Scleral Lens Fitting Experience - In progress!

[Fella65]

I'm in the process of getting fitted for a Scleral lens on my left eye and I thought I'd document my experience on getting these lenses fit in this thread in the hopes that others might find it useful. Please let me know if you have any questions and I will try and answer them

My left eye had CXL performed on it on July 2nd of this year (see separate post) and my surgeon said I can go ahead and get a lens fitted on it. We are waiting to see about getting my transplanted right eye fitted after I have a LASIK enhancement surgery on it in Feb 2013.

Here in the US scleral lenses seem to be becoming much more of a go to solution for harder to fit eyes. In fact Boston, a maker of scleral lenses among others, has several centers around the country where patients go for five consecutive days to have custom lenses made and fitted for them. There is one of these centers an hour away from my home.

However, I'm opting to stay with the doctor who has been working with my eyes for many years. His office has more or less all the same technology as the Boston centers with the exception that they send out to a lab to get the lenses made, and they are not locked into only using Boston lenses. They also have a full history of my eyes, and they were recommended to me many years ago by one of the top corneal specialists in the country

I went for an initial fitting appointment on Nov 14th. After a brief exam, the first order of business was to take a topography of my eye in order to select an initial lens from a diagnostic set. This only took a few minutes.

The next step was to get the selected lens inserted into my eye. The doctor attached a plunger like device to the lens and filled it with what I assume was a saline solution. It then looked as if he dipped a strip of fluorescein into the solution held in the lens. I was then instructed to bend my head forward and hold open my lower lid open while he popped in the lens. I have to say it felt quite comfortable in the eye.

Next up was a look under the slit lamp. In his opinion the fit looked good meaning the lens cleared the cornea and the limbus and was sitting on the sclera.

To be sure we went over to this special machine into which I had to peer while he clicked away on a keyboard and manipulated a mouse. After a few seconds he invited me around to his side of the machine and had me look at a monitor. He explained that what I was seeing was a side view of the lens, the tear film, and finally my cornea. He then took the mouse and with two clicks measured the depth of the tear film between the base of the lens and my cornea. It was 160 microns. Amazing what they can do these days!

Apparently, they like to see over 200 microns of tear fluid as during the course of the day some amount (I think he said up 100 microns) is lost in wear.

So it was back to the fitting room to try another lens. First order of business was to get the lens out of my eye. This involved the doctor taking the plunger device, attaching it to a corner of the lens and popping it out. Not sure I fancy doing that myself. I picture my cornea coming out with with lens. There has to be a better way!

New lens selected, we went through head forward, lower eyelid down, plunger routine and back to the fancy machine.

This time I was up to 260 microns of tear film between the lens and my cornea. A little more than they like, but close. My doctor said he would slightly adjust the lens steepness to reduce tear volume a few tens of microns. After a further check under the slit lamp for fit, I was told that things looked good.

Next it was time for an over-refraction. That is getting some power on the lens to see what kind of vision I could get. So we did that usual refraction dance: "Which looks better A or B.... 1 or 2" etc etc. I got to 20/20, and I could swear I could see some of the 20/15 line - I could have cried. Best of all the vision was crisp You all probably know what I mean. It is one of my frustrations with the whole Snellen eye chart model. It doesn't take into account quality of vision i.e. 20/40 through a distorted sheet of glass is different than 20/40 through a sparking clean sheet of glass. Anyway I digress in my rant!

I was told the lens could take up to two weeks to arrive from the lab, but that it would likely be quicker. This is an area where the Boston center shines in that they can make the lenses on site pretty much right away, hence they can compress the whole fit and training experience into 5 days

One bit of good news I got was that the lenses would be covered under my health insurance as they are a medical necessity. That saved me about 1300USD!!

Today I received a phone call that my lens has arrived. This was quicker than I expected especially since we had our Thanksgiving holiday here. I have an appointment scheduled for Wednesday to try the new lens out.

After picking up my lens on Wednesday and having the fit checked, the plan is that I will wear the lens for at least six hours on Thursday and then visit the doctor in the late afternoon. The reason for this is that they want to see how the lens is sitting on the sclera. Apparently, unlike the cornea the sclera is not a hard surface - Think of it more as a sandy beach. Moreover the sclera on some eyes will be softer than on other eyes - Just like the sand is softer on some beaches than others. So it is important to see how the lens is interacting with the sclera. For example, is it sinking in too much and causing an impingement? If so then fitting parameters on the lens will be tweaked so that it "digs" less into the sclera. I think there are some other parameters that they are looking at, but I can't remember them.

I'm cautiously hopeful for this lens to work. However, I've had so many complications and setbacks that I dare not get my hopes up too high. I've had the horrible experience before of first getting a lens put in my eye that gave me great vision and initially felt great, only to have it be unworkable after wear.

