My Experience with the Corneal Cross Linking Procedure

[@hobsquabble]

I remember a few things about my cross linkings. My first eye was my worst eye because it was a relatively new procedure in Australia so if it went wrong, it wasn't the eye I used to see anyway. As such, I don't remember as much pain, nor the light being so bad. When we cross linked my good eye 5 years later, it all seemed so much worse. The pain, the UV light was making my eye hurt so much I asked the resident often "how much longer" as I'd have a break from it whenever the drops were administered. I remember trying to sleep and having a literal stream of tears coming out my eye, knowing full well that too much tearing would irritate. The next morning the stinging was basically gone, just that uncomfortable, something in your eye feeling remained. My pillow was drenched. Amen, those opiates are so necessary for getting through that first night.

[@kellymcewen2823]

Hi Emma, It's great hearing from you again! Thank you so much for sharing your experience with the crosslinking procedure. I believe the ophthalmologist and optometrists working on the procedure said the UV light had changed a bit from former procedures, at least at their facility. Do you recall the light looking any different than the one used in your first procedure? Likewise, the intense stinging only lasted for a day or day and a half for me. The biggest struggle for me was trying to get some rest after coming home, but the pain meds did indeed knock me out. I'm going to pin this comment to the top because I feel that other viewers can benefit from reading about your experience. Best, Kelly

[@Senzeez]

What was the cost in Australia

[@surfinaislam3867]

Can I know da Cost?

[@eliasholenhannouch807]

I actually got oxybuprocaine administered. It's a full-on anaesthetic for your eye. Let's say I wasn't very lax on using it...

[@zaffirk7726]

Holy molly after the surgery at night get ready to cry a lot. Seriously the pain

[@twistedsoul6164]

The bandade lens after was killing me, felt like someone was poking me in the eye, constant watering and couldnt even open my eyes it was so bad, didnt stop me from going to my towns christmas light switch on 😁

[@suttie1891]

No pain at all for my son. He was fine

[@ME-hx2ms]

@@suttie1891 did he get an epi on or off?

[@joyshreeworld]

Yes seriously 😂

[@tonytucker8905]

@@suttie1891 Is you're son immortal then?

[@dovalink744]

I just had this procedure. I have had keratoconus for over 20 years. Cross linking just became available here the past year. I had a corneal transplant 9 months ago in my right eye since it was really bad. Just had cross linking yesterday in my left. The pain was so bad when I got home. They gave me valium but it didn't really help. Today my eye is just extremely irritated and uncomfortable and watering. As well as blurry. Bc it's both eyes I am legally blind and everything is blurry. Really hard not being able to see unless I have my phone on my nose. I hope my eyes get better. This has been hard and I lost my job. Ty for the video

[@C20H25N3Ofya]

How is your vision in the left eye now? I had it on my right 8 months ago and the blur never went away. This makes me hesitant to do my left eye because I can't afford for it to be blurry too. I still get 20/20 on it with glasses.

[@suttie1891]

Bless you. My son just had this. He was totally chilled about it, but I was in pieces!

[@kellymcewen2823]

I'm glad these videos can help you understand your son's diagnosis. I know KC can impact loved ones in addition to the individual with the disease. I hope you are able to find some peace knowing there are many treatment options for KC.

[@ME-hx2ms]

How bad was the pain?

[@diannedejong4288]

Hey Kelly, I don’t know how old this video is. But really wanted to thank you. When I discovered that I have keratoconus my eye doctor told me the best thing to do was cross linking. After they explained everything at the hospital I still was super nervous about it. Thanks to your video I know what I was going into. I was just as you described it would be. Didn’t like it but I’m now recovering. So thankful that you made this video.

[@sandeepprakash2570]

Hi Kelly, Thanks for sharing your experience and all the tips you've given in your videos! Watching them really helped me prepare for mine and I knew what exactly to expect. I just had my procedure done 2 days back and I am recovering well. Wish you a speedy recovery as well and keep up the great work you do at sculpting! Good luck!

