[hope1]

#1058736

I am now in the stable stage of Graves disease and will have orbital decompression on both eyes . My disease is in the severe category-signficant protusion, eye discomfort , edema, diplopia at all gazes. The procedure is both medial and lateral decompression. Has anyone seen Dr. Raymond Douglas at the University of Michigan for decompression surgery? I am really impressed with him. However, I did have eyelid surgery at another large medical center to protect the corneas which was not really successful (eyelid still does not cover the eye and appearance).

I would appreciate hearing from anyone. Will my eyelid edema improve? I look like I have had some trauma to the eyes. I am not scared of the procedure-rather welcome it. I hope to be able to read again and resume some of the things I miss doing.

Best to all of you at Christmas-bless and I hope all of you have a good year ahead of you. ” title=”Very Happy” /> ” title=”Very Happy” /> ” title=”Very Happy” />

[snelsen]

#1169700

I think he spoke at our conference last year. You are at a wonderful place, which has cutting edge well known docs in TED.
Regarding your eyelids–do you mean that they are SWOLLEN? OR RETRACTED? THe eyelid surgery I am familiar with is surgery to lower the upper eyelids (to cover more of the cornea like normal eyes) and lower eyelid procedures, which are more challenging, involving either a graft from the hard palate to the lower lids, or an artificial graft. But in any case, any eyelid intervention or surgery should be done AFTER your OD. For your eyes will not protrude as much, and the measurements for eyelid surgery will be completely different that the ones taken pre OD
shirley

[hope1]

#1169701

The eyelids are swollen and retracted. I had both eyelids done at another medical center as the docs felt an emergency measure was necessary to protect the eyes given the protusion. I knew it was out of sequence but was advised to proceed to avoid damage to the corneas. The results were quite asymmetrical but did reduce the pain since my eyelids could no longer cover the eyes. The cosmetic concerns took a backseat to controlling the discomfort.

I cannot say how much I appreciated you taking the time to respond. This disease is a long haul for all of us. I did my research carefully re the choice of U. of Michigan-it feels like a good choice for me. Nonetheless, it is good to hear from others positive feedback.

I will check in after both procedures. Thanks for the support.

[snelsen]

#1169702

Just a quick note back to you. This is a great place for good information and for support. Of course, now I understand your situation. I have very severe tED also. It has been a rough two years from hell. No other way to describe it.
I had one OD, and if you look it up, I think I chronicled most days of the post op course. There are some really helpful thoughts that you might appreciate reading. One of the biggest overall thoughts i want to tell you now, is that the post op can be fairly easy, comfortable and ok. Two of the biggest things to do to make that happen, are elevate your head of bed, and use cold compresses a lot. i think I elaborate on that in my posts. I am super tired, even though I think I am three hours earlier than you are (I live in Seattle0 so will sign off for now. My OD was very successful, saved my vision, and eye back in my head. You can see at the bottom of my post all the procedures I have had done in the past two years or so. I am still post op from the last one
good night, Shirley

[hope1]

#1169703

I am scheduled for two orbital decompressions in Jan. Just found out my potassium levels are abnormally low . They cannot proceed with the surgery until the potassium levels stabilize. First surgery is Jan. 4 out of state. Do I stand a chance of the potassium levels increasing enough prior to Jan. 4? I have waited a long time to proceed.

I am taking prescription supplements and started a potassium rich diet. I am at a loss to know if I should cancel plane tickets, surgeries etc. My primary care doc thinks it will be ok, but I don’t want to cancel with my surgeon at the last minute. He sees alot of Graves patients.

[Kimberly]

#1169704

Hello – How frustrating that you are having to deal with this at the last minute! I’m personally not familiar with how long it takes potassium levels to rebound. I would let your surgeon make the call on whether to keep the original appointment. Wishing you all the best!

[hope1]

#1169705

Had two orbital decompressions-right and left eye in the last two weeks. As others mention, the pain is manageable. I do find that my eyes are sore moving side to side. The left eye required alot of surgery so more discomfort with this surgery. The results were pretty impressive-but my eyes are asymetrical in appearance and I have a long way to go yet.

I do now have diplopia on a constant basis. I was able to focus for a few hours each dayprior to the surgeries. I wear a patch each day-the assessment was that I would not benefit from prisms. I had tried them twice before and had two docs separately provide an assessment-so no surprise they don’t work for me. My advice to all is to realize each of us is unique and sometimes you do not get the magical one time fix. But there is more that can be done- the disease takes alot of patience.

My eye muscle surgery is scheduled for March. Then eyelid surgeries several months later. I may need multiple eye lid surgeries. I am counting the days until the eye muscle surgery-I feel a bit trapped in the house. I am reluctant to do much driving, go to the office etc. Perhaps my confidence will grow re this.

For all my gratitude, I miss the way I used to look. Two and half years with the disease and five surgeries so far.

