I am a busy stay at home mom of three kids, age 19, 10 & 8. I am happily married, and look forward to celebrating the lucky 13th year this fall. We also live with our nephew, who is 28 and his daughter who is 9…..our home is a three ring circus, but I wouldn’t have it any other way!!
After over a decade as the Executive Producer of the Miss Oregon Scholarship Pageant and 10 years singing with the Oregon Symphony, I am happy to stay home and sing lullabyes to the little ones. My career in theater has come to an abrupt halt due to my Thyroid Eye disease.
I hope to use this blog to bring more of us together, and have plans to document before and after TED surgery videos and photos HERE!!
Hello!
I have been keeping up with your surgery blogs as I am trying to decide if I am actually going to go through with this surgery myself.
I am a free lance stage director(regional opera) so I understand you well… at least from a professional perspective. If I can’t see the stage I can’t work.
I am freaked that I will endure the surgeries and end up with double vision forever.
How is your vision now? How long will it have been from the first surgery to the time you can return to work? Do you look much different? Must you have more surgeries?
What do you say to those of us who are cowards?
I hope your recovery is speedy….and the drugs excellent!
Thanks,
Marciem
Hi Marciem,
I foumd this site this month, December, 2009. Did you move forward, have deompressions? I am scheduled for one on my left eye 2/2/10. Of course I am very apprehensive. My inferior muscles have been affected the most, so I can look down without problems, bur looking forward, I have double vision.
I have to tip my head way back to use my downward vision to look forward, which affects the muscles in my head, neck and back. They are usually sore, or in spasm if I do that very long.
I went to four surgical teams before I chose one. I went to Portland for a second opinion (i live in Seattle.) I decided on an eye/oto doc combination, for it seemed to make sense to me. The oto doc does the medial wall, the eye doc does the lateral wall. I guess I have about two years of surgery ahead of me, eye muscle surgery on both eyes (strabismus) and then eyelid surgery. I hate this disease, love this site. Nice to contact others who are having similar experiences.
Yay! Yay for connections!!
Hello!!
I recently started reading this blog, I can relate to almost everything, I am 22 and my thyroid nightmare began when I had just turned 18, I still wonder how I made it. Anyway, I had orbital descompression almost two years ago and eyelid surgery 8 months ago, I am more than satisfied with my eyelids, they look amazing, but I’m not completely happy with OD results, even though my eyes look sooo much better than before, they still hurt, they’re very dry, I can’t fully close my eyes when I try to sleep, but the worst part is people still notice there’s something wrong with them and I hate it. I think you look great by the way. Is it possible to have the surgery again? I’m probably overreacting ’cause most ppl say I look just fine but I feel I will never be able to be me until this is totally over. So, what’s your advice? Do ppl notice something in your eyes? I reaally want to know…
Much love,
Ketty
Ketty;
What can I say? Welcome to the club? LOL!
My understanding is that OD CAN be redone. You are probably being over sensitive. I still look at myself and wonder why God chose me to take on this challenge. But, that and $3 will buy me a latte, and not much else. I would need to see a photo to really give you an opinion, but what I can suggest is that you look at cosmetic options a.k.a. makeup. When I have base evenly applied, and highlighting and shadows artfully placed around my eyes, I know I look better. My favorite treat is to make an appointment at my nearby MAC counter with a make-up artist I ADORE…. makes a world of difference.
Oh yeah, make up is my best friend, but where I live is really difficult to find experts in the field. My problem is in my inferior eyelids, I’m going to see my doctor this next thursday, let’s see what he says. I think I do need another surgery cause the exophthalmos, even tho is very mild, it bothers me a lot, not just cosmetically speaking. Why don’t you give me some of your tips to try to hide it a little?. I should tell you, I learned english by watching MTV and E! entertainment, so I apologize for any errors.
Hi Ketty, I also have one eye that will not completely close after my OD. I had OD while still in the active phase of TED, to save my optic nerve.
It is CRITICAL, for us, to figure out how to make our eye stay shut while we re sleeping. The complication that can happen, is one we don’t want! A corneal abrasion, which would require a corneal transplant.
The docs/nursing staff are happy to tell people, “just tape your eyes at night.” Accomplishing that, is a whole different story. I still have found a good way to do this. I have tried a patch, but the only way I can MAKE it stay shut, is to tape it.
Yes, that involves getting tape on my eyebrows, delicate skin on face, and sometimes eyelashes.
Yes, an OD can be done again, and it can be covered by most insurance as long as you have a doc who will write the appropriate medical need.
It is not just a cosmetic whim.
My eyes are super dry, i have a lot of tearing, much sensitivity to light, and double vision.
I am hoping to have strabismus surgery for the double vision, then eyelid surgery to accomodate my eyes the way they are now, and correct the fact that one eyelid will not open.
Another site I think you would really like is the National Graves Disease Foundation.
