All of us Vs Keratoconus

Members Login
Chatbox
Please log in to join the chat!
Post Info TOPIC: My CXL + T-PRK experience in Canada


Veteran Member

Status: Offline
Posts: 59
Date: Fri Jan 24 9:48 PM, 2014
My CXL + T-PRK experience in Canada
Permalink   
 


Hi everyone.  I have keratoconus, and a week ago today, I underwent corneal crosslinking and topographical PRK, and I thought I’d share my experiences so far.  I’m hoping I’ll be able to continue logging my experiences over time.  I found people’s experiences on this forum to be the most useful resource I ever found on the internet as far as keratoconus goes, so if my experience can help anyone, then I’m happy to help.  I’ll also say that if you’re reading this, and you have any questions at all, you can feel free to email me – jgcpalmer *at* gmail.com, and I’d be happy to share.

 

PRE-DIAGONISIS

A few years ago, I started noticing some strange “ghosting” effects in my vision.  I’d often notice a very thin horizontal line going through the words I was reading.  I didn’t think too much of it at first (when really, I should have visited an optometrist right away.)  I had never been to an optometrist before (even as a kid, as far as I could remember) and didn’t really feel like going to one now.  However, as things got worse, it became clear that my vision was deteriorating.  So I booked myself for an eye checkup at the optometrist office next to the local Lens Crafters store.  The optometrist told me I had an astigmatism.  She told me that my eyes had been like this my whole life, but because I was older (early 30s) my brain wasn’t as good as correcting for it.  This didn’t sound right to me, but I had no idea what other possibilities there were so I took her at her word.  It was a frustrating experience settling on a prescription (when asked “What’s better, number 1 or number 2”, they always just seemed a different kind of fuzzy to me.)  Eventually we settled on a prescription, and I got a pair of glasses, but they did so little to help, that after a month I stopped wearing them.

2 years later (i.e. when my work benefits kicked in and would cover some of the cost of another pair of glasses), I went back to the optometrist for an eye checkup.  My eyes had gotten worse, and I had started wearing the glasses a few months before the appointment, to get me used to them, so switching up to a stronger prescription wouldn’t be too big of a deal.  I had booked myself in with a different doctor this time, purely by accident – I booked online and had forgotten my doctor’s name from last time.  This was probably a good thing, because this time the optometrist was pretty confident right away that something was wrong.  He looked concerned and said, “Your eyes are a different shape than the last time you were in.”  He said he thought I had some sort of disease where my cornea was thining – I forgot the name of what he said the moment he said it, he said it so quickly.  We tried to find a better prescription, but nothing worked better than what I already had (which didn’t do much.)  He referred me to the University of Waterloo’s contact lens clinic to confirm the diagnosis.

 

DIAGNOSIS

Within a week or two I was at the University of Waterloo’s contact lens clinic.  There, they used a Pentacam to scan my eyes.  It’s a pretty simple procedure – you stare into the device and there’s a short, thick blue vertical line with a little white donut in the middle.  You stare at the donut and the blue line spins around, scanning your eye.  The optometrist came in, and confirmed the diagnosis, that I had keratoconus (this time he wrote it down for me so I didn’t forget.)  He explained what keratoconus is, and said that most patients use rigid contact lenses to correct their vision, but since I was referred by another optometrist, he wouldn’t get into details and would let my own doctor do that.  The optometrist left, and while I was paying the bill, I asked the technician who had scanned my eyes if there were any surgical options for keratoconus.  She said, “No, not really.  Well, there is this thing where they put riboflavin drops in your eyes to try to slow down the process, but that’s about it.”  This was disheartening, and in retrospect, pretty upsetting that they didn’t know all the available options out there.  I have a feeling that many keratoconus patients do not get the best treatment for their situation, simply because they never find out what the options are.

While waiting to hear back from my optometrist for a follow-up appointment, I mentioned the diagnosis to a friend of mine.  Within a few minutes, he had pulled up the LasikMD website for me.  LasikMD is chain of opthomology centres that specialize in laser eye treatment.  On this site is where I first learned about the possibility of CXL + T-PRK as a treatment.  They weren’t promising any miracles on the website, but at the very least it sounded like I wouldn’t have to wear rigid contact lenses if I got the treatment.  Just the idea of rigid contact lenses freaked me out.