[@kellymcewen2823]

Thank you so much for your kind words :). I'm happy to hear that your recovery was going well, and i hope it has continued to improve since your posting. I'm glad the info discussed in the videos helped you prepare for your procedure, thank you so much for your feedback. I wish you all the best in your recovery and in your keratoconus journey :).

[@klevissmaerd4688]

Kelly McEwen hi!! I just want to know , can these desease , keratokonus be stopped by cross linking or just for a few years and the end its always the same?!! Give me an answear please!!

[@darkop861]

I just had mine done a few hours ago. I live in Louisville, Ky and here at Bennett and Bloom's, its only $2000 per eye.

[@twistedsoul6164]

Lol free in the uk 😎

[@strangevideos4434]

u left u out the most important thing ,how has your vision improve after all thses procedures ?

[@kellymcewen2823]

You're right, I'm planning on addressing that in another video. I wanted the past two videos to be strictly about cross-linking, that way people looking for information on the procedure wouldn't have to sit through information that wasn't relevant to their situation. I hope to have at least one new video up next week.

[@LadyRabiaAbdulHakim]

randy mohan do feel free to contact me with questions. I have advanced Keratoconus and had a transplant as well. [e-mail]

[@mmustafa4941]

LadyRabia Abdul Hakim Hi I have done my KC during August 2014 Progresding stoped in 2017 i done next CheckUp due to i was in Saudi arabai and i am from Pakistan ..the main tbing is that now i am again feeling blurring with Glasses in my Good eye...b coz the bad is too bad still i did not start using it cause it will start workong Only bia lens... Could any body tell me it will be more effected by Conpiter mobile etc ??? B coz my Sleep not on time and i m using laptop tiny softwares.....due to i am Telecomm engr so i m working in Network Ops center in ksa Riyadh

[@mmustafa4941]

LadyRabia Abdul Hakim ?

[@twistedsoul6164]

Your vision doesnt improve, its a proceedure to halt it deteriating even further.

[@nickvdoespt]

Thanks for posting this! Makes me feel way better about my operation in a few weeks

[@csnrgrs01]

nick valachovic how did the operation go? I'm having it this summer and I'm petrified.

[@AdnanAhmed-xl5mp]

@@csnrgrs01 im having mine in a few hours i feel lile crying

[@evelincruz5966]

@@AdnanAhmed-xl5mp hi how was it?

[@matthewboulton8746]

I just had same op.and I been pain in eye still.and had some.dizzyness but I got have both eyes done. it not that bad. I had my done in UK and I think they do it different I had liquors stuff every 1 mins for.8 mins. but thanks u for video.

[@TyronaRainford]

I have keratoconus also and I'm thinking abt doing the cross linking surgery.

[@evelincruz5966]

Did you have it?

[@SummerSetsAlways]

HIya! I hope you are well! I had cross linking done 13 days ago! I did experience a lot of pain and had discomfort the 1st two days however after that it was okay. my question is how long did it take for your vision to come back. my vision is sooo blurry! I can only see close up. other than that its too blurry.

[@1333105]

Does that hurts ?? ..I m getting it soon...soon I m too scared for that

[@Yasen49]

Did your vision comeback? How much time took??

[@rajeshwari3971]

@hanna zaman Hey hanna did you get back your vision?

[@robertsteich7362]

I find it interesting, and it's making me mad, that you had your top layer removed. It's making me mad because I do not recall having that done when my Cross Linking procedure was done. Of course this was 2015 when I had mine done, before the FDA approval. However, I did have the numbing drops put in automatically. I can't remember how many numbing drops, but it was a few. Then the Ribrofibin was for either 15 or 20 minutes. The a Q-tip rubbed on my eye for a minute. Then 3 minutes of straight up UV light. I do regret getting this procedure done, even after a few months. Now seeing, pun intended, that you've had it done and there was an extra step. I am really not happy with mine.

[@webthefox]

Can I ask, why do you regret the procedure? I'm getting it done in two weeks, just curious.

