Is orbital decompression the right decision for me?

[Oesteogenesis]

This is from my other thread but rather in the correct section of the forum

Might actually be a OD candidate legit have every symptom including physical indicators too of proptosis. Appointment soon with my optician to of course verify (its now confirmed in a couple days).

Symptoms i experience

Red eyes
Discharge/Gunk
Inflammation
Extreme pain/discomfort (worse when i wake up genuinely if the surgery didn't fix the aesthetic part and just fixed this i would still be down its so fucking painful)
Extreme Light sensitivity

Physical Symptoms
Excessive sclera show
Negative Orbital Vector
Well of course the eyes bulging out
Not being able to fully close them when sleeping <--- this can seriously effect your vision long term

To avoid the sclera show etc.. i always squint its basically a habit now to perma squint and that gets me by with making my shitty eye area just slightly better.

However im wondering if its actually bug eyes or just horrible structure maybe a mix or some other issue, anyways help would be appreciated thanks.

Im thinking either OD or Lower eyelid retraction maybe both if needed (these can be funded by the NHS since my case in my opinion is severe as i cannot close my eyes fully and have literally every symptom) any others solutions would be useful too.

Pictures

How it looks when fully shut (the white is not meant to show)

 

[Oesteogenesis]

@bossman

heard your in the UK and seem pretty knowledge could you give some advice?

 

[bossman]

Yes it is indicated in your case. It could potentially be thyroid eye disease too.

Two things to note are

- An optician is not going to know shit about this. Your best bet is to convince your GP of the severity and get referred to a consultant ophthalmologist at Moorfields.

- Seems you are based in the UK. Moorfields is very good for ophthalmic issues. I am sure your functional issues will be fixed but don’t expect too much on the aesthetic side. UK doctors are still years behind on everything and have shit aesthetic sense.

Doing orbital decompression alone on the NHS should fix most of these issues. Hopefully they are convinced it is serious enough to do it for free. If you have to go private, I’d go abroad.

 

[Oesteogenesis]

Yes it is indicated in your case. It could potentially be thyroid eye disease too.

Two things to note are

- An optician is not going to know shit about this. Your best bet is to convince your GP of the severity and get referred to a consultant ophthalmologist at Moorfields.

Yes my GP also recommended me to just consult them after getting a referral from the optician. Do you know which location of Moorfields would be ideal? im not sure if it would also be possible since im in Wales.

- Seems you are based in the UK. Moorfields is very good for ophthalmic issues. I am sure your functional issues will be fixed but don’t expect too much on the aesthetic side. UK doctors are still years behind on everything and have shit aesthetic sense.

Yea i mean the functional issues would still be great to get resolved i think ngl thats my main reason, its very hard to live with this pain everyday. Do you think OD can actually have a good aesthetic side though? like i thought OD is just OD, do you mean by like how much mm they will push the eye back?

Doing orbital decompression alone on the NHS should fix most of these issues. Hopefully they are convinced it is serious enough to do it for free. If you have to go private, I’d go abroad.

100% i feel like this is severe, i mean every sympton plus my eyes not being able to fully close already puts this at R1 or R2 im pretty sure.

Thank you for the response i really appreciate it


Edit: Ive had my thyroid checked before and they said the levels were fine (this was not because of my eyes) but i was running HGH so i wanted to make sure i was fine on T4 but ill try get it tested again and see what it says.

 

[bossman]

Yes my GP also recommended me to just consult them and then get a referral from the optician to come to the GP. Do you know which location of Moorfields would be ideal? im not sure if it would also be possible since im in Wales.


Yea i mean the functional issues would still be great to get resolved i think ngl thats my main reason, its very hard to live with this pain everyday. Do you think OD can actually have a good aesthetic side though? like i thought OD is just OD, do you mean by like how much mm they will push the eye back?



100% i feel like this is severe, i mean every sympton plus my eyes not being able to fully close already puts this at R1 or R2 im pretty sure.

Thank you for the response i really appreciate it


Edit: Ive had my thyroid checked before and they said the levels were fine (this was not because of my eyes) but i was running HGH so i wanted to make sure i was fine on T4 but ill try get it tested again and see what it says.

Don't bother doing random blood tests based on what you think.

Moorfields accepts referrals from GP using their platform. You have the "right to choose" (See: https://www.moorfields.nhs.uk/for-patients/plan-your-visit/referral). Convincing your GP to do this should be your only priority.

