My experience being diagnosed with Keratoconus and having Corneal cross-linking
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- เผยแพร่เมื่อ 25 ม.ค. 2020
- Find out more about Corneal cross-linking (CXL) from Moorfields Hospital - • Corneal cross-linking ...
Keratoconus group on Facebook: / keratoconusgroup
Ben talks about his experience of being diagnosed with Keratoconus and then what it felt like to go through the corneal cross linking operation. Keratoconus (KC) is a disorder of the eye which results in progressive thinning of the cornea. This may result in blurry vision, double vision, nearsightedness, astigmatism, and light sensitivity.
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I just got diagnosed. Thank you so much for calming me down so much :( all I heard was disease, incurable and surgery for a disease I didn’t even know I had. It was really scary. You made me feel a lot better :)
Hey Lori I'm glad to hear my video helped calm you down. The thing to remember is it's treatable and life will continue on past when you get diagnosed with Kertaconus. I now have a daughter and forget I even have it most days.
@@BenPaton81 thank you so much. I have anxiety so it was super scary for me to find out. this means a lot
@Ro Mel that's still experimental at the moment. My doctor told me about that, as I had my CXL procedure on my right eye two days ago, and go in for my left eye next month. But my Doc mentioned that, but said he thinks it'll probably be 5-10 years before it's publicly available. But I'm hoping they perfect it. It's only in testing in those countries you mentioned.
@@tylerwatson9332 how much did the recovery hurt after the procedure was done
@Ro Mel lies only people can have prk if it’s not bad and it can come back and progress more again
Thank u so much for sharing ur story, man. Stay strong, everyone.
No worries, I'm glad it helps some people!
Just got diagnosed with keratoconus at the age of 21. Thanks for calming me down, I thought I was going to go blind. I used to frequently rub my eyes whenever I had allergies and this probably made the condition worse. I’m going for my cross linking within the next 3 months, wish me luck.
Good luck friend. I barley have my consultation today. I’m 20 years old, and deep down I knew I had something in my eyes due to one being blurry. I hope for the best for everyone with this disease.
Good luck for the cross linking. I'm glad my video calmed you down. Wish you all the best!
Best of wishes to you too!
exactly same to me same age same thoughts :D stay strong king
Thank you so much for telling your story! Your story will definitely help others suffering from keratoconus.
Thank you for saying so, it was an early TH-cam video and not that great quality but I'm glad it has helped people.
Thank you so much for making me feel more comfortable I have my Crosslinking procedure coming up March nineth
Best of luck! I'm glad my video gave you a little more comfortable.
All the best. You will be fine. Let us know how it all goes
Thank you for talking about the full process from diagnosis to after care, it was very reassuring to hear since when I too was told I had the disease when I was getting a standard eye test and it put me in a whirlwind.
I'm glad my video has helped you. Sending you my best wishes as it sounds like you are on a similar path
@@BenPaton81is the double vision is common during prk after surgery
Glad I came across this. I go for my consultation tomorrow. I’ve transitioned to scleral lenses since 2019 (which has been great) and the doctor has seen minimal changes in my mappings etc.
hoping for good news tomorrow. I am scared of surgery.
Good luck for your consultation! Don't be too scared of surgery, if you are recommend cross linking it will stabilise the disease and once done it's out the way and you can forget about it.
I have a question about scleral lenses. Do you have irritation or pain if you wear it for a long time? What precautions to take?
Same here. Just got admitted to the Keratoconus club last month after being told by the Optometrist with my left eye blurry vision. Thanks for making this video it really calmed my nerves about going blind or something, lol. Off to see the Ophthalmologist next week - cannot wait!
Sorry to hear that but glad my video helped. Wishing you the very best of luck with it!
@@BenPaton81 Cheers mate! Everything is pretty well at the moment. Still seeing a tad bit blurry, but your video was incredibly insightful so thanks! Wishing you the best in your life Ben
Thank you so much for responding.
I talked to my daughter today. Her cross linking was two weeks today.
She said to be she feels her blurry eye is staying stagnant that it’s not getting better but staying the same.
I am praying this will end and she will not be blurry any longer. I’m kinda worried about it staying the same for over a week now.
Don't think it corrects vision just helps from progression
Thank you for this video. I just June done in both my eyes by NHS under local anaesthetic. I will not recommend doing both at the same time! Please get one at a time!
Very informative video. X
Thanks for sharing your experience! Yes I would recommend doing one at a time otherwise you risk having complete blurry vision during the healing process.
Thank you so much for this. I was diagnosed with keratoconus today when i went in to get my eyes checked for the first time ever in my life hoping to get maybe prescription glasses but nope, I've been feeling quite depressed due to that but your video surely gave me hope to fight this condition. Cheers!
Hi Jamal, I'm glad my video helped, I was the same as you, quite depressed when I was diagnosed and I remember coming home and crying. There are loads of Kertaconus support groups on Facebook which are worth joining to so you can talk to people with the same experience. Four years on now and my consultant has discharged me and I forgot I even have it! You will get there.
@@BenPaton81 did you go private treatment mate, I've had this eye condition since I was 17, I've had an eye graft done in both eyes, the stitches are still in & they keep breaking, this has been for 3 years now, I have sore eyes every other day & Stitches keep breaking, if you have any advice on what I can do going forward please let me know. Take care.
Same experience I thought dat they were going to give me glasses but making scans they told me its keratoconus and they told me DAT in order to give me glasses they have to first do an operation which operation I have gone through this very week on Friday but
Thanks for making this video. I'm headed in for cross-linking today.
Sending you my best wishes, I hope everything goes well. Be patient with the recovery.
Great vid. Thanks for sharing your experience
My pleasure
Thanks for sharing this story, I was interested in hearing about someones experience with the cross linking.
I'm glad it was helpful and people are finding this video useful!