[@ME-hx2ms]

@@webthefox how did it go? Was it too painful?

[@webthefox]

@@ME-hx2ms there was discomfort, but it wasn't awful. It is a weird sensation when it is happening, looks like a powered toothbrush more than anything. And the light didn't bug me much, it seemed I was in the waiting room longer than the op room. Just ask for more drops if you are feeling anything, it helps a lot! The recovery on the other hand was interesting. I had my surgery at 3pm on a Friday. I highly recommend getting a fair of the sunglasses they give patients normally for sensitivity, before your surgery if possible. Prescription too if they can get you it early. First hour or two was not awful, more so felt like pressure and discomfort. You should get your prescription immediately and go home to sleep, as this will help you out. I had a bit of delay and I regretted it, as the pain picks up and it is deep and incredibly uncomfortable. My eye was essentially shut from 1 hour after, to 72 hours after, aside from me pulling my eyelid open with my fingers for eye drops. They will give you pain killers. Use them, trust me. Some might say Tylenol works, don't bother, you can use that later when you need. They give you pain killers and sleeping pills, and when you use them both it pretty much numbs everything (literally, I woke up after a couple of hours and couldn't feel my tounge, slept well after haha). I essentially slept from 7pm Friday to 7am Saturday with a break for 3o minutes around 11pm. Saturday morning I took another pill and went back to sleep. The first 24 hours is hoenstly the worst of the recovery, so if you can sleep the majority of it you will be in better shape. During this time I actually couldn't open the eye that had the work done, and my good eye was partially forced closed from.general muscle reaction and pain. By Monday the pain was mostly gone, it was just discomfort. Light sensitivity is real. The eye was just starting to open. By Tuesday evening I could readily open the eye, and it was staying opened more comfortably. On Wednesday they removed the surgical contact (essentially a bandaid). He flicked it off with a metal tool, and it felt incredibly sensitive after that for the next few hours. I also noticed it felt super dry and sand like, this feeling of sand ib the eye stays for the next weekish. I attempted to go to university class Thursday night, the projector screen still bugged me sensitivity wise so I stayed home Friday. In general, plan for your entire week off at minimum (I booked 10 days, Friday to Monday). By the Monday a week after the surgery, I was able to return to class, using sunglasses still and carrying eye drops with me. It took hoenstly 1.5 to 2 months for the vision to entirely return to normal in that eye. I had the surgery around January 25th, and only noticed it's full return right around when the pandemic hit (March 15th). It was different levels blurry for quite a while. I didn't drive for the first 2 weeks, took the buss when I returned to school. After that j began driving occasionally, with caution, as I was able to see clear enough between my good eye and the surgery eye. I recommend using eye lubricant in the meantime, as it has helped me significantly with not rubbing eyes, and improving comfort, since this started. I use HydraSense advanced and night personally. You can hoenstly just go with the night drops, they are stronger and more gel form so they last longer. Be careful with other brands, some are not actually clinically good, some are naturopath solutions that cost significantly less but don't help. I was suppose to have me second surgery April 15th, but the pandemic forced postponement. I'm awaiting a new date, but expect it to be this summer. I won't say it's a pleasant procedure, but it wasn't awful. Don't be scared, it is well worth it if you are needing to treat ketacronus, as this will ultimately be 100x nicer than corneal transplant or the other more invasive treatments.

[@webthefox]

@@ME-hx2ms I hope that doesn't scare you! But I wanted to be truthful. The procedure itself was very good, and entirely painless, just sort of weird. The 48 Horus after were the worst, and after that it was decent progress, just slow. The biggest thing is the drops hoenstly. I used HydraSense drops in both eyes until the day before. Afterwards the prescription opens work as one is a gel, and when you run out of prescription drops you need to eventually get back on hydrating drops if it helps. 4 months later, I have a stock of HydraSense and take them as needed through the day, sometimes 3 times sometimes 10, it just depends. And hoenstly for dryness, I sometimes wonder if it is dehydration. Doesn't hurt to increase water and decrease coffee or tea haha. I hope yours goes well! You are welcome to contact me on twitter @webthefox if you have other questions!