Unfortunately you will probably have to bite the bullet and go to London. I would assume once for consultation, and then again for surgery, and then for post-op checkups here and there. Any other option is either logistically harder, or you will receive much worse medical care.

In terms of aesthetics:

Yes, moving the eye back in general will harmonise the face, reduce scleral show and the bulginess. The one thing I would point out is that they may decompress more orbital walls than necessary (as the American gold standard of decompressing the deep lateral wall might not be popular here) which can have potential aesthetic and functional issues. But it depends on your Hertel score and a lot of other things. For now, focus on getting the actual issue diagnosed and the extent of it.

 

[Oesteogenesis]

Don't bother doing random blood tests based on what you think.

Moorfields accepts referrals from GP using their platform. You have the "right to choose" (See: https://www.moorfields.nhs.uk/for-patients/plan-your-visit/referral)

Wales sadly doesnt have this but i think i can try convince my GP and see but idk. But i will be going to university in england in about 6 or so months ig so maybe if they refuse i could just wait it out and do it when im there.

Unfortunately you will probably have to bite the bullet and go to London. I would assume once for consultation, and then again for surgery, and then for post-op checkups here and there. Any other option is either logistically harder, or you will receive much worse medical care.

Damn thats quite far but probably worth it.

In terms of aesthetics:

Yes, moving the eye back in general will harmonise the face, reduce scleral show and the bulginess. The one thing I would point out is that they may decompress more orbital walls than necessary (as the American gold standard of decompressing the deep lateral wall might not be popular here) which can have potential aesthetic and functional issues. But it depends on your Hertel score and a lot of other things. For now, focus on getting the actual issue diagnosed and the extent of it.

Alright thanks for the help hopefully everything goes well.

 

[Oesteogenesis]

Don't bother doing random blood tests based on what you think.

Moorfields accepts referrals from GP using their platform. You have the "right to choose" (See: https://www.moorfields.nhs.uk/for-patients/plan-your-visit/referral). Convincing your GP to do this should be your only priority.

Unfortunately you will probably have to bite the bullet and go to London. I would assume once for consultation, and then again for surgery, and then for post-op checkups here and there. Any other option is either logistically harder, or you will receive much worse medical care.

In terms of aesthetics:

Yes, moving the eye back in general will harmonise the face, reduce scleral show and the bulginess. The one thing I would point out is that they may decompress more orbital walls than necessary (as the American gold standard of decompressing the deep lateral wall might not be popular here) which can have potential aesthetic and functional issues. But it depends on your Hertel score and a lot of other things. For now, focus on getting the actual issue diagnosed and the extent of it.

Quick update btw.

They told me yes i have bulging eyes and confirmed the dryness also my inability to close my eyes fully. They said use these eyedrops and ointment to stick the eyelids together (bruh) for 30 days and come back. Ive since looked at a different Optometrist and thankfully found one legit 2 minutes away from me walking and they were used by dad after he lost his eye and they were apparently really good. since specsavers seems to be a bit shit ngl, atleast the one near me. They also told me they will refer me to the gp for a thyroid test as they suspect TED.


After the 30 days they said if its not manageable/doesnt get better, they will also refer to the gp.

I was wondering if you knew who Mr Jimmy Uddin is? and if hes ideally the best person at moorsfield for TED, he seems quite experienced and likely who id go with so just wanted to know if you maybe have any concerning information youve heard about him?

 

[bossman]

Quick update btw.

They told me yes i have bulging eyes and confirmed the dryness also my inability to close my eyes fully. They said use these eyedrops and ointment to stick the eyelids together (bruh) for 30 days and come back. Ive since looked at a different Optometrist and thankfully found one legit 2 minutes away from me walking and they were used by dad after he lost his eye and they were apparently really good. since specsavers seems to be a bit shit ngl, atleast the one near me. They also told me they will refer me to the gp for a thyroid test as they suspect TED.


After the 30 days they said if its not manageable/doesnt get better, they will also refer to the gp.

I was wondering if you knew who Mr Jimmy Uddin is? and if hes ideally the best person at moorsfield for TED, he seems quite experienced and likely who id go with so just wanted to know if you maybe have any concerning information youve heard about him?

Nice, seems like things are falling into place.

