[jaqeinquotation]

#1059745

Anyone with TED between 12-18months and has had OD surgery?
How do you feel you looked afterwards?
Was it worth it for you?

[hollygsmith]

#1177219

I had a 3 wall bilateral orbital decompression in May of last year. I had TED for about 14 months at the time of the surgery. Yes, it was definitely worth it. I had constant pain and pressure behind and around my eyes and once some of the swelling went down from surgery this was completely relieved. I did not have double vision before or after the surgery. I was able to close my eyes completely after surgery-something I couldn’t do before surgery. I did experience numbness on one side of my face after surgery and it went away at after about two months.

It made a dramatic difference in my appearance-each of my eyes moved back 6mm. I had bilateral upper eyelid retraction repair in November and I’m pretty close to looking like I did pre-TED. I’m having one more surgery in April to even up the lids. I have close friends that have told me that I look like I did before TED. I can still see subtle differences, but I think we are our own worst critics. It’s so nice to be able to go out in public and not feel like people are staring. It’s also great to want to participate in social events again.

It is a major surgery. For me, it was a pretty tough recovery. I was in the hospital for 3 nights because they had a difficult time getting the right combination of pain medications figured out. Once I got home, I was in bed for about a week. My sister came in from out of town to help out for that whole first week. I needed assistance pretty much with everything. The good news is I don’t remember much because of medications. Once I got past the first week I slowly got my strength and energy back. It takes a long time for the swelling to go down from surgery as well-took about 6 months for me.

Would I do it all again? Yes, definitely.

[jaqeinquotation]

#1177220

Thanks for sharing your story. I’m so glad you feel confident and more comfortable again. No one knows it like we do and I look forward to getting to that stage in my journey.

I’m to have he same surgery sometime this year (hopefully). I’m just trying to get the right surgeon since its the only two eyes I’ll ever have, I need to be sure because you’re right this is major surgery.

I was told my eyes could only go back 3-4. That could be because my bulging is significant; they measure 26/27.

Did you have both eyes done at once?

[hollygsmith]

#1177221

I am always happy to share my story if it can help someone going through the same thing. I am grateful for this forum so we don’t have to feel like we are the only ones going through this experience.

It is so important to find the right surgeon. Mine was amazing. Not only was she an excellent surgeon, but she was also empathetic and campassionate-which are not always easy characteristics to find in a surgeon! I did have both eyes done at the same time. My surgeon preferred to do it that way. My surgery took about 5 hours and one eye needed more extensive work than the other. My proptosis measurements were 24.5/25mm before surgery, so I’m not sure why they wouldn’t be able to give you more improvement than 3 or 4mm, although I know each invidual case of TED can be very different.

Good luck with finding the right surgeon!

[PSylo]

#1177214

Hello,
Thanks for sharing your stories! I am at the beginning of the long journey. I am lucky enough to be with Dr. Mary Stefanyszyn at Wills Eye Hospital in philadelphia. My question to both of you…. The doctor has suggested the Radiology therapy to “put me in stage 2” quicker and minimize the damage. I am currently at 23/24 and was diagnosed last August. Did either one of you have the radiology therapy? What are your thoughts? I am currently on my second steiod injectoin into the muscles, which has really helped with the swelling and discomfort of my eyes. The steroids have also assisted, at the original visit I was at 24/25.

Thanks so much…
Pam

[snelsen]

#1177215

My endos had strong thoughts against radiation treatment for TED. I did have steroids several times, oral and IV-it helped tremendously for a while. I needed them to relieve pressure on my optic nerve until I could schedule an OD-which I did have in the active phase, because of the optic neuropathy (which can result in permanent blindness if the optic nerve is damaged.)

I think I recall that maybe someone did have radiation for TED. I don’t know what the current evidence based studies show, or what the nationwide practice is. It may vary, for lots of treatments vary in different parts of the country, and/or where people trained.

Having said that, some things, treatments, diagnoses, are also just plain wrong.
Shirley

[gatorgirly]

#1177216

I think runlacey on here had radiotherapy on her eyes. My neuro-ophthalmologist told me if my eyes responded to well to steroids, they would respond well to radiotherapy, but if they did not respond to steroids, radiotherapy would be of no use either. Fortunately, steroids (oral prednisone) did the trick.

[jaqeinquotation]

#1177217

I was told that steroids wouldn’t help me at this stage-that I’m too far gone even though I still feel a lot of pressure behind the eyes….I’m not sure.

[Kimberly]

#1177222

gatorgirly wrote:

My neuro-ophthalmologist told me if my eyes responded to well to steroids, they would respond well to radiotherapy, but if they did not respond to steroids, radiotherapy would be of no use either.

