keratoconus- sight loss

[GAW19]

My partner is 27 and was diagnosed with keratoconus a few years ago. He has tried specialist contact lenses with no success.
He was told yesterday at our specialist hospital that his left eye is 'too far gone' for surgery and it is basically a waiting game to go blind in that eye.
He can have surgery on his right eye to try and stop the progression of his condition.
I was just wondering, does anyone know if there is any help he would be entitled to or if anyone has been through the surgery themselves?

Anyone?

DS has kerataconus. Diagnosed at 14 - if your partner has a later onset that is good news as I understand it tends not to get worse after a certain age.
DS had cross-linking which isn’t surgery as such, more a procedure. Surgery as I understand it would be a corneal transplant. Cross-linking was very painful in the immediate aftermath but no complications. But it hasn’t worked and there has been further deterioration since. It’s not a guaranteed success (clearly) but the failure rate is on the high side. And it only stops further deterioration, and doesn’t improve sight.
I would say go for cross linking but be aware it may not work. And hope his condition stops getting worse as he gets older. Sorry - lots of sympathy for him. It’s very stressful!

My DS also diagnosed with kerataconus at 25. He had cross linking - which as PP said is extremely painful for first 24hrs - and that has been successful. He’s currently being monitored before his other eye has to be done. There’s a “window” apparently where the eye is bad enough to need the procedure but not too bad to make it pointless. His eyesight in his crosslinked eye has stopped deteriorating and we’re very relieved.

Thank you @WhyIsMyKitchenSoCold @Reasonistreason
He was diagnosed at around 21, his left eye got very bad very quickly. We have seen many specialists who have said it's game over for that eye. All he can see is blurred shapes, cannot work out facial features etc.
Really hoping the cross linking will work in his right eye 🤞🏻 we have two little girls both under the age of 2, it will be devastating if both eyes worsen.
Are either of your boys deemed as sight impaired/ partially sighted? Do they get any government help?

DS has to wear glasses to drive (legal requirement) but other than that he wears his glasses on and off depending on how his eyes are feeling. He uses a laptop for his work and is on it pretty much constantly so he also uses dry eye drops and (tries to) ensure he has breaks from screen time. While his eyes aren’t great without glasses he can go without depending on what he’s doing. Definitely not deemed sight impaired/partially sighted.
Consider ourselves very lucky it was picked up by our opticians initially tbh.

DS can’t really see anything out of the affected eye but the other one is ok at the moment - mild short sightedness but corrected with glasses. So I don’t think he would count as legally visually impaired. My big worry is the good eye deteriorating too, as it is unusual apparently for only one eye to be affected.

They wouldn't register someone as partially sighted if they have only one poorly seeing eye, so no he wouldn't be entitled to any benefits.

Why has the contact lens fit failed? Was it a comfort issue. There are lots of different options for contact lenses for keratoconics. It may be worth asking for a referral to Moorfields contact lens fitting centre for a second opinion.

Your husband should definitely go for cross-linking in his better eye, it's the best chance for retaining his vision.

There's an interesting new treatment for people who are not suitable for cross-linking called Xenia, which has less side effects than corneal transplantation. I don't know much about it, but it was trialled at Optimax before COVID hit.

@underneaththeash We are a 4 hour drive away from moorfields unfortunately.

He was under 3 different specialists at once who all tried what they could with the contact lenses, he was told at the beginning that his left eye was very bad and they may not work, which unfortunately they didn't work. His eye kept getting worse and now is extremely thin.
He is currently just waiting for a letter for the cross linking on his right eye, hopefully it won't be too long.

How long was your boys in hospital? They have said it will be 48 hours recovery time

He was out after about 4 hours. 24 hours of acute pain, then maybe another 2 days of intermittent pain manageable with local anaesthetic.

My DS also had keratoconus diagnosed at 14. We paid for private crosslinking because at the time it was not available on the NHS. He had bothe eye done within 6 months of each other. He is now 25 and has good eye sight in both eyes. He wears piggyback contact lenses so wears a soft lens with a gp lens on top. The soft lens makes it more comfortable to wear the Gp len which correct the vision.

We had pretty atrocious advice and help from the NHS to be honest but it was 10 years ago so I hope things have changed. If we had waited for the NHS crosslinking would have been too late as my DS cornea's would have been too thin. So do not be afraid to be that patient that hassles the hospital!

He had the procedure done and we drove home immediately after it. We returned the next day for a check and then again at the end of the week.

He was in discomfort for about 24 hours but then was ok and up and about although wearing sunglasses. He was given eye drops that helped with the pain. It was not so bad and he was happy to go back to have the other eye done.

It is very unusual to lose sight in your eye due to keratoconus so is something else happening as well? Has your partner discussed a corneal transplant in his bad eye? The results can be fantastic.

If he is registered blind or partially sighted he may get some help but I think it is pretty hard to get

RNIB may be able to help re benefits

facebook page for GB keratonconus patients and loads of info they may be able to help re benefits and good hospitals near you

It can be stressful but also do not give up hope as our situation has had a positive outcome and for many people it can be a situation that is greatly improved. I really hope this is this case for your partner even if you do have to fight for it!

DH has kerataconus, he was diagnosed in his 30s. He doesn’t qualify for cross linking because he is not progressing. However, he has now been told to only wear contacts for an absolute maximum of 8hours per day which is quite limiting. His glasses don’t correct his vision. Without his lenses he can’t see very well at all. I don’t have any solutions or suggestions but wanted to let you know that your DP is not alone. It is a really frustrating and not well publicised condition.

Hi. Sorry I hope you don’t mind me
Jumping on this thread, it’s the only one I found about this. Do you mind me asking for those who has have the cross linking or children had it, how long did the recovery take? My husband had it today (diagnosed last year age 40) and he is really in a lot of pain. We were only recommended for him to take paracetamol but it’s just not touching it 😭 can anyone recommend anything that may help? Thanks.

