Author Archives: RC

Keratoconus can make the cornea ultra-sensitive

Cornea PainYesterday, I had a bad “removal” event with my lens.

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
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Posted by on February 21, 2011 in Diary Entries, Pre Surgery, Surgery-Story


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Surgery Countdown – Less than 3 weeks

"19" by Lincolnian on FlickrWell, 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
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Posted by on February 18, 2011 in Diary Entries, Pre Surgery, Surgery-Story



Thoughts on Semi Scleral Lenses

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!

I keep a plunger at work, car and home.

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.
  • A little lit-mirror can be wonderful for this

    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.

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Posted by on February 14, 2011 in Keratoconus Technology


Keratoconus’ Effect On Life #1

As I look down my Facebook events a moment ago, I see the following:

Not attending
Not attending
Not attending
Not attending

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.

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Posted by on February 13, 2011 in Diary Entries, Pre Surgery


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Keratoconus and sleep

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.

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Posted by on February 12, 2011 in Diary Entries, Pre Surgery



How to Reconcile DALK/PK Success Statistics with Anecdotal Internet Stories?

If you review the literature of DALK/PK, you’ll find that they have an incredibly high success rate.

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.

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Posted by on February 10, 2011 in Interesting Stuff, Surgery-Story



Cornea DALK Procedure – 30 Days and Counting

Well, as of this morning, I’m 30 days away.  In the next 2 weeks, I’ll be getting a full physical from my family doctor to be sure that there are no issues with the surgery (I don’t expect any.)  I have began to notify my clients of a 2 week period of low productivity, and a full week out of the office.

I still feel overall excited, with a tinge of anxiety.   I only question the idea of the transplant when I have a “good day” with my semiscleral lens, like yesterday (11 hours of wear time, very little discomfort.)   But all I have to do is close my 20/20 right eye to see that I still have a problem.   I am also hoping for the DALK not to be converted to a PK – but I need to be ready for that.  The doctor said the DALK would be lifetime, with little chance of rejection, but it all depends on what he finds on the lower membranes.

Today, I have to go to the dentist – likely for a root canal.  I’m a nighttime grinder, and I’ve damaged some of my teeth.  I don’t want the teeth hurting or be on any conflicting pain medicines near the surgery, so getting it taken care of now.  Not looking forward to it – I hate going to the dentist

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Posted by on February 9, 2011 in Diary Entries, Pre Surgery, Surgery-Story


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Dealing with Keratoconus in 1866

Check this out, from Harper’s Magazine, 1866

Antique cornea flattener

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Posted by on February 6, 2011 in Interesting Stuff


More Keratoconus Questions Answered

Okay here are the keratoconus questions I brought with me to my second consultation along with the answers I received (aggregated from all answers, but mostly from Dr. Holland.)   After the appointment I sat in the car and wrote down every answer I could remember.  And here are the results:

Q: Have  I tried all available contact lens ideas?  [I have a semiscleral lens]
A: Yes, I’d say you’ve reached the end of that option with the scleral lens.  Most people never get to a scleral solution.  You have advanced keratoconus, very steep cornea and very thin cornea… the lenses you have are the most comfortable that are possible.  If this isn’t working, you’ve extinguished your options.

Q: Does my Scarring rule out most novel ideas?  Is my scarring that bad?
A: Yes, your scarring is centered and cannot be fixed.  Most other things, such as cross-linking, corneal rings, etc. will not help.  Also you have so much steepness that these options would not flatten your cornea enough no matter what the scarring.  They can work for mild cases. If your right eye started showing KC, we might consider those approaches.

Q: What about Nerve Endings?  Right now, my eye feels like it has a bad sunburn.  What happens with your eye sensation after the graft?
A: At first there will be none, but they will grow back in 3-4 months.  Your “burning” pain is coming because your steepness prevents a good tear film from forming – you have dry eye all the time.   The center of your cornea is drying out, and this is part of the problem.

Q: Corneal neovascularization – do I have it?  Are there any pre-graft procedures I need to address it?  Are the semi-sclarel lenses and their “blanching” causing this?  [why I was concerned]
A: No, you have only superficial case.  No worries there.  You have minimal vascularization.  It becomes an issue when you have two or more quadrants of vascularization.

Q: What should I expect in terms of vision compared to what I have now?   (bad)
A: It’s hard to tell – some patients see better right away.   Given the level of steepness and scarring you have, I think you’ll see better pretty soon.  You may be able to try a contact lens or glasses prescription within 3 months.  We may take sutures out bit by bit, but typically we wait until a year’s passed.  After about a year, we may want to do a laser procedure to get rid of residual astigmatism.
(postscript 3/17/11:  My vision was immediately better – dramatically so….  see later posts for more detail.)

Q: I just keep reading about problems with cornea grafts on the web.  Is it just that they are the only ones that post?
A: Yeah.. but there’s another thing.  The numbers are skewed by non-compliant patients.  That is, 22-23 year olds that don’t follow the post-op regimen – drops, suture care, etc.   You are old enough to know that this is important, and I expect you to do really well.  With someone like you, we’re looking  at a 97-98% success rate.  Also, always better to ask us than read online.

Q: I am concerned about rejection – I read so many stories online
A: Well, not with DALK.  You have to almost try to get rejection with DALK for it to happen.    You’ll see studies that show 5-7% rejection rate, but the numbers are affected by non-compliant patients.  With a healthy eye, and a compliant patient, we’re looking at less than 3%.

