[snelsen July 26, 2012 at 10:13 pm Post count: 1909]

#1059234

To SoCal guy. Can you “tell” that your eye is less proptotic and bulging now?
To anyone. I would like to hear who is happy they had OD’s and why. And from people who wish they hadn’t, and why.
Thanks, Shirley

[hoochie July 27, 2012 at 5:07 am Post count: 16]

#1173212

Hi Shirley:
Am replying about the OD. I had muscle surgery last November. I elected not to do the OD for various reasons. My eye does bulge, but not that bad. I did some research on the internet, and found people that did not do the OD had better success with the double vision issue. I just had the lower eyelid surgery 2 months ago. I am pleased with the results so far. My double vision is completely gone and the eye doesn’t look too bad. My vision has improved so much, I only need glasses now for reading. He is monitoring the protopsis and mine has been stable for over a year now. John

[snelsen July 27, 2012 at 6:40 am Post count: 1909]

#1173213

John! Thank you so much for replying. I found the strabismus surgery I had the most wonderful event in my TED life. At this time, after all the procedures I have had listed below, it has been suggested that I would profit from a 2nd OD on my left eye, plus a first one on my right. It is not my appearance that concerns me, it is the inability of my eyelids to close when I sleep at night, and the large amount of exposure (still) of both eyes, despite upper eyelid surgery to lower them (I can’t tell the difference) and completely failed surgeries to raise the lower eyelids. Plus complications with the grafts sites from the palate not granulating in 10 months later!
***What procedure, and what material, was used in your LOWER eyelid surgery to raise your retracted lower eyelid? A repeat procedure of that surgery has been proposed, but with an artificial graft this time
Thank you so much.
Shirley

[socalguy July 27, 2012 at 9:50 am Post count: 12]

#1173214

Shirley, my strabismus surgeon said that the best I can expect is a zone of good vision in the center, that peripheral may always be double. Is that what you’ve seen?

[snelsen July 27, 2012 at 12:23 pm Post count: 1909]

#1173215

To hoochie,
What material was used for your lower eyelid surgery? Graft from palate? From ear? Or artificial material?

To socalguy,
I had my strabismus surgery AFTER my OD. That is not the sequence that is recommended, but I had to have the OD in active phase to relieve pressure on the optic nerve. I had severe double vision in three fields, both eyes, before and after the OD. No double vision caused by the OD.

Then a few months later, I had bilateral strabismus surgery, which completely got rid of all double vision in all fields. I do wear prisms in my glasses, but I do not have double vision with or without them.
It has been my experience that oculofacial surgeons do not do the strabismus surgery. I went to an eye doc who had a large pediatric practice, did many of these procedures on kids, and of course, the “special population” of adults with TED. It was a wonderful, successful surgery and The easiest. Have you had this discussion with anyone? I don’t see any reason why you should have to continue with any double vision if you have the strabismus surgery.
Shirley

[hoochie July 27, 2012 at 5:21 pm Post count: 16]

#1173216

Shirley:
I had a graft from the palate in my mouth. I was awake for the procedure as they instructed me what to do. The worse part was the healing of the graft site. It was quite painful; I was on antibiotics for a couple of weeks. But it has healed nicely now. Just saw the doctor for a followup. He was considering doing a tweak on the upper eyelid, but right now it is a wait and see. I will see him again in January. All in all, I very pleased with the results. Not perfect, but am thankful for my vision back. I wish the best to you. Keep us posted.
Regards
John

[hoochie July 27, 2012 at 5:23 pm Post count: 16]

#1173217

One more thing. I still struggle with exhaustion. I take Flax see oil and some other supplements. But some days I don’t have the energy to do much. It comes and goes. Anyone know how to overcome this lack of energy?
Thanks
John

[Jules July 28, 2012 at 1:50 pm Post count: 85]

#1173218

Yes I can see a defined difference in the eye being more set back into the socket. If I have to have to other on done yes I would do it. Even with the complications I had with the first one. I would just make sure that the team of surgeons behind me know what to look for and how to accomplish the task at hand.

[snelsen July 28, 2012 at 4:03 pm Post count: 1909]

#1173219

Hi John,
I’d guess the exhaustion is not related to TED. Unless the ongoing two year plus stress of vision has pretty much drained your gas tank.

I don’t recall your Graves’ status. Are you on a thyroid supplement now?
I guess the first thing I would do is have my thyroid lab panel checked, then when you have that, plus maybe having hemoglobin and hematocrit, check with a doc, see if any med can be tweaked.

How long has the fatigue been going one? The other reason is that the anesthesia from having the OD, plus the recovery, pretty saps people for a few weeks. You are only two weeks out from that, too.
Shirley

[rapunzel July 29, 2012 at 5:27 pm Post count: 13]

#1173220

Yes, I had orbital decompression on the right eye only (I had the rare condition of having proptosis in the right eye only) performed at the Jules Stein Eye Center at UCLA in Westwood. The surgeon was Robert Goldberg, Chief of the Orbital and Ophthalmic Plastic Surgery Division, did the surgery. He did an amazing job. From what I hear, he’s one of the top surgeons in the world for this particular surgery. I am now eleven years past the surgery and my eyes look great.
He followed up with two smaller surgeries to get the right eyelid to close as much as it possibly could. He is precise and exacting. The results are phenomenal.
I have to say that, since my left eye remained unchanged, it must have been an even greater challenge, since he had to get the right eye as close to its original condition as possible or risk me walking around with mis-matched eyes. I think it’s a credit to his professionalism that people are still shocked when I tell them that my right eye used to look like Marty Feldman’s.
I hope you have the success I have had with this. It gave me back my confidence in meeting people.

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