Hi, has anyone had orbital decompression surgery

[Sejem]

Hi everyone,

I had orbital decompression 2 years ago and I still have numbness on both sides of my face, my eyes still wobble as I eat and they've become increasingly sensitive to light and I often feel as though I have something stuck in my eye (like a hair) but the reality is, there is nothing there to remove, just an irritation.

I feel quite disappointed I wasn't told about the permanent side effects, it wouldn't be as bad if it had improved the appearance, but the position of my eyes are now asymmetrical with one eye protruding more than the other.

I think my surgery may have caused some nerve damage, which will never come back, if they haven't yet.

I would like to know if anyone else has had orbital decompression surgery and if anyone can recommend a top ocular surgeon that specialises reconstructive surgery for TED sufferers england/london.

Many thanks

[waveylines]

Am so so sorry this has happened to you. I would look at Moorfields they are leading eye specialist hospital for eyes in the uk. Dont know a specific surgeon for this proceedure. You could try asking your GP. In the meantime There is more they can do for you such as reactive lens in glasses to reduce glare. I assume you have double vision as a result too.

moorfields.nhs.uk/

[Sejem in reply to waveylines]

Hi Waveylines, thank you for your reply. I did have my surgeries carried out at Moorfields. Being conscious during one of the procedures, I felt as though I was being practiced on by junior doctors.

Since I feel as though I have been left worse off and now need to have corrective surgery, I am searching for a reputable plastic surgeon that specialises in the eyes. Although I can't afford it, I am willing to go private.

Unfortunately I am struggling to find a top surgeon in this field, do you have any recommendations?.

I have already had a few private consultations with doctors that have a good reputation online, However during my consultation with them (one on harley street and another at moorfields private clinic), I would sense it was all about trying to get as much money and as many procedures as possible, with so much uncertainty.

I am trying to find a genuine surgeon, that people on here have actually experienced with.

[tattybogle]

I have no experience of orbital decompression surgery, which sounds frightening, you have my sympathy for having to go through that. But i do have some experience of nerve damage. I gave up on mine coming back after 3 years , but then realised after 5 years that the numb area was smaller, and it slowly returned to feeling completely normal and now i can no longer find where the numb patch was. So there may be hope on the nerve front.

[Sejem in reply to tattybogle]

Thank you for your kind words.. I sincerely hope there is still time.. from information I've gathered online, if it's not back after 2 years then it's likely I have to live with it. I think the surgeon/junior doctors reattached the nerve endings incorrectly. probably explains why, when I touch my cheek bone, I get tickley sensations on top of my head.

[waveylines in reply to Sejem]

Oh I really feel for you.

Am sorry I cant help you on trying to find a reputable eye surgeon. It sounds horrendous what you have been through.

I did find this though in. manchester.......you would have to check this out further......

eyelidsurgery.co.uk/mr-leat...

[Awong]

Hi Sejem,

So sorry to hear this. I am looking into doing orbital decompression surgery myself. Throughout my research for reputable surgeons in London, and highly (and repeatedly) recommended by my private endocrinologist, Jimmy Uddin or Geoffrey Rose seems to be the very experienced surgeons in this field at Moorefields. I have an appointment to see Mr. Uddin next month, so hopefully it'll be a good start for my surgery journey. Hope this helps and that everything works out in the end for you!