[@drcknight24plays]

See I HATE IT when people do that !!! They make big statements and big claims on important topics and when people ask for clarification they just disappear...

[@MiguelLopez-pe8ge]

I get my surgery done in 2 days I'm nervous but Im ready to get it over with

[@csnrgrs01]

Miguel Dash how did it go? What kind of pain was it. I'm getting it soon, and I'm terrified

[@ME-hx2ms]

@@csnrgrs01 was it painful?

[@csnrgrs01]

@@ME-hx2ms it wasn't fun, haha but by the end of the first day it becomes pretty bearable. The nerves beforehand are worse than the actual procedure

[@ME-hx2ms]

@@csnrgrs01 thank you for replying :)

[@jonikej]

Did u have corneal transplant on both eyes and then later on cross link or was the transplant only in one eye

[@anjaleeanee3878]

@Kelly McEwen Hey I really need help on this one. I have to undergo this procedure but this is also very important time for my career and I'll have to study a lot. So, after how many days I can start studying normally? Please reply.. It's VERY IMPORTANT

[@uniq.0769]

anjalee anee it hurts the first night but you’ll be fine after that. I’d suggest you get it as soon as possible because the longer you wait the more your vision will deteriorate which is irreversible.

[@anjaleeanee3878]

@@uniq.0769 thanks a lot..❤️

[@uniq.0769]

anjalee anee you’re welcome 😊

[@ME-hx2ms]

@@anjaleeanee3878 how was it? Was it painful?

[@anjaleeanee3878]

@@ME-hx2ms Actually it hurt real bad that night and even the painkillers didn't seem to work but it was just one night. After that night 2nd and 3rd day I had to take painkillers 2 times a day. I didn't need any painkillers after that. The dressing was there for 4-5 days and it was pretty simple and since my mom was there with me so all I did was sleep whole day. But the real struggle was after the removal of dressing as you can't let water enter your eyes and several other precautions. Also eyesight was blurry for about 1 month.

[@rhettudy9687]

How soon were you able to go back to work? Do you think working at least a few hours per day at a computer screen seems possible a day or two after surgery?

[@kellymcewen2823]

From my experience solely i would have found it painful for the first few days, light sensitivity was a big issue for me and would probably have exacerbated the issue. I would recommend asking your doctor for the most accurate time frame. For me it was probably a few days to a week before I was back using the computer regularly.

[@kimazz1]

Thank you for sharing

[@ankitarawat5522]

i have done C3R in Both eye. it's been 11 days now still not able to see clear. they said i can go to work but im not able to wear my previous glasses. they said my vision will change for 3 months.couldn't see text on the phone. extreme sensation to light. can i get my temporary power so tht i can continue my job

[@Hola-wb5dk]

did you get the c3r done with doctor Brian Boxer?

[@mikepearson9561]

Kelly, thank you for the information, seems things are going well enough, even if you can take the pain of epi off. Mostly, I 've read about epi off being uncomfortable CXL at best. That said, epi on seems to be less invasive with the same results and yet it is not the go to procedure here in North America; has left me confused to be sure. I'm 45, with KC since I was 19, am just getting into Scleral Contact Lenses, and realizing difficulties associated with the lense fitting and my (ahem) old age. My lense grinder says I have 2 good things going for me with my corneas, measurement wise, so maybe I won't need a transplant...but I can't help but ask about your diagnosis and age with KC. How old were you when you needed a transplant. Peace to you.

[@kellymcewen2823]

I believe I was about 17 or 18 when I was diagnosed with KC I was told I needed a transplant pretty quickly after my diagnosis (I'd say about 6 months to 1 year later). I was 23 when I received my corneal transplant.

