[Shazzer1976]

#1018851

Hello,

Like I said in another post, I’m new to this group and was looking for information about Orbital Decompression. I am due to have this surgery quite soon and am looking forward to it with mixed feelings!

I do not have any sight issues thankfully, although I had one of my eyelids lowered to give better closure and to improve the look of my eyes. I don’t mean to be vain about this but I have taken the change in my appearance quite badly. I cope better now than I did in the past and have found little tricks to help disguise the look of my face! For example, I try to choose glasses that cover everything up.

I work in a school and a common nickname I have heard is ‘popeye’ – nice? I also feel quite self-consious about meeting someone’s gaze and I would not have been like that in the past. I would love to wear contact lenses again but can’t because of how my eyes look and because my eyes are so bad it is hard to find suitable lenses! Also goggles! I used to love swimming but goggles are just so uncomfortable and chlorine stings like mad that I haven’t been swimming for years!

Has anyone else had this surgery done for cosmetic reasons – or re-habilitative reasons (I think that was the clever word the surgeon used!)? I would be interested to hear how people got on. How long was the recovery afterwards? I am due my operation at the start of December and thought I could be back in school by the beginning of January? Is that reasonable?

Thanks for reading this and I really can’t wait to hear from you!

Sharon

[nashcotc]

#1067475

I was diagnosed with Graves Disease in 1988. Had lid surgery in 1992, but was not offered orbital decompression. Went to a different occuplastic surgeon for a problem with my tear ducts and she asked why I had not had OD. Told her it was never offered to me. Long story short, had my right eye done a week ago and am doing great. Some discomfort, but my eye is already looking normal. I am scheduled to have the left eye done in January. After that will have my right lower lid lifted up just a little. I am healing fine, have taken very little pain medication. To me it has been a blessing!!!! My right tear duct has been repaired (was stopped up), decompression on right eye and fat removal!!!!! Mine was "medical", but of course the result is "cosmetic". Hope this has helped..

[Ski]

#1067476

Having orbital decompression to look normal after TED is *NOT* having the surgery for "cosmetic reasons." It is still for a medical purpose, because the defect is due to a disease state, and correction does more than make you feel good, it enables your eye to function correctly (excessive dryness due to proptosis causes issues, etc.). Many patients have had difficulty when their doctor’s office codes the procedure as "cosmetic." It is NOT cosmetic, and should not be coded that way when the procedure is ordered, else your insurance coverage may be patchy, and you may have to go back again and again to fight for payments. Make CERTAIN your doctor’s office knows the right way to code the procedure so that your surgery is covered.

[hyperm]

#1067477

Hi,

I hope you don’t mind me jumping in, I am so confused about TED. I initally at the stage of diagnosis had watery/gritty eyes which settled down as my meds kicked in. MY surgeon (after TT) said that my eyes were one of the reasons I wasn’t offered RAI – it floored me as up until I had the op I never noticed anything. NOw my eye lids are very puffy, have large black bags under my eyes and my left lid has an extra layer and it feels as though I have a long fringe and the hair keeps getting caught behind the lid when it goes back if you know what I mean. Can I ask a few questions please:

1) has anyone had steriods as a form of treatment? If so what does it do to the eyes? What side effects did you have (weight gain, hair loss etc..)
2) If I leave my eyes like this will it get worse or can it settle down again once my bloods come into range
3) What can I do to help the puffiness/bags under my eyes
4) What happens in the surgery – will it prevent the eyes going like that again
5) what other options are out there
6) Can I go blind if I don’t get treatment on my eyes

I am so scared and like you said I get overwhelmed. Some days I can cope others I just break down and it frightens me as to what this disease can do to me.

Thanks so much xxxx

[sutan351]

#1067478

It is confusing and what’s more confusing is the different ‘opinions/recommendations’ you will get from the Drs. I’m sure our experts will jump in with a response, but I wanted to share a few things. I was diagnoised in Fall of 2006 and waited out the hot/cold phases of Graves – I also have TED (which as we know takes a separate course and can continue to affect your eyes) long after your thyroid has been corrected. My issues started with Double Vision then the puffiness, dryness etc for years followed. I gathered a lot of information over the years, saw many drs and am now considering Orbital Decompression – for ‘rehabilitative’ reasons as well. To address a few of your ??? from my perspective.

1) After taking Methimazole for many years to address my Hyperthyroidism – My endocrinologist recommended RAI, since my blood levels were never stabalized. Before RAI (once when my eyes were pretty bad) I did a round of steriods with very little side effects, due to the short amount of time. I opted for RAI, because my Eye Surgeons suggesting ‘addressing my Thyroid’ BEFORE doing any surgeries for my eyes and this is somthing that is more of a problem for me. Before RAI (this past spring) I did a round of steroids before and after the RAI. Past studies have shown this helps to minimize any worsening of the eyes. Since RAI, my eyes have actually gotten better.

2) From everything I’ve read and been told, you can get your blood levels normal and your eyes can still do ‘their own thing’, but they typically (overtime) stabalize. Where that point is may not be ideal – but at that point surgical considerations are more ideal. I still have double vision, bulging eyes, dryness etc., but less extreme than in years past.