A couple weeks later, I was in the optometrist’s office for my follow-up appointment.  He explained a bit more about keratoconus, which was all information I had read up on by this point.  He asked if I had thought about how I wanted to move forward.  I mentioned the CXL + T-PRK option, and he replied that he was going to bring up that option.  He told me that if he were me, that’s exactly what he would have done as well.  He said my minimum cornea thickness was pretty good, and that I should get pretty decent results from it.  He warned me that he’d had 3 other patients undergo this treatment, and only one of them didn’t need glasses anymore afterwards.  His warning was more of an encouragement for me, as that was much better results than I was expecting from reading the LasikMD website.  He said he didn’t think the local LasicMD clinici did both CXL and T-PRK, so instead he referred me to the Bochner Institute in Toronto.


SURGICAL CONSULTATION

I got a call the very next day, and within a couple weeks (early December, 2013) I had an appointment at their downtown Toronto building.  We drove to Toronto and then took the subway downtown, the total trip from Kitchener at rush hour taking a little over 2 hours.  Here, they did the same scans with a Pentacam that I had done at the U of W.  Then I met with Peter, their surgical consultant.  He again explained what I had and what that meant.  He explained that a regular cornea is 540 microns, to do CXL required 400 microns, and to do T-PRK required 430 microns.  My corneas were at 470 microns, so I had quite a bit of cornea to work with.  I mentioned that I had heard some people don’t even need glasses after the procedure, and he wouldn’t comment on that.  I’ve read on here how some doctors will tell you just how good they think they can get your vision – it seems here in Canada, they are a bit more conservative, and nobody’s willing to really say anything about just how good they think your vision will be after the treatment. 

We talked a bit about the cost of the surgery.  In Canada, although we have “universal healthcare”, many things aren’t covered, and unfortunately laser eye surgery is still not covered at all in my province of Ontario, even in cases like this where it is treating a real medical condition.  The treatment is under review right now, and in future years may be covered in certain circumstances, but for the moment, this was going to cost me over $5000 for the treatment.  It’s a lot of money, but for your eyes, it’s a real investment.  I told him I wanted the surgery, and when he asked me when, I told him as soon as he could book me in.  He booked me in for Jan 17th, 2014, and I left the office, already starting to feel a bit nervous about the whole thing.

Not too long after this appointment, I found this site, and started reading the experiences on it.  It was both encouraging and disheartening – it seemed that most people had a long, frustrating recovery, but when they finally reached the light at the end of the tunnel, their vision was greatly improved.  As the days let up to the surgery, I got more nervous about it, sometimes finding myself imaging what it would be like to have my vision more or less taken away for an extended period of time.  At the same time, I continued to notice my vision deteriorate.  Peter at Bochner had told me I was barely legal to drive, and I was starting to finally feel it.  Driving in the last few weeks before my surgery was starting to be a stressful experience. 

The day before my surgery, I checked my vision on an eye chart I downloaded off the internet.  My left eye’s vision was 20/70 and my right eye had 20/40.  (With glasses, my left eye could see 20/60, and my right eye was the same (20/40), so here it was confirmed my glasses were doing next to nothing.)

 

DAY 0:  PRE-SURGERY

My appointment at Bochner was for 11am (with the surgery happenint at 12pm).  My wife and I decided we would leave around 8am, aiming to get to there by around 10.  If traffic slowed us down, we’d still get there on time, but if it didn’t, then I’d have some time to get some food in me before the procedure that was taking place right over lunch time.  Moments before we got out the door, I got a call from my dad letting me know that there was an accident involving a transport truck on the highway right around where I’d be getting on.  It was lucky we got the call – we made a detour and got on the highway at a later point, and we made pretty good time, arriving at around 10:20.  This gave us enough time to grab a bite to eat.  Right around the corner from Bochner is a Starbucks, and we had a quick meal before hading into the Bochner Institute.

