I’ve been waiting months for a call back from the eye doctor

Looking into getting CTAK done for my son who has Keratoconus. Please share your experience and where you had it done.

Anyone have this. I have a regular astigmatism in my left eye and KC in my right. My left eye is corrected with glasses or soft contacts and I have my fitting for a scleral for my right at the end of the month. I will ask the doctor at my appointment if I can get a scleral for my left but I was just wondering if any of you have this. The only reason why I want it is because I don't want my eyes to look different and I noticed that scleral kind of hold your lid open quite a bit while they're in.

So I (40m) was first diagnosed with keratoconus as a teenager. It progressed rapidly for a number of years but then settled out and my vision hasn’t changed much in years. I have tried lenses several times but can’t put things in my eyes, though last time I tried was a decade ago and I may be ready to try again.

My left is dramatically worse than my right eye - the right eye does 90+% of my sight (even with glasses), left is basically just good for peripheral vision. Over the years, the left eye has started to go lazy, I think because it can’t focus so just drifts. It’s not lazy all the time but constantly drifts, and I’ve become super self conscious about this.

Has this happened to anyone else? How have you been able to manage it, medically or psychologically?

Not sure how to word this but I was diagnosed with KC around 6 months ago, had CXL this month. Recovering well however I don’t know how to stop micro checking my vision to see if my good eye has changed. I’m making myself quite ill and I keep crying. My mental health is not good and I can’t stop checking for changes. How do you deal with this condition - worried I won’t be able to see In the future

Finally got my lens but I lost the paper with the step by step instructions on what to do at night and morning. I’m lost I don’t know solution goes in the lens case. Can someone please help me.

For California, does it cover it?

The contact lenses irritate my eyes, I blink a lot and I have to constantly put eye drops. My doctor said the lenses are normal, but I feel like there's sand in my eye, I can't wait to take them out when I get back home. Anyone with this problem?

I was diagnosed with with Keratoconus today, my vision in my left eye has gotten so bad that I just see a blur, I also found out that even with 20/20 in my right I have started to develop it as well. I’ll add my Tomography for reference but I don’t really know how to process any of this, the idea I could potentially go blind by the age of 40, I’m only 24. I’m speaking to a surgeon that specializes in cross-linking this coming week and seeing if I could benefit from that or if I’m just fucked at this point. I’m assuming scleral contacts are in my future but I don’t even know if that will work.

I feel hopeless. I was in the process of becoming a deputy and I feel like this just put a very hard stop on that. Is there a chance I could get vision back after this process? How do you deal with it? I was never brought to an eye doctor even though I complained about vision when I was younger and at this point I just feel like everything is kind of falling apart.

So my brother has keratoconus and had undergone surgery 5 years ago, i don't know much about his condition, other than its genetic and how I'm constantly told not to rub my eyes since I am at risk for it aswell.

He also faces regular migrane and usually using a tight eye mask or a cloth tied tightly around his eyes gives him comfort, I was looking to buy a gift for him when I stumbled across this.

I really liked the concept and I believe he will love it aswell but somewhere I read about it that the product is not suitable for individuals who have undergone eye operations, have retina conditions, cataracts, etc.

Upon searching a bit I found just using the heating option could actually be beneficial while the massage and pressure options are a big no-no.

Can someone tell me if using this will have any adverse effect on his eyes because I know he would love it otherwise.

Is there a long term issue, or sideeffect after doing C3r or ICL surgery?

I can see 20/20 with my glasses right now but i'm scared because of sudden change of cylindrical power in both eyes [sph: -3.25, cyl:0.0 (2022)] to [sph: -3.25, cyl:-2.00 (2024)]. I want to get a corneal topography but it's very expensive in hospitals near where I live. Are there any other tests where doctor can rule out keratoconus?

Anyone experienced lens wearer of keratokocnus for 50 years how do you go and manage life and do your work daily and how do you go to barbar for hair cut due to low vision with kc and how do you guys manage your job with keratokocnus and doing professional job office based i want to hear from you people all iam finding difficulty get a hair cut from barbar and travelling also different countries internationally what should I do how you guys manage so much things with this extremely difficult dieases what are the tips and tricks to overcome this issue iam in world of sadness I find every thing difficult to do my tasks

With sclerals *

Some days my vision is great but some days my vision is great but some days I see slight doubling of things.

Like yesterday I look at my ring doorbell chime it looks normal but today I can see the round light on top.

This has been happening a couple of times

Some days I there's no doubles some days I see doubles

After coming to canada, its my first time to buy scaler lens. It’s hard to find any doctor for it, either the doctor is gone or they don’t sell anymore.

I'm doing research because my good eye seems to be advancing, and Implantable Collamer Lens is an existing procedure I am seeing online, for people who cannot undergo Lasik just like us with Keratoconus.

Seems logical, and a great way to by pass the issues caused by the cornea.

Is Implantable Collamer Lens surgery non compatible with Keratoconus?

Hi So a question on how long you wear your sclerals… I have been an RGP wearer for nearly 30 years and was diagnosed with KC when I was 23. I can wear them all day with very little issue, and have had to wear them for over 30 hours when travelling internationally. Now I am being switched to sclerals due to rubbing of my cornea and am pretty much there with the fitting now. However I am being told I must change the saline after 10 hours of wear.. now sometimes this is just not possible if working away and travelling, plus I find my eyes are tired when I take them out so the thought of a quick clean and reinserting them is not a great thought! If I don’t put them back then I am useless… can’t read, see the TV and def can’t drive ! What do others do about this ? I kinda get why as there is no permeation like the RGPs.. but this is going to have a huge impact on my life as it will restrict me from doing a lot of things and impact my job. Thoughts ?

