[snelsen]

#1059327

Hello everyone, I had Graves many decades ago, and developed TED many decades later. I did not even know about TED. My eyes were changing, and eye docs continued to say it was my glasses. After 1K worth of new glasses, and continuing vision problems, I went to an optometrist, who took one look at me, and told me I had TED. By that time, I had severe double vision, and had to resign from my job as a recovery room nurse, for I could not read the computer.

Now I am in my third year of TED, with NINE (and I absolutely do count each eye as one) surgeries.
In addition to dry eyes, bulging eyes, photophobia, double vision in all fields except down, I had optic neuropathy, so had to have an left OD, probably still in the active phase, who knows? After the OD, I could not close my upper eyelid. I have had to tape it closed at night for 3 years now.

A few months later, I had strabismus surgery for my life changing and terrible double vision. IT WAS WONDERFUL. Easy surgery, and immediate relieve. Relieve from the double vision, but also from the terrible spasms in my scalp, neck and shoulders as a result of tipping my head in unnatural ways to see.

Upper eyelid lowering for retracted lids was next. I could not tell the difference, one way or the other. The procedure was easy, but the outcome neutral for the lids, and for some reason, then my right eye would not stay closed at night. So I have had to tape them both closed, with very expensive tape that I order online. Thus, I can’t see at night.

Next, after much research and a 2nd, 3rd and 4th opinion, I agreed to have grafts from my hard palate to my retracted lower lids. All agreed that if my lower lids were raised, the situation with my eyes not staying closed at night would be resolved.

Last October, I had grafts from my hard palate to my lower lids, two weeks apart. The graft site was supposed to heal in 10-21 days. It has now been nearly 11 months, and one graft site still has not healed. The palatal bone developed Class 1 osteonecrosis, and I have been being seen and closely watched by a team of dentists at a university for this situation.
Outcome? Negative. Both lids are still retracted, and if anything the graft tissue has made the lower lids “stiff.” So I am worse off than I was before this complex and painful procedures. The whole thing has been a nightmare.
I chose the grafts from the palate because the research said they had much more success than artificial grafts, or grafts from the ear.

Now, three surgeons propose and OD on each eye. One is slightly protruding at 23. There is a lot of corneal exposure because of retracted eyelids.
At this time, I just can’t bear to “go there.” The other proposal is to do the upper eyelid surgery again. The 3rd and 4th surgeons say that the first upper eyelid surgery did not lower my eyelids at all, and the photos document this.

So, next week I will have bilateral upper eyelid lowering surgery, with the goal of maybe have one eye stay closed at night so I don’t have to make myself blind every night when I go to bed. It is not that easy to tape your eyelids closed.

I wear tinted glasses, with prisms,and my vision is good. But I sure would like to simply go to bed, shut my eyes, know they will remain closed. The taping at night is very difficult.
I will report next week.
Shirley

[Kimberly]

#1174098

Hi Shirley – Wishing you all the best with this upcoming procedure. I am SO sorry that you have had all of these complications to deal with. But we definitely appreciate you documenting your journey with TED and sharing your experiences with other patients. You will definitely be in our thoughts!

[beach45]

#1174099

Shirley, wow what a story! Thank you for sharing this and I am sorry you have had to go through this up through now.

I was told I have moderate TED and my thyroid eye doctor said regular 6 month check-ups for it the next 3-5 years.

I hope that your doctor(s) will now get you to the point where you need to be.

I hope and pray we will hear some good news from you soon after they perform the surgery and very good luck with this!….beach

[adenure]

#1174100

Shirley,

Big hugs to you! You surely are a stronger woman than I. I can’t imagine what you have been through, but you are quite the lady- persevering through it all! Let us know how you do and I sure hope and pray for a full recovery and relief from all you have been through. I have a fear of having TED. I have dry eyes, but nothing that some artificial tears can’t fix. Worrying is pointless, but subconsciously I think about it. Here’s to a successful surgery!

[Bobbi]

#1174101

Definitely hugs. Big. Bear. Hugs. And best wishes for a totally successful surgery next week.

[Robboford]

#1174102

Hi Shirley,
Just wanted to let you know, I will be thinking of you on Wednesday. You have certainly been on one hell of a roller coaster ride. Cudos to you for your fighting spirit thus far, your posts have been an amazing inspiration to me on my journey. Hang in there and I look forward to your upcoming posts. Prayers and big hugs and kisses from Down Under.
Debbie

[snelsen]

#1174103

Thanks to all. My wishes are minimal. I just want at least one eye to stay closed at night. I am not very encouraged that it will.
Thanks again
Shirley

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