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#1 March 1, 2021 19:28:46

zigzag
Registered: 2019-05-24
Posts: 3
Profile  

TED not getting better

I was diagnosed with TED and Graves disease May 2017. Luckily the Graves disease was easy to control with methimazole and I've been in remission for almost two years now. The TED is another story. I've had orbital decompression on both eyes and two strabismus surgeries in the past year and a half. My eyes actually feel worse then they did before the surgeries. My left eye is still protruding and my double vision is still bad enough that I have to patch. My eyes feel so tight and hurt to move. I also get a stabbing pain behind the eye when moving them in a particular direction. My doctors have dismissed me, I don't think they want me as a patient anymore. All I was given was a referral to a dry eye specialist. Before my orbital decompression I had stable measurements for 8 months, maybe it was too soon for surgeries. I'm so frustrated. I haven't been able to work or drive for 4 years now. I feel so bad for my husband as I'm not a very fun wife to have around and feeling like a burden, particularly financially.

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#2 March 3, 2021 14:43:57

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4232
Profile  

TED not getting better

Hello and welcome - so sorry to hear that you are dealing with this. Do you have confidence in your current medical team? If not, a second opinion might be helpful. A couple of organizations that have physician finders are:

American Society of Ophthalmic, Plastic, and Reconstructive Surgery?
https://www.asoprs.org/index.php?option=com_mcdirectorysearch&view=search&id=12029#/

North American Neuro-Ophthalmology Society:
https://www.nanosweb.org/i4a/memberDirectory/index.cfm?directory_id=3&pageID=3390




Kimberly
GDATF Forum Facilitator

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

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#3 March 5, 2021 21:17:56

zigzag
Registered: 2019-05-24
Posts: 3
Profile  

TED not getting better

Hi, I don't really have a medical team. I'm pretty sure my TED flared up again so need to see a doctor asap. Thank you for that list.

Edited zigzag (March 5, 2021 21:18:37)

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#4 March 10, 2021 22:02:57

graves15
Registered: 2021-03-01
Posts: 2
Profile  

TED not getting better

Dear zigzag,
I am so so sorry that you're going through this. I don't have any answers for you but I just want to offer you my thoughts and support. And yes, I would definitely get a second opinion.

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#5 March 21, 2021 03:48:19

Liz1967
Registered: 2014-02-25
Posts: 302
Profile  

TED not getting better

Tepezza, which is given as a series of infusions, does work. I have a friend whose TED course has been very similar to yours who had good results with it. It is very expensive, however, and may be a problem getting your insurance company to pay for it. If you are close to a teaching hospital with an ophthalmology department you could try going there. I have had courses of oral steroid for flareups years after my last surgeries that did work (I have had decompressions and two strabismus surgeries, 3 lid surgeries, thyroidectomy, orbital radiation and steroid infusions). Weall dread recurrences and they seem to be more common than they previously thought. I hope you find an eye group that can help you.

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#6 March 21, 2021 09:36:43

zigzag
Registered: 2019-05-24
Posts: 3
Profile  

TED not getting better

Thank you all for the advice and kind words. A doctor did mention Tepezza to me, however they didn't think I would get approved. I've been taking Motrin lately and that seems to help. I'm not eager to go on steroids (and gain 40 pounds again), but will do anything to ease the pain and discomfort.

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