I was given dihydrocodeine as paracetamol just doesn’t cut it (maybe see if a pharmacist can give him stronger painkillers). The first day/night was painful but then it eases. Try something cold from the freezer wrapped in a towel. I stayed in a dark room, kept on top of pain killers and used the anaesthetic drops that they gave me for that first night to try and get some sleep.

@user1491673642 I had cross linking in March 2020. The pain was excruciating for 3 days then went completely. I had a cornea transplant in my other eye in 2008 and that was much worse and a longer recovery. @GAW19 why can’t he have a cornea transplant?

My DP was diagnosed as a teen and has worn specialist contacts ever since. He's never had surgery (not sure why / if it was offered). Without his contacts in his vision is non-functional, but with them he can manage fine, drives, works on the computer etc.

@user1491673642 My DS had 24 hrs of discomfort. He sleep through it but we were given more than just paracetamol. He had eye drops with anesthetic.

I do hope your DH feels better soon - this time tomorrow he should hopefully be feeling a bit more comfortable.

@Ohthereyouarepeter

I was given dihydrocodeine as paracetamol just doesn’t cut it (maybe see if a pharmacist can give him stronger painkillers). The first day/night was painful but then it eases. Try something cold from the freezer wrapped in a towel. I stayed in a dark room, kept on top of pain killers and used the anaesthetic drops that they gave me for that first night to try and get some sleep.

We were told he couldn’t have anything like codeine as it’s could cause a bad reaction 🤷🏼‍♀️ Hopefully he will be better tomorrow. X

Did he get local anaesthetic drops? That was the only thing that worked in the first few days for DS. Excruciating.

DS has kerataconus , school nurse picked it up when he was 11 and we spent a few years going to see various people until we asked an optician to recommend a specialist
Long story short , he was referred to Bristol eye hospital , and had his worst eye crosslinking procedure at 18 ( first year of Uni , he had to leave on medical grounds and start again the following year on advice from his tutor )
Bad pain , but once home and the eye drops went in , the relief was instant
He was only in hospital for a matter of hours , 24 hours at home in a darkened room , and sunglasses for sometime afterwards
Second eye done at about 23 , he did come home to stay with us to recover .
He manages now with glasses ( thick glasses ) but can drive and use IT for work ( and Xbox )

@WhyIsMyKitchenSoCold

Did he get local anaesthetic drops? That was the only thing that worked in the first few days for DS. Excruciating.

No he wasn’t given anything for the pain, just told to take paracetamols. Just been and got some stronger Co-Codamol from my sister for him to take before bed. Hopefully he will have a good night and feel a little better tomorrow. Thanks.

I feel for him with the pain I’ve only ever had bad sight in one eye, the others false Moorfields registered me blind years ago. Hope he feels soon op that sort of pain is dreadful.

My other half has it, and about 8 years ago had the transplant.
Life changing.
Still lots of regular appointments for oth eyes and injections in the eyes .... ouch

Definitely ask about the transplant. It was freaky for a day or so... but you get over that quickly. Day surgery and rest for a few weeks.

@HappyPumpkin81 I wasn't with him at his last appointment and he is really bad at asking questions haha, but our local specialist said from the beginning he may be too bad for it, and since he has been at Hull Royal Eye Hospital they have said there is nothing else they can do for him, didn't explain why.
Hopefully once he has cross linking in his right eye we will push and see if they can atleast do something.

Question for everyone, when he has this cross linking on his right eye, he really cannot see using his left, any suggestions to make things easier for him? Obviously I will help him as much as possible but we have 2 girls under the age of 2 and family are nearly 4 hours away x

Tbh he’ll probably not be feeling like doing much for at least 24 hours. Once local anaesthetic wears off my DS found it incredibly painful rest of day and all that night. (Nurse said it’s the most painful eye op they do at DS hospital) Next day not great but better. He was allowed to watch tv but not allowed on his laptop for at least a week. There’s not much he can do but rest and watch tv. And administer all the antibiotic drops/clean eyes etc

I thought I’d share my story. I have keratoconus. I was diagnosed at around age 35, almost 20 years ago. Prior to this I had only worn glasses for a year. My sight had always been pretty good, but suddenly deteriorated. At first I was devastated by my diagnosis.
I wore hard lenses for around 8 years and while these gave me near perfect eyesight, they hurt like hell, were always dry and made my eyes red.
I go to a low vision unit at a hospital and they could never seem to make up prescription glasses that were of any benefit. Fast forward to now, my condition never really progressed. I now wear specialist soft contact lenses. They are called kerasoft. They do not give me as good a vision as the hard ones, but they are much more comfortable.
I also have glasses that I use at home. I was spending a fortune on glasses that didn’t work and the hospital basically enlarged the eye chart to six letters and made up my prescription from that. This is because I couldn’t even read the top line of the eye chart. A supermarket had an offer to make up cheap glasses, so I took a chance and found them much more useful. I have since gone back and upgraded now I know it’s not a waste of money.
I think it is better to be diagnosed later in life. I don’t think I’ll ever require surgery. I live a pretty normal life. I choose not to drive, as I would not feel safe doing so. I am able to read quite well (labels etc) without any aids, and with cheap reading glasses over my contacts.
I have also tried pinhole glasses in the past to watch tv. These helped when I could not wear glasses, but now I just wear my glasses.
With the keratoconus you do not go completely blind, the sight just deteriorates.
I just wanted to share because it has very little impact on the way I live.
As for benefits I do not receive any, my lenses are through the NHS, but I pay around £130 a year for them. They are not the disposable ones. I usually get 2 pairs a year.