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#1 Aug. 1, 2017 12:14:13

bromosounds
Registered: 2016-10-11
Posts: 1
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Post Orbital decompression surgery - 1st some background info

Hello everyone. I've been lurking for years now and decided it's time to share what I can to help the next person as much as you have all helped me.

I was diagnosed by my GP with Graves in 2000. I was there for my annual and asked him about a couple of symptoms I was experiencing and his response was that he could take one look at me and know I had Graves. Apparently I had an obvious goiter as well as TED eyes and didn't even realize it. I have no idea how long it had been going on up till then. Isn't it funny what sneaks up on us without us knowing? Maybe it's because we are walking around in a state of high anxiety with constant brain fog.

I was treated by a ‘respected’ endocrinologist for 4 years before I gave in to RAI. The doctor was hopeful that my eyes would improve with medication but they didn't. The constant struggle with finding the right dose and all of the appointments and blood tests along with the symptoms themselves wore me down. I couldn't deal with it anymore and wanted it to all be over. I have bad memories of those days. I remember fighting with my endo for months…I had horrible brain fog and wanted to try either a dessicated hormone or at least add Cytomel to my Levo. He claimed there was no reason for the brain fog, and that the meds had fixed me. He absolutely refused to prescribe any natural thyroid hormone and finally gave in to the Cytomel request. This did help, but I still never felt right.

After the RAI and the many, many dosage adjustments and further lab tests I became stable and I decided I could leave that doctor and manage it with my GP. She agreed to let me try Armour and that's been the best thing I ever did to feel as close to my old self as possible. I have since switched to NP thyroid due to cost and the old availability issues with Armour and I am just as happy with it.

So for all these years I have thought about fixing my eyes but knew it took time, money and support, and it's hard to have all 3 at the same time. I had fairly significant proptosis, fatty undereye bags and both lids retracted although one mostly resolved on its own eventually. I finally bit the bullet and consulted another respected doctor who supposedly had experience with TED.

He advised me that although I had moderate proptosis he did not advise orbital decompression unless there were vision issues because of the risks. So, I had lid retraction repair on my left eye and lower bleph surgery on both eyes.

What a mistake. The retraction repair failed and I was left with severe ptosis on that eye and the lower bleph just tightened the belt on my bulgy eyes. I wound up with some major sclera showing on my left eye. This was in April of 2015.

In August 2016 I consulted another surgeon with much more Graves experience who repaired the ptosis. It was better but still a little low but I thought well, that's as good as it's gonna get. 2 months after that surgery (after being cleared to resume all normal activities) I was doing some heavy lifting and felt a pop in my lid. The lid had fallen back down. I assumed the stitch had popped.

I will start a new post that will talk about the OD next. If you are new to this disease here is my advice to sum up this part of my journey.

Just because an Endo is highly regarded in his/her field it doesn't mean he/she knows much or cares much about Graves patients. Most of my doctor's patients were diabetics. I'm sure he was great at treating them but he was clueless about Graves. All he cared about were lab results but symptoms are EQUALLY important! Find someone with experience and compassion if you can.

Just because an oculoplastic surgeon is a member of the ASOPRS doesn’t mean he knows what's best. In fact, that designation means nothing to me now. It's his/her VERIFIABLE TED experience that matters most. Ask for pictures of other patients, lots of them. Ask lots of questions too. Don't assume they know what they're doing….



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#2 Aug. 1, 2017 17:54:44

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 3985
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Post Orbital decompression surgery - 1st some background info

Hello and thanks for sharing your story!

We do recommend that patients start with the ASOPRS listing if they are looking for a new doc, but it's certainly fair to ask how many thyroid eye disease patients they see - and to get a second opinion if you have any concerns. Sorry to hear that you had a bad initial experience. Most docs are pretty strict with doing the surgeries in a specific order: decompression, strabismus (if needed), and then eyelid surgery.


Kimberly
GDATF Forum Facilitator

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

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