I did a bit of searching for good examples of how life looks when you have Keratoconus… Here are the images I found. Some images weren’t credited… so if you are the creator/artist/photographer and I have used an image you would like removed, please make contact with me.
Monthly Archives: February 2011
Had my pre-surgical physical today in Lexington at Baptist Family Medicine Clinic – with my long-time family MD. No surprises. I am healthy and should be good to go. Blood test, a few questions, and I was out of there. Scale was friendly – showing I’d dropped 11 lbs. Blood pressure was completely normal – nice considering my family history of high blood pressure.
The staff were quite interested in seeing the photos of my cone taken (previous post) the day before. Oddly, my physician was having trouble with dry eye, and I was able to give her advice and tell her about how semi-scleral lenses help with this – talk about role-reversal.
It is now 2 weeks from my surgery. I’ve been studying the various means of anesthesia – as evidence on right demonstrates.
Well, I set out today to take a good quality picture of my cone, and managed to do it (after 20-30 tries) with my iPhone4. It’s not easy getting the alignment right.
Alas… you now see the culprit. A ugly, lumpy cornea with a bulge at the bottom. If you zoom these, the cone is really obvious.
The idea that Keratoconus is caused by eye rubbing has been around a while. I’ve talked with 5-6 corneal surgeons and they’ve had differing opinions on it. There was consensus that one should be more safe than sorry and advise kids to avoid hard eye rubbing – and to treat the underlying condition. My daughter’s itchy eyes are treated with Patenol, and I advise my kids to avoid doing it. I asked them to report it to me when they have itchy eyes and I guaranteed to help them get rid of the symptom. When I was a kid, I rode motorcycles a lot. In the dust, dirt, mud, fields of corn, fields of grain, fields of dreams. But I don’t recall rubbing my eye that much.. but why would I?
“For example, a case control study of 120 subjects with KC involved assessment of potential risk factors, including atopy, family history, eye rubbing, and contact lens wear. In the univariate analysis, there were associations between KC and atopy, family history, and eye rubbing. However, in the multivariate analysis, only eye rubbing was still a signiﬁcant predictor of KC.” – Charles W. McMonnies, M.Sc., University of New South Wales, Kensington, Australia (see more)
Here are some other articles/citations on the issue:
- Rubbing my eyes all the time nearly cost me vision.
- NIH publishes conclusions on the issue
- Research in the American Journal of Ophthalmology Seems to Agree
- Rubbed the Wrong Way (excellent post)
This quote from one physicians’ advice puts it in plain English:
Keratoconus has been associated with eye rubbing and eye allergies. Don’t rub your eyes!!! It is believed that eye rubbing can help to distort and thin the corneal surface. To help you with not rubbing your eyes you can use eye drops that lessen the symptoms of eye allergies. Some of these are available over the counter and some need to be prescribed. A good over the counter anti-histamine eye drop is “Zaditor”. Cool compresses help. There is also some evidence that using cooled tea bags and even cucumber slices help to calm the symptoms of eye itching. – Dr. Jon Vogel
I may extend the list of links above if I find anymore.
Tomorrow: My pre-surgery physical.
When taking out my semi-sclarel lens, something didn’t go right. Either I didn’t pre-lube it enough or just had a bad angle. The removal does something to the nerve endings of the cornea and “whap” – pain! I can pretty much count on it hurting for 12 hours, so took Benadryl to sleep last night (knocks me out.)
I hope that this will not be the case after the new cornea is healed. It’s unpredictable. I had to cancel meetings at work today because I get these stabbing stinging pain out of nowhere – and makes me look like a turets syndrome patient as I flinch and curse.
I wish there was some kind of anesthetic drops that wouldn’t dissolve my cornea even more, but for now, it’s going to have to be Tylenol. Perhaps my cornea is protesting it’s last few weeks?
Image: “Pain” by iprozac on Flickr
Well, as the days tick by, I’m becoming more acutely aware of my forthcoming date with Dr. Holland. I’ve began to plan things a bit for those 2-3 weeks after the surgery when I’m certain not to be at my best.
- getting a physical.
- informing clients of my absence.
- scaling down work schedule for the period.
- scheduling time to have work done on my commuter bike (since I won’t be able to ride for 20-30 days.)
- getting as many “heavy lifting” tasks done as I can before hand.
- looking around for some clear glasses I can use to protect my eyes.
My KC eye has been awful at night lately… not so bad during the day. At night, it’s constantly dry – I am awakened 3-4+ times nightly, and pour lubricant into them. Sleep deprivation has caught up with me – I nearly fell asleep in a meeting, and the double espressos are not enough. I wonder how I’ll sleep after the surgery?
I’m having more migraine also – which may or may not be sourced to the KC vision/strain. Thank goodness for Imitrex. I just read the really amazing story about Serene Branson’s on-air voice problem during the Superbowl… it turns out it was migraine-aura related, not a stroke. I wonder if this will raise awareness of migraine and its debilitating effects.