What a small world, I'm also from Romsey and have to go to the general to see Dr Hossain, but my appointment isn't until September 2021 due to COVID. I was referred two months ago after a routine appointment, was very nervous to hear them say that I need to go to the hospital but your video has given me lots of really helpful information and settled my nerves a bit. Thanks!
Hi Lauren, it is a small world! Dr Hossain is really good. In fact 4 years on he has discharged me and I no longer need to see him for yearly post op check ups as he is fairly certain the Kertaconus has stabilised. So now I'm just back to regular opticians appointments. September 2021 is a long way away, any chance you can go private? Covid has really a lot to answer for. If you are nervous or want to chat more about what to expect DM me on instagram. Best of luck!
@@BenPaton81 Oh that excellent news!. Yes it is a long way away, they do keep saying they're trying to bring it forward, so if I don't hear anything by the end of January or if I feel my sight is getting worse, I think I might consider going private. Thank you!
My daughter just had cross-linking surgery completed at the Mayo Clinic. Her provider went to college at the University of Nottingham and we were so blessed he knew of this option (only available in the US since 2008). Thank you for sharing your story.
Thank you, I hope your daughter is doing well.
I am about to be seen at mayo for this too in July. Just got diagnosed. Hopefully all goes well.
Thank very much for your well exponeti
Thank you!
Thanks for this just had mine yesterday and feeling a lot better after 24hrs
Great to hear! Hope your recovery goes well!
Thank you very much that's what I really need.
Glad it helped
I am so nervous for my procedure, it is eating me alive. Thank you so much for making this content, it’s literally my story as well!
You got this! You will be fine. It's natural to be nervous, I was. Send you my thoughts.
@@BenPaton81 were you awake for yours?
Just been diagnosed with the disease in both eyes and now waiting for a date for cross linking! It seems they have caught it reasonably early! But I’m still freaking out to be honest, but just a waiting game now!, thanks for you video it has calmed me down a bit!
Try to stay positive, it's a really good thing you have caught it early. You will halt the progression with cross-linking and with a bit of luck never need to worry about it again after that!
Thank you for sharing…very detailed
My pleasure 😊
This is very enlightening. Thank you. My son is scheduled for this surgery and I am petrified.
I'm glad my video helped, wishing your son all the best!
This video really helped me ♥️. Thank you - I got diagnosed today
Glad it helped! Wishing you all the best🫂
How are you feeling now and did you get the surgery done?
Hope you make it to Australia - thank you for your video :)
I hope so too!
Thank you so much for sharing this , I was diagnosed yesterday and I am panicking right now I was about to cry but this video helped me a lot to calm down
I remember crying when I got home from the hospital when I was first diagnosed thinking it was the end of the world. I'm now eight years down the road and after cross linking, most days now I forget I was even diagnosed with this disease. I hope you have a similar experience too. Wishing you all the best and I hope you overcome it, I feel confident you will!
@@BenPaton81 thank you very much, I feel the same way right now, I just don’t see the reason to live anymore with this disease.
Your explanation is very good I recently got diagnosed in keratoconus in both eye I underwent c3r . eventhough im happy atleast the progression is stopped
I'm glad to hear you got cross linking. Hopefully that is it now and you can get on with the rest of your life.
Hi, after C3R now is evrything alright? How much time it took to join back to work?
Thank you for your story
Thanks for listening to it!
Just had my right eye done today.
I hope all went well. Recovery can take some time. Months in my case. Just be patient with the blurriness.
@@BenPaton81 thanks for the kind words. Yeah vision blurry. Forts day it was like looking through a prism. Got better as days progressed. Now it’s like looking through a very dirty window. First night was serious pain. Had to take norco. Only took one pill been fine since.
Hey-- the UV light doesn't break your eye down lolol. Instead, it works with the B2 to strengthen it :P
But hey I'm glad you got it taken care of :) Thanks for sharing your story!!!!
I've had mine 13 years and went to optometrist this past summer and told her how all of a sudden my right eye was my worse eye and my left eye was better and I couldn't see much out of either of them and all she did was threw a new prescription my way (which ended up changing again next month)...She completely ignored my concerns and missed the diagnosis! so...I went to a free lasik appt (I have medicaid lol) and that's where I was diagnosed with KC!
After much research, I got PRK & CXL done in my worse right eye at a center outside of the US. It took about a month to see again but by golly, I can see SO MUCH BETTER out of that eye! It went from 20/100 (best corrected 20/60) to 20/25 now 4 months post op!!!!
A week ago I had CXL in my mild left eye so I can't see much out of it now, just thought I'd share that with you .PRK & CXL is done in many countries and has good research behind it if you ever want vision correction!
I guess it's the way I always thought of cross linking working, breaking it down so the cornea grows back stronger, probably not medically correct.
I am 29 and I was diagnosed with keratoconus yesterday (9/27/2021) and I’m more scared of going blind than anything. Not scared of surgeries as I’ve been through an arteriovenous fistula placement surgery, a kidney transplant, 2 bunion surgeries, and 3 hip replacements. I don’t want to take off work for a long period of time but I supposed the procedure is worth it.
Hi Kendra, wow it sounds like you have had a lot of surgeries this will be the least taxing of them probably Make sure you get cross linking if you are offered it, it should halt the progression and then your fear of going blind will never come true. Sending you my best wishes!
@@BenPaton81 thanks, my surgery is now scheduled for October 31, 2022. starting with my left eye.
@@kensational1 How did it go? Is there any improvement in your vision? I've been recommended to get it done by my doc.
@@varun123rup I had this done on Monday in my left eye, vision still pretty blurry. Insurance wouldn’t cover my right eye.
U r a real warrior
Good luck with the goal of visiting Australia soon :P
Thank you, I actually had tickets booked last year but then covid struck!