I could really use all of your prayers and good wishes!

I will provide an update to this thread once I pick up the lens on Wednesday.

[Anne Klepacz]

You certainly have our good wishes! And many thanks for your detailed description of being fitted for scleral lenses which I'm sure will be very useful for people here considering these lenses. As in the States, they're used in the UK for corneas that are difficult to fit and we have quite a few members who find them really comfortable (after the initial shock of dealing with such a large lens!) And I couldn't agree more on the inadequacies of the Snellen chart in judging KC vision. The fact that some people can read the 4th or 5th line down doesn't mean a lot if the letters are blurred, have ghosting and are grey rather than black. So it's great that you're getting crisp vision. All the best for the next appointment.
Anne

[Fella65]

Here's an update on my scleral lens experience:

I went to the doctor's today to pick up my new lens. The process was quite smooth and simple. First up was instruction on inserting and removing the scleral lens using a couple of different plungers. One is a big orange plunger for inserting the lens, and the other is a small white plunger for removing the lens. I was a little nervous about using plunger to remove the lens, but it turned out to be a fairly simple exercise: You stick the plunger on the lower edge of lens and tilt it out of the eye. I think I will be able to get adept at it fairly quickly, but I might also try to work without the plungers.

After I had put the lens in my eye, the doctor inspected the fit under a slit lamp to make sure that things looked good. Fortunately they did, and so I was sent on my way.

My instructions are to wear the lens at least six hours tomorrow before my appointment in the late afternoon. The goal is to see how the lens is sitting on the sclera. As I mentioned in my first post, the sclera tends to be more like a sandy beach rather than a firm surface, with different scleras having different firmness. If it looks like the lens is sinking too much and impinging, then the doctor will adjust the lens parameter for a better fit.

So how does the lens feel and how is my vision?

I have had the lens in about 3 1/2 hours (I'm about to take it out), and I will say it is quite comfortable, but it's not perfect. I have previously worn RGP lenses for many years, and there was a long period of time when I didn't even know the lens was in my eye. In this case I am aware on it being in my eye, but it is less of a sensation of a lens while I am blinking - the kind of sensation that many traditional RGP lens wearers have. It's actually quite difficult to describe how it is feeling... It's almost as if my cornea feels cool or exposed to air - again not a great description.

Vision on the Snellen chart was 20/20 in the office. In fact when I first put in the lens in I felt a little dizzy, off balance, and even slightly nauseous for a minute or two. Everything was just so sharp and in focus - almost like a picture with too much contrast; however, my brain adjusted after a few minutes, and I have to say I had forgotten at how clear and in focus the world really is.

This evening I am noticing some haze, as well as halos around lights, but I get those with my glasses and I think it might be part of the CXL procedure. The halos do seem more pronounced with the lens. Either this is because I'm seeing better, or it might be due to the lens fit. I'll report it to the doctor tomorrow.

I am very cautiously optimistic; however, as I said previously, I am not getting my hopes up until I have worn the lenses successfully for a while.

I'll be back with another update post appointment tomorrow

[Fella65]

I had a 5:40pm appointment today, so I put in my lens at around 11:00am to make sure I got at least six hours of wear in.

About two hours into wear, I started noticing a bit of a haze. So I took out the lens cleaned it and popped it back it. No luck! Still had haze. In addition, while the lens was extremely comfortable initially, I started to get the feeling that I described yesterday. After thinking about it some more, I would describe it as the feeling you get if you stare at the computer screen too long, then sit back and close your eyes. For me it's a slight burning sensation - Very mild but present. I had this sensation all day. Aside from the above, vision was excellent.

It gets dark here around 5:00pm and I definitely noticed the haze more in the dark. I also saw nice big haloes around lights along with the starbursting that I've been getting post CXL. It was kind of like driving in a light fog and seeing the glow around car lights.

I got to the doctor and described what I was experiencing. The first thing he did was stain my eye, then he took to me to the fancy machine that can measure the tear film under the lens (see my first post). There was still over 240 microns of fluid there - more than they expected.

It was when he looked under the slit lamp that the trouble surfaced. First off he noticed stromal haze. He felt it was more pronounced than he had noticed previously. He also though he saw some aberration on my cornea about the 4 O'Clock position (from his sitting position across from me). He also said that my eye was quite dry. So we popped out the lens so he could get a closer look and make sure that the aberration was actually on my cornea and not the lens.

It turned out that my epithelium was slightly compromised at the location he observed - nothing major, but he put me on antibiotic drops right away as a precaution against infection. He also put me on Lotemax twice a day to see if we can get the haze under control. I should add that I am on an FML twice a day regimen from my surgeon to combat post CXL haze. The Lotemax is in addition to the FML. We also took some pictures of my eye so we could have a reference point.

