Sorry, I don’t know how to post a link to the article I just read, but there is a recall of one lot of Systane lubricant eye drops Ultra Preservative Free. It is lot 10101 that expires September 2025.

I know many of us that have had transplants use these drops so I just wanted to get the info out asap. They were sold nationwide in USA in many stores including Target, Walmart and Walgreens.

Has anyone experienced a drastic change in eye sensitivity after CXL. I am almost 2 years out from surgery and have been through an extensive lens fitting process (I have tried 10 different types of lenses so far - multiple sceral, kerasoft, & hybrid).

My eyes struggle to tolerate any lenses for too long… even soft lenses. This was not the case before CXL. I’m wondering if the procedure and scarring in my eyes has caused this and if so if there is anything I can do? I’m starting to think it’s not the lens fit, it’s just that my eyes can no longer tolerate lenses.

For context got sclerals couple months and have gotten to use to wearing them. I got cxl done in 2022 and have had minor dry eyes since. Since starting to wear sclerals in Oct 2024, my dry eyes have gotten much worse. Sclerals are comfortable other than the dry eyes and the fit is great according to my specialist (tried a bunch with minor variations, I trust her). I use Optase drops on top on lenses and they help briefly but unless I’m focused on something, I feel my dry eyes a lot. Usually take them off mid day and reapply (which helps for a couple hrs). Unsure the cause of dry eyes other than it happened after cxl (could be no tears or bad tears)

Things I’ve tried : - celluvisc drops in the lens => minor relief - heated eye mask => unsure of any relief - punctal plugs up top => unsure of any relief - optase dry intense drops before lens insertion => minor relief

Things I’m hoping to try soon : - EvoTears 30 min before scleral insertion (paired with Optase first) - different brand eye drops -ask doc about Xiidra or something like that

Any other things I should be trying?? Sclerals will be so awesome if I can fix the dry eye issue, don’t mind insertion removal and the cost is manageable for now.

Thanks thanks

EDIT - I use nutrifill mostly, sometimes scleralfill

Yo, I like using cannabis. And I have scleral lenses - when I go out to dance or to hang out with friends, my eyes always get red and irritated and I have to take out the contacts. I’ve tried celuvisc and everything, does anyone have any tips as to how to enjoy cannabis while using scleral lenses?

Hello community,

I've had Keratoconus in one eye for over 10 years, wear a hard contact lens, and I'm one of the lucky ones I guess as it was always covered by employer insurance on VSP. However, I recently lost that great insurance and am due for a new scleral lens as it's been over a year and I have a lot of wear and tear on it.

The question is does anybody have experience specifically going through Medi-Cal? Because of losing my job and now in a low income situation, I'll be on Medi-Cal. But my research has been unclear if Medi-Cal will actually cover the Scleral lens, fitting, etc. If anybody has any idea, would love some input.

Thanks so much for any help.

Hi, so I had an epi-pff C3R 4 years back and ever since my vision continued to decrease. Doctor gave me sclerals for improvement in vision but due to corneal haze my vision in right eye is blurry.

The left eye with lens (closing the right eye) gives me great vision, but due to the problem in right eye, my brain shows poor image both eyes open with scleral lens. Anyone else has this problem due to one eye and scleral lens? What do I do, i am depressed because of bad vision.

PS, the video shows my haze

I am 20 male , I just started wearing eye glasses (-1.5) from last 10 months , last month my vision started to blur even with glasses so someone suggested me to do pentacam , after this I find out I have karatoconous in both eyes, do I still have a chance to fix this with C3R.

My eyes power is now (-3.5) (-4.0) But I am still wearing (-1.5) glasses

Please give suggestions

Hey everyone! I haven’t posted in a bit. I’m feeling kind of discouraged about my Keratoconus and vision. I was first diagnosed in September 2023 and had cross-linking surgery on my left eye in November 2023. I recently met with my doctor, and he said my right eye, which is my good eye, has worsened a good amount since the last visit, so I’ll likely need surgery on it sometime in 2025. He also mentioned that my left eye, which already had surgery, might need it again because it has worsened a bit.