I had only been there a couple minutes and a technician called for me, and we did a couple tests.  First was the Oculyzer, which from my perspective, was just like a Pentocam.  I asked the technician what the difference was between an oculyzer and a pentacam, and all she could tell me was, “The oculyzer is hooked up to the computers downstairs for your surgery.”  So I guess she didn’t really know the technical details of the equipment, which was a bit disappointing, but as long as she knew how to use it, that’s all that matters.  She took 8 scans of each eye.  By time she was done I was really seeing spots, and it was a bit disorienting, but only for a minute or two.  Next was an autorefractor, where they measured what my prescription was going into the surgery, I suppose so that they could compare in several months after my eyes have settled.  After that, the technician brought me a pouch, that had 5 different types of eye drops, and 3 different types of pills.  She explained them all quickly and I forgot most of what she said, but luckily it was all written down on a piece of paper she put in the pouch.  She asked me if I wanted to take a valium before the surgery, and I gave her an enthusiastic “Yes”.  Next, Dr. Raymond Stein, my surgeon, came in to say hello and to do a quick examination.  This was the first time I met him.  He didn’t take too long, but just gave a quick description of the surgery he was doing, examined my eyes, and then sent me on my way.  I sat down in the waiting room and took the valium pill they had given me.

A few minutes later, a woman came and took my wife and me downstairs.  This is where we did the fun part – paying for the procedure.  She asked me if the valium had started to work yet.  I told her I’d never had one and I wasn’t sure how I would know.  She laughed and said she’d never had one either, but that she thought I’d feel a bit tipsy.  I didn’t feel tipsy yet, but my stomach was a little less in knots than it was before.

After that, we sat down in the surgical waiting room.  At Bochner, there is a glass wall between this final waiting room and the operating room, and while I waited I was able to see two patients ahead of me have Lasik done.  I actually enjoyed getting a 3rd person view of the surgery before my 1st person experience happened – I became more interested than nervous about what was going to happen (although admittedly, the valium probably played a role in that as well.) 

 

DAY 0 - SURGERY

After the second Lasik patient, they called me in.  I layed down on a skinny bed, and someone behind me gently but firmly held my head.  After using a speculum to hold my eye open, they started by putting in anesthetic drops.  This was the worst part of the procedure, pain-wise.  They stung quite badly.  They put drops in 3 times.  The second time they only stung a little bit, and the third time, to my relief, I couldn’t feel them at all.  After that, the only pain I ever felt in the procedure was when they occasionally put in more anesthetic drops, and that was only when they hadn’t put in any for a while, and it still didn’t sting much. 

They did one eye start to finish at a time, starting with my right eye.  They used a brush to brush off my epithelium, and then they used what appeared to be tiny squeegees to clear excess liquid off my eye.  They had me look at a light above, and I believe there was a bit of lights flashing, etc., but not too much of a light show.  Then there was the smell of something burning (presumably my cornea) – it was faint but noticeable.  And that was it, for that eye.  When they did the left eye, they told me my cornea was thinner and they had to use a different method for removing the epithelium.  This was a little rotary tool, that kind of looked like what dentists use to polish your teeth, or a very tiny version of an electric toothbrush.  Other than that, the procedure was the same, and I was probably only lying on the bed in that room for about 15 minutes or so and it was done.

They put contact lens bandages in my eyes and told me to get up, and that my vision would be a bit blurry.  To my surprise, it wasn’t actually too bad, and I could read the clock on the wall.  I stepped out of the room, and then they took a picture of me with Dr. Stein.  I’m sure I look pretty stunned in the picture!  They then introduced me to the technician that would do the corneal cross-linking – I think his name was Mathias, but I could be misremembering.  They took me up 3 flights of stairs to where the second half of the procedure would be done.  The valium had finally kicked in and I was pretty tipsy, and had to hold on tight to the railing the whole way up.