Have been thinking about how the brain reacts to poor vision in one eye, and how it might re-learn to use that eye after surgery. Heard an interview on NPR about how our senses are mapped onto the brain. Quite interesting. I wonder how KC patients’ brains re-map themselves before and after cornea surgery?
photo: “19″ by Lincolnian on Flickr
It’s been a year now since I tried wearing a type of Semi Scleral lens… it’s a 14MM lens, so larger than most soft lenses, but not as large as a full-scale scleral. It’s like a really large RGP in a way. I was unable to use hybrid lenses such as Synergeyes - as I could never get a full vault from them and they did not transmit enough oxygen (though it could have just been my incompetent fitter.) See others’ similar experience.
First: Do not compromise on who’s doing your fitting. Even if you have to drive a couple of hours, find someone who does a lot of Kerataconus patients. Most lens fitters do a few KC patients a year. Find someone who does a few per month at least. Just because they have the fitting kit in the office does not mean they know how to use it!
The lens has the following advantages for those with Advanced Keratoconus:
- The lens vaults the corneal “point” preventing abrasions and discomfort.
- It holds a saline/tear layer under the lens, addressing dry eye symptoms for many people.
- It’s easier to insert than a full scleral. Just 3-4 drops of saline in the lens, inserted with your face down. (similar to this video)
- It stays in place – it’s really held on the eye.
- Wear time of 8-10 hours on a good day.
- Better vision than you’ll get with a soft KC lens or glasses.
The disadvantages as I see them
- A learning curve to insert properly… bubbles must be avoided. It takes 1-2 weeks.
- If your KC is really steep, the lens must be also, so the “rim” of the lens will be bearing the load, as well as the “push” that your eyelid places on it each time you blink. This doesn’t hurt as it happens, but over the course of the day it can get uncomfortable. You may see blanching – or redness – just at the scleral-iris boundary.
- Removal must be done carefully to avoid pain. You must use a suction plunger to remove them.
- Very expensive. $300-400 each.
Insurance will not cover them … says they are “cosmetic”
- Breakable… do not drop them on a tile floor – spread a towel out on the counter.
- Cleaning is tricky… you want to be really careful. I use a q-tip to clean the “inside bowl” of the lens. Take your time.
- Never let anything under them – rinse the heck out of ‘em.
Some other thoughts about these lenses:
- You must not wear them too long, or you’ll pay the price the next day.
- When removing them, make sure your eye is well lubricated. Let the lubricant sit in your eye for 30-45 seconds before attempting removal.
- Preservative-free saline works best under the lens. Even if you’ve never had any problem with preservative – this is a new situation. This saline will be under the lens in a small volume – and any thing that irritates your eye will be concentrated under there. I use Unisol 4 in the 4-oz bottles because you must discard the solution after 30 days.
- I use Refresh No-Rub for nightly storage – hoping it will help disinfect the lens.
- I take a Zyrtec every day to avoid eye itch.
- Invest in a nice little LED-lit mirror to carry around. I have one at work, one in my car.
- Buy a few extra plungers – I keep one at work, one in my car, and one at home.
It takes some time to get used to them, but they can work really well.
Almost imperceptively, Keratoconus has given me an impulsive “can’t go” reaction to everything that happens after 8PM. I know my eyes will be hurting and dry by then, and will want to stay home.
I even project this onto others… “You can’t possibly do that drive in a single day!” I’ll say. The reality is that I’ve simply forgotten that it is possible to remain active for longer than 10 hours.
Short 3am diary post from bed. Three nights now the KC has interrupted my sleep.
I’m getting low quality sleep and hope that this improves after surgery. Lubricant just doesn’t last long enough and I awake to a dry eye.
But if you go online, such as Facebook or blogs, you see many who have problems. How can this be reconciled?
Here are some reasons, as I discussed with my Doctor.
- Most people who have had the procedures just move on with their lives – they never bother to write or talk about it.
- Many people searching for things online use negative searches.. such as “corneal transplant complications”… search engines are very good at delivering just what you want, so the list of search results presented will focus on negative stories.
- I am not a psychologist, but it’s my opinion that many of these folks are needing to reach out and find sympathy for their problems. I’m not saying this is wrong – and I would like it if everyone had a support network – but with Keratoconus, the online world is the only network of sufficient size that you’ll find others who understand what you’re going through.
- Some Keratoconus patients (especially young males!) are non-compliant – they skip their drops, ignore doctor recommendations, etc. This boggles my mind, but everyone has their own life situation to deal with. But they also skew down statistics since their outcomes are also included in surveys with equal weight as complaint patients.
I’m still 29 days away from my surgery – and it could go terribly. If so, I will post it here. But if it goes well, I will post it also, hopefully adding a bit of balance.
By way of the diary – I have had a few very good days with the scleral lens – but winter dryness still hurts. I went to see my dentist to see if I needed root canal on a troublesome tooth before the surgery. Lucky for me, he said no. I don’t really want multiple issues going on.