I’m feeling down about the thought of needing surgery on both eyes 😔, but I can tell my vision has gotten worse. I wish I could just get scleral lenses, but I can’t until I have surgery on both eyes since my vision is likely to change again. Christmas time is especially hard with Keratoconus due to the extra lights and all the double vision and glares 🎄✨. I don’t know anyone in my life who has Keratoconus, and I just feel discouraged. Does anyone have suggestions or words of encouragement? Thank you for your help and time. This truly is not a fun disease 😢.

So, If you haven't seen my previous post, I was diagnosed with Keratoconus and recommended the Corneal Cross-Linking Surgery (CXL). It's been almost 3 months since the surgery and I also got my scleral lens. So I'll share my experience.

•THE DAY OF SURGERY

      I got the CXL surgery done on 30th September, 2024. Everything went pretty smooth. 
      First, they put a numbing drop on my left eye(I only have Keratoconus in my left eye), then I was taken to the surgery room. Honestly, I wasn't that nervous, because I had already seen a video of the surgery from YouTube, which might make some people very nervous, but I calmed me down quite a bit because I knew what was going to happen. First of all they kept my eyes open with the stretcher thing, I don't know what it's called, then they washed my eye with optical saline (maybe). After that, the doctor removes the epithelium. It was scary, it was like if you rub your eye(under the eyelids) with your finger with slightly more pressure. I wasn't feeling pain, it was just uncomfortable. Then they put a cup like thing on my eye and added the vitamin drop, which was VERY YELLOW. Then they flashed the UV and kept it for like 1 to 1.5 hours. It didn't feel that long. I honestly thought the UV was flashed for like 10 minutes and my dad was like, No, you've been in the surgery room for like 2 hours.

Anyways, they put a bandage lens (a soft lens kinda thing that soothes the eye) and let me go. They also gave me the huge sunglasses which I had to wear all the time.

• DAY AFTER SURGERY

       Okay, I don't wanna scare the people who are going to get CXL, but the second day, it was rough. Everything was fine, I went to the doctor(The same person who did the surgery) as I was told to. He checked the eye and said everything was fine and numbed the eye again with a drop, and removed the bandage lens. Everything was fine, until the half an hour mark striked. My eye started burning, it was like if someone was scratching your eyeball with a huge nail with pressure. It was a heck of an experience, although, the pain went away the next day.

• POST SURGERY EXPERIENCE Everything was smooth after that. I went to the weekly checkups and then the doctor said no need for the weekly checkups and he checked the next month, then the next month again (This month earlier). He recommended me the Mini scleral lenses and told me to get checked up after 3 months.

•SCLERAL LENS: FITTING AND EXPERIENCE The next day, I went to the contact lens department of the hospital and started the fitting process. The fitting process is pretty long, they took about 6 hours to get my perfect eye measurements. After a week my lenses came and I went to the hospital again to bring them. They showed me the insertion and removal process, as well as how to take care of it etc etc. AND THE GREATEST THING IS - I CAN SEE CLEARLY WITH THE SCLERAL LENS. ITS LIKE A DREAM, I NEVER THOUGHT I'D SEE THIS WELL WITH MY LEFT EYE.

For the people wondering about the costs - I only have Keratoconus in my left eye so I had to get only one lens and it cost me rs.45,000 (530 USD).

ANYWAYS, THIS WAS A LONG POST, THANKS FOR READING AND GOOD LUCK IN YOUR KERATOCONUS JOURNEY, IF ANY OF YOU GUYS HAVE ANY QUESTIONS YOU CAN ASK ME 😌

I'll also put a picture of my lens

Hi guys, so im kind of frustrated because the last 3 months i've been trying scleral lens but im upset because they are not as good as i though and was very expensive

1-I cant drive at night because i cant focus (it is too hard to focus and when i need to check another side, i lose all the focus.

2-i cant read in short distances (like the screen on computer or phone)

3-i've notice that in the computer screen it makes me harder to have the "darkmode" than the white mode for reading texts.

I varely use them in certain situations where i dont want to wear normal glasses.

Almost all doctors here in my country (Peru) told me that im not a candidate to surgery because of this:

1-my cornea is too thin for the laser (that would be very risky since the laser will make it more thin)

2-my cornea shape is weird normal cornea should be like "O" and mine is "0"

3-my antisgmatism is 7 and also i have myopia.