The doctor's current theory is that the tear film may be too thick at 240 microns and that as a result I may not be getting enough oxygen to the cornea even thought the contact lens material is highly permeable. I'm not sure how plausible this is, as I would expect more edema versus hazing, but I'm not a doctor and CXL is also in play here, so I'll stop speculating!

I'm scheduled back in on Monday afternoon to see if things have settled down. If they have, we will try a lens that will take the tear film down to 160 microns and give that a go. Part of me is thinking that perhaps I will leave well enough alone right now and wait till I get past my 6 month post-CXL visit with the surgeon before continuing down the contact lens path. Though the surgeon did say it was fine for me to get fitted.

I should add that I have had my lens out for about four hours now, and I feel the haze has more or less gone. At least I don't notice any haloes around lights and things look a lot clearer. So I think it is definitely the lens that is causing the problem. It may be that I'm just not compatible with the scleral lens, but we will see.

As I said in my prior posts, I have kept my hopes in check. Too many times I have gotten them all up, only to have them dashed by this disease. Still, I shan't give up trying!

Unless something untoward happens, I will provide another update after my visit to the doctor next Monday. Hopefully, folks are getting some use out of reading about my journey.

[Fella65]

I was back at the doctor's today. Everything looked back to normal thankfully!

Apparently after a lot of discussion and consultation, the powers that be have concluded that the reason there were infiltrates in my eye was most likely due to an immune response because of a dirty lens. So the plan is for me to thoroughly clean the lens tonight and wear it for 2-4 hours tomorrow before coming in for a checkup.

And so the dirty lens theory held up until I casually explained to the doctor the process I had used to clean and insert my lens. Seems like I put the wrong solution in lens before inserting it in my eye. Seems like the technician gave me an erroneous copy of the wear and care instructions. In the words of Homer Simpson: Doh!

I was meant to put saline into the lens prior to insertion; instead I had put in the conditioning/cleaning solution. Now there is no harm in the conditioning solution being used when using standard corneal RGP lenses, but in the case of scleral lenses where there is very little tear exchange this is not a good thing at all. It seems to explain the slight burning feeling and immune response I had.

So tomorrow ill try again with saline solution prior to inserting the lens in my eye and I will go back in for another checkup for reaction as well as fit and finish.

The saga continues... Stay tuned for the next update tomorrow

[Fella65]

Today I put my lens in around 10:30am - This time using saline solution instead of the conditioning solution! I immediately felt a huge difference: No burning/stinging sensation for starters. In addition, I didn't notice any fogging after about an hour or two of wear.

My doctor's appointment was at 2:20pm, so this gave me about 4 hours of wear before seeing him. After a check-up under the slit lamp, the doctor said he didn't see any of the infiltrates or cloudiness that he had seen the other day. I could also just about see all of the 20/15 line on the Snellen chart so that was really good. I have to say vision was a lot crisper today with the lens in. I should add that they were also trying out this new hand-held machine that measures tear osmosis. This can apparently tell them if the tears are evaporating too rapidly i.e. if you have dry eye. Mine were within normal parameters though my right eye was dryer than my left one. I'm not surprised by this as it is the one in which I have a graft and several follow-on surgeries including LASIK.

As far as lens fit goes, a little lens tightness was observed by the doctor, and I can attest that I was having a little lens awareness - particularly at around the 9 O'Clock position. This was explained to me as being partially due to my sclera not being very soft and the lens not sinking much. I was also put under the fancy shmancy tear film detector machine that announced that I had 206 microns of tear film. The doctor felt he could reduce this closer to 120-150 microns to get even more oxygen to the cornea. He is going to order a lens with new parameters for me to try.

I should add that a cool thing about the tear film measuring machine is that it can actually look down all the way to the endothelium so we could compare the image of my cornea from a few days ago with today. It's really interesting seeing the distinct layers in the cornea. The epithelial swelling I had the other day was clearly visible even to my untrained eye when comparing the image from today with the one taken a few days ago.

I am to wear the lens again all day tomorrow, and go back for a checkup at 5:40pm to see where things stand. Stay tuned for an update

P.S. Happy to answer any questions folks may have about my experience with CXL, PK, Astigmatic Keratotomy, LASIK in a grafted eye, and Scleral lenses

[Fella65]

Here is today's update:

I put the lens in my eye at around 10:45am - a bit later than I had hoped, but I got distracted and almost forgot to put it in!

The lens experience today was good. No burning or stinging and no cloudiness. Periodically throughout the day I would become a little lens aware, mostly around the 9 - 10 O'Clock area of my eye. At other times, I would forget I had the lens in