[joansnance]

in reply to: Eyelid Surgery #1182913

Hello Rose,
I certainly don’t have all the answers, but I have had lots of experiences with Graves’ Eye Disease. After reading your response, the first thing that popped into my head was to tell you to do whatever it takes to be certain you have a reputable oculoplastic surgeon who is very experienced in thyroid eye problems.
I was experiencing bulging red, irritated eyes as well as double vision about 8 years after I was diagnosed with hyperthyroidism. My regular opthalmologist kept telling me I just had thyroid eye disease and I was OK. I waited way too long to see a specialist and I will always believe that may be why I have had such severe issues. Again, do everything you can to be certain you have the best opthal. and oculoplastic suregeon that you can find.

I can’t remember if I mentioned Saran Wrap Press and Seal in my post. I just cut a piece that will go above my eyebrow…big enough to go around the outside of my eye. I just press it down securely and it works so well for me. I also think the humidifier in my bedroom has helped also.

As you read in my post, I have had lots of eye surgeries. Don’t let that freak you out! My surgeon says that my case is the most severe he’s seen in his 27 years of practice. I seriously doubt that you will have any difficulties that can’t be handled easily.

If you have any additional questions, I would be more that happy to communicate with you. Hope things will go well for you.

Joan

[joansnance]

in reply to: Well, here goes! #1173708

Hi,

I have enjoyed reading your post today and all the wondeful replies. Even though I’m more that twice your age, your story is soo similar to my early experiences with Graves. I always was a typical type A personality with tons of energy before, but after Graves, talk about HYPER! I saw myself as a gerbil running on one of those wheels…couldn’t stop going but at the same time unable to get things done properly. I had a head full of thick, curly red hair which fell out by the brushfulls in my bathroom. Of course, I won’t ever forget that nightmare but things totally turned around after RAI. I don’t recall having any trouble with weight gain. I didn’t get any iodine colored polka dots after the treatment either!
Seriously, I have had no problems that I am aware of from RAI after all these years. I had no problem getting my synthroid regulated. I try very hard to keep my thinking in the “positive.” I envision that you are going to do just fine! I will pray for you!

Joan

[joansnance]

in reply to: RAI vs Surgery #1182900

Hello, I’m a newby on this enlightening forum but definitiely an oldie when it comes to Graves’ Disease issues. I went the RAI route about 1992. My endo didn’t mention any other options at that time. I was scared to death because I had always been told from childhood that I was allergic to iodine. I was hospitalized for the treatment because of allergy issues. I had no problems! I have no recall of any long waiting period to feel better and get my thyroid hormone level straightened out. If I have any problems associated with RAI, I don’t know about them yet. In all these years, I have only had to adjust my synthroid dosage 3 or 4 times.

Good wishes on choosing the option that is best for you.

Joan

[joansnance]

in reply to: Eyelid Surgery #1182910

Hi Shirley,
Thank you so much for your response. It is unique to finally communicate with someone who has had similar experiences in battling TED. Recently, I wrote my entire Graves Disease story. If I can figure out how to do it, I would like to send it to you to read. In 2000, I started with orbital decompressions. I had 2 on each eye and a third on my left eye. After those I had multiple eye muscle alignments as well as multiple eye lid surgeries. I, too, had skin grafts from the roof of my mouth and back of ear lobes to form better lower lids.

I am pretty sure that my inability to close my left eye does not come from eye bulging. I believe that it is totally a lid issue. I saw my surgeon a few days ago and he will not do another lid surgery at this time. He said that there were just too many variables. I already knew that! I will see him monthly to closely monitor my cornea. In the meantime I will continue my eye maintenance daily routine. By the way, I recently tried Saran Press and Seal for my mositure shield at night. I think this is working well for me…no taping needed.

I have had a lovely break from sugeries for about 4 years. My eyes were always very dry, red, watery, and irritated BUT very little dryness of the cornea.
This is a new and stressful development for me. If you don’t mind sharing with me, I wondered if you have had problems with your cornea getting dry spots.
Has taping your eye closed at night helped with this?

Through all my TED issues, my excellent vision has been my ace in the hole.
That has changed slightly and it is frightening to say the least.
I hope we will continue to stay in touch.
Joan

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