Orbital Decompression

Hormones
1

Has anyone on this Board had orbital decompression. What was it like? How were the results? I'm schedule for this surgery this summer. Thanks.

2

Hi Lisandra

My thyroid eye disease was diagnosed in August 2013.

I had bi lateral orbital decompression in February 2015. This followed two lots of intravenous steroids, radiotherapy on the eye socket and then came the decompression to reduce eye pressure and give more room for my eyes to move. I should add that I had significant double vision and very staring eyes. A very difficult disease to deal with, emotionally as well as practically, I found.  

I had both eyes operated on at once. Pressure reduced at once and the double vision almost disappeared. The scary part was waking up with both eyes covered and unable to see for a few hours. The results were well worth it though. I then had eyelid lowering a year later and now my eyes look almost the same as they did four years ago. I still suffer from very dry eyes and will have to use eye drops or eye gel for the foeseeable future, but considering that I was in danger of loosing my vision, I can live with that. 

Oh and I do get 'vision wobble' when I eat as a result of the decompression, but I almost don't notice that now.

Hope that helps

3

Thanks for taking the time to reply. May I ask if you had RAI or a thyroidectomy prior to your orbital decompression? If so, how long did you have to wait before the eye surgery? I'm scheduled for a thyroidectomy the end of June. My neuro ophthalmologist will be prescribing prednisone one week before and two weeks after the thyroidectomy to contain further eye inflammation. My eyes have remained stable for the last six months...hoping I'm out of the active phase.

4

Hi Lisandra

My consultant said I couldn't have RAI with Thyroid Eye Disease.

The medication I was on seemed to stabilise my thyroid levels (bringing the TSH back to within normal limits) over 18 months, so a thyroidectomy wasn't even discussed. I think that if I became hyper again a thyroidectomy would be considered. I'm not anxious for that to happen unless absolutely necessary.

i have bloood tests every 2/3 months to keep a check on what is going on.

regards

regards