[@21princemichael]

Thanks alot for this

[@juanitawhittaker8502]

I have to get the cross linking procedure done. Can u help me with centers or hospitals in the US that I can get this done at? I have 2 months to get it done and there's no place in my country to effectively to do so. Please help

[@bradleypappas1817]

Im getting mine done this month at Helm Vision group in Santa Clarita California

[@bombingbloke]

Very helpful! Greetings from the Netherlands

[@yeahwhateveridc6062]

Hey! heb je dit gedaan in Nederland?

[@bombingbloke]

@@yeahwhateveridc6062 ja, in het umc. Als je vragen hebt help ik je graag.

[@twistedsoul6164]

I quite enjoyed the proceedure for some reason, is that weird?

[@kellymcewen2823]

lol not weird, but i'm curious what you enjoyed about it.

[@twistedsoul6164]

@@kellymcewen2823 i enjoyed them scratching at the eye, not too much about the drops made me flinch alot but overall wasnt really a scary proceedure or anything, was pretty minor, also was my first surgery too. Also was funny listening to the doctors casually talk and cracking jokes.

[@6areIyhuman]

was the pain bad after the procedure?

[@stickersdogcat42]

What's that pleasant sound in the background? A gong?

[@kellymcewen2823]

they're giant wind chimes outside my house :)

[@idolila1104]

hey i have a question if i do this crosslinking treatment, will i get the same vision as before eventually? right now i see in 1 eye 20/30 and i am scared that my vision won't get back but doctors saying i should do it becuause my kartconus is at the beginning what do you think?

[@shaun-kendallsooknanan707]

Is it normal for your eye to feel like it has sand in it when they remove the contact bandage? Because mine feels like it has tons of sand after they removed the contact

[@ME-hx2ms]

How bad was the pain after the procedure? Did you get epi on or off?

[@shaun-kendallsooknanan707]

M E i did the epi off procedure. The pain the day after was bad. Pain meds and sleep are your best friends for the 2-3 days after the surgery.

[@Spacegoat92]

Hi Kelly, so 3 years on, how is it? I just found out about this today as i may need to have this done.

[@RamiAq]

I had the first surgery for my left eye 2 days ago. My doctor said no pain medicine or numbing drops at all. It was very painful. What type of pain medicine you were prescribed? I'm very worrabout going through that again in 3 weeks when I do my right eye. He said pain medicine will effect the healing process which I don't see how

[@rajeshwari3971]

Hey ! Hope you are doing well. How is your vision now ? Any blur ?

[@danniidecides5369]

Thankyou soo much for making me feel a bit more at ease with my operation im having today! I've had it done on my other eye before but that was 2 years ago and i had forgotten alot of details. Im a very anxious person normally without this on my mind haha! Xxx

[@ahlawi7733]

Any update

[@vjayez5647]

i got this three days ago it hurt so bad for like 2 days... now the contact bandage is the most irritating part. cant wait to get it off.

[@scurglistens]

My procedure is in a couple hours ahaha. I’m not nervous 😳😳

[@omarelbouabdally4092]

How is ur vision now

[@6areIyhuman]

hey was the pain bad? im super nervous im going this monday epi off.

[@abdulrahimalmethiab4628]

I had crosslinking 7 years ago and my doc told me that the situationis getting progressive again.. I still see very well but the crosslinking wasn't the best and most reliable solution.

[@kellymcewen2823]

thank you for sharing you experience, I wonder how long crosslinking is advertised to last.

[@nanahinayiz7017]

How old r u? I have been told it will stop by 30 st years!!

[@abdulrahimalmethiab4628]

@@nanahinayiz7017 I'm 27 now, and my eyesight is now 8/10 with glasses (it was 9/10 two years ago) , still progressive but it should stop by this age. that's what my doctor said too. he also suggested hard contact lenses, they could be better than the glasses, but I don't think I need them that much.

[@nanahinayiz7017]

@@abdulrahimalmethiab4628 don't use them at this age I'm not scaring u but I discovered this disease last year I have been told you my not need the cxl at this age now I feel difference. I will do the cxl this week inchaellah just keep following with a doctor. My allah bless all of us amin

[@drcknight24plays]

I thought Cross Linking was a permanent solution to Keratoconus... Man I was wrong I had my CXL when I was 21 and now I'm 23 and I have 20/20 vision without glasses, do you think I will need another cross linking or will my eyes naturally cross link at a certain age ??

