[Christy3]

in reply to: Tell me about small bones orbital decompression surgery #1169082

Kimberly wrote:Hello and Welcome! I haven’t had this procedure, but if you do a search on this board (located in the top left-hand corner) for "orbital" or "decompression", many posters here have been great about documenting their experiences.

Yes, double vision is a potential complication of OD, which could potentially require a subsequent surgery to correct. That is definitely an issue that you would want to discuss with any surgical consultation.

Thank you Kimberly. I will discuss this with my doctor and read a bit more on this in this forum.

[Christy3]

in reply to: New User? Start Here! #1061134

Kellimoe wrote:My name is Kelli and I was just diagnosed with Grave’s 2 weeks ago. I knew I had it but the eye disease part of the diagnosis is the tough part. My goiter is shrinking, the tremors have ceased and my double vision has ended. My eyelids have retracted and they want to start radiation on them. I needed more time to research this topic because I don’t really know about the benefits of doing such a thing and I don’t want to do something that I will regret. Has anyone had this done? I have a definite lid-lag with retracting eyelids but the swelling around my eyes has gone down significantly with the use of steroids. I’m scared of radiation and they already tried to fit me for the radiation mask, which didn’t work due to my claustrophobia. I’m having nightmares about this and I could truly use suggestions from my fellow diagnosed friends. I’m okay with the hyperthyroidism because the meds are working for me but the eye disease will continue even if they took the thyroid out, so dealing with this has been difficult. Please…any thoughts on the radiation therapy will be much appreciated.

Hello Kelli,

I posted a response to your topic but can’t seem to find it. I hope you’ve seen, I posted it today around 4 a.m. (I couldn’t sleep). I’m new in this forum and I’m sort of having a hard time getting by. Hopefully you find my message. I shared my experience with RAI in there. If you can’t find it, let me know and I will share again. Christy.

[Christy3]

in reply to: New User? Start Here! #1061133

Hello Kelly,

My name is Christy, I’m a 47-year-old women. I was diagnosed with Graves disease in 2004. I’m going to tell you what I went through if that can help, but please do not base your decision of having or not having RAI on my experience. Read more on this and ask questions to your doctor, even though, I noticed that with doctors you have to know what to ask, so perhaps you should write your questions in advance.

As I said, I had Graves disease, Hyperthyroidism and Thyroid Eye Disease in 2004. Both my eyes were really "wide" and puffy. I’ve always had big eyes. I remember back in 1998, and even way before that, people would think my big eyes were beautiful. At that time they were just big not puffy, the sort of big and beautiful eyes. I guess I was already sick then, but didn’t know it. So in 2004, I knew I was sick because I felt extremely tired, I could hardly get up to go to work and ended up getting fired. I’m a single mom, so that was really hard for me. One day (just before I got fired), after work, I was sitting in the bus and noticed that I could hear my heart pounding in my chest. I thought: "How come I could hear my heart beat?" I thought that wasn’t normal and so instead of going home, I went to the hospital and told the doctor that I could hear my heart beat. He laughed and said: "Well, that’s a good sign, otherwise you’d be dead, right?". But after doing blood tests on me and asking me questions, he came back and told me I had Graves disease. My symptoms were: In one year, I had lost 10 kgs (22 lbs) – I weighted 49 kgs (108 lbs) instead of 59 kgs (130 lbs) which was my weight in 2003. I had palpitations. My stomach was frequently running. I was extremely tired. The blood work confirmed that I had Graves disease. So this doctor who was a general practitioner sent me to an Endocrinoligist.

The Endocrinologist prescribed me some PTU tablets (Propylthiouracil), but told me about my options on this matter. 1) I could go on taking tablets forever 2) I could take the Radio Active Iodine treatment (RAI) or 3) have my thyroid removed. After she explained to me that there were no known side effects to RAI, except the fact that I might not be able to conceive, I opted for RAI thinking instead of going through a surgery for Thyroid removal, I could go for RAI, anyways, I already had children, so there was really nothing to worry about. As I said earlier, back then in 2004, both my eyes were sort of staring "big, wide open" and puffy. So, I went for the RAI in 2005 and after a while (maybe 6 months after) I noticed that one eye remained bigger than the other one. This happened gradually, so I didn’t realize it was happening. Ever since then, I haven’t had any hyperthyroidism, I’m not hypo neither. I don’t take any medication. Although, I’m still a bit tired, I could feel my legs and arms being a bit tired, but it’s not as bad as before.

The only problem I have is my right eye being bigger than my left eye. I have been feeling so uncomfortable ever since. One’s appearance is important, especially the face. People look at your face before seeing you, or even before listening to you. Sometimes people judge you just by looking at your face. So, it’s been hard for me. I have been battling to have one eye look like the other since 2005. I had an eyelid surgery done in 2007 which made it look less bigger, but it’s still is bigger. Now, in 2012, I’m thinking about having a "small bone orbital decompression surgery". I hope this works and that my right eye will look like the other one. I’m reading to have more information on this. It seems to me that double vision is a complication which can result from this. I’m not sure…

I’m sorry if my response is so long. I thought I’d write about my experience in general to provide that info to those who need it. As for the RAI, I’ve always thought that it affected my right eye. My left eye has a normal size. If I could go back and have the option again, I would choose to have my thyroid removed rather than having the RAI which is a nuclear treatment after all. However, this is my point of vue. As I said, please read, ask around and mostly ask the right questions to your doctor.

Best of luck.

C

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