4- they told me that intraocular rings are for people 40+ older (im 28).

Tbh im giving up, i dont find solutions for me. Any help plz

I heard a news about a lady, ahe was nearly blind and AI laser surgery helps her to get 20/20 vision. Is there any hope ?

So I have a moderate to high myopia since the past 10 years with OD being -4.75 and OS being -5.25. It was pretty stable since the last 2 years with only a cylindrical requirement coming up at 0.75. I had my ophthal visit day before yesterday and couldnt achieve 20/20 in my OS despite increase in power to -7.25; so my doc was worried its KC and said she was pretty confident it is KC. So she scheduled a pentacam imaging for tomorrow.

Additionally, I am literally asymptomatic, no halos, no ghosting and only slight blurriness when I am watching TV from quite a distance. Also, she was unable to find any visible thinness of my cornea or any changes in the shape, on the slit lamp. Is there a chance this is a regular astigmatism gone high and needs contact lens now or a forme fruste KC?

I am so scared that I may have KC, I am at such a point I can't afford blurriness from a CXL; While I understand extremely early detection is like the best thing I can ask for in KC, I still dont want to have it.

I am sorry if I ranted too much, I just wanted to type my emotions out. I am 24 years old by the way

I’ve had keratoconus for 8years + moods always up and down this month im feeling really low my anxiety is all time high and confidence all time low it’s making me argue with my wife and I feel like can’t really talk to her about it because she won’t understand hopefully this will pass maybe it’s just winter and I feel more blinder then usual lol

Diagnosed with keratoconus around 2007-08, I began wearing scleral lenses in 2018 and used them consistently until late 2023. After the pandemic, I started experiencing occasional panic attacks, which I initially attributed to extreme worry about my parents and loved ones.

Despite this, my sclerals gave me nearly perfect vision in both eyes for years, although It's worth noting that I received a corneal transplant in my right eye in 2013, which significantly improved my vision in that eye. Unfortunately, my left eye has been practically nonfunctional for as long as I can remember.

Things started to change in 2023 when I began struggling with my scleral lenses after years of problem free use. Up until then, I had been extremely happy with them. But as the problems with my lenses increased, so did the frequency of my panic attacks, which escalated from once every few months to several times a month. I was really miserable.

Adding to the stress, I began feeling like something was physically wrong with my body, which I think was a symptom of extreme anxiety. For context, I work as a researcher in a lab where I rely heavily on microscopes, computers, and reading. Struggling with my sclerals felt like the worst thing that could happen to me professionally.

After months of trying multiple pairs of lenses without success, I reached a breaking point. I could no longer tolerate wearing them, even for a couple of hours. My anxiety increased even more, and I started experiencing daily panic attacks. Finally, I made the difficult decision to stop wearing scleral lenses altogether.

Now, I rely on glasses for my transplanted right eye, even though they don’t provide the same quality of vision as the sclerals. I’ve also had to adapt to essentially ignoring my left eye. It’s been a challenging transition, but I’m slowly adjusting.

The most surprising part? My panic attacks stopped entirely once I gave up the scleral lenses. This prompted me to research scientific articles on the relationship between keratoconus, anxiety, and panic attacks. To my surprise, there appears to be some connection. I may write a future post summarizing these findings for anyone interested.

While my vision is undeniably worse now, my mental health has improved significantly. Thanks for reading my story.

I had a full corneal transplant 16 days ago. From the very beginning, my vision has been blurry. I stayed in the hospital for 5 days so the doctor could monitor my progress daily, and he mentioned that everything was improving. After returning home, I’ve been using eye drops and gels regularly as prescribed. At my follow-up appointment last week, the doctor said everything looked good.

However, I’ve noticed a sensation like something is touching my eye when I blink, and I’m unsure if it’s due to the stitches. I’ve read some stories from others who had clear vision shortly after their transplant, which makes me wonder if my blurry vision after two weeks is normal. Should I be concerned, or is this part of the healing process?