Once we got to the top of the stairs, he put me in another chair, laid me back, and removed the contact lens bandages.  Then he started putting in riboflavin drops in my eyes.  These drops are really yellow, and made everything look like I was looking through yellow sunglasses.  He put in the drops about every minute or so into each eye, and occasionally put in the anesthetic drops as well.  He also occasionally used this tiny probe, poking at my eyeballs in various places with them.  I asked them what this was for, and he told me he was measuring my corneal thickness.  After awhile, he told me that my right eye’s cornea was a little thin – it was 398 microns and they want at least 400 microns.  So he applied hypotonic to my eye and laid a little sponge on top of it.  This lasted for a few minutes.  He then took it off and remeasured my cornea, and said that it was now 431 microns.  Up until this point, I didn’t realize they were able to increase my cornea thickness that way.

After about a half an hour, it was time for the UVA light.  He asked me to stair up into a red light, and then it started flashing purple.  When it flashed purple, I couldn’t see anything but a bright purple kaleidoscope design.  This went on for 6 minutes in one eye, and then he switched to the other.  When this was done, he put back on my contact lens bandages, and I got up from the chair.  They took me downstairs back to the original waiting room, and gave me some solar shields (really they were just largish, very dark sunglasses.)

I waited for a few minutes, and then Dr. Stein examined me again, and said everything looked good and the procedure went really well.  He then gave me a box of chocolates with “Bochner” written on it, and he said, “It works better than Tylenol.”  And at that, everything was done and I was sent on my way.

 

DAY 0 – POST-SURGERY

My wife drove me home.  I was told that the anesthetic drops would wear off in an hour, but after the 1.5 hour drive home, I was still feeling fine.  Within another half hour or so, I started feeling a bit of discomfort in my eyes.  I was told once I started feeling something, I might want to take some pain medication, so I took the Tylenol-3 that they had given me.  As far as I could tell, it didn’t really do much, as within another half hour, my eyes were burning, like when you cut onions, only I’d say it was significantly worse.  I also became extremely light sensitive.  Even with my eyes closed, the lights off, and the curtains closed, any kind of slight light would cause pain.  I also needed to do the drops they had given me, and I needed help from my wife to do them, as my eyes didn’t want to open due to the light sensitivity.  A little later my wife asked if I wanted to try using the small cold compress they had given me, which I had forgotten about.  I tried it, and it helped a little bit, more than the pain medication, but overall, this first night was the worst part of this whole experience.  The pain started to subside a little bit around 10PM, and that’s when I decided to go to bed.  They had given me anesthetid drops to use right before bed, as well as a sleeping pill, and both worked well.  I fell asleep pretty quickly and had a good sleep.  I would recommend to anyone to schedule their surgery later in the day if possible, and within an hour or so of the surgery, take the pain medication, the sleeping pill, and the anesthetic drops and just go straight to bed – it’s best if you just sleep through this whole experience.

 

Day 1

I woke up with just mild discomfort in my eyes, and mild light sensitivity.  My vision still wasn’t too bad – pretty blurry in my left eye, but my right eye was still 20/40, about the same as before the surgery.  That morning I had a followup with my optometrist.  He examined me, and he was surprised I could see so well out of the right eye.  He reminded me how important it is to take all the eye drops at the right times, as it’s important for healing and it would be a terrible time to get an infection.  The eye drops I was taking were an anti-inflammatory, antibiotic, steroid, and artificial tears.  He also warned me that my vision would get worse over the next few days.

That evening I could tell my vision was starting to get worse.  But other than having the feeling sometimes that I had grit in my eyes, I was doing pretty well.

 

Day 4

The next few days, my vision got steadily worse.  We decided to go see a movie in the afternoon (“Her”, which was quite good) – we thought maybe with the bigger screen I could make out what was happening together.  The distance of the screen compensated for the largeness of the people on the screen, and it was pretty blurry.  That night my vision had gotten significantly worse, and on the eye chart I couldn’t see the 200 line (the giant “E” on the top) with either, or with both eyes.  I was now legally blind.  While I had been spending a lot of time with my eyes closed, listening to audiobooks or music, we watched a couple TV shows that night.  With all the ghosting, the people looked like they were from Picasso paintings.

