And how fast did it progress? Did you need surgery, like a corneal transplant, eventually?
I do not have keratoconus, but I worked with a woman who had it and who had a number of family members, including her two children, who had it. She herself eventually had a cornea transplant, as did her son and a couple other relatives. She said the surgery sounded more scary than the actual experience, and on the balance it was a definite improvement at the time surgery became appropriate.
Her family experience was that while it invariably became worse, the pace of the condition varied significantly from individual to individual. She had her cornea transplants in her late 30’s, her son in his 20’s, other family members were in their 40’s and still had not had one, though perhaps some of them should have and did not/were afraid of the surgery.
This is all, obviously, at least second hand but you aren’t the only person out there and I’m sure someone with more knowledge and experience will be along shortly. It sound like a very unpleasant situation but at least these days something can be done to help you. As always, consult a medical professional, but it sounded to me like you needed some reassurance. Not sure if I provided any, but as I said, you aren’t alone. There are problem some keratoconus support groups on the internet where you could get some first hand information from other people with the condition.
I have keratoconus (KC). First diagnosed at around 21, now 40.
It was first diagnosed when my optician couldn’t correct my vision well enough with regular glasses, and I saw an ophthalmologist. He diagnosed me, and sent me off to get fitted with Rigid Gas Permeable lenses, which I’ve worn since (and never really had a problem with).
I’ve had a great optometrist for the last 16 years.
At first it didn’t effect me much, but it’s gotten slowly worse over the years, and for a while I wasn’t the best patient (not going in to get my lenses checked often enough probably caused scarring on the cornea). Back in 2005 my optometrist told me that I shouldn’t be driving at night anymore. That of course was a significant impact on my life. Shortly after that, I went to see an ophthalmologist, to see what my options were surgically. If you don’t know, standard LASIK and the like is not appropriate for someone with KC, since the cornea is already weakened. I talked with my doctors about Intacs (corneal inserts that are supposed to help flatten the cornea), but it was agreed that my eyes were too far gone to be a candidate for that.
So in February of 2006 I had the cornea transplant surgery on my left (bad) eye. The surgery itself wasn’t too bad - outpatient surgery, with general anaesthetic. The recovery was a little rough, but nothing too bad, I had a little complication where they had to put in another suture about two weeks afterwards. Steriod and antibiotic drops for several months, plus around that time they take the sutures out (which was painless).
After about six months, I could be fitted for contact lenses again on the surgical eye. That’s when I had a HUGE improvement in my vision. After time, my optometrist has gotten me to 20/25 corrected vision in that eye, which is of course way better than before the surgery. I have a little problem with glare from lights at night, but again, way better than it was. Since then I’ve had no problems with the cornea at all.
I’m still a candidate for the transplant in my other eye, but for now, I’m happy with my vision so I’m not rushing in to it.
My younger brother has a milder case of keratoconus. He had the Intac surgery two years ago, and hasn’t been thrilled with the results.
Revtim, I don’t think you are, but if you’re in the NYC area I can recommend some excellent doctors.
Also, the NKCF (National Keratoconus Foundation) is an excellent resource. If it makes you feel better, Mandy Patinkin has KC, and has had transplants in both eyes.
I work in an ophthalmology office, and I’m responsible for a large part of the care of the patients with keratoconus. In fact, just this morning, I had a patient in to pick up his new contacts. We do not have a LOT of K-cone patients, maybe 20 or so.
Absolutely nothing following should supercede YOUR doctor’s advice. I will be relating only the experiences I have in the office where I work.
As mentioned above, RGP (rigid gas permeable) contact lenses will likely be the first course of treatment. If you find them horribly uncomfortable, ask your doctor about the FlexLens by X-Cel. We’ve had a few VERY successful fits with this lens, which is a crossbreed of a soft lens and a hard lens. They are very tricky to handle, but are often much more comfortable than RGPs. If your doctor prescribes RGPs, wear them as much as you can tolerate, and then, every day, add a little more time. Your eyelid itself needs to acclimate to the idea of a rigid foreign body, and discomfort is common in the beginning. Our doctors advise trying as much as 4 hours the first day, if tolerated, and adding one hour per day until wearing them fulltime. If the first day finds you only able to tolerate one hour, try adding 1/2 hour the next day, then increasing your wear-time daily. If FlexLens is prescribed, you will find them comfortable enough to wear for several hours the first day.