I would appreciate any comments/advice re the eye muscle surgeries and eye lid surgeries. Has anyone done further cosmetic repair work?

[snelsen]

#1169706

Eye muscle (strabismus) surgeries=100% great.
My eyelid surgeries, well, there is a small difference meaning improvement, in how far down they come, ie, little less retracted. But I cannot completely close my upper left eyelid. Big problem. drifts open at night, I have to lube, drop and tape it shut.
My lower eyelid surgeries? After much research re success rates, I chose palatal grafts. One eye is great. I don’t see much improvement in the other eye, and I think the surgeon made a mistake. took too much tissue (down to the bone_) and it is not healing well. Work in progress.

I am entering three years out from TEd. Light sensitivity, tearing of both eyes, and dry eyes, plus nighttime drifting open of one eye for sure, plus maybe the other one. I feel very compromised by this disease. Having said that, I spoke with three people who had marvelous outcomes from palatal graft to lower lids.
Most chose it instead of artificial material, because of rejection rate, plus the eyelids tended to fall back down after a year or two.
Shirley

[hope1]

#1169707

I understand how you feel and always identify with your comments, Shirley. I have learned from your experiences, mine have been fairly close to yours. I have tried not to let the disease define my life-but it does impose limitations despite the best of attitudes.

My initial eyelid surgeries-pretty much sucked to be honest. The eye felt better but the appearance was less than good. It was frustrating to have the surgeon tell me that the results were good and my local docs thought they were less than desirable. One eye open, one mostly closed. I was told they would get better over time-to be honest-they never did. I was so optimistic initially.

Michigan will redo the eyelids-they did a great job with the orbital decompressions. I had spontaneous globe prolapse with my eye falling behind the lid on random occasions. I had to laugh at this point-how horrific for others to see this. So, I would guess I will need a fair amount of work to have a normal appearance.

Have you thought about trying another medical center for the surgery? I am believer in moving on when you are not satisfied with the results. Seems like your experience has been difficult with the eyelids surgeries.

[saltzman18]

#1169708

I have had 4 decompressions last year at U of M by another Dr. I think they are the best!

[snelsen]

#1169709

Hi Saltzman18,
I am interested in knowing if you lived in Michigan when you had your procedures? How do you get care if you have come from far away? Do you stay a fairly long time for post op appointments? That is what has kept me from going someplace else. My question applies to anyone else who may have gone someplace far from home.
Shirley

[saltzman18]

#1169710

I live in Michigan 150 miles from Ann Arbor (U of M) I stay at a local motel for the operation night and come back in a week or so for a checkup or another decompression surgery and then in a month I think unless something is not right like not seeing reds correctly. – a sign of optic nerve compression. The Dr gave me his cell phone number to call if needed.

[hope1]

#1169711

I am over 10 hours away from Michigan and Kellogg Eye Center. I stay for several days after each surgery. I had one orbital decompression on the 4th-so I had the pre op on the 3rd and stayed through the 6th for a post op. Then I drove home and returned on the 10th for the next pre op, surgery on the 11th. I either drive or fly to Detroit. My daughter shops for the tickets well in advance so I purchase them as inexpensively as possible.

I also did the same with Mayos. You have to be prepared to stay several days. It does add to the cost, but worth it to me. I want a high volume provider-doing alot of the procedures, with a team concept ( endo, opthalmic reconstructive surgeon, etc.) Aftercare has not been a major problem. I either return for a quick visit or they arrange a visit that coincides with the next surgery. The clinic at Kellogg is on a Friday so it helps that I can drive back on a Sat.

They give clear instructions about when to call if anything becomes problematic and the staff is great about responding to you.

This has worked well for me, it may not be an approach for everyone. Some may not be comfortable not having someone close by to confer with. I tried to access care in my home state but had limited luck. Never did get diagnosed until I went to Mayos-that was well over a year later and the damage was done.

[hope1]

#1169712

Can you share some of your experience there? Why did you need four? Did they not do enough on the first two?

How about eye muscle surgery and eyelid surgery at Michigan? I have the next round the first week in March and eyelid surgery the end of April. I am hoping to come out of this with some vision and improved appearance.

[snelsen]

#1169713

hi Hope, how are you doing after your orbital decompressions? I was thinking about your comment about eyelids. I am wondering if your eyelids will begin to be less edematous, now that your eyes are not popping out of your head!
It will be easier for them to be more natural, therefore I hope your eyelids are less swollen. And, regarding eyelid surgery, i think that the results are usually excellent for the upper eyelids which are retracted, and I have learned that it is a pretty easy fix if they are lowered too much. For the lower eyelids, well, you have heard my saga. But I know two people who have had marvelous luck with lower lid palatal grafts, and it really helped with their return to looking normal.
Anyway, your thought have meant a lot, thanks for continuing to write as we slug through this disease.
Shirley

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