Thank you for the reassurance. I’ve been diagnosed with kerataconus only a few months ago. My left eye is really bad. Right eye is still fairly good. I’ve been told my left eye I cannot get cross linking done as it’s gone beyond repair. However, I’m on the waiting list for my right eye (really difficult with the NHS). I suffer from eczema which has worsened the situation through rubbing of the eyes 😢
Hello, thanks for your comment. I'm sorry to hear about your left eye at least you are on the waiting list for your right eye. You might be able to have it done faster privately but it will cost a few thousand but if not I hope the wait isn't too long for you. Yes there does seem to be a link between eczema and keratoconus unfortunately. Wishing you all the best.
I have the same diagnostic left eye still pretty decent can see perfectly when I squint but right eye needs a corneal transplant. Did you get cxl already, and if so what was the recovery like. Pls answer I’m really anxious and thinking I’m going blind
I have this eye disease also. Just like you my left eye is fucked and my right eye is my good eye. I’ve been referred to get my right eye cross linked to prevent that eye getting any worse. Guessing just like you I’ll have both operations and hopefully it’ll improve how yours have. Thanks for this vid mate
Glad this video was useful. Wishing you all the best for your cross linking!
Your a brave guy, I have the same condition.
Thanks, wishing you all the best.
@@BenPaton81 hi Ben kind regards all the best for the future.
Amazing difference between the US and Britain. It’s tragic really. My son had this surgery in his weakest eye yesterday. We had to pay$1780 in advance just for the vitamin B. We will have to pay 30% of the surgery cost after the insurance claim goes through. Of course we did it. We would do anything to save our son’s sight. It’s just interesting that you had the option to take 2 weeks off and get general anesthesia. My son we go back to work after three days off. He was given a pill to relax him before the procedure and was sent on his way after with a contact bandage. I took vacation days to look after him, and he’s fine. I am grateful, but I wonder about people who don’t have paid time off and decent insurance. I live in the wealthiest country in the world, so there’s some irony. Anyway, congratulations on your success. I hope my son sees similar results.
I'm glad you got the treatment your son needed even if you had to pay for it. It's tragic really a wealthy country like the USA doesn't provide it's citizens with decent healthcare and they must rely on overpriced insurance. Land of the fee...
In India it costs 20,000 inr approximately 240 usd. You are welcome to india when it becomes hard there
Big shout out to that optician, who is the first to discover that you have signs of Keratoconus.
We need more opticians like him👍
Good call, I'm very thankful he spotted it
I'm glad I came across this video I've honestly been a little depressed ever since I was diagnosed with this. I knew my blurry vision was a little more extreme because glasses weren't helping. I have a appointment scheduled in September I've been contemplating but this video and these comments are having me really deciding to just go through with it. Thank you all
Thanks for your comment Isaiah, just remember you will get through this. I'm glad my video helped a little, have a look at joining one of the keratoconus support groups on Facebook. It helps to hear from others who have been through it. Best of luck for your appointment and the future!
Hello! Today is my fourth day post op and I was getting so worried that the blurry vision wouldn’t go away. This helps me calm a bit. Hope my vision comes back quickly 😭
exactly it's been 12 days to mine. its blurry
Hang in there, might take a couple of months but your vision will get back to where it was if not a little better but at least you will know you halted the progression of the disease
@@AishaAhmed-dj5xv how is it now
How is it now?
@@deepp0 Honestly I think I got the short end of tue stick lol. My vision eventually came back, but I feel it didn’t got any better. It feels like its the same and sometimes a little worse. Nothing too worrying though. Im not blind like I felt at the beginning. I suppose the main idea of the operation is to stop the condition from making progress and not entirely to help you see better.
I’ve had cross linking done in my right eye that and scleral lenses have been amazing for me but people please remember cross linking does not clear your vision it stops the progression and retains what you have left. I keep seeing comments with people assuming after cross linking there vision will be better well guys it won’t. But it’s a good surgery to stop or greatly reduce the progression of the disease
Yes this is what I try to tell me if they message me, it's purpose is to halt the progression of the disease. You are lucky if you get any improvement post op.
This So thank you for that I just got diagnosed yesterday and I still have 2020 vision with glasses but I am very terrified that overtime even glasses won’t be able to help so I am looking into immediate courses of action
Hey Andrew sorry to hear that, I had a hard time when I was diagnosed with it. It really isn't the end of the world or anything, they have good treatments now with cross linking. Hopefully you will get cross linking done it will stop the progression and like me you will never need anything stronger than glasses.
@@BenPaton81 thank you so much!
Never touch your eyes,don't sleep on your belly with your face against pillows, DONT RUB AND YOU WONT progress.There have been some cases where stopping eye rubbing lead to regression of the cone insted of progression.Stay strong.Best of luck. Regards Dr.G
@@thechimericedits8843 well I haven’t done cross linking…. And I’ve gotten two tests since my first, and I only sleep on my stomach (I don’t rub my eyes anymore though) and no progression. Tbh I feel keraticonus is random and progresses randomly ugh.
Thanks for sharing this. My brother has the disease and had to have a corneal transplant over 20 years ago. Now my son has it and I wanted to know how painful the crosslinking was going to be.....
The cross linking pain I'd describe in my experience was like having a paper cut in the eye combined with sunburn, it's not that pleasant but it's manageable with strong pain killers you don't feel that much and after 12 hours or so all pain is gone and it is worth it in the long run.
I got diagnosed with keracotonus about a month ago. I looking forward to get cross linking done. I hope it would resolve my vision issue as well as stop the progression of the desease because I’ve always tried to use glasses but can’t get used to then. Your experience gives me hope . Thank you for sharing
I'm glad you found listening to me ramble on helpful. Wishing you the best of luck with your journey too!
