[S01663333]

#1058895

Hi my name is Jennifer and I am 29 years old.  I have had graves disease since 2007.  I have thyroid eye disease.  I have thrown around the idea of orbital decompression surgery.   However I  am terrified to have it done.  So because at the time I was told it was not medically necessary
 I decided to live with the disfigurement of my face due to my extreme anxiety about the operation.  This has resulted in self esteem issues.  Recently I meet with my normal eye doc for my yearly vision check and my eye pressure came back a little high.  He recommended that I have this checked with a glaucoma doctor.  I did and he ran a battery of tests and my eye pressure came back 27 looking forward and 35 looking up.   He put me on these horrible eye drops that make my eyes burn all the time.  He is going to recheck me in two weeks.  He also told me to go talk to another doctor for his opinion who turned out to be a orbital surgeon.  This doctor felt I would benefit from the surgery.  He made me press on my eyes and then his and said there is no give to my eyes due to the inflammation behind them.  He wants to do a tri wall surgery on both of my eyes, which to me is even scarier.  I have started to have anxiety so bad about this it is almost like panic attacks.  My TSI also came back at 380 down from 445, does this mean I am going through an active phase?  I am terrified about this but I do think it could help my quality of life.  Can anyone that has been through is talk me down from the ceiling on this?  Any help would be deeply appreciated.  Thank you,

Jennifer

[Kimberly]

#1170739

Hello – There is some controversy about the use of antibody testing and TED, although many docs do use a combination of TSI testing and noting whether symptoms have stabilized to determine if TED has moved on to the “inactive” phase. These docs look for low antibody levels and stable symptoms to determine if the active phase is over. As you probably know, eye surgery is not recommended during the “active” phase, unless there is an immediate threat to your vision.

I haven’t personally had an OD, but this board includes a “search posts” function in the top right-hand corner of the screen, so you can search for posts under OD, “orbital decompression”, etc., and read first-hand experiences from other members. Shirley (snelsen) has done a great job of documenting her experience with several different surgeries for TED.

Also, here is some good information on TED from the University of Michigan Kellogg Eye Center:

[size 10](Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).[/size]

http://www.kellogg.umich.edu/thyroid/faq.html#.T1d73F7syq0.twitter

Ultimately, this is a decision that you and your doctor will need to make together. OD is obviously necessary if your vision is compromised, but it can also be medically necessary if the protrusion keeps your eyelids from closing all the way, which can eventually result in damage to the cornea.

Please keep us posted on how you are doing!

[S01663333]

#1170740

Thank you for the reply. I have been reading the posts related to orbital decompression and find them quite helpful. I am just wondering if I am making this a bigger deal than in needs to be. I am also wondering if anyone has had any luck with steroids or if they are are a waste of time? Thank you for your help.

Jennifer

[jansm]

#1170742

I was not given much time to panic or even think about my OD surgeries. I learned my case was very severe, and my right optic nerve extremely compromised. My surgeries were scheduled within a couple of weeks after receiving the physician’s recommendation.

I was probably more apprehensive about my thryoid surgery, than my OD surgeries! I would do almost anything to save my vision. If that meant two major surgeries in a short period of time, so be it.
Having gone through several different types of surgery, I can honestly say my OD surgeries were not the worst. Pain was minimal, for me, after the first couple of days. I also did not have any terrible reactions to the post-surgical steroids. The most difficult aspect was finding a comfortable position to sleep, once I no longer had the hospital bed that could be positioned. I mostly slept propped up in the corner of our overstuffed family room sofa, surrounded by lots of pillows. A recliner, if you have one, might work well, too. Recovery was much easier than I anticipated, even though it is difficult to see your eyes looking really ugly. I did panic once, but a phone call to my surgeon quickly put my mind at ease. It is the end result that you need to keep in mind.

There were a few complications with my second OD surgery, and I still have slight numbness on that side of my face almost two years later. I notice only when I brush my hair and apply makeup. However, the important thing is that I have been blessed with two years of vision that could have been lost. While my eyes were not bulging (one of the reasons I and some of my physicians did not realize the severity of my case), I did have the undereye puffiness. People often commented on how tired I looked. My eyes look so much better, and that makes me feel so much better.

I am so sorry for the anxiety you are experiencing. None of us can tell you what is best for you. That must be decided between you and your medical team. Many of us can tell you that OD surgery is very much worthwhile.

[Kimberly]

#1170743

Hello – I do know of a few patients who have had good success with steroids while in the “active” phase of thyroid eye disease. However, a couple of issues to keep in mind:

1. Steroid therapy is *not* a permanent solution to TED. It is a temporary fix and is most often used to help patients through the worst of the “active” phase of the disease. One doctor at our 2010 San Diego conference noted that patients starting on steroids should ask their doctors what the goal or end point is with the use of steroid therapy, as this is not something that should be administered continually.

2. Steroid therapy does come with risks and benefits, so definitely discuss the risks with your doctor before considering this route. Side effects can include mood swings, weight gain, and and increased risk of glaucoma, high blood pressure, osteoporosis and diabetes.

Hope this helps!

[gatorgirly]

#1170744

Hi Jennifer,

I kind of understand where you’re coming from. I’m 27 and have dealt with Graves since 2009. I developed moderate TED at almost exactly the same time I become hypo post-RAI, which was in July 2011. I was immediately put on a very high dose of prednisone and noticed relief the very next day. I had no more pain and that feeling you felt when you pressed on your eyes compared to your doctor’s eyes, that changed pretty significantly over the course of a few weeks. My dose was tapered every six weeks or so until I was finally done with the steroids in October.

I have not needed them again since. Thank goodness, because my body did not handle them well. I developed terrible acne along my jaw line that persists to this day despite being on Epiduo since December; I gained 15lbs that I have since lost but it caused permanent stretch marks on my “love handles.” However, the prednisone saved my vision and saved me from emergency OD surgery. Now I get to have the surgery on my time. I just moved from FL to MA, but my neuro-op thought that within a couple of months I’ll be a good candidate for OD. I’ll be sure to ask about the antibodies. I will also need lid surgeries as my eyes are currently asymmetrical and my lids are retracted and droopy.

Please keep us updated with your TED and plans for OD. Good luck!

Kelly

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