[oahz]

#1059563

hello all. Let me first introduce myself.

I am a 24 year old male. I do NOT have thyroid issues. however i do have proptosis on my left eye due to an early childhood injury. It is 1-1.5mm more than my right normal eye which is at 19mm. it does not close up completely during sleep. I have seen several oculoplastic surgeons already. got mostly discorded opinions and many questions left forgotten to ask.

anyway, i hope that this thread will provide me with the information i need from patients who have underwent decompression surgery.

these are the questions i can think of now but there may be more so please so not neglect this thread.

1. which wall would your doctor recommend me to remove? lateral, medial, or medial and floor? this was one area of disagreement from the doctors i have seen.

2. if i remove part of the lateral wall, as recommended, wouldn’t there be a hole in the side of my skull? so what would happen if I push on the side of my skull?

http://ars.els-cdn.com/content/image/1-s2.0-S0901502709011333-gr2.jpg
http://ars.els-cdn.com/content/image/1-s2.0-S0901502709011333-gr3.jpg

the above pictures show ct scans and a 3d recreation of a post lateral wall removal skull. there is clearly a hole. i thought the surgery make use of sinuses?

3. my doctor told me that depending on my anatomy he may or may not have to remove the “rim” and then put it back. I don’t know what he is talking about. again this is referring to the lateral wall decompression.

4. is the surgery accurate? will it get the left my to 19mm to match the right one?

5. are they able to check and review the amount of reduction during surgery? meaning if the surgeon removed some bone does he check and compare my eyes to see if it is enough. if not, he remove some more. is that how it is?

6. do i have to change my lifestyle after the surgery? are there things that i shouldn’t after the surgery. i play basketball. do i need to stop?

7. what is the purpose of the orbital walls. why is it that we can just remove them? what re sinuses?

8. do i need any follow up surgery? my upper lid is not retracting, so that is fine. but i’m not sure about the lower. i heard that the lower lid will improve immediately. is that true?

thanks

[Kimberly]

#1175772

Hello and welcome! Hopefully, you will get some responses from our members who have been through orbital decompression. However, keep in mind that this site is for people who are fellow patients, not doctors — so we are not allowed to give medical advice here.

Many of your questions are very technical and can best be answered by a medical professional. There are multiple types of orbital decompression, with risks and benefits for each approach, and your own doctor is in the best position to make a recommendation. Also, I do not know if it makes a difference if the protrusion is due to injury versus thyroid eye disease.

Take care!

[oahz]

#1175773

yes i know that they are a bit sophisticated. but please answer the ones that you can.

[snelsen]

#1175774

Hi, I have a LOT of cooking to do this afternoon, so not a lot of time.
Thought I’d address a few of your questions.
All from my own experience.
6. After you fully recover, you can do anything you want to do. I began to swim and jog 3+ weeks after surgery. I’d do what the surgeon says, cause they know what the did. But the global answer is you are golden to do anything you have always done after you heal.
1,2 and 3
Which wall? That depends on what the surgeon sees on the orbital CT, and they will get an MRI if needed. Generally, the orbital CT gives them the info needed. Because the population of this forum has TED thyroid eye disease, the rationale for what walls to do depends on the degree of fibrosis of the six eye muscles, the degree of orbital fat, and the deficits we have. None of this seems to apply to you, so I would ask each surgeon why they choose a certain wall. If they have a choice, I’d guess they would do lateral wall, cause there are fewer nerves there, including the optic nerve, to be careful of. It also depends on what they like to do and are good at doing.

Lateral wall-I had the lateral wall removed, lots of folks do, there is no hole in my head, the CT’s you referenced do not look at all like the CT’s I have seen, which show the muscles, orbital fat, etc etc. Another good question for the doc.

5. No. You’ll have a general, all the swelling has to go down post op, and you won’t know exactly the measured outcome until about 2-3 months later.
3. Not sure, ask him.
4. See lateral wall above. It will probably be a heck of a lot better than it is now. Lots of “normal eyes” have different measurements, they just don’t know it.

8. Our TED lids are retracted as part of the disease process. Ask the doc, but it seems to me that your lower lid is retracted cause of your proptosis,
so ask if is likely it will accommodate to your retracted eye. They may/may not know.
7. The orbital walls provide a place for our eyes, I guess that is the purpose of them..
Gotta cook, two complicated recipes, welcome to the forum.
Yes, Kimberly is right, it will be interesting for you to hear from us, but if you ask these specific questions of the surgeons, you probably will be much more informed.
******not all surgeons do the same procedure, and do not expect total concensus.
Shirley

[oahz]

#1175775

also, concerning insurance, does anyone know if there is a limit to how man doctors one can see? i’ve already seen 5 different doctors, and on the 20th i will see my 6th and final doctor.

[snelsen]

#1175776

You are welcome, oahz.
THere is no way for anyone to answer this question except your insurance provider. I think I gave you quite a bit of useful information for you to collect for questions. Probably a good idea to do that for the sixth doctor.
Ask them the pros and cons of his/her suggestions, and the pros and cons of the other suggestions you have had from other docs.
Shirley

[oahz]

#1175777

thank you shirley.

did you have lower lid retraction as well? if so, did it improve subsequently after the lateral wall removal? or did you have to do a follow up surgery to lift it up?

are you able to close your eye now, if you didn’t before the surgery.

was your surgery accurate? i.e. your eyes now match? how much reduction in each eye?

[snelsen]

#1175778

I am not sure how much my upper eyelids are lower. They are still healing, I have not listed those procedures on my data below.

I know many people who had successful lower lid elevation surgery. But I wasn’t one of them. I have grafts from my hard palate, and on retrospect, not a very good surgeon. But others who have had the same procedure, had great results.

Again, cause I have a very severe case of TED, I suspect my experience does not reflect yours. And…): No, neither eye closes completely at night, and I do have to tape them closed. I probably need an orbital decompression in the eye that has never had one, and another one in the eye that did have one. Right now I am sick of surgeons, and surgeries, so am taking a break from making these decisions.
Shirley

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