@@BenPaton81 Ben Paton , brother , I have had CXL 10 days ago and my vision is very blurry and foggy , can't read text and faces clearly , it is worse from before CXL ,
How long will it take to recover and come back to how it was before CXL.
Waiting for your response
@@ihtishamulhaq2378 dude you just had surgery on your eyes! It will get there
@@ihtishamulhaq2378Update bro?
Thank you so much, I'm an 18-year-old guy who recently got diagnosed with it, super nervous about cross-linking, hopefully it goes well
Wishing you the very best! Operations I think are always scary but you will be fine and many people have had it done before you. It will be over quick and you just have to remember why you are doing it, to halt the progression of the disease. It will be worth it.
@@BenPaton81 for sure! Thank you Ben!
@@Yeskid133we Im 22, i have it tomorrow and pretty nervous about it too, hope it goes well
@@fsxanas90 you il be fine bro! Just keep your head up, and know that better days are coming after the CXL
@@Yeskid133we Thanks Bro! i did it, the surgery wasnt that bad except 1 part were i wasn't numb anymore and my eyes did hurt/burn until i told the doc to add more eye drop to make it numb again, otherwise i didn't feel any pain after the operation. like at all, its day2 but the lens rlly is uncomfortable and feels like a smol sand in my eyes sometimes which is annoying cant wait until i remove it
I got diagnosed when I was 15 and I’m having my first cross linking treatment in 6 days
I'm glad you are getting cross linking. Wishing you all the best for your treatment!
Thank you for this video! I was referred to an eye hospital in late March after a routine opticians appointment, and few days ago I recived keratoconus diagnosis which I was prepared for, but still came as a shock. I'm in my 30's so I didn't expect to be offered corneal crosslinking, but I was and ever since my anxiety is spiralling.
I decided to have surgery on both eyes together due to my situation but now I have doubts 😔
What are your doubts? I think you are doing the right thing :) Wishing you all the best for the journey ahead. There will be a few tough times but you will come out the other side and eventually forget all about this period in your life!
I have had kerataconus since 21, progressed fast, had both eyes cornea transplanted, after several attempts of other trials in errors... I had tear ducts put in, you name it, at the time cross linking was not even heard of at the time..I'm still struggling with kerataconus and contacts every year, now I'll see about this new cross linking!!
Definitely worth giving cross-linking a go if recommended by your consultant, sounds like you have really been through the ringer! I didn't realise that you can still get keratoconus after a cornea transplant!
Yeah, I have a cross-linking coming up in less than 2 weeks now. I've literally been getting more anxious and mainly frettin about future pain afterwards. I just hope I'm one of the people like you who who didn't have pain for that long.. 😅😅🙄🙏 I've been watching as many story share vids as I can find. 😅😂
Thinking I may do a share video myself. They definitely help me.
Yes definitely do a video it will help others and you may have a slightly different perspective or experience
Wishing you all the best and yes hopefully a speedy recovery! Yes the pain only lasted for 12 hours for me. Not that pleasant but then 12 hours goes by quickly.
@@BenPaton81 Also, from what I've seen so far, I guess I'll probably sleep a lot first couple days or so with the help of painkillers too. Lol Not sure, but I won't mind sleeping 😴 😅
@@BenPaton81 And I'll be awake and aware during it. 😱 BUT I think I'll be fine.
My grandson is currently being managed by Moorfields for his keracatonus.
Had his procedure on Monday
Glad to hear he is being treated, I hope all has gone well for him and I wish him a speedy recovery
How is your granson doing?
I know the feeling....i felt the some way when I found out that I had the disease has well
🤗
I go for cxl surgery in 1 day. My anxiety has beyond taken control. I was never told about contact lenses instead of surgery and kind of wish I new about them. Im not worried about the pain so much as the sitting total still for an hour being awake as he scrapes my eye and just not being able to move. He gave me Ativan to take the day of to help but still im non stop worried and now on TH-cam watching every video on cxl. I swear I could almost preform the surgery myself now haha jk. Thanks for your video though it has helped the anxiety to some extent . Ide rather get this minimal invasive surgery vs a major one. The doc is letting my wife join in the room so my hope is talking to her will distract me enough to not fidget around.
Post op now. And im happy I did it . The surgery was painless and the doc was great with me and my anxiety. I now feel happy I took the first step in stopping my disease from getting worse. To anyone nervous for cxl please don't worry. In the end yes after was uncomfortable but totally manageable with drops and pain meds. Just sleep sleep sleep and 2 days later will feel fine. I jad surgery yesterday and am currently out fishing on the river with my sunglasses on happier than ever.
Thanks for taking the time to share your experience here, wishing you all the best for the future and a speedy recovery!
I get my surgery tomorrow, looking all over TH-cam the night before because my nerves are getting the best of me right now haha, I wish I had known about the contacts as well before deciding on the surgery. How has your recovery been? What was your eye sight like after 2 weeks I’m nervous to have a blurry eye this semester for school
Thx for video. I was affraid to lose my job and driver licence after diagnoses
Glad I could help
@@BenPaton81 i am 38y old. Got diagnoses one week ago... went to dokter for a pair of glasses. Never needed them before. Came out with a eye desease i never hears off.
I just got diagnosed for keratoconus today. Im 16 n i was scared of it. Now im fine. I hv to get my surgery done within this month🙃
Good luck with your surgery, nothing to be scared of, soon it will be done and it will be behind you!
Thank you for sharing. I just got approved for the procesure. Do you recall how long you had to wait before you went back to work? Were able to drive? Got a new prescription for glasses? Those are my 3 main concerns. Thank you in advance.
Hello, it was a while ago now as I had my operations in 2016. I have one good eye and one bad eye. When I had the bad eye done I could still rely on my good eye so the recovery was about a month. When I had my good eye done then I was left with two bad eyes, recovery took about 2/3 months. I had this operation in October and I think by January I thought my vision was back to normal.
thumbs up for the rush hour clip
Thanks!