3)The puffiness/bags under my eyes (and above) is actually ‘fat’ compressed forward from the enlarged muscles. I have used cold compresses in the past and various cremes, but know it’s mostly fat. I do use an eye mask at night which helps with the dryness. The fat bulging is an issue for me, and I have been told lid surgery upper/lower will not get rid of this fat, that is why I am considering Fat Decompression Surgery and trying to get more information on this.

4) Depending on the type of surgery it can address your eye issues, but can cause complications as well. I saw one Neuro Op. that would not do the Orbital Decompression Surgery, because my cornea is not at risk – other Drs. more versed on the advancement of this surgery may proceed. But like any surgery there are risks involved and in my opinion you need to be in the hands of a very skilled surgeon with this surgery. My stopping point continues to be my double vision, as I don’t want this to worsen.

5)One option is to wait longer, continue to gather information and weigh your options before proceeding with any surgery. Time is your friend. Difficult as that may be.

6) You should get your eyes checked regularly for any cornea damage which can lead to more serious vision issues. I have very healthy corneas (surprisingly) even with all my vision issues.

Hope this helps. I actually go to another specialist tomorrow to followup from an appt. last year and talk more about OD> I’ll keep you posted with any updates. As a final FYI – post RAI as I stated my eyes are better, but I am hypothyroid (trying to get the meds rights on this side) and have gained 10 lbs – very frustrating, but trying to focus on my health not weight – eaiser said than done – for sure!

[elf]

#1067479

Ski is absolutely right. No surgery is "cosmetic" with TED. The reason of proptosis is enlargement of the eye muscles, and that’s a medical condition, — regardless if your sight is affected or not. Giving more room for the eye by the way of OD is correcting the medical condition.

[elf]

#1067480

hyperm,

sutan351 gave good answers. I just will try to answer quickly your questions:

1. Steroids is dangerous stuff and should be used for very short terms (days) for precise reasons. These are long-term side effects of steroids, that are worse than TED: http://en.wikipedia.org/wiki/Prednisone#Side-effects

2. In some people, getting blood in ranges helps their eyes… The excess of the thyroid hormone may affect their eyes, but not to the degree of TED. It’s hard to explain, since all Graver’s have some degree of eye involvement. TED just doesn’t proceed to its full force in some people, I guess.

3. Don’t know. If it’s TED’s signs, no conventional creams/beauty treatment will help.

4. No surgeries until TED runs its course! TED has to go over the "hot" stage that lasts from 18 months to 5 years, and then "cools off". I would say the biggest problem of TED people is this hot stage, – not the surgeries. Day after day, you have to get through the day, through the discomfort in the eyes, through the dry/teary nights, all the while having to perform all the healthy normal adult’s duties. Believe me, after years of waiting, a surgery will seem like heaven!

Once TED is in the cold stage, that’s it. It’s over. Now you can correct your eyes – eyelids, or proptosis, whatever state TED will leave your eyes in. TED will not be back anymore!!!

5. Except for making your environment "cleaner" (less household chemicals), your food "cleaner" (less fillers and chemicals), and forcing yourself to de-stress (shedding all the unnecessary responsibilities, taking long baths, massages), – waiting is the name of the game.

6. If you feel that you can’t see colors or light, go to a dr immediately. But in the majority of cases, no, people still can see with their bulging eyes.

[dammer01]

#1067481

I have had orbital decompression surgery on both eyes and had a total of 3 surgeries per eye. I keep being told they look better, but I can see the difference. They don’t bug out any more but they are crooked. One eye is open more than the other. They removed some bone that has something to do with my sinuses. Now when i eat spicy things my nose will run, when I sneeze my left eye fogs up. My eyes always hurt and I am constantly taking motrin for the headaches. My vision is terrible. It like hurts to see. I can never get a doctor to understand how it feels. It just wears me out every day to use my vision. i come home from work so tired from the strain on my eyes. I don’t want to scare anyone, but i didn’t know any one who had this surgery, and for me, i don’t think i would go through it again.

[Ski]

#1067482

Just a couple of comments ~ as I browsed the most recent posts, these thoughts stood out:

The point of steroids is to keep the swelling down, and while they do definitely have serious potential side effects, they can also save the vision of someone who is in danger of losing sight due to the compression of the optic nerve. Once that nerve is compressed, there is no going back, your sight is lost forever. That’s a very rare occurrence, and most patients do not have that concern. It’s a discussion you need to have with your doctor when the time is right. Typically steroids have been reserved for the people with the most severe symptoms precisely for this reason. They are definitely a temporizing measure, they only help as long as you are taking them, and you can usually expect the swelling to return once you stop, so that’s another piece of the discussion, but the possibility exists that they can actually shorten the disease curve in the hot phase.

Recently, doctors have begun using targeted radiation in addition to steroids, in order to limit the amount of each treatment you require in order to keep the swelling down ~ which also limits the side effects of either treatment.

In addition to that, there is a new treatment philosophy developing in which the goal is to keep all swelling down as much as possible during the hot phase, because then there is less scarring and damage in the aftermath, thus less to correct and less reason for surgical interventions later on.

