Orbital decompression surgery - TED

[Jenna5]

Hi All, so after a lot of pestering my Ophthalmologist has brought forward my next appointment to this Wednesday. I want to discuss Orbital Decompression Surgery with him and just wondering if anyone else has had this done on the NHS and if they would kindly share their experience with me, and also how long they had to wait for the surgery (I understand it will be longer due to covid). I do have my worries about it damaging my eyesight, but I suppose there will always be this risk and I have to weight it up.

Thanks

Jenna!

[Buddy195 Administrator]

Hi Jenna5,

I have TED, but have not needed to consider surgery. I really feel for you Jenna5, as eyes are so important & I fully understand why you would want surgery to improve their appearance.

As I’ve mentioned before, I’ve found TEDct really helpful, providing telephone advice, information booklets and on-line meetings. They also run a Facebook group; I’m sure some members of TEDct will be able to share their experiences of surgery with you & better advise.

I know it’s tricky for you as you live on the Isle of Man, so your ophthalmologist probably won’t be a TED specialist. I’ve seen quite a few ophthalmologists, but felt that my treatment improved when I saw a TED specialist.

Some TED patients have had improvements with teprotumumab, but I know this isn’t yet available in the UK.

If your ophthalmologist can’t answer all your questions, could you consider/afford a private on line consultation with a TED specialist? Moorfields has several specialists & there are others dotted around the UK.

Please post to let us know how you get on. Sending you very best wishes.