I got diagnosed with Keratoconus in october 2021 and was as a new control two days ago. We decided to proceed with cxl in a month time. My left eye is also the most affected one. The right eye has traces of the disease, but has not become a huge issue
Good luck for your operation!
@@BenPaton81 But I forgot to mention it, but we have it in our family. My brother has keratoconus as well (and undergone cxl as well)
My right eye is bad and like you they think it's in my other eye too. . Hopefully its not
Thank you so much for the video. I want to know for how many months one has to take any medication or eye drops. It is not lifelong right?
Hello, the eyedrops were just for a couple of weeks after the operation
I just had the transplant 9 hours ago! Onto a new opportunity.
I wish you all the best and smooth and successful healing process.
I just got diagnosed with this three days ago.
Sorry to hear that Madison, on the bright side it's being detected so now you can monitor it and treat it, better than it being undiagnosed and left to get worse! My thoughts are with you. It's very treatable so I hope you can get the treatment you need or it's been caught early and hasn't affected you much yet.
Hi Ben, hope everything is fine for you. I got diagnosed with KC weeks ago and will get the Cross-Linking by tomorrow. My right eye is worse (52D) which will get the epi-off treatment while the better left eye (47D) would be treated with epi-on. It sounds like experiment but let see the recovery time would be the same on different treatments.
😀
Hi Chan, that sounds interesting how they are treating the two eyes differently. I wish you a speedy recovery and best wishes. Come back and let me know how much quicker epi-on heals.
@@BenPaton81 Thank you for your reply. Just wonder how long it takes for your rest in home? I just got a new job starting from 4th July and do you think 10 days are enough for the recovery?
@@BenPaton81 I have done epi-on on better eye while epi-off on the wrose one.
While on the UV section, the epi-off eye can see the whole UV in green color.
Then for the epi-on eye, I can see the UV in blue and turn green just after adding the yellow eyedrops.
I just worry if the epi-on treatment with enough effect although it is done on my better eye which still can see 20/20 by wearing glasses.
10 days off is enough to get over the operation but the blurriness is unlikely to have gone in that time span
Got diagnosed with this 20 years ago, hopefully getting the cross link done soon since it was fda approved here now. Anyone with this, you can see much better with contacts compared to glasses.
My eyesight isn't bad enough for contacts but yes if your Kertaconus is worse than contacts probably help more
@Ben Paton But the thing is that wearing contacts also help Keratoconus to develop much slower. I am 40 and I have to deal with it since I was 17.
@@BenPaton81how much vision with glasses
I was actually born with kerataconus I’m 15 and I’ll be having cross linking surgery in October
Good luck with it!
Hi ben, how long did it take to get back from blurry vision
Hi Jen, honestly it's had to remember now, it was around a month I think for the worst part but it goes away very gradually so it's hard to tell. I do remember one morning being able to read cereal boxes a bit more clearly again. After the operation I had to sit about an inch from my pc monitor to read it and I didn't drive for a while. It was weird being out and not being able to make out peoples faces or even the face of my waiter in a restaurant but gradually it gets better little by little.
What’s up Ben! How long were you out of work for the first eye? My job wants me to go on disability after the treatment.
Hey I think it can vary, I think I had about 2/3 weeks off when it was my worse eye operated on as I still had my good eye to rely on. When I had my good eye operated on I think I had about a month off. Good luck!
@@BenPaton81 thanks for the reply bro !
I'm struggling with kc for over 14 years these disease very harsh because of it i had to drop out of college its really depressing not being able to find the contact lens , specialist in my country has made life very hard
I'm truly sorry to hear about the challenges you've been facing with keratoconus for so long. It's incredibly tough to deal with, especially when it impacts major aspects of your life like your education. The difficulty in finding the right contact lens and specialist sounds really frustrating. While I might not fully understand what you're going through, please know you're not alone. Have you considered looking into online forums or support groups for people with keratoconus?
@@BenPaton81 thank you for your understanding ,yes I have been a following on online like joining support groups on face book
Yes contacts help to a point. Very expensive. My husband had a cornea transplant about 13 yrs ago now we are waiting fir a couple of surgeries soon I hope. Now he developed cataracts and his cells are dying. God's willing it will happen soon. To all of you that have this please have patience getting correction w/ contacts it's a process I really wish you all the best.
Thank you, I wish you and your husband all the best!
@@BenPaton81 Thank you so much.
I wish my optometrists informed me about this condition early, when I told them abt having shadowing visions no matter how many times I changed my power. Bcz of that it took me five years to go to a doctor and finally do some serious tests. Doc told me my both eyes are suffering from keratoconus. I'm sure many people like me are living with this condition thinking they just have myopia.
Sorry to hear that but glad you have got the right diagnosis now.
I was diagnosed with keratoconus two years ago and had cross-linking surgery. I found it painful and traumatic. I had it done in my right eye, which is my worse one, and my vision ended up worse than before. Everything is completely blurred with my right eye now. Also there was no anesthesia during the surgery. I refused to get it done in my good eye. I'm glad that you had a good experience and result from the surgery. I wish I could say the same.
Sorry to hear of your traumatic experience. You just need to monitor your good eye. Maybe look up if there is somewhere they can do it with anaesthesia. Sending you my best wishes.
@@BenPaton81 Thank you. I'm looking for a new doctor. Hopefully he/she is a good one. Can't be worse than the last one.
@@AstridinGeorgia hey, did your vision get better?
@@isabelwangoi321 No, my vision has decreased.
Aww, I'm so sorry it got worse. I'm getting my cross-linking in 10 days in my worse eye; my right eye.