This will all be easier for you if you’re already a contact lens wearer. I often have to teach people how to use contacts for the first time when they are diagnosed.
Please be patient with yourself and your course of treatment. Keratoconus is not a black and white diagnosis, and every patient will respond differently to treatment. You may go through several pairs of contact lenses before the fit is right. Be sure to check with your medical insurance on this. Because the contact lenses will be medically indicated (and expensive), your insurance should pay for the bulk of the treatment, even if you don’t have vision materials benefits. RGPs can be ordered “warrantied”, meaning that the company that makes them will replace them within a certain time frame if the fit is not perfect. I order every RGP with a warranty, regardless of whether it’s a new fit or a replacement lens.
As we do not have a corneal specialist at our practice, we refer surgical K-cone cases out to one. Sorry I don’t have more to offer on that course of treatment. If you happen to be in the Philadelphia area, I can recommend the doctor that I would travel to see if I were in your shoes.
Like any disease or disorder, keratoconus will be different for every patient. Following doctors’ recommendations is paramount to the success of your treatment. If I can be of any support, please feel free to ask. If I don’t have an answer for you, I’ll do my best to get one within a day or two.
Good luck. Keratoconus is, thankfully, very treatable and manageable. I hope your care is the best!
Thanks for the info everybody.
The doc is having me go the RGP route first, I’ll get my lenses in a week or so. I’ve been wearing soft contacts for 25 years or so, so hopefully that will help me somewhat. I’m in south Florida, but thanks for the offers of doc recommendations.
I tried my RGPs fro the first time today, and my vision was better than it’s been in a long while. It’s going to take some getting used to though, I felt those things in my eyes with every blink for the 3 hours I wore them today. And it’s gonna take getting used to them moving with every blink too.
I was surprised at how small they were, for some reason I was expecting them to be the same size or even bigger than my soft lenses.
RevTim, give yourself some time and patience with those lenses. Yes, they are tiny. If you drop one on the floor, and don’t find it right away, turn off all the lights and search with a flashlight. Remember, your eyelids need to get accustomed to the lenses. Don’t be afraid to use lubricating drops. Your vision will continue to improve as the lenses change the shape of your corneas.
Good luck!
Thanks for the encouragement. My 4 hour stretch with them yesterday was quite uncomfortable, I hope it’s at least a bit better today. Man, I like not having to squint to see stuff when I’m wearing them, though. It’s good I have that immediate incentive to use them, it would be tougher to soldier through the discomfort without that, I think.
Another plug for lubricating drops. I still use them from time to time after 19 years.
And don’t push it - if your doctor has told you how long to wear them, and how/when to increase the time - listen to him/her. Even if they’re feeling comfortable that day, don’t push it.
What brand lubricating drops do you use?
I’ve got it. I found out when I went to get a LASIK evaluation. The ophthalmologist thought that he could perform it, but I decided to get a second opinion. The other guy recommended Intacs. I asked the original guy about Intacs and he was not enthusiastic.
So, I went down to UCLA’s Jules Stein Eye Institute and got a major league eyeball evaluation, and they said don’t bother, the risk reward ratio was too high. They did say that cornea strengthening via Riboflavin application and UV light is in clinical trials with promising results.
Since I’ve already had cataract surgery, and realize the importance of vision, I can tolerate the corrected vision via glasses or contact lenses.
I will still get LASIK down the road if the technology proves effective for my particular situation.
Thanks Darryl Lict.
WishIhadacoolname,
I recently moved into the Philly area from Boston and was wondering if you could tell me the name of that doctor you said you could reccommend. I’ve been having trouble locating one who can help with my kc. Thanks.
So Rev, have you broken any of your RGP lenses yet? 
I almost broke them on purpose, when I first started wearing them! Uncomfortable bastards. Fortunately I’m pretty much used to them now. And my vision is awesome! With my 1st pair, I was seeing 20/25, and I just got a 2nd pair that improves that a bit. When I have my follow-up appt next week I’ll be tested, and it wouldn’t surprise me if I’m at 20/20 now.
Give it a while and you’ll accidentally break one of the damn things. I have a small skinny frame of a body, so my fingers are not big and hulking. Despite the light touch I give them, I’ve still managed to break two completely in half by cleaning them at night. Then one lense had a pizza-style slice taken out of the side. I still have no idea how that happened and boy did that hurt like a MFer when I put it in.
Fucking ouch. >_<