I recently found out that I have keratoconus, and I was told there’s a simple solution—scleral lenses. I was excited because this meant I could finally drive at night again!

Two weeks ago, I had my fitting, but I struggled to keep my eye open. I figured that was normal for someone who had never worn contacts before. Regardless, I got fitted, and my lenses arrived yesterday.

Excited to start this new chapter, I went in to pick them up. As the assistant was helping me put them in, I noticed she wasn’t using any saline to fill the lenses. I politely asked if that was correct, not wanting to question her qualifications. She assured me it was fine. After some effort, we got both lenses in.

Immediately, I knew something was wrong—my vision was even blurrier than usual. They took pictures and scans on two different machines. When the doctor finally came in, she looked at the scans and told me, “You’re missing a lens in your left eye.”

What? After all the scans and pictures, there wasn’t even a lens in there? Somehow, the assistant went back to the other room and miraculously found it. We cleaned it, put it in, but my vision was still blurry.

Then the doctor told me that after my fitting, someone had suggested she try ordering smaller lenses since I struggled with insertion. Instead of scleral lenses, she ordered “V Cone RGP” lenses without telling me. I was frustrated but remained respectful—I know she was trying to help. I just wish she had informed me before making that decision.

I told her, “It doesn’t matter to me how difficult they are to put in, as long as they work. Whatever we have to do to get them in while in office to confirm if they work, let’s do it. I’ll practice at home and get used to touching my eye. I just need something that works.”

Anyway, venting over. Now, excuse me while I practice touching my eye until my sclerals finally arrive.

Does anyone here use this type of lenses? It's the first time I'm going to use it and I thought that in this type of problem it would have to be rigid lenses, but the doctor prescribed these

Guys, I'll have an appointment with my eye specialist about my scleral lenses in a few days, and I feel like there are many people struggling to find the answers to their questions. If you want to, write a question in the comments and I'll ask my doctor so that you'll receive the answer. (Just thought this might help some of you)

hi everyone

i am new to sclerals. i get my lenses shortly.

what should i ask for from my gp... and how much of it?

don't want to stock pile it, but don't want to run out!

I realise I need solution, saline and eye drops, but what brands and quantity?

also any thoughts on the nhs prescription season ticket? is it worth getting?

any suggestions much appreciated - because i doubt my gp surgery will know about it - so want to feed them the answers!

cheers

tim

My mom is having a corneal transplant tomorrow, and I wanted to make her a little care package for afterward. Any suggestions for what should be included?

I’ve lived with keratoconus for about 20 years and have undergone corneal transplants in both eyes. Since then, I’ve tried numerous types of lenses but never found the perfect fit—until now.

My optician recently suggested trying a brand-new type of lens called Kerasoft AV, and I’m absolutely amazed by the results. The clarity is incredible—it feels like switching to HD vision—and they’re by far the most comfortable lenses I’ve ever worn. Unlike traditional lenses made from acrylic, these are made of silicone, which makes a huge difference in comfort.

If you have the opportunity, I highly recommend giving these lenses a try!

I finally worked up the courage to try a non-scleral lens for keratoconus after a traumatic experience with my first scleral fittings when my eye came too far out the socket.

I went to a different office altogether after calling around to find more options. I even planned to pay out of pocket since I couldn’t find a place under my insurance.

I assumed we’d try hybrid SynergEyes but we actually tried Nova (NovaKone?). And the globe subluxation happened again during insertion of the lens!!!

This time it was the left eye… last time I think it was the right eye.

Still painful but not as bad as with the scleral where I could not drive home after appointment.

Has this happened to anyone else? Can I just not trust medical professionals to insert these lenses? Are they too big and do they require my eyelid to move back too much when compared to a standard toric lens? Maybe my eye socket is just shallow? They never suggest for me to insert myself under their supervision during the fitting…

If I can’t wear medical lenses of any type in the foreseeable future… what else could I do to help with my vision while driving at night? Any treatments I can do to my car windshield or any accessories you might suggest?

Or is it just uber/lyft now?

Hii kc family I have heart that scleral lens cause infectious kerattis and microbial kerattis anyone know about this and how to avoid them this issue this makes me afraid as iam scleral lens wearer any one experienced lens wearer can tell to avoid this problem

Reading this post, I got the question while doing my own research: https://www.reddit.com/r/Keratoconus/comments/eqr9bs/use_of_thealoz_duo_to_fill_sclerals/

I picked up Thealoz Duo a few weeks back, as I tried it during one of my eye exam and noticed that the very liquid solution made my vision more crisp (but was a bit less comfortable to wear). https://www.thea-pharmaceuticals.co.uk/products/thealoz-duo

I've noticed for the past 2-3 weeks that my good eye's ghosting effect is increasing slightly.

I am wondering if using this solution, which has a sort of anti inflammatory compound in it, could be the cause of that increased doubling? I use Systane ultra vials only for the past years.

Perhaps these drops are good as eye drops, but not a 16-18+ hours a day sceral filler solution.

Thank you, this is my last eye and I want to keep it another 20 years minimum!

I sit in front of the computer all day and asked for accomedations but my work isn’t believing my request for the monitors I found.

What accomedations are reasonable with this disease ? I have an appt with my doctor soon and wanted to figure out what to ask for beyond a monitor.