Hey i had wanted to know if the corneal collagen cross linking surgery cures light sensitivity. Like i feel a bit sensitive towards the sunlight. Not like i can't see things but it feels a bit bright. Also what was your corneal thickness when you got the treatment done?
Hello, I'm not sure on the light sensitivity because that's not been an issue for me with Kertaconus. My thickness was different all over the cornea but I think most of the measurements were around 300 / 400 microns.
@@BenPaton81 You sure about it ....coz I've heard they can't perform the surgery if it's less than 400(this i guess is the thinnest point of one's cornea)
I got diagnosed with Keratoconus 2weeks ago and had C3R on my left eye 7 days ago. My vision is still blurry and I'm unable to read letters of any size. To anyone who's afraid of going through the surgery, as explained in this video, its not overly invasive and you can leave the hospital the same day or next. Good luck! :)
My son have diagnosed this sympthon... Do you already have surgery?
That was good you went from diagnosis to crosslinking so quickly!
How long does it takes to read the letters again for you
Kindly tell your condition now.
I was diagnosed with this condition 2 days ago. I am scared I don't lie. I don't want to go for the C3R. Please reply.
@@shadowhymn5162 There's no need to be scared. Ensure that you are consulting a good doctor for the surgery. Its not an invasive surgery and the earlier you do it, the better so that you can delay/stop the progression of the condition. My left eye has a power of 1.5 now. With glasses I can read everything very well and without it, I can read letters in close proximity. I wish you good luck!
Just got intacs in my right eye a month ago. Epi off crosslinking tomorrow. With this week off of work following the surgery i hope i can see good enough to hunt, even if i have to use a crossbow w/ optics
Wishing you a speedy recovery
I had a different experience with my CXL, I was awake during the operation, it was a bit strange to talk to the doctor that was scraping off the top layer of my eye, but the surgery went fine and was not bad at all. after the surgery I got a bag with eye drops, and I was supposed to get two Ampoules with some kinda Sedation I was only supposed to take if it hurt really bad, and it did. ofc they forgot those.. and I got some morphine tablets, I never slept so good in my whole life as when I took those, Any way, for 3 days I had the worst pain I ever had in my life I think, it for sure was worse than when I broke my arm or had knee surgery. and sadly for me, my vision did not improve at all, it stayed the exact same, but it stopped my eye from getting worse. because it changed so much so fast that I had to take the surgery and I am glad I did, despite it being painful. I just wish they offered me the surgery sooner, I wanted to take it immediately after I found out I had Kerotoconus, I guess that's the downside with free health care, they don't give you a surgery unless absolutely necessary.
Thanks for sharing your story, interesting to hear about others experiences. Wishing you all the best!
How long did it take from hearing you had this condition to be prepped for the cross linking? Or how many doc visits?
Trying to cast my mind back, the optician referred me to the hospital, I think it was only two consultant appointments and then the first operation and the reason it was two consultant appointments was because I changed from NHS to private to get it done sooner.
@@BenPaton81 ok thanks I was diagnosed with this right before covid and just given a pair or glasses when I saw my doc but now I’m wanting to do cross linking and researching more about it since I don’t want to lose my vision I’m 23 rn.
The problem as I understand it has reduced capacity and availability for cross-linking but I hope if your doctor recommends it you can get it as soon as possible
Is there a reason you didn't go with the large contacts (can't remember what they're called) that are designed to specifically treat keratoconus?
The hard scleral contacts just help your vision by bending your lens into shape, but the disease is still there and will potentially keep progressing so your vision will gradually get worse and worse. Cross-linking as far as I am aware is the only treatment which will halt the progress of the disease.
I had poor vision and got diagnosed. I tried RGP lenses but was unable to take out and put them in, also was difficult to keep them stable. I had an ulcer in my left eye and when it got better after a month my vision now is better than before. My right eye is worse and need a graft surgery but my optometrist is delaying everything. I request a consultation but he kept referring me to there contact lense team
I hope you get the surgery you need on your right eye speedily, sending you my best wishes!
How long did it take for your blurry vision to go away? Took me about 3.5 weeks for the first time and currently on the mend from last week's
Hi Bre, I really can't quite remember the exact timing as the blurriness faded gradually, I remember it being a period of a couple of months for me
I have to get this done. I’m not scheduled yet. I am in the proof scheduling a consultation. What was the pain like afterwards? How long were you off of work?
@@jasmineluckett3221 hi how was the surgery I got diagnosed a few weeks ago I am only 16 should I get the procedure
very very informative video and thanks for this advise before 1.5 months im diagnose to keratoconus and my vision in very nice and i see very clear but some very far objects is some time give a some problem but my doctor ask me that is natural after 3 moths of c3r this problem is solve because after c3r dynamic changes in my cornea i hope that would solve this prob.
Best of luck!
Ben Paton , brother , I have had CXL 10 days ago and my vision is very blurry and foggy , can't read text and faces clearly , it is worse from before CXL ,
How long will it take to recover and come back to how it was before CXL.
Waiting for your response
It can take a while, for me a it was a couple of months before my vision was back to where it was before the operation. But it's very gradual, I remember thinking one day I could read the cereal boxes again and another day thinking I can read the car number plate of the car in front. Wishing you all the best.
Hey what was your cylindrical power ?
I too have been diagnosed with keratoconus , my right eye is worst at a cylindrical power of -6.50 D.
Hello looking at my last eye test it was -0.5 right eye and -1.75 left eye
Hey what your doctor suggest you for that eye? I hve same cylindrical power
Soy de California y también tengo queratocono crees que me puedas recomendar algún lugar seguro porque no se con que especialista deba de ir porque mi doctor me digo que necesito el cross linking
Lo siento, soy del Reino Unido y no sé mucho sobre el sistema de salud de Estados Unidos. Necesita ver a un médico especialista en ojos. Con Kertaconus, como con muchas enfermedades, la detección temprana ayuda y se puede tratar.