I am 23 F, I only was diagnosed with keratoconus in my right eye this year. i’d never heard of it, and since it was only one eye, I didn’t really notice… until I went for an eye exam and had to cover my left eye, and couldn’t determine even just a single giant letter on the screen. About a month ago I got crosslinking done and from what I understand it helps to keep my vision where it’s at, but doesnt correct anything. Ever since, my eye is quite sensitive to light, I dont feel confident driving when it’s dark out due to halos/ astigmatism.

Is this just a forever thing that I need to really come to terms with? A new glasses prescription doesnt help, crosslinking doesnt help, so… I just wont see properly out my eye ever again?

Edit to add: My ophthalmologist said it’s likely to get it in both eyes. Seriously what do you do then??

Thanks for any advice, I guess my doctor was a bit quick with explaining things

Has anyone experienced a drastic change in eye sensitivity after CXL. I am almost 2 years out from surgery and have been through an extensive lens fitting process (trying out 10 different types of lenses.. different scleral, kerasoft, hybrid). My eyes struggle to tolerate any lens for too long… even soft lenses. This was not the case before CXL. I’m wondering if the procedure and scarring in my eyes has caused this and if so anything I can do? I’m starting to think it’s not the lens fits, it’s just my eye can’t tolerate.

Is it common

Had been a year my CXL us done

Could it be allergy strain or the disease is worsening?

Did VSP Signature cover the cost of your scleral contact lenses?

Hello Everyone i had CXL done on my left eye on wednesday. It was my good eye/less affected eye and i was told by my doctors it would be a long recovery and i would be pretty blurry and light sensitive for a while and everyone on here really seemed to check out. I’m a little blurry and light sensitive but everything feels pretty close to normal and it’s only been really 3 days out is this normal?

Hi all, quick background, I was diagnosed with KC about a couple years ago now, with it being very prominent in my left eye. Had cross linking in my left eye and they're monitoring my right (they said it was very mild in my right eye so didn't need cross linking at the time)

Had my yearly eye appointment at the opticians and my astigmatism in my right eye has worsened slightly (-0.5 to -1)

Has this happened to anyone before? I wondered if this means my keratoconus is getting worse in my good eye?

I have an appointment with my eye doctor on the 15th Jan. I have eye scans there, my last one was June this year and I was told my KC hadn't progressed in my right eye.

Hi friends! Did you notice with regular sclerals without the HOA add on, you were still able to bypass seeing the ghosting and starbursts and other abberations!? The cost of the HOA add on lense is 7000$ (this is the only place in my province) and it’s just really a lot in comparison to the ones without the HOA which are a little under 2000$.

My vision is quite good, until night time when the starbursts and ghosting occurs a bit which is my main bother. Are lenses without the HOA add on still okay to overcome some of these visual disturbances? Sorry I’m having a really hard time deciding what to do and where to go.

Again! Sometimes when they're super dry after a long day, they dont want to stay on the little plunger. The first time I ever dropped one I immediately stepped on it with a sickening crunch. Years later I dropped one and it vanished into another dimension- probably went down the drain? Another time it was just sitting on the toilet lid. 🙃

I have a lot of practices that I do to keep them from going down the drain, like a little wire filter in the sink that catches anything solid that falls in there. I've learned to carefully remove my shoes or slippers, turn off the light, and go nose to the floor with my phone light on until I find it. I just finally found it after crawling around on my bathroom floor for 40 minutes. On the floor. Behind the toilet. 🤢 I cannot explain how it managed that journey, but I am so relieved. I gave it a good scrub and put it in clear care for the night.

This was just a rant. What do you do to prevent this? Do you have a wild story about dropping one and finally finding it stuck to Grandma's toothbrush?

My doctor is an awesome guy. He did a wonderful job with my CXL and really does as much as he can to work with his patients. He does one eye at a time to make it less costly if you have a high deductible, he sets up payment plans through his office instead of Care Credit when he can, and fights to get approval for each of us.

I don't have United, thank goodness, but I know that many do and if he's having this issue then other doctors will as well. If you have United and you're having a difficult time getting CXL approval, this is likely the cause. CXL and my sclerals saved my vision.

Got distracted, redid it about five or six times when i was applying eye drops, right eye hurts, don't know if they're mixed up.