[@azelilazi6857]

how’s your sight before and after ?

[@tuff_duck]

You went "beta into production" on this. I recommend bullet points prior to recording.

[@idolila1104]

hi, have you done the cxl procedure?

[@uberdriver8743]

What was the cost and did your insurance cover it? Also, you mentioned you had a corneal transplant, so does that mean you had the cross linking in the other eye?

[@kellymcewen2823]

I personally didn't handle the insurance because I am currently under my parent's plan so unfortunately I am unaware of the financial aspect of my surgeries. Yes, I have had a partial thickness transplant in my right eye and corneal crosslinking in my left.

[@jakecanten3246]

No insurance covers this procedure unfortunately

[@BK49672]

Appreciate this video. I’m going in for my procedure in 2 Days, and this helped. Would be great to talk to you if possible. Thanks!

[@xhensilapeposhi5803]

How gone your surgery? ,i will make this procedur this week,😪

[@عمرعبدالمنعم-ع3ج]

@@xhensilapeposhi5803 you did it?!

[@faet-m2651]

I’m going to have this surgery aswell and mine was caused from rubbing my eyes to much as a child

[@shapnamafshar3780]

Fae t-m me to I’m getting it this thursday

[@noufaln3259]

@small earnings icl surgery done

[@mariogutierrez3053]

I recently had the crosslinking surgery 3 days ago. I was only umder the uv light for 5 minutes per eye. I am curious now because most people sit under the uv light for 30 minutes. Would you know why? I will not see my doctor again until 3 weeks from now

[@kellymcewen2823]

I'm not sure why, i believe it could be that it is a recently studied procedure. While searching it online it looks like the time under the light can vary. this article talks about the 5 minute variation, hopefully it helps! ayrshireeyeclinic.com/CollagenCrossLinking_Keratoconus.html

[@surfinaislam3867]

Can I know about the cost of this operation?

[@CRknows]

It’s been 3 months now and my eyes have still been feeling uncomfortable, not everyday but it feels like most day. My left eye is actually super red right now and it’s feels like the eye ball is so hot which makes my eye feel like it’s burning a bit. Is anyone else feeling like this? My left eye has an intac in it. The right doesn’t but both got treated.

[@kyserjamal6762]

Hello cristian, how old are you now and at what age did you notice that your eyesight is weak? Also are you wearing lenses after you c3l or glasses?

[@ME-hx2ms]

Can someone please help me finance my cross linking treatment. It's 300$ per eye where I live (addis ababa) and I managed to save up enough j to get my left eye treated but really struggling to save for my second. :(

[@1333105]

Does it hurts mam??

[@haroonyaqub9116]

kyle what lenses you used?

[@kellymcewen2823]

I used almost every type of lens for KC, the ones that I found to be the best fit for my needs were scleral lenses.

[@nanahinayiz7017]

@@kellymcewen2823 hey Kelly I hope u doing well. Is the screal lenses covered by the insurance? How much it cost!

[@priyankasingh-kq8sb]

Hey Kelly, I have keratoconus for like 10-12 years and use rgp lenses for the same. I have been advised C3R procedure followed by implantable collamer lens(ICL) surgery(post3months c3r ). I want to know h have any experience of ICL surgery and secondly can I use my similar lens post c3r procedure?

[@noufaln3259]

Icl surgery is work

[@aydetrejo8475]

Was your dog able to sleep with you ?

[@nxrxi]

I get it tomorrow

[@ME-hx2ms]

How did it go? Any pain?

[@mokdad5915]

Do you have Facebook

[@ilyasya9569]

Can you see good whit glasses

[@mohammedshezaan3811]

Your Very Gorgeou #kellyMcwen

[@mokdad5915]

Hello I love you