[DianneW]

#1074890

Hi elf,

I’ve had orbital decompression on both eyes. In my case it was done after surgeries on the eyelids had been done and other procedures (orbital implants) had been done to try to mask the proptosis.

Back in 1996 when I first had this disease, orbital decompression usually wasn’t done unless vision was threatened. That left me with disfigurement issues and exposure issues, and feelings of pressure and some mild double vision looking off to the left. I’d had multiple surgeries for eyelid retraction, but in time as the disease is in the cold phase, fibrosis (scarring) tends to stiffen the eye muscles and continuing damage can occur in some people. So in my case, even though surgery had been done, my eyelids continued to retract.

I wanted just what most people with Graves’ ophthalmopathy want; to look like I did before Graves’ Disease. I knew that was not realistic, but I also knew it was possible to have a better appearance and function of my eyes than I did at present. After the initial surgeries people told me I didn’t look bad, and it certainly could be worse; but I wasn’t comfortable and I wasn’t happy.

Further consultation with my eye surgeon at UCLA resulted in his opinion that newer procedures allow for decompression for cosmetic and functional indications now, not just threatened vision. In my case the eye muscles were not greatly enlarged and so he recommended a procedure that would remove a significant amount of orbital fat, while also removing some bone from the lateral walls of the orbit. This procedure is known for a very low risk of post-surgical diplopia. He used my photos in a study that was done on this procedure, and I’d be happy to email a copy of this study to anyone if they want to email me.

I woke up from orbital decompression surgery and the first thing I noticed was not pain, but a relief from the pressure in my eyes that I didn’t even know I’d been feeling. The surgeon was standing in the room asking how I was feeling and I told him this. He said that was a comment he heard frequently.

The pain from that surgery was minimal, compared to any of my other surgeries for reconstruction for this disease (I’ve had 8 others). It’s done more to help both my appearance and comfort than any of the others. I definitely recommend it for anyone who is serious about getting over the effects of this disease, but I also recommend giving ample time to see how much the disease will reverse on its own.

I’ve seen quite a bit of improvement in people with Graves’ ophthalmopathy if they’re willing to wait five or six years, and that improvement can give a much more natural appearance than any surgery can provide. Once the tissue has been disturbed with surgery there is a certainty that nothing will be totally normal again, so if you can wait a few years, it may be in your favor.

I saw Ski at this year’s conference after not seeing her for two years (or more), and was amazed at the amount of improvement in her eyes. I’m sure she still doesn’t look 100% as she did before GD, but had she chosen to have surgery prematurely, she could have had a lot done that might have been unnecessary.

So in retrospect I’m quite sure that had I waited a few years for my first surgery, I’d have had fewer procedures done and perhaps with a better cumulative outcome. My first surgery was before my thyroid levels were completely stabilized, and that in itself may have been a mistake. It’s now known that becoming hypothyroid is bad for the eyes, and I still had significant levels of TBII antibodies, another probable risk factor for active eye disease.

In summary, I’m really glad I had the orbital decompression done, and I’d choose the same thing in a heart beat. I’m wondering now though if waiting a few years to begin ANY surgeries wouldn’t have given me a better outcome on the whole.

These are issues you can discuss with your surgeon as how they might apply to YOUR case, and as always, be sure to get a second opinion if you are able to. There are so very many different perspectives available on these issues.

If I can answer any specific aspects I’d be glad to, as I’ve had a lot of different procedures done.

Best wishes,

[elf]

#1019900

I would be interested to hear from people who had orbital decompression surgery. What was done, how many follow-up surgeries did you have, are you happy with the outcome. I’m on a waiting list for OD.

[elf]

#1074891

Thank you, Dianne. I understand the necessity of waiting for the eyes to stop movement, or some call it "waiting for the cold phase", or "settling". I had RAI 3 years ago, (diagnosed 3 months before RAI). For the first year after RAI I has those uncomfortable feelings in my eyes, the process was under way, so I didn’t contemplate any surgical involvement. For the last 2 year, my eyes have been settled, no uncomfort, no change. I think (and my orbital surgeon thinks) the surgery is OK now, I don’t think my eyes are going to get better (if you’ve seen pictures of Oriental ladies with Graves that are out there, that’s what I look like). I’m glad to hear that the self-esteem issues are greatly helped after OD. And the fact that the surgery techniques have evolved and the invasion is now very minimal, is great. I’m curious now if I will feel less pressure afterwards – I’m not aware if I have it now, as well.

[Anonymous]

#1074892

Diane: I am 6weeks post op from OD surgery, and about 13 yrs post Hyperthroid RAI, still have severe dbl vision, my Dr. is now considering IV steroid treatment to help the dbl vision, can I expect any relief with the IV treatment?

[Author]

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