Se hizo el procedimiento?? Como le fue?
I just had the intec surgery day before yesterday. Still blurry vision but I’m hopeful
Wishing you all the best for a speedy recovery!
Did the blurriness went away? How long did it take? Thanks in advance
Thank you so much! I have the operation next week on both eyes. How long did it take for you to feel well enough to go back to work?
Would really appreciate it if you could kindly let me know :) I’m slightly paranoid about the recovery time :/
Good luck, I was off work for a couple of months or so following each eye op. It takes a coupe of months for the blurriness to go. Just give it time to heal and get back to where you were. It's worth it in the long run. There are Keratoconus support groups on Facebook, join one as there will be lots of people who have been through this.
Thank you so much! I really appreciate your time to reply back :)
@@BenPaton81 um.. my left eye requires immediate surgery but i hv some imp xam next month. Wt do u say.?
hi i hope all is well. how did it go? im 17 and im going this monday completely terrified of the pain that comes after
My son has this he's advised to get crosslinking I'm so worried about him and what he should do some say they got crosslinking and it didn't help at all ease the blurriness
The main purpose of cross linking is to stop the progression of the disease, it may not improve the vision but it can stop the vision deteriorating until the sight loss is extreme. My advice is to get cross-linking to halt the progression as soon as you can.
Hi, I've just come across this video. My son is just 7 and newly diagnosed. Any advice?
Yes, absolutely get cross linking to halt the progression of the disease as soon as your son is eligible to have it and the consultant recommends it. I guess he might have to wait until he is older as he's still growing. In the mean time it's just a case of regular appointments to keep on track of it. Opticians at least every two years and support his vision with glasses or contact lenses whatever they recommend to help his vision. How much it can affect vision is quite a range depending on the individual, I'm not an expert but the way I understand it basically can progress until the cornea's naturally harden in later life, some people have it mild some people severe, sometimes it affects one eye more than the other. It's a good thing it's been caught early.
How do surgeon remove bandage contact len? Do you feel any uncomfortable when wearing the bandage contact len? I am afraid of something touching my eyes. And how much do you pay extra for general anesthesia? Thank you
Hello I didn't pay for the general anaesthesia as it was included with my private health care which comes free to me with my employment in the UK. I didn't even feel the bandage contact lenses when I was wearing them, at first you are in pain after the operation, that lasts around 12 hours I would say, it feels like having a papercut and sunburn combined in your eye, once the pain is gone I didn't feel the bandage contact lense being in at all, it's no different to a regular contact lenses accept I think it's clear rather than corrective. It was removed after a couple of days later in a follow-up appointment with my consultant, he removed it just by pulling it out with his fingers which was quick and painless.
@@BenPaton81 your vision transplanted eye
did you see any change in your eye color? Im getting this procedure in a few weeks and I'm so nervous
No my eyes stayed the same colour. Good luck, it's worth having in the long run!
Hi I’m 25 and I never knew I had it. I have it on both eyes. I always thought that’s how the world looked. It’s like 85% of the contrast is where the real image is. And areas of bright or dark contrast gets smeared for me. I guess my brain learned to read and ignore the bourriness OR my eyes have gotten worse. . But one day I found myself asking why do I have double vision even if the letters are so big on the tv screen. That’s when I went to an optometrist for the first time. They gave me prescription glasses which helped centralize the ghosting image a bit, and the polarized and other add one of the optics allowed me to pin point contrast and read better. But of course, they said glasses will never fix it because the lenses would have to be as close to the eyes as possible, which what lens are for. So far it’s not progressing, I’m reading every day and thankfully my aim in video games is still accurate… but in a couple of years I’d like to have the cross linking procedure as a fail safe since I hear it will progress for a decade… hopefully I had it when I was a kid and I just noticed now that I’m older and it progressed and no further. But any worse than this… and I actually might lose my mind.. question though. I thought this was preventative procedure? It doesn’t reverse the degradation of the cornea before you had the procedure.
Thank you for sharing your story. the purpose of cross linking is to stop the disease from progressing. It may improve your eyesight slightly but that isn't guaranteed. The main purpose of it is to stop the disease getting worse. I was lucky in my case it did improve my vision a little bit.
@@BenPaton81 That's great reassurance, thanks. I will ask again in a couple years if you're still around and responding to comments on how your eye sight has been so far post procedure if the cornea has been stable. I've never done eye surgery before and knowing someone benefitted off a procedure is a good reassurance in knowing it has a high success rate. I don't want someone blasting UV rays and chemicals in my eyes without knowing it ACTUALLY works. I need my eyes to pay bills.
I was diagnosed a few years ago, i go get my eyes checked every 6months but i always get the same feedback, my eyes are stable and come back again in 6 months, Its been 5 years. I can survive without wearing glasses or contacts but they always recommend me to wear contacts, maybe i should and i am stubborn.
Thank you for sharing, just keep getting your eyes checked. It's great it's stable maybe for you it will never progress further, count your blessings that you can get by without glasses and contacts. I wear glasses mainly to even out the difference in my eyes otherwise I get headaches with poorer eyesight in my left than my right.
