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#1 May 2, 2017 13:12:20

tajkoont
From: Solsberry, Indiana
Registered: 2016-06-23
Posts: 8
Profile  

Orbital Decompression

I have had graves disease for one year. I finally feel really good - except for my eyes. They are bulging but not as bad as some peoples. My CT scan shows over 50% inflammation and the steroids caused high eye pressure. My doctor is telling me I need to schedule a decompression surgery really soon. That was a month ago. I kind of freaked out and did not go back to him. I feel like my eyes are starting to get better - is that possible? Are there alternatives to this surgery? It looks terrible! I definitely do not want to go blind. The only symptom I am having is a feel like my eyes are on a rubber band. I can't look to the side very far. A little bit of double vision when I first wake up but it clears pretty quickly. Nothing seems to be getting worse. I have tried to find someone for a second opinion but there are only 2 doctors in Indiana - and they all know each other.

I have never had surgery and this scares me to death. Is it really necessary?
Thoughts on this? Also, I have searched and searched and I cannot find one instance where someone has went blind from this. My doctor told me that mine is extremely bad and I need to do something quickly. I would think I would be having more symptoms.

Any thoughts or experiences would be appreciated. My eye symptoms are at one year. Am I over the hump?

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#2 May 2, 2017 13:54:56

Liz1967
Registered: 2014-02-25
Posts: 168
Profile  

Orbital Decompression

Like you, I was really hoping I could avoid orbital decompression. The eye disease burned out in a year as I had total thyroidectomy and orbital radiation and steroids, which tend to hasten burnout, but I waited another eight months hoping to see improvement before I had bilateral decompressions. This surgery was rough but well worth it. It made a huge difference in dryness, bulging, intraocular pressure, appearance and muscle tightness. I had lateral walls done through excision in outer lids, not through nose, as this causes less double vision than the medial through the nose approach and my double vision had stopped progressing so I did not want to make it worse. I had both eyes done at once at Kellogg Eye Center at University of Michigan in Ann Arbor by an oculoplastic surgeon with a lot of experience with Graves. It was a five hour drive from Cincinnati but well worth the travel. If you are near a university medical center, you might check into that or a big city like Indianapolis, Chicago or St Louis.

Most of the time, intraocular pressure will go down when steroids are stopped. I had high dose intravenous and oral steroids. The enlarged muscles can also raise pressure. If your pressures are not in the danger zone (causing glaucoma) and you are off steroids, you can probably wait long enough to get another opinion or find a doc with more experience.

My double vision started with morning only but eventually did progress. You do get a bit more motility when they make more room for the enlarged muscles.

This surgery was the first step for me, was the scariest, but it was totally necessary. After that, I was able to get my double vision corrected and retracted lids fixed. My oculoplastic surgeon commented to me that the lids are actually harder for the surgeon as they are fragile and unpredictable!

So take some time to feel comfortable with it and even get another opinion or find a different surgeon. As long as you are not in danger of glaucoma or optic neuropathy, you have time; however, the sooner you get it over with, the better you are going to look and feel! While you may see some minor improvement, usually if you have moderate or severe TED, it will only stop progressing, not improve anywhere near what you would be happy with. It can take anywhere from 1-3 years for burnout.

Hope this helps.

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#3 May 2, 2017 20:58:17

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 3954
Profile  

Orbital Decompression

Hello - You got some great insight from Liz1967. The only thing I would add is that one way to tell if you are experiencing optic nerve involvement is to check how you are perceiving colors. If you take something that you KNOW is red, like a can of Coke or a favorite t-shirt, and it starts looking off (for example, more brown), that is definitely a sign that you need to take action soon.

You definitely want to be comfortable with your surgeon - so even if you have to travel, it might be worth your time to travel for a second opinion.

Take care!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#4 today 07:22:18

tajkoont
From: Solsberry, Indiana
Registered: 2016-06-23
Posts: 8
Profile  

Orbital Decompression

I wanted to update you. I have a consultation with Dr. Douglas tomorrow at 4:00. I also got to read my CT scan. It said that I had prominent fatty tissue but it was not compromising my optic nerve. Hopefully, if that is the case I can put the surgery off until next year. I feel like the constant eye change has settled down quiet a bit in the past 6-8 weeks.

I had to find pics of myself from before disease and after. How depressing! I have aged so much from this. Not sure if it is the eye changes or the weight gain from the methimazole. Luckily, I feel good.

Did you have any fear of your heart freaking out during surgery? I am sure my fear is stemming from the disease and all of the skipping beats etc from that. I have never had any surgery before and I am scared to death of having some heart freak out. My heart has done some really weird things - looking back I am sure it was the Graves setting in.

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