GP can tell based on thyroid levels if it seems to be TED or not. But even if your thyroid levels are fine, just tell him the drops aren’t working and your symptoms are still severely affecting your quality of life. Try to get that referral to Moorfields no matter what.

Jimmy Uddin is one of the leading surgeons at Moorfields and does have OD experience from what I can tell. So he should be able to do a fine job. I think the best in the UK is Daniel Ezra but Jimmy should be fine too.

Orbital decompression is a very mechanical procedure. It’s hard to give a bad result, but it’s easy to cause complications if the surgeon has bad technique. So as long as his complication stats are fine then he should be fine, and so should any surgeon at Moorfields.

 

[Oesteogenesis]

Nice, seems like things are falling into place.

GP can tell based on thyroid levels if it seems to be TED or not. But even if your thyroid levels are fine, just tell him the drops aren’t working and your symptoms are still severely affecting your quality of life. Try to get that referral to Moorfields no matter what.

Yep, if they don’t let me refer it’s chill too since I’m going to uni in England which means I’ll have right to choose anyways. But hopefully Wales lets me get referred, I’ll bring up the claim that they are specialists and also how my dad lost his eye in wales due to a surgical error maybe larp my way by saying I’m scared or mental health anxiety etc.. saying I want to go to moorsfield, funny enough my dad actually went there after the surgery failed and said they were great and he wished he went to them.

Jimmy Uddin is one of the leading surgeons at Moorfields and does have OD experience from what I can tell. So he should be able to do a fine job. I think the best in the UK is Daniel Ezra but Jimmy should be fine too.

Can you request specific consultants through the nhs? I’d love to ask and see if Ezra does it.

Edit: yes he does provide nhs stuff at moorsfield pretty cool I’ll try see if I could get a referral specifically to him.


Also I appreciate the help dude, you’ve been hella helpful in this process so far.

 

[dhusc]

This is from my other thread but rather in the correct section of the forum

Might actually be a OD candidate legit have every symptom including physical indicators too of proptosis. Appointment soon with my optician to of course verify (its now confirmed in a couple days).

Symptoms i experience

Red eyes
Discharge/Gunk
Inflammation
Extreme pain/discomfort (worse when i wake up genuinely if the surgery didn't fix the aesthetic part and just fixed this i would still be down its so fucking painful)
Extreme Light sensitivity

Physical Symptoms
Excessive sclera show
Negative Orbital Vector
Well of course the eyes bulging out
Not being able to fully close them when sleeping <--- this can seriously effect your vision long term

To avoid the sclera show etc.. i always squint its basically a habit now to perma squint and that gets me by with making my shitty eye area just slightly better.

However im wondering if its actually bug eyes or just horrible structure maybe a mix or some other issue, anyways help would be appreciated thanks.

Im thinking either OD or Lower eyelid retraction maybe both if needed (these can be funded by the NHS since my case in my opinion is severe as i cannot close my eyes fully and have literally every symptom) any others solutions would be useful too.

Pictures


View attachment 4650731



View attachment 4650732


How it looks when fully shut (the white is not meant to show)

View attachment 4650739

Yes

 

[Oesteogenesis]

Nice, seems like things are falling into place.

GP can tell based on thyroid levels if it seems to be TED or not. But even if your thyroid levels are fine, just tell him the drops aren’t working and your symptoms are still severely affecting your quality of life. Try to get that referral to Moorfields no matter what.

Jimmy Uddin is one of the leading surgeons at Moorfields and does have OD experience from what I can tell. So he should be able to do a fine job. I think the best in the UK is Daniel Ezra but Jimmy should be fine too.

Orbital decompression is a very mechanical procedure. It’s hard to give a bad result, but it’s easy to cause complications if the surgeon has bad technique. So as long as his complication stats are fine then he should be fine, and so should any surgeon at Moorfields.

Yo I need some advice

I went to a new optician and they legit just said it’s not bulging and my eyes are just big, and they said to use ointment just to shut my eyes close basically for the rest of my life. I’m really unsure of what to do, do I just use the ointment and say it didn’t work or what. I asked multiple times what about the root cause and the they said its not a threat to vision when your eyes not closing legit is a threat to vision lmao. Specsavers might be better imo



They legit basically said your eyes no closing is not a threat to vision JFL when it legit is by multiple sources and huge hospitals.

 

[Oesteogenesis]

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