[Ski]

#1066457

We do understand, believe me ~ the way we appear to others is extremely important, and it can have devastating effects on your spirit overall.

We are told that, if you want to pursue corrective surgery for proptosis (after you’ve reached the cold phase, which it sounds as if you have), decompression is the one to start with. It may not do everything you want, all at once, but it can certainly reduce or remove the proptosis. The next step would be muscle (strabismus) surgery (if you end up with alignment issues that need correcting), and finally the eyelids, to make sure they are in the correct position. This is because you want to be sure that, once you reach the end of the process, you are able to bring as much relief as possible and return the look to as normal as possible. Remember that it’s going to be tough to return your look to exactly what it was ~ take a "before" picture to your surgeon to help guide them. Still, you will end up with "better," if not "perfect."

You shouldn’t be risking your sight, in the hands of an experienced surgeon, and I would also point out that discomfort, dryness and pain, are NOT small issues when it comes to your eyes. If you experience chronic dryness you can end up with corneal abrasions or ulcers, which CAN risk your sight, so this is NOT "cosmetic" surgery. You have a condition that needs correcting.

Please do a search on the board for some key words ~ decompression would be one ~ and you will find a GREAT deal of information from people who have been through it. I haven’t, but I know many who have, and to a one, they are pleased with the results.

I wish you luck! We usually recommend doctors affiliated with ASOPRS (http://www.asoprs.org) because they have specific training in these exact procedures, but since you are already connected to a surgeon you trust, that’s probably the best place to start. Let us know how it goes.

[leggymummy]

#1018684

Hi, I’m not sure how to post my own topic as I’m a new user. I’m 30 and from the UK and have had thyroid problems and graves disease since 2006, with the associated eye problems from the graves. I was desperately ill when I was finally diagnosed and had two of the radioactive pill to burnt he thyroid down. I did not cope well with the change of appearance and unfortunately became a mess emotionally for many years but this was not the only issue I was dealing with as a young girl. Anyway, I am so glad to have found this site as I feel completely alone right now, with regards to who to talk to about things. My thyroid is ok for years but my TSH level is mostly always too high. I don’t sleep I have nightmares every night, I have not ever slept well. I had a surgery eight years ago on the NHS where he went in through the nose and removed fat to give my upper lids a crease, it did reduce them somewhat but, as a fashionable young woman I have to admit I was upset it did not reduce them further. It did correct the left lid from flicking up and reduce some of the pain I would feel from time to time (but worse on aeroplanes) I have been called names by groups of people I thought were friends, strangers, children. I only get it now it again now but I have never gotten over this, I just cannot accept my big eyes.I think they sit at about 5-6 mm further out, more noticeable from the side I would say. I am writing all of this because I am going to see the original surgeon (on a private basis) about orbital decompression, but I do feel very very unsure. I am depressed with my eyes, I have had other surgery done around my face to get a better balance the most recent being a very invasive and painful cheek lift with endotines. I don’t have double vision, I do get sore eyes mostly dry. Am I risking my sight or life by doing this? I know it is superficial but I have to live my own skin and I will never feel comfortable, unless I have another try at a reduction of the bulging, people are so cruel I am not strong enough to cope but I do want this for me, too. I have seen there have been advances in recent years it has been eight years since my surgeon (who is one of the best and a nuro-surgeon too) did my original op. Thanks so much sorry about the posting thing I am tired lol, and thanks if you read this whole thing !! xxx

[leggymummy]

#1066458

Hi, thanks for your reply! I meant 1996 not 2006 lol I have this for a while. I am in the cold phase on TED, but mine got treated as one whole thing, not two different problems. I think the UK is quite good but probably bot as advanced in terms of treatments? I suppose what I wanted to ask is that is the OD seems very drastic for somebody like me but this has become a deep seated issue, I have been thinking about this op for eight years on and off. I have no double vision, and the top lids are fine, the lower lids have a retraction (so you can see the lower roundness of the eye making it seem bigger) is the recovery bad and could I be making things WORSE rather than better? I would say my eyes sit half in half out, and I hate it. I just wanted to ask if you knew the chance of me making thing worse rather than getting the proptosis reduced? Thanks so much xx

[Ski]

#1066459

I don’t think there’s much chance that decompression surgery could make it worse. It’s pretty common for us to minimize our issues ~ half in, half out, that’s not normal, and I’m sure it creates other complications for you. For the most part, while decompression SOUNDS really drastic, there are different ways they can do it, and they have come up with some really interesting variations on the theme (removing less bone, removing only fatty tissue from behind the eye, things like that), so I definitely think you should explore your possibilities. Talk frankly with your doctor about ALL of your concerns.

[leggymummy]

#1066460

Hi Ski thanks again for your advise, I did not realise there were variations of the surgery that is a HUGE relief as I thought the bone being burred away was the only option. You are right, I do look normal, but you can see I have had graves (I hate the word normal, what is normal anyway!?!) I think of all the autoimmune problems, thyroid imbalance is the worst to deal emotionally if you get graves also. It seems there is the dreaded OD operation OR eye drops, with not much middle ground for Men or Women who cannot cope with the change of facial appearance for whatever reason. I really think this middle ground (no vision problems but with obvious protrusion) is a hard place to be as too here in the UK it does come for free and it is not cheap. I hope I have nice big orbits (to match the eyes lol) so the surgeon has space to move around! I will post some before and after so I can help others who are in the same situation decide maybe. My appointment is March 15TH so I will keep checking in with nay queries, thanks for your eply i really do appreciate having somebody who truly understands xx jo ” title=”Very Happy” />

[snelsen]

#1066461

I just had an OD (Feb 2) The recovery was easy. I raised the head of my bed, used a lot of ice. My eye is not bulging at all.
I do have double vision and I still have it. I had the OD because there was pressure on my optic nerve. Unfortunately, I am still probably in the inflammatory phase, but optic nerve issues are an indicator to for an OD to preserve vision, even it it is preferable to do it in the fibrotic phase.

as you surgeon will tell you, there are several different approaches that are used. a lot of those differences are based on where they trained and what they learned. Of course you want the surgeon to do the approach that he/she have chosen to do. It is fine to want to look as nice as you can, and it is clear that you are not happy with the appearance of your eyes.
Of course any surgical procedure has risks, but I would have an OD again in a heartbeat. I think there has been some great pioneering work done in the UK on TED. I am not sure what the NIH system says, but I suggest you get a second opinion if that is possible. But that is very common here. In my case, I saw several surgeons, and it increased my confidence in having OD done. Hope this helps a bit.

[leggymummy]

#1066462

Hi, Thanks for your reply I am really glad your recovery is going well ” title=”Smile” /> Do you have much swelling? I can remember from my operation my eyes were swollen (I have had fat remove via holes in the nose 8 years ago) and my eyes were painful for about two weeks then I was fine. I am more scared of having double vision, but I think my original operation held more of a risk than OD for double vision and the original surgeon who is highly recommended is seeing me again, With that said, I am also seeing another surgeon who does my type of "cosmetic" proptosis reduction, the bulging out. I have wrestled mentally with myself with said daily, because you see yourself everyday so the strain is huge, I have never accepted it. I know already I will go ahead and have surgery but I do feel selfish because of the risks and my two young kids, and long suffering Husband! Would you keep in touch with me and update me on your progress? Then I know how much help I would need as I am still BF my youngest Son and I have a very hyper eldest so knocks will be expected. Thanks again hope all is going well!! ” title=”Smile” /> Jo x

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