Q: Could you tell me about graft lifetime with DALK and PK?
A: With DALK, you should be good for life.  If we perforate, and convert to PK, the lifespan can be 15-20 years.   Your steepness and scarring mean the odds are probably 70-80% of us being able to successfully complete a DALK.  (postscript 3/17/11:   DALK successful – but barely – thanks to Dr. Holland’s skill, we did not convert to PK) As young as you are, you’d expect to have a second graft if we do PK.  With a PK, 70% of the epithelial cells are lost in the first 5 years.   With a DALK, you’ll lose around 10-11% of the cells in the first year, and then it stabilizes.  The vision is the same with both.  You would expect to have another PK at 60 years old or so – and the rejection rate would be higher.

Q: What’s going on with artificial corneas – by the time I’d need a second PK?
A: The problems with these are pretty significant, especially considering the success of normal grafting.  Then news keeps talking about them, but the success rate of donor corneas just makes it a no-brainer.   They have way more glaucoma, way more infections, etc.   The eligible cornea donors is so much greater than the current donation rate – and we use corneas up to age 75 in the USA (Australia even older.)   For DALK, the age of the donor doesn’t really matter.

Q: Do you order your tissue “PK ready?”
A: Yes, in every case.  (he was impressed that I even know what this meant.)

Q: If I have a problem at home (1:15 hours away) would I rush up here or get with someone in Lexington?
A: I know many of the guys down there, but most likely you’d just come in the next day.

Q: BIKING and surgery – I bike commute – will I be able to?
A: You’ll want to give this a week or two, you’ll want to protect your eyes really well.

Q: What about post-op astigmatism?
A: We always try to avoid it, but there will be astigmatism with a new cornea.  It’s impossible to get the donor cornea perfectly positioned.    For you,  refractive surgery will be the likely best option to finalize that vision improvement.

Q: How many DALKs have you done?   (dear reader, do not forget to ask this question.)
A: We’ve been doing it routinely for around three years, and I do over 200 grafts per year – 60-70 are DALKs.   (note:  This is a LOT of DALKs)

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Posted by on February 5, 2011 in Dr. Visits, Pre Surgery, Surgery-Story


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Keratoconus Consultation #2: Dr. Edward Holland – Corneal Specialist

I just finished my second informational meeting with Dr. Holland and must say it was excellent.  I cannot begin to describe the differences in the staff between the Corneal Surgeons’ staffs between Lexington and the Northern KY team.  They are more professional, friendlier, and more knowledgeable at every step of the way.  I am not going to call out the Lexington surgeons by name here, I’ve no intent to stir things up, but if you’re in the area and needing Corneal work, you owe it to yourself to visit more than one.

Off to Edgewood.

After “working” half of a day in Lexington, I grabbed the GPS and an audiobook and made the 1:15 drive to Edgewood, KY (essentially a suburb of Cincinnati on the Kentucky side of the river.)  After a yummy lunch at Panera and a few minutes checking email on my laptop, I went to the office.  I saved their office as a “Favorite” on the GPS because I have a feeling I’ll be coming here a few times!

Checking in was the usual – insurance card, verifying contact information, etc. at the desk went quickly and I noticed that the waiting room was full of people.  I also noticed that the average age of people there was well, well older than me – possibly by 25 years or more!   I sat down to read my RSS feeds and noticed that they had a very strong public WIFI for us.  Nice!  I barely got the first one on the screen before they called my name .  I felt mildly guilty, like you do in the “Fast Pass” line at Disney… until I realized that the other patients were there to see the cataract specialist, not the cornea doctor.

Feelings During the Visit

I realized as I walked to the back rooms that my anxiety about today had turned into a sort of strange excitement.  Still concern, but I felt like I was doing the right thing and taking steps to make life better – not only for me, but for my family who has to deal with my grumpiness when my eyes are hurting.  Dr. Holland’s reputation and the staff’s treatment bolstered this feeling.

Dialated Pupil - Kerataconus

Staff Knowledge about Keratoconus is Critical

I sat and spoke with a technician, who asked why I was there – did a basic vision test, including a pin-hole check.  .  I quickly established a great rapport with her and realized that she was not only smart about corneas, but it seemed more informed than the doctors I’d met about my condition earlier in Lexington.  She knew a ton about the transplant – having sat in on many operations, including the DALK procedures.  I was able to get a whole different perspective on the surgical process, etc. from her.   She also wanted to do a topography – and I told her my cone was too steep for the equipment, but we did it anyway.   Sure enough, the computer choked on my data as usual.  I’ve not had a successful topography since 2003… the equipment just isn’t able to help after a certain point.

My eye pressure was checked and they dilated my eye to examine the retina and optic nerve.  Doing it only in my left eye made me look kinda cyborg-like, and my daughter got a kick out of it.   All was golden – my eye is very healthy.  Except for that damn cornea.

Find a Great  Cornea Specialist… even if you have to drive or fly there!  Go to someone who does 50 or more grafts annually, preferably a mix of DALK and PK who has surrounded themselves with knowledgeable technicians and staff.  Your eyes are your window on the world – this is not the time to compromise.

I also ended up talking to a good, retina-surgeon friend on my front porch last year  – and she made quite an impression with her recommendations… “don’t compromise when it comes to cornea surgery, period.”  So I’ve learned a lot.

Bottom Line

If you have Keratoconus, and feel that the Doctor is treating you like the rest of his patients or that the technicians don’t understand the disease due to the “rarity” you owe it to yourself to find another expert, even if you have to drive or fly

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Posted by on February 3, 2011 in Dr. Visits, Pre Surgery, Surgery-Story


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