There are also several ways to deliver steroids, some of which have less side effects. There are oral steroids, IV/pulse steroids, and injections of steroids into the fluids behind the eye. Each have their own pros and cons (don’t we ALWAYS get that?), so again, part of the discussion to have.

Once the surgeries have begun, it can be difficult to return your eyes to what you remember as normal, but I’ve seen a lot of post-surgical patients, and they look GOOD. We have to remember that we are dealing with incredibly small margins, incredibly minute details, in order to return our eyes to what they once were. If your doctor has a "before" picture of you (from LONG before your TED symptoms), you’ll have a better chance of getting there, because they have no way to tell where you started, once the swelling has begun.

I hope that helps some!

[sutan351]

#1067483

I just returned from visiting another Surgeon Yesterday to discuss Orbital Decompression Surgery (which he still recommends). We discussed Fat Decompression (which is a fairly new surgery as an alternative), but he stills feels the Orbital Decompression is my best bet to address the proptosis. Again, I don’t have any Cornea Risk at this point but do have double vision and a great deal of puffiness. My question for this surgeon and for others here (if allowed to answer this about Drs.) is this….

What is a the average amount of Orbital Decompression Surgeries Performed by your Surgeon?

This Dr. I saw indicated he does a lot of orbital surgeries weekly and about 1 Decompression a month. This doesn’t seem like a lot, but then again this surgery would typically be done for those of us with Graves and TED (which is a smaller percentage). His method of OD (there are many methods out there…I have found) include the medial, lateral and orbital floor (which tends to cause the numbness – a common risk)

I’m looking into other specialists ( I know we can’t name Drs.) but if anyone would like to send a private e-mail I would appreciate your comments.

Thanks,
Sandy

[Ski]

#1067484

We always recommend that you see an ophthalmologist affiliated with ASOPRS (website http://www.asoprs.org), as a basic starting point.

The doctors at this year’s conference did talk about fatty decompression vs. bony decompression, and also the types of bony decompression (meaning which walls are involved). The specific walls involved in your surgery should be tailored to your precise issues ~ patients suffer swelling in different eye muscles, so you’d need to remove bone where it’ll do the most good FOR YOU. There is no "standard" that every patient can follow and be successful. I don’t have my notes right here, but I do remember that involving certain specific walls can increase your chances of double vision afterward, so make sure to ask about that.

The first rule, we were told, is that every patient presents an entirely new set of circumstances, and each needs to be evaluated individually, down to the most minute detail.

I’m not sure what we would refer to as a "high" rate of orbital decompression surgeries, but I know that asking your questions and comparing the answers you get will help you to find the surgeon you feel most comfortable with. I would add one question: what is your complication rate? Any doctor who will not answer that question or elaborate on the details is one beside whose name I would put a big red question mark. Not a "no way," but it’s something to consider, if they’re not willing to be open about complication rates in their prior patients.

Best of luck with your search ~ you’re doing the right thing, research is key to a successful result!

[elf]

#1067485

My orbital surgeon has the same type of workload – she performs a lot of eye-cancer-related orbital surgeries, then eye restorations and Graves OD. So the frequency of ODs is about the same, a few a month. I think it’s reasonable.

[hyperm]

#1067486

Thanks for the info I really appreciate it. I am praying that I don’t need any treatment and that once my bloods settle my eyes will too.

As a chronic asthmatic I have been on heavy doses of steroids in the past and I really don’t want to go there again as I hallucinate with them and feel awful… Plus I really don’t need any help with the weight gain at the moment.

With love and prayers for all of you. xxx

[Shazzer1976]

#1067487

Hiya!
This is day 5 post surgery and things are going really well. I have a follow up with an ophthalmologist on Wednesday and then then Max-facs surgeon in a couple of weeks time. I think the worst thing about the whole experience has been the pain relief they gave me – it made me feel really ill and out of it, but thankfully the pain has been minimal and the swelling has been very little – they gave me steroids while I was in hospital.

The surgeons (I had three!) said I could revisit this surgery in about three months time if I really wanted to as there is still some bulging. The operation was very straightforward with controlled fractures to the eye socket and part of my nose. They also removed some of the fat – in fact it oozed out by itself! There is an issue of excess eyelid but that can be fixed. I don’t have a squint and the vision is now clear in both my eyes. I have no external stitches and some bruising but you would never believe I had had just had quite serious surgery performed, thanks, I believe, to the skill of the surgeons involved,

I’m going to finish here because I am getting a little headachey now but this time last week I didn’t think I would be able to watch TV at this stage so I am very happy to report back on my progress!

Best wishes to everyone who has posted on this thread!

Sharon

[george61]

#1067488

I had my Oribital Decompression done 19 days ago. I thought it would be a lot worse actually. I still have a lot of tearing, some swelling and still some numbness in the face that slowly gets better. My vision has really improved. The bruising is almost all gone. I am just sooo happy to be off the steroids now to lose all the weight. Oh and my nose is I am assuming swollen and always feels stuffy and I just now got the go ahead to lightly blow which really does nothing ahaha.

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