Graves and eye lid surgery

[Yorkie2019]

Hello

I’m looking for anyone who has Graves’ disease and knows anything about the subsequent eye surgery. I was diagnosed with Graves’ disease in February this year. It also affects my eyes, with them being a bit starey. Not bulgy but definitely changed appearance. My eyelids have retracted which is making them wider. I have seen an eye specialist and am on medication for my overactive thyroid. The eye doctor mentioned surgery on myand that it would be my decision so I’d like to understand more about the procedure, remission and how others have been affected. I’ve been to the eye specialist twice already and it was on the second visit he’d mentioned surgery. This was following the fact there had been no changes since my first visit. Thank you in advance

[Catseyes235]

Hi ...I would say that you shouldn’t have any surgery until your thyroid has been treated and you and all medication sorted. The condition can change depending on where you are in your treatment and you would not want surgery and then things to change. The one important thing is absolutely no smoking and avoid smokey places.

I had lots of eye ops, including double decompression, squint surgery and eventual eyelid surgery but often wonder if I had never smoked and if I’d had better thyroid treatment (I was undiagnosed for years and undertreated for quite some time) whether I’d have been okay.

Good luck anyway and I hope it doesn’t take too much longer to get your thyroid stabilised.

[Yorkie2019 in reply to Catseyes235]

Thank you for taking the time to get back to me. I don’t smoke and never have so that’s a positive. From looking back at photos, it looks as though my TED started this time last year (August/September 2018) but I was untreated until this year as it was a friend who picked up on my weight loss and appearance of my eyes. I have my next appointment with the eye specialist on the 6th September so I’m collating my list of questions

[Sejem in reply to Catseyes235]

hi Catseyes235,

May I ask where did you do your surgeries and how are your eyes now?

[Yorkie2019 in reply to Sejem]

Hello

Hope you’re doing ok. My follow up appointment was due to be in March but has been postponed to July given the coronavirus situation. I haven’t had the surgery yet but is something I’d like to have as no change in my eyes in the last 15 months I’ve been taking Carbimzole.

I’ve done quite a lot of research now and have a new set of questions to ask the surgeon.

[Catseyes235 in reply to Sejem]

Moorefields -although I had an earlier and unsuccessful - what I think was experimental surgery - to remove some sinus bone at the London Hospital . (This did however stop me having bad catarrh!) It’s twenty years since I had a double decompression and they’ve been fine apart from a very very slight squint that maybe I notice more than others. Now I have AMD but that’s a different story and another platform!

[Sejem in reply to Catseyes235]

Thanks for your reply. I also had decompression surgery, and now the sides of my face are quite numb (i think its must be a nerve ending issue). my eyes also wobble when eating.. did you experience any of these symptoms?

I believe mine must be permanent

[Catseyes235 in reply to Sejem]

Golly gosh I can’t remember but the eating thing sounds familiar but it can’t have lasted. When and where did you have the surgery? I have, now I think of it, got a ‘panel’ of numbness down my nose and to my top lip which I was told at the time, could happen though it might get better. When it’s cold my nose could do with its own cosie but generally I don’t think of it

Now I’ve got other stuff to worry about - AMD and knee pain., !

[Sejem in reply to Catseyes235]

sorry to hear about your knee pain. I had my surgery at moorfields in 2018. the numbness makes it feel tight as I squint, and after the surgery my eyes became very sensitive to light. I wish I had known about this beforehand : (

[Catseyes235 in reply to Sejem]

There were a list of possibilities. But did you not have squint surgery which I did. It was so long ago I can hardly remember the sequence of events but had quite a bit of skin surgery too.

[MaisieGray]

I happened to be reading about it a few days ago, so my knowledge is very limited, but there are different options for treatment on the NHS, including three main types of surgery, depending on what is required - orbital decompression surgery, eyelid surgery, and eye muscle surgery. While you wait for others more knowledgeable to comment, you can read about it here nhs.uk/conditions/bulging-e...

[asiatic]

I agree with catseye when she says you wouldn't want to have surgery when things could still change. You were diagnosed 6 months ago. Thyroid eye disease typically worsens over the initial 6 months, followed by a plateau phase (the next 12–18 months), with spontaneous improvement. This means surgery may not be necessary. Unfortunately the converse is true. Your dose of Carbimzole has been titrated down from 40 to 10 mg. Many Graves' patients go hypothyroid after treatment with ATM and this can cause TED to worsen. We have to wait and see. My TED was quite severe but over the last year it has improved immensely. TEDct have some videos on their site explaining operations.

[Yorkie2019 in reply to asiatic]

Thank you for taking the time to reply. I have an appointment 6th September so will see what the eye specialist says. I can tell my the appearance of my eyes that the retraction hasn’t subsided at all.

[asiatic in reply to Yorkie2019]

Just wondering if the retraction is causing your eyes to not close properly at night making them become dry. If this is the case, I find using ointment and an eye mask helps. I believe BOTOX can also be used. You are right to prepare before seeing the opthalmologist again that way you will achieve the best outcome. Wish you all the best.

[Yorkie2019 in reply to asiatic]

Thank you

[Catseyes235 in reply to Yorkie2019]

Make sure they are specialists in TED and please remember to be patient and wait until your thyroid condition is stable. I have seen people’s eyes improve without intervention. All the best.

[Yorkie2019 in reply to Catseyes235]

Thank you

[cbraffe]

Hi

I was diagnosed in April 2015 . My eyes were so bad I needed radiotherapy and steroid infusion for 3 months twice weekly. It is a journey . I have just a total thyrodecotomy. Good luck with your treatment but leave surgery as the last resort if all fails

[Yorkie2019 in reply to cbraffe]

Thank you for taking the time to reply. I was surprised surgery was mentioned on my second visit

[cbraffe in reply to Yorkie2019]

Sometime all depends on how bad things are. I had most of my treatment planned at my 1st appt as it took 5 years to get a diagnosis

[ZoBo]

I wouldn't rush into eye surgery eyes can settle back in time. Take your time.

[Yorkie2019 in reply to ZoBo]

Thank you! It was mentioned at my last eye appointment (which scared me). I guess it is a waiting game