hey , i have a very bad type of keratoconus stage 4 in my right eye cause it has 5 stages 5 being alsmot legally blind from my eye .. my elft eye is the eye im typing you with in the moment its only a 2 or 1.5 stage keratocnous .. got diagnosed 2 years ago when my lenses did not work anymore i was driving suddenly a huge pain started in my eyes esepcially the right one and could not drive no more i literally i stopped the car and called my dad anyway ... had the crosslinking collagen surgery on both my eyes and it was painful post op not during the surgery it was the worst pain of my life tbh no sleep no nothing .. but after 6 days the pain was starting to fade with the eye numbing drops thank jesus .. it did save my left eye the good one but the right one is legally blind almost .. still to this day to the point where my doc has put my name on the list to get a corneal transplant soon as soon as i get a donor .. unfortunately my keratoconus got so bad i cant drive my car by night anymore im a radio host and musician so i work by day now they undertstood my case and condition .. but yeah my life has completely changed cant go outside in the sun especially during summer so light sensitive its painful to look at the sky even not facing the sun during summer .. i have to capitalize all the letters to read and type on my iphone and tab pc every technological gadget pretty much i always dim my windows and lights .. the asian thing is real since im eurasian technically im caucasoid if you want caucasian but from originally lebanon and armenia georgia the caucas region from my dads side which explains alot since also my borther had a severe case of keratocnous and had a corneal transplant same as my sisters except she has recieved no transplant since her case is better than mine im the worst out of both of my siblings and im the youngest .. both my parents dont have it tho .... mom doesnt have asian blood as she is originally maltese italian ut from our dads side asia and caucas is predominantly strong even tho caucas people look like any average white person but genes are different as we are easterners anyway im only 26 and its been 2 years my life has changed my right eye is sh shaped like a cone so much you can see it from my side hope ill find a donor and hope my other eye doesnt worsen cause its already approaching stage two keratoconus
Thank you for sharing your story. I wish you the best of luck with with finding a donor for a lens. Sending my prayers and thoughts your way. Hopefully the cross linking has saved the good eye and you will get that transplant soon for the bad eye and you will be set in a good position then for the rest of your life. I hope one day you no longer have to worry about it!
@@BenPaton81 same to you dear wish you the best thank you sorry for the mistakes i could not see everything on my tab as i said my vision is getting worse anyway thanks again for your kind words and wishes bless your heart ill soon find a donor it doesnt take any longer than a year :)
ya. i'm 32 this year...Quite worry that it would affect my work and eventually my income one day if it getting worst......Will try to get the cross linking as soon as possible....
Yes better to get it sorted and maintain the vision you have now then let it get worse.
Is PRK an option for keratoconus, even after cross linking surgery? I know laser eye surgery is not recommended for keratoconus patients, but I also hear PRK has differences from laser eye surgery that gives better results and may be a better option for people with keratoconus.
I don't think this is something I can advise on your are best talking to a consultant or optician. I know in my case laser eye surgery won't help I've asked my consultant previously, that's because my vision issues are caused by my lens being misshapen due to keratoconus which is not something laser eye surgery can help with.
how much time take it to stabilise your vision after do the procedure
A couple of months
how are u wearing glasses with keratoconus, i got crosslinking and have had hard lenses ever since
Hey, I'm thinking I'm lucky that I can get away with just glasses the cross-linking improved my eye sight so that I could read six lines smaller on the eye chart at the opticians. I'm absolutely fine with just glasses as one of my eyes, my right eye isn't too badly affected by keratoconus.
Hi, does your keratoconus stops after cxl ?
It's not a 100% certain that it will stop it but it should stop the progression yes.
My new bf has it and he had a small surgery on Friday and I witnessed how awfully sick he was after, with much tears and not feeling well in total darkness and it took two full days to slightly be better and today his check up and I hope all will be going well but still no news from him since he says he can’t watch phone or bright surfaces and I am away for a couple of weeks, not sure if he would have the crosslinking treatment eventually but in his case it is been the other treatment I guess with UV and vitamin B
Crosslinking is with UV and vitamin B so I expect it is this that he has had done. His vision will be blurry for awhile but it's will heal with time
@@BenPaton81 oh I see… I just know he went inside and an hour or bit later could walk out but eye covered and he couldn’t stand light at all, all day, night etc loads of tears, tired and super sensitive to noise, light, everything and still not in the mood or position to talk, so I still don’t know how a control visit has been going today and trying to find answers
Vc ja ouviu falar do implante de células tronco q esta sendo feito na espanha, pelo médico jorge alió?
Não, eu não tinha, mas isso parece realmente interessante, definitivamente uma cura que veremos mais no futuro
@@BenPaton81 sim, Deus é fiel e já estão bem avançadas as pesquisas
Hello, I was diagnosed with cornea crosslinking to my left eye but my left was still blurry, should I undergo any other surgery for full vision, or else can I use glasses?
Best to speak to your consultant and see what the options are... you can have cross linking more than once but it may not help improve the vision, it's main purpose is to stop it getting worse as I understand it. Then it's down to how you can improve your vision with glasses, contacts etc...
Hey, with the glasses what are your vision. Thanks
My vision is fine day-to-day, my prescription is 2.75 in my weaker left eye and +0.75 in my right eye. Things are blurry through my left eye though so my brain mainly uses my right eye to compensate and the glasses help to even them out and stop the headaches I was getting without them. After CXL I could read 6 lines smaller on the eye chart after about a year of healing.
Could please let me know how thin or thick was your cornea was when you got cross linking done ? Also what was your eye prescription glasses (-1? -5? -10? )
Hi I really can't remember what the topography's said now, it's a shame I didn't get to keep a copy I think the numbers were mostly in the 500's and 400's, it was 5 years ago now. My current glasses prescription is +2.75 left eye and +0.75 right eye
@@BenPaton81 thanks for the info! Was your prescription glasses positive before the surgery as well or was it negative and then it changed to positive ?
I honestly can't remember, I think it was positive but just stronger. After the treatment I could read six lines smaller print on the eye chart after about a year post op.
I'm a 20 yo girl, I'm getting my right eye done(cross-linking) tomorrow(20/12/2021) although my left eye is worse than my right, I have my exams in 2 weeks. Will I be able to study and do my exams?? Or will I not be able to see??
Sorry I only saw this comment on the 22nd after your operation. I think it will be difficult to see to revise! Wishing you the best of luck!