 

Day 5

The next morning was the first time I’d seen improvement in my eyes.  My left eye (which was typically my worse eye) could now read the E at the top of the chart.  So I now had one eye with 20/200 vision.  That day was also the day my contact lenses came out.  My optometrist told me he wanted me to use the artificial tears more, but otherwise that was it.  He tested my vision and it was pretty poor and certainly couldn’t get much improvement with any kind of lenses.  My epithelium on both eyes had fully grown over now, and right in the middle, over my retinas, they now “heaped” where the growing cells had all met up.  This was really uncomfortable – every time I blinked I felt like my eyelids were sliding over a pimple on the centre of my eyeball.  My vision also got worse that night, to much worse than 20/200 – I had to get within 3 feet of the chart to read the giant “E”.  I also became more light sensitive again, but not as bad as before.

 

Day 6

The next daymy vision was still very bad, worse than 20/200.  All through the morning, it was also still painful to blink or close my eyes because of the “heap” of epithelium, but it smoothed out throughout the day, which I think just made my vision worse.  By the end of the day, my vision was still terrible, but I was much more comfortable.

 

Day 7

This is today as I’m writing this.  I had my first real improvement this morning when I got up.  My right eye was 20/100 and my left eye could just barely read the 20/70 line, which is almost where it was before the surgery.  With both eyes, and some patience letting my eyes adjust, I was able to read the 20/60 line.  This again got worse throughout the day, which seems to have become the norm, and right now in late afternoon, I’m at around 20/200 again.  However, this makes me very hopeful for the future.

 

So that is where I’m at right now!  If you have any comments or questions, please feel free to post them below.  I’ll try to update this every once and awhile with how I’m doing.



__________________


Veteran Member

Status: Offline
Posts: 59
Date: Mon Jan 27 1:49 PM, 2014
Permalink   
 

DAY 8

Biggest jump in vision this morning. While my right eye is still just 20/200, my left eye could read the 20/60 line, and could even make out a couple letters on the 20/50 line. That's even better than before the surgery. With all the ghosting, haze and blooming though, my overall vision is still pretty terrible.

For the whole first week of recovery, I pretty much just hibernated, staying at home. On this day, however, it was my son's friend's birthday party, and it was a bowling party, and I decided to go along. I even bowled, although I had to ask other people what pins I hit down! When I got home, I was completely exhausted and had to lie down. This is one of the most surprising things I have found about my recovery, is just how worn out I feel pretty much all the time. I'm not sure if this is from the healing, or from my eyes and brain straining to focus all day, but I have way less energy than I usually do.

DAY 9

Reading on the eye chart is the same, but there is noticibly less ghosting. Where before, if I looked at a small object against a blank background, I could count 9 total images, now I could only count 6 and they were closer together. As with previous days though, my vision is considerably worse by time I'm going to bed. I start each day being able to read the computer screen from about a foot away, but by bedtime, I almost have to press my nose against the screen to read it. I'm guessing that my eye muscles are making up for a lot of the shortcomings of my eyes, and they are worn out by the end of the day.

Day 10

For the first time, my right eye has actually improved, and I can read to the 20/60 line on the chart with my right eye. With all the ghosting, hazing, and blooming issues still present, my vision is still frustratingly bad, but it is encourging to see improvements each day, even if they are tiny.


__________________


Member

Status: Offline
Posts: 9
Date: Mon Jan 27 5:48 PM, 2014
Permalink   
 

Hello jgcpalmer. Your posts are giant ones, and I cannot read them, but I am interested to learn your visual acuity with nothing, with glasses and with contact lenses, before the surgery and now. And what kind of surgery? Maybe transplantation of cornea or not? Thank you.

__________________

Do you have keratoconus? Add me on facebook to discuss about our problem and about ... the development of technology - medicine - science. Konstantinos Kantoutsis. I am waiting for you.



Veteran Member

Status: Offline
Posts: 59
Date: Mon Jan 27 5:53 PM, 2014
Permalink   
 

Hi Konstantinos,

Before surgery (using an eye chart at home):

Without glasses:
Left Eye, 20/70
Right Eye, 20/40

With glasses:
Left Eye, 20/60
Right Eye, 20/40

I haven't worn contact lenses.

Now 10 days after the surgery, my vision fluctuates between 20/60 and 20/100, and is getting a little better each day.

I had corneal cross-linking and PRK done, no transplant.

Before surgery, my minimum cornea thickness was 470. After surgery, I know in my right eye it's 430, not sure about the left eye.



