[hope1]

#1058629

I am in the stable stage of Graves eye disease. Thyroid has been removed, two eye lid surgeries, damage to corneas by exposure. i am still hyperthyroid, medication has not full stablized this condition yet.

I am continuing to encounter further deterioration of my vision and increased pressure and pain in the eye area. I now have double vision for a good portion of the day and the eyes have limited vision to far right and left and up and down. Sometimes straight ahead. I was advised that the disease would probably stabilize-which has not been my experience. I will probably have to go to a patch over one eye to read fairly soon.

Throughout this process, I have been able to continue to work which has been a healing process for me emotionally. So I count myself lucky. I would appreciate any advice that others could provide. I am slated for a cosmetic procedure to reduce swelling under the eyes. Given further deterioration, I am concerned this may not be the correct sequence of surgeries.

[Kimberly]

#1169097

Hello and welcome – Surgeries are generally postponed until the stable phase is reached, unless vision is being directly threatened. Most docs define the "stable" phase as having no changes in symptoms over a period of time, but it sounds like you *are* still experiencing some changes.

The usual order for eye surgeries is orbital decompression for "bulging" (if needed), strabismus surgery for double vision (if needed) and then finally blepharoplasty for eyelid retraction and swelling. It might be helpful to get a second opinion regarding having your scheduled procedure done at this time.

By the way, if your eyelids don’t close all the way, this procedure is reconstructive not cosmetic…don’t let yourself get short-changed by the insurance company!

[snelsen]

#1169098

I second what Kimberly has said. You will see at the bottom of my post, my experiences with TED.
I can tell you that I walked down this same path. I was followed by a neuro/ophthalmologist through the active and cold phase of TED. Also by an eye surgeon who "does" strabismus surgery. I was measured and tested frequently, regarding my double vision. Prisms were tried, but they did not help me at all, although they help others sometimes. I ultimately had to quit my job because of double vision (read a lot of moniters and screens with lots of numbers on them)The double vision was the thing that was most crippling and life changing for me, and the strabismus surgery, when I could FINALLY HAVE IT (meaning my eyes were not changing much anymore, both by my report and objective measurements,
anyway, the strabismus surgery was WONDERFUL, MARVELOUS and helped me feel sane again. No more double vision.

It sounds like you are not in the "COLD PHASE" or inactive phase of TED yet. Having said that, I encourage you to think twice about your cosmetic surgery, and get yourself to a good neuro-opthalmologist, to check your vision with visual fields, and other testing. In my experience, I had eye pressure, eye pain, and loss of vision (which I did not recognize at first on my own) and need a medically necessary OD (orbital deocmpression) to SAVE my vision. Be safe.

Most of the procedures we end up needing as a result of TED, are medically indicated. It is true that oculofacial surgeons to tons of cosmetic stuff, but you will pay entirely for anything that is coded electronically as cosmetic.
In summary, I am worried about your changing vision. Do write again.
Shirley

[hope1]

#1169099

Thanks to both of you that sent responses. It confirmed my thoughts about my current status and gave me the courage to push forward again and contact my docs. I was told by a major medical center that I was probably stable . I had done my homework- carefully choosing a team of experts. However, this disease will take many paths and I have evidently not made it to the cold stage. You have to trust your instincts .

Thyroid levels are not stable and have not been since they removed the thyroid, so they are going to now work to address this issue. I have two appointments coming up. Of course, I am scared to continue to lose ground. The vision issues are becoming signficant enough to interfere with my work and just about everything else.

I am evidently in that small percentage that does not stabilize after removal of the thyroid. It helps to know that there are some long term remedies as you described- gives some hope for the future.

[hope1]

#1169100

I have wondered about orbital decompression given my vision loss, protusion, and pain. My doc sees this as an absolute last resort but other physicians seem to approach this option differently. I would appreciate hearing from others when they were advised to proceed with this surgery.

[Author]

Posts