

This is a link to the GDATF’s YouTube page, which includes several videos on Thyroid Eye Disease:

(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, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.youtube.com/user/gravesandthyroid

Hope this is helpful!

[gatorgirly]

#1176766

I just sent you a PM with a link to my blog

I have never once been told anything about diving more than 5ft. I’m scuba certified and plan to go diving this summer, so I’ll make sure I run it past my ENT surgeon but he knew I was a diver so I’d be surprised if that was something he just forgot to mention.

I will be honest and tell you I’ve had a few sinus infections since the surgery. I never had major sinus problems before – just a constant runny nose and apparently a deviated septum on both sides, but no pain or pressure before surgery. But they told me the sinus infections were likely for the first few months after surgery. The last one was right before Christmas so I’ve been good for about six weeks now and that’s the longest I’d gone since the surgery.

So you’ll have an ENT and an oculofacial like I did. The pediatric surgeon is probably for the double vision, right? And the plastic is for…? I have no visible scars but if they had needed to removal the lateral wall through my nonexistant crow’s feet, I was going to request a plastic surgeon at least be in the OR.

When is your appointment? I’ll actually be seeing my oculofacial surgeon on Monday morning.

[jaqeinquotation]

#1176767

Sorry for the delayed response. My Internet was down for a few days.

I met with my ophthalmologist/reconstructive surgeon. Thankfully there is no need for immediate (OD) surgery and my eyes have not gotten any bigger (I previously said the measurements were 17 but I was wrong….4 months ago they were 25 and 26-big huh?) and they haven’t gotten any worse confirming that I am in the “cold phase”.

He was patient and was able to answer most of my questions:

We can do both eyes meaning he is ok with it
He suggested removing the bone first which he said will look to me as if there has been no change but this will set the eyes back about 2-3mm (why not more? maybe the more bone he removes might cause a problem?)

He said the most significant change will be when they remove the fat from the upper and lower parts (hot dog rolls and bags)
He didn’t mention anything about which “walls” would be removed and I can’t believe that I forgot to ask whether it would be lateral, medial, floor or a combination.
He also didn’t mention the ENT and again I forgot to ask.
gatorgirly can you explain which surgeon did what? I had a little trouble understanding when you explained this in your last post.
Which surgery did the ENT perform? I’m seeing my ENT surgeon (performed TT) in March and want to talk with him about this.

The surgery will be sometime in April but I will meet the ophthalmologist/reconstructive surgeon 3weeks prior to ask any questions I forgot to ask

Forgot to mention that the ophthalmologist hasn’t asked to see any pictures of what I used to look like and I forgot to bring them but I won’t forget to bring them to the next. And if he brushes them off, then I guess he won’t be touching me.

Thanks again everyone-this site ROCKS!

Heading to gatorgirly’s blog right now

[gatorgirly]

#1176768

So the ENT surgeon went first. He went up my nostrils (one at a time), removed my ethmoid sinuses so they wouldn’t be in his way, and then removed pieces of the medial wall. When he was done removing bone, he put my sinuses back.

Then my oculofacial surgeon came in and did his part. I don’t know whether he did fat first or bone, so I’ll guess. He made incisions through my upper eyelids to remove orbital fat from behind my eyes, then stitched them up. He made incisions through my lower lids – in the fleshy part under the eyeballs but not through skin – to remove bone from the orbital floor.

I may have explained this better in my blog. However, many people have ODs withOUT an ENT surgeon. My surgeon just prefers the endonasal approach to minimize scarring. And when I say minimal, I mean I have no scars whatsoever. The upper eyelid incisions healed to complete invisibility.

The oculofacial surgeon (who was the lead surgeon and the only one I continue to see for my TED) also told me that the more bone he removed, the higher the likelihood of developing double vision, which I did not have before surgery and fortunately do not have now except when I’m really tired. However, we both agreed on taking the risk in order to get my eyes looking like they did before Graves’ and TED, even if that meant double vision. I didn’t care. I hated the way I looked and was willing to deal with a few months of double vision (surgery can fix that) in order to get my old eyes back. Fortunately, no double vision and I got my old eyes back. I still have a prominent stare but that will be alleviated by the eyelid surgery. I don’t know if he plans to remove all the excess skin and fat above my eyes at the same time, but I will need that done either way. If I wear mascara, now that my eyes are back where they belong, it rubs off on all that extra eyelid fat TED gave me.

[jaqeinquotation]

#1176769

gatorgirly,

Did you have the bone and fat behind the eyes removed in one surgery or two different? My specialist gave me the impression that it would be 2 different surgeries. For example, bone then fat, then if necessary double vision, then eyelid surgery.

[gatorgirly]

#1176770

It was all one surgery – took about three-and-a-half hours. You might want to ask him to clarify. I have never heard of two separate decompression surgeries except when they do one eye at a time. The bone and fat were both critical in order to achieve the amount of decompression my eyes needed, so I can’t imagine doing one then the other.

[Author]

Posts