[Anonymous]

#1039167

I am considering having eye surgery for a moderate case of TED. The whole thought is frightening to me. My main problems are some pain and pressure, swelling, and mild to moderate bulging. Although I’d love to be back to normal, I’m beginning to wonder if that is even realistic. I have a good neuro opthamologist, and he says I’m a candidate for surgery, but since I have a mild to moderate case, it’s hard to say if it would be worth it, particularly because of the risks of surgery. I am interested in hearing other people’s experiences with the surgery. Did it help? Was recovery long and painful? Thanks.

[Anonymous]

#1127072

Welcome, gays.

Most of the people I’ve talked to who had the orbital decompression surgery are very pleased (I haven’t had it myself), and say the pain and recovery isn’t much worse than for some of the lid retraction surgeries (which I HAVE had). Jake and Denise and others can give you more details on their experiences. I believe for most people the surgery is done under general anesthesia, with usually only one night in the hospital. You probably won’t need more than two weeks off work, unless your work is stenuous or your case unusual.

After the orbital decompression, your doctor has probably told you it’s likely you’ll need surgery for lid retraction and possibly strabismus surgery for double vision. There are many procedures used by different doctors, so find out which ones your doctor recommends, and those of us here who’ve had them can tell you what it was like.

There are, of course, possibilities of complications with any of these surgeries. I had cheekbone implants to hold up my lower lids, and one of them became infected and later had to be removed. There was lots of tissue deterioration, so the area had to be filled in with tissue from other parts of my face, and a hard palate graft (from the roof of the mouth) was done to provide a graft to raise the lower lid on that side. My upper lids were done at the same time, and they did not stay in position, and the left eyelid is higher than the right. I’m having more surgery done May 18th at UCLA to repair the upper lids. This time the doctor is using a graft from a cadavar heart muscle (pericardium), and he says this procedure has been so successful for him it’s all he uses now. At the same time I had the fat pockets removed from above and below my eyes, which I had to pay extra for since it’s considered “cosmetic” and not covered by most insurance. That part turned out perfectly.

I had severe chemosis after the surgery on the upper and lower lids, and that was very painful, lasting about 3 weeks. This happens to some people. Chremosis is a swelling of the membrane surrounding the eye, and a yellowish fluid pocket actually is visible. I was back to work as soon as this resolved, but would have been back after 10-14 days if this had not occurred.

I was a borderline canditate for the decompression, but the doctor decided against it. My eyes actually went back in some on their own since then, so he’s glad he made that decision. And in spite of the complications, I’m really glad I had the surgery done. Most people don’t have these problems, so they’re even MORE glad.

My first surgery was done under local with sedation, or “Twilight” anesthesia. I was out for five hours, and had no problems. The second surgery to remove and repair the infected implant was done under a general, and I spent one night in the hospital. I was able to work again in ten days.

Hopefully some others will answer you who have even more positive information. I think it’s good to know the range of possiblities, but remember most of the complications will never happen to you.

Hope this helps.

Dianne W
NGDF Asst. Online Facilitator

[Anonymous]

#1127073

Hi Gay,
I had three rounds of orbital decompression. I had
two, 3 wall decompression surgeries and a 4 wall decompression/
craniotomy. In my case I had no outward signs of the eye
disease bulging or swelling but my vision was
severely threatened behind the eyes by my optic nerve
with uncontrollable swelling there.

For me this surgery saved my sight. You may want to discuss with
your neuro-opthalmologist what other treatment options are also available to you and maybe get a second or possibly a third
opinion. The eye disease follows no particular pattern and
different doctor’s have different views on how to treat it.

What stage are you with your Graves’ disease? Most doctor’s
tend to wait till for surgery till they feel their
patients Graves’ disease is under control.

On the average, for me I was hospitalized 4-5 days. Other people I have talked to were in much shorter then me. What I recall was some numbness and swelling, bruising and sleeping with ice packs around the
eye with my head elevated. I looked like I had a shiner for a
few days but it faded away. I had an occuplastic surgeon do the surgery and there are no scars today or you can’t even tell I had the surgery done.

After those surgeries I had the strabismus surgery. I never neeed any eyelid surgery as I had no bulging or swelling.

Feel free to e-mail me if you have any specific questions.

I underwent 5 eye surgeries in a year and a half and it has been almost two years now and the eye disease basically burned
itself out. My doctor’s do not forsee me needing any more surgery and everything has been stable these days.

Dee

[Author]

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