Yes, I’ve heard the same thing from doctors who have presented at our conferences. Here’s one presentation from our 2011 conference in Boston:

(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, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.youtube.com/watch?v=jy5y6gb2AHk

[Kimberly]

#1177223

jaqeinquotation wrote:

I was told that steroids wouldn’t help me at this stage-that I’m too far gone even though I still feel a lot of pressure behind the eyes….I’m not sure.

For patients who are in the inactive/cold phase, steroid therapy is generally not effective. However, I think I recall you mentioning that you have had another active flare, so it might be worth another discussion with your doc of the risks vs. benefits of steroid therapy.

[jaqeinquotation]

#1177224

That’s the thing Kimberly, I believe that my eyes are in the active phase again but when I asked the ophthalmologist he said, “it’s hard to say, I can’t tell” . So where does that leave me?

My physician (waiting to switch, but until then) is the most timid man I’ve ever met…he won’t even discuss my graves since there are “specialists” involved. The specialist appointments are far and in between-next referral appt is May 3rd..so what do I do? I guess given the side effects I shouldn’t be so eager to have the steroids.

Then I ask myself, do I even know what the “active” phase is?

[Kimberly]

#1177225

Doctors use a combination of testing and observation to determine when the active phase has ended, so there really isn’t a set answer.

But if you aren’t comfortable with the answers you are getting, definitely seek out a 2nd (or 3rd or 4th!) opinion!

There are definite drawbacks to steroid therapy, so this is a decision that should be made with full confidence in your physician.

[PSylo]

#1177226

I am just going to throw in my 2 cents on steroid therapy. My Dr. has been treating me with steroid injections into my muscles around my eyes. It has been extremely helpful. It has releived the pain, reduced the swelling significantly and releived some pressure. However, this is just a fix until the disease is inactive. It does though minimize the potential damage until your disease is inactive. Hence, I am going to try the low dose radiology therapy for ten days, with the hopes of going into Phase 2.

Thank you all for your feedback. I will keep youposted on my progress.

Thanks
Pam

[elf]

#1177227

jaqeinquotation wrote:

That’s the thing Kimberly, I believe that my eyes are in the active phase again but when I asked the ophthalmologist he said, “it’s hard to say, I can’t tell” . So where does that leave me? …

Then I ask myself, do I even know what the “active” phase is?

My subjective feeling was – I entered the inactive stage when all personal feelings of eye discomfort disappeared. Tearing, itching, feeling of sand in the eyes just stopped. Eye movements were still restricted (hard to look way up and way down, as well way left and right), but it also became sort of unimportant (so what if I had to turn my head, not just eyes, to look sideways?) – that is, I entered the stage of getting used to my state (not talking about the appearance, because that was still hard).

It took about a year from the onset of TED to reach that stage when I clearly understood that my eyes had stopped changing. No doctor’s advice would’ve been able to replace my subjective feeling. I started to feel that if I’d left TED alone, I would’ve looked this way for the rest of my life – nothing else would’ve kept changing.

But of course TED transpires differently. For example, I never had painful pressure or decreasing field of vision. Some people have those “sandy, leaky” feelings for 3 years. So there is no set timeline, I just hope that everyone would be able to reach the stage of clear-cut STOP as I did.

To answer the original question – was OD worth it and did I get my appearance back – I started looking better, yes, it caused a huge boost to my self-confidence. But if I were to get down to details, I don’t think I look the pre-TED way. To start with, I did OD on one eye only, and now both eyes sort of look the same (I suppose I hadn’t had dramatic bulging). But the pictures still show one “owl” eye. People who haven’t seen me for 15 years, do say my eyes look differently, and I can see that they are struggling to reconcile and re-learn my look (including my parents). But then again, 15 years would be able to cause a change in anyone, right??

Would I do it again? In a heartbeat! It basically got me back to sanity. So some details are off, but it’s nothing comparing to the general feeling that I, again, belong to the human race (and not to the monster race ). If I ever get to places with bigger hospitals, I would like to do my other eye, too.

[jaqeinquotation]

#1177228

Thanks sooooo much to everyone who took the time to share their own personal experiences. I took a bit of everything from each response.

I’m definitely going to have the surgeries; I prefer having both eyes done at once instead of one at a time and I’m hoping that the next specialist I see will be willing and if all is well I hope her wait list is not as long as the previous one (4-6 months).

The same specialist told me that it could/would take up to 2 yrs for the swelling from surgery to go down. I think he was just being mean by making me think that the surgery wouldn’t help at all.

My eyes have felt better these past few days but I don’t want to jinx myself.

I guess here in Canada they don’t promote the use of prednisone so much even for someone who eyes are as puffy and bulging as mine. I was prescribed it once and it worked somewhat but I’m not sure why the two specialists I’ve seen haven’t recommended it again; to help with the swelling until surgery.

Fingers crossed for the 3rd opinion in May:/. I’m hoping to make a decision on which specialist I will go with after that appt.

Going for a cat scan this Tuesday so I’m hoping that they will give me a copy so I can take it to the next specialist for her viewing.

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