Best wishes
shirley
Hey I know this is so late in the game, but I am 22 and I feel the same way. I guess I kind of wanted to say hi to someone as young as I going through the same thing, and I took had my issues starting from way back before but didnt realize it till some eye brows went missing, hair thinning, and my friend said my voice sounded ‘older’… now I am having the eye issues, and im without insurance, in CA.. not trying to bring worry, but any advice would be SO awesome. I am so glad I found this blog, and I have the same questions as you about the eye thing too haha. I am also sorry you are going through this too, you arent alone
Sounds like you may have alopecia, which is a very common auto immune disease. i would strongly urge you to look up autoimmune dieseases online. Do your homework, and arm yourself with great information. If you cannot afford the decompression surgery, look into genteal drops for your eyes, and strong antioxidants for your body. Unfortunately, you are what you eat…. I used to be ding dongs and frappucinos!!
Now I”m Dave’s Killer Bread and organic fruit 
Thanks for replying, it means a lot to me that you take the time to do this. Thank God I never had problems with my optical nerves or double vision, I trust God I will never have any other problems different than the ones I have right now and hopefully those can be fixed as well, I’ll post some pictures so you can have an idea of how I look.
Thanks again.
K.
So what else did you have done other than OD ? Did you have the “cosmetic” portion done at the same time? My eyes measure at 22.5 and 20.5 and my doc says I should have surgery on one eye that is 22.5mm. I just turned 30 and have been living with this for the past 2 years. Any advice you could give? I just want to look normal again (not like a frog) and feel good.
Amanda….
I Only had the latrial OD surgery done. I opted NOT to have the cosmetic surgery added on. I figured I would rather wait a few years, and have a little “nip-tuck” taken and get a bonus lift out of the deal when I”m 45 ish
Hang in there….It really does get better!!
Hi,
thanks so much for your blogs. It gives hope to the rest of us who are going through the same thing. I was just wondering what type of OD you had. My surgeon suggested lateral decompression and I am just wondering if that is the best option.
I also had the lateral decompression….so far so good….:) My bulging eyes are MUCH better…can’t even tell I ever had the issue. Now, I WILL tell you that I continue to have nerve damage from my lips to my eyebrows, and every time I put on eyeliner, I feel as if I am giving myself a tattoo!! But, I will take that over Kermit the Frog eyes
you have no idea how thankful I am that you posted your journey, it is really comforting and means a lot. Thanks
Amy;
You are most welcome!!
I think the best option is the one that they have been trained to do, and do routinely. That is what I found, when I was asking the same question. I had the same recommendation, and went with it.
Shirley
Shirley….great point!!
Also….be sure to ask the following questions:
How many of these surgeries have you performed?
How many of these surgeries required subsequent surgeries?
Who will be doin the actual surgery? You, or an assistant? (important question)
Beth
Beth, great points for everyone to know, to write down during the appointment. And, from my own personal recent experience, I would add:
What outcome do you expect as a result of this surgery? What are the statistics of risk/benefit results?
And I am not sure we will receive helpful answers, but it is sure worth pursuing. My examples:
1. I am in the “cold phase” of Graves’. I have had an emergency OD for optic neuropathy in the active phase(successful, I understood the need and expected outcome, which was full visual fields) But I had an unexpected complication of not being able to completely close my upper eyelid.
2. I had strabismus surgery (moving eye muscles) for the terrible double vision I had. The expected result was wonderful, and my double vision is gone for looking ahead and up.
3. I had upper eyelid surgery three months ago. I WISH I had asked more questions. I thought it was to correct the fact that I could not shut my upper eyelid. And, I guess I wasn’t EXACTLY sure why I was having the surgery, I guess to cover more of my eye.
4. NOW I have a proposal of skin grafts from my hard palate to my lower lids. Is it worth it? I get varying answers. I keep asking about the graft site, how long they are painful, if they are sensitive to heat, food, the rest of my life. What is the infection and rejection rate? And WHY am I having this. My two big issues are constant tearing and extreme sensitivity to bright light. Will it improve these two things? After talking to others who have had this procedure, I have cancelled this surgery, at least for now. Not too sure the risks and not so definitive rewards will be worth it for me….Anyone else had this procedure/
Hi
I had my thyroid radiated about 13 years ago…. biggest mistake of my life!! For the past few moths I have extremely red and watery eyes. Looks like I have been crying for 3 weeks straight!! Medication is not solving the problem. My ophthamologist wants to do the decompression surgery as he said the pressure is causing the inflamation in my eyes. Except for the redness my eyes are actually looking quite normal and I’m battling to comprehend the effect that this surgery would have. How is my eyes going to look if the bone of the socket is cut away… and they are actually not bulging much currently? Do you know of anyone who had this extremely red eyes as a symptom? I am studying and need my eyes to work!! How long will it be after the surgery before I will be able to study again. How long is it painful after the op? My dr. also advised me not to drink any arnica before the op as it apparently thins the blood or something….
Anyone has some advise for me?
I have heard of bloodshot eyes being a symptom of ODS….
As far as the arnica montana…. you must do what your doctor advises. I just know that a plastic surgeon advised me to take arnica montana along with bromine, and I did, and I’m happy that my scars aren’t any worse…..but, it could be a total coincidence as well