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)