[jmatchet]

#1017860

Just found this BB and am amazed at all the information that I wish that I would have had access to the first time I was diagnosed with Grave’s disease. Unfortunately, I had the radioactive iodine treatment in 1995 and in 1996 began to have the eye bulging caused by Thyroid Eye Disease. Back then, I had to go to several opthamologists before a doctor finally diagnosed my problem. It was a very daunting experience. My hormones were out of wack and my appearance changed for good overnight. So many years later, I still have many side effects from Grave’s disease that are unpleasant, but manageable (I guess). I just have had to accept some things such as weak, rigid, ugly nails, palpitations every now and again, bulging eyes that cause dryness, to name a few. Try to see the bright side of things always. At least, this uncureable disease is manageable with treatment and meds.

Last week, however, I experienced more severe dry eyes than normal and went to see the doctor as I thought I had contracted some eye infection because of the severe discomfort. What the doctor saw was not an regular infection, but instead what he called corneal regression? Evidently, the dry eye symptom is causing some reoccurring problems that, in the long run, can cause more damage to the cornea For this reason, the doctor recommends that I consider orbital decompression in my right eye, the eye that bulges the most and in which the doctor noted the corneal damage

The doctor has briefed me on some of the risks and I will be returning to see another specialist next week for a second opinion and will ask more questions. Until then, just wondering:
1. Since my eyes do not have severe protrusion, how likely will it be that the operation will create a problem with double vision?
2. If it does, how long will I have to endure this discomfort before followup double vision surgery? Will I be able to work during this time? (my profession requires lots of reading)
3. What is the likelihood of severe assymetry? Of course, my eyes are not perfectly symmetrical now, but I certainly do not want it to be much worsened.
4. Any general recommendations from those who have had this kind of surgery? Any advice on further questions I should ask the doctor?

I have read some information from the board and realize that each person responds differently and there are many factors to consider, just trying to get some general information. I guess I am a little anxious about this procedure.

[snelsen]

#1061344

Hi, welcome to this great board. I am glad you are getting a second opinion, and your questions are good.
In my long battle with TED, the phrase corneal regression has not been mentioned. But corneal exposure, the risk for corneal abrasion, has been mentioned during the whole course of TED. Because of continuing and increasing exposure of the cornea, combined with the dryness of the eyes, related to the fact that biological component of our tears produced from the lacrimal glands, are not efficient, thus not bathing our eyes and keeping them moist like normal eyes. used in relation to TED. Thus the importance of using artificial tears, gels and lubricants.
I have also heard that corneal regression can be a complication of LASIK and similar surgical procedures.

But the important thing is that there is concern about your cornea, and from what I understand in your email, the OD is recommended to make more room for this eye to recede back in your head, thus having less exposure to the cornea.
This may have developed over time, since you seem to have active TED in 1996.

I had a OD during the active phase, cause there was pressure on my optic nerve. I know that double vision is listed as a possible complication of OD, and I think there are people on the board who did have this experience, and subsequently had strabismus surgery, which is a relatively simple surgery (compared to OD) to move the muscles of the eye to eliminate the double vision. In my experience, I had severe double vision before my OD, and it was no worse afterward.
My eye was protruding, not badly, and it is now less protruding than the right eye. But the OD saved my vision by relieving pressure on the optic nerve.
So, for my non-professional thoughts regarding your questions, based on what I have learned about TED plus my own experiences. Your questions, and my responses definitely are simply additional thoughts to add to your questions for the eye surgeon:
1. I am not sure if the risk of double vision for OD is related to the degree of protrusion. Ask the surgeon this question. What I do know, is that there is that possibility.
2. Whether any double vision would interfere with reading, is always dependent on which muscles are affected (either by the process of TED-or surgery. So ask which sides of the eye socket would be worked on to make room for your eye.

Before the OD, I had severe double vision looking straight forward, up and moderate double vision looking to the sides. But the superior muscles of the eye (which control the vision looking down, as in reading) were not affected at all, so i could always read, or use the computer. But I had to have (and still do the computer lower.)
3. Do ask this question, but he/she might not be able to give you a firm answer. Depends on how much work they to to have your eye recede. So my thought is that there will still probably be a difference. I know my eyes look different, one is out more than the other,and it is not noticed by anyone.
4. Ask if this eye can be maintained by eye drops and lubricants instead of surgery. Ask if your cornea is damaged now, to the point that there is concern that you might need a corneal transplant at some point, and if this is the reason for the OD proposal, and if the expectation is that it will take care of the problem.

If you decide to proceed with OD, there are several posts by me about my experience, and you are welcome to ask as many questions as they come up. Take it one step at a time, and do write again.
Shirley

[jmatchet]

#1061345

Thanks so much for taking the time to reply. I will definitely look up your other posts.

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