[tc75]

in reply to: TED #1169290

Hi Bobbi,
Was it in only one eye you noticed a change or both?
My issue is that it is only in my left eye that the pain and proptosis is happening. I would have figured if it was a relapse of TED that both eyes would be equally affected. Way back when I had all my issues with TED before the surgeries, it was always both eyes.
I do have some pain in the right eye, but only when I move my eye in a certain direction. Otherwise, this eye is completely unchanged.

[tc75]

in reply to: Orbital Decompression DONE! #1071434

Hi!
I was told also that i would be having several surgeries, the first of which is the decompression, followed by the muscle adjustment and then the correction of the double vision. The latter of the two being simple in and out procedures (I wish I knew the proper names of the surgeries)

Anyway, my decompression surgery was (I wont lie) rough the first three days. That is when the swelling was at its peak and I had such bad double vision that I had to cover one eye up with a gauze pad under my glasses just so I could see. But it was short lived and SO worth it. By day 4 I was seeing fine. The pain after my surgery was almost nil! I was given tylenol 3’s to take, but I didnt feel I even needed them.

My only complaint is that it tied me up for the first two days with an ice pack, and being a mom of a 9 month and a 2 year old.. well you can imagine…. very hard to sit still with the little ones so active!!
So, aside from being tied up with and ice pack, and seeing double because of the swelling, it was not at all as bad as I had imagined. I’d only recommend cancelling anything you need to do and just relax in bed for the following couple days. Its amazing how fast the body heals. Every day there was a huge improvement.
I had my right eye done, not both, and the bruising for me was pretty severe. (Everyone is different tho) Mind you it didnt hurt at all, it just looked horrible. I was green, purple and yellow for just under a week all across the right side of my face right down to my chin! Funny how people react too… some too imbarressed to say anything but the look across thier face just says it all… and some who are just too curious to NOT ask! LOL… My poor husband wanted to make me a tshirt saying "I had surgery" so people wouldnt think he had done the damage! Aswell, I was numb along the right side of my nose. But that has been improving every day too.

Hope this helps, and please feel free to ask me anything. My husband and I took pictures of my eye the days after the surgery so feel free to ask for those too!
Take care
Tracy

[tc75]

in reply to: Orbital Decompression DONE! #1071432

Hi again,
I had RAI done after my eyes issues started. It was actually my eyes that brought me to my doctor in the first place, before being diagnosed with Graves. I thought at first i had allergies, but couldnt figure out what i was allergic to. My eyes started to be very itchy, sore, red and I had big puffy bags under them. They didnt start to bulge for a few months after my diagnosis. It was so gradual too. About a year later was when they hit thier peak. I remember standing at the bus stop waiting to go to work, and i couldnt read the number on the buses that were coming! The double vision was really bad at that point.
I dont recall if the RAI I had done shortly after this point contributed or not to my eyes. They were already in rough shape. I have heard about a ‘cold phase’ for some TED patients, where thier eyes settle back after the thyroid is corrected, but mine never did. This was 5 years ago.
I hope this helps some!
Tracy

[tc75]

in reply to: Decompression Surgery April 15th #1072148

Hi again,
My doctor told me he would be going in through both the inner corner and outer corners of both eyes. I was told that there would be a very small, sutured area (3 mm or so) from the outside corners. He also told me that they would be removing bone (cartilage) from the sinus areas along side my upper nose near the inner corners of my eyes. Its veryhard for me to explain what I was told, I apologize!! If only I could draw the pictures he showed me…(I am a terrible sketcher tho, so that too would be hard to read..lol)
Anyway, the idea is to open up a hole in my sinuses, to allow the inflammed tissues have a new area to fall into.
Have you or anyone else here heard of this? He had told me it is what they do ‘these days’… He never told me of what they used to do.

[tc75]

in reply to: how bad is bad- eyes? #1072159

Hi there,
I had the puffiness for almost a year before I was diagnosed with Graves. Itchy, red eyes, constantly feeling like I was sick with a huge sinus infection, but with out the other symptoms… I don’t want to presume i know what your feeling, but I do know what worked for me when I felt that way. I bought one of those cheap pharmacy eye gel packs (the ones that look like part of a batman robin costume) and froze it every night, and held it on my eyes every morning for a half hour or so. I made a HUGE difference. Not in the swelling however, (which I had hoped) but in the feeling. AFter having it on my eyes, they felt sooo refreshed. It helped alot with the itching and redness too.
Also, the response to your post about the elevated sleeping. That helped too. I used to only use one pillow, now I have 4.
Hope this helps ” title=”Smile” />
Take care

[tc75]

in reply to: PREGNANCY, HELP!!! #1072336

Hi there,
I havent had a thyroidectomy, but I have had RAI. I have had two children since, and with each I was watched closely by my doctor (my doctor was an endocrinologist working within a "high Risk" team at our hospital for pregnant women.
I was told that the chance of passing on the antibodies for GRaves was incredibly slim, but still a chance, so I had ultrasounds every two weeks for both pregnancies after my 2nd trimester to look for an enlarged thyroid in the baby. I hate writing that because I dont want to scare you or anyone at all, but I had the same fears as you did! My doctor told me in his 40 years of treating pregnant women with Graves disease, he had only seen two cases of the mother passing on the antibodies to the fetus, and it was the same woman in both cases.
I was told even if the mother passed on these antibodies, and the baby showed signs of hyperthyroidism, that it was very easy to treat by giving the mother ATD’s.
Hope this helps.
By the way, there is a big bonus believe it or not… you may get frequent ultrasounds and see your beautiful baby more than most moms!!

[tc75]

in reply to: Eye surgery #1072606

My fear is both losing control of myself, and also being in the hands of a medical team without me being there to make crutial decisions! (If any came up)… I had the same phobia for airplanes. I was terrified thinking that I was putting my life in the hands of a huge machine… any millions of things could go wrong. That’s just life. Unpredictable.

The only thing that terrifies me more than something going wrong in surgery, is becoming blind from the procedure. ( I was told it was a risk… small, but still a risk)
I can’t imagine not being able to see my baby boys grow up. My absolute favorite thing is just watching them!! I haven’t been overly ambitious in life, or incredibly good at one thing, but being a mother I am actually pretty good at. And proud.
I love being a stay at home mom, and wouldnt want it anyother way. If I could, i’d have 30 kids… This disease has been my only set back. (aside from money… 30 kids would be expensive..lol)
I know I have to get this surgery done. I have greater risk of becoming blind from nerve damage without the surgery…. Rock and a hard place??
I am very thankful that there is a resource like this web site.

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