-- Edited by jgcpalmer on Monday 27th of January 2014 05:54:27 PM

__________________


Member

Status: Offline
Posts: 9
Date: Tue Jan 28 10:19 PM, 2014
Permalink   
 

Why you haven't tried contact lenses? They do not have important results or they are not convenient for you? What your doctors expect in your vision in the near and the far future?

The fact that the os minimum corneal thickness is so less after surgery it is good or not?

You did epi-off or epi-on?



-- Edited by Konstantinos on Tuesday 28th of January 2014 10:20:20 PM

__________________

Do you have keratoconus? Add me on facebook to discuss about our problem and about ... the development of technology - medicine - science. Konstantinos Kantoutsis. I am waiting for you.



Veteran Member

Status: Offline
Posts: 59
Date: Tue Jan 28 11:38 PM, 2014
Permalink   
 

I'm not a fan of the idea of using contact lenses, and contact lenses don't stop the progression. If you don't stop the progression, then later on I might need surgery, and the earlier you do it, the better the results.

Because I had PRK done as well, epi-on was not an option. The epithilium has to come off for PRK.

The corneal thickness is less after surgery because of the PRK - it slices off parts of the cornea. It's expected to be less, and anything above 400 microns is considered good.

My best corrected vision (i.e. how well I can see with glasses) is expected to improve dramatically. How well I'll be able to see without corrective lenses is still unsure. My optometrist has sent 3 people before me to get this treatment, and one of them didn't need any glasses at all 6 months after the surgery. So that's what I'm hoping for, but there is no guarantee.

__________________


Member

Status: Offline
Posts: 9
Date: Wed Jan 29 12:18 AM, 2014
Permalink   
 

Ok, but you know, sometimes it is not good to hurry. For example I had in my left eye 458 when I was 21 year old and now, 26 years old I have 444. My rhythm speed is slow, maybe it is expected to be less than 400, when I will be 41 years old, in 2029, when the computers and robots will be able to see better than humans, in 11 dimensions, not only in 3 (computer vision: en.wikipedia.org/wiki/Computer_vision), and maybe artificial eyes will be better than the real ones.

Tell me please what are the risks of your surgery (CXL-off and PRK). Are there risks? And tell me your age please.



-- Edited by Konstantinos on Wednesday 29th of January 2014 12:31:06 AM

__________________

Do you have keratoconus? Add me on facebook to discuss about our problem and about ... the development of technology - medicine - science. Konstantinos Kantoutsis. I am waiting for you.



Veteran Member

Status: Offline
Posts: 59
Date: Wed Jan 29 2:23 AM, 2014
Permalink   
 

Well, if they come out with robotic eyes, I'm sure they'll be able to replace mine just as easily as one that has not had CXL or PRK. smile

The minimum they will do PRK with is generally 430 microns, so if you wait too long, you may find that that is no longer a possible treatment for you. Also, the thicker your cornea, the more they can do with PRK, and the better your vision will be afterwards.

The risks of CXL and PRK are pretty slim. There's a slight risk that the CXL won't take, but in that rare (I think around 1% chance) case, it can be successfully redone. PRK is very low risk too. I think there is a chance of dry eyes being an issue in the long run, and I've read that things like hazing and starbursting used to sometimes not go away, but now that is incredibly rare.

I'm 34 years old. I have fairly mild Kerataconus it seems - if it started in my teens like it does with most people, than it is progressing quite slowly. However, I've noticed a pretty rapid decrease in vision of the past few years.

Have you attempted any kind of treatments with your Keratoconus? Or just contact lenses? If just contact lenses, what kind do you use, and what kind of vision do you whave with and without them?

As far as my surgery goes, my decision has already been made, and we really won't know for a few months just how successful it was. I am noticing improvemnts in my vision every day though and I am very hopeful.



-- Edited by jgcpalmer on Wednesday 29th of January 2014 02:25:41 AM

__________________
1 2 313  >  Last»  | Page of 13  sorted by
 
Quick Reply

Please log in to post quick replies.

Post to Digg Post to Del.icio.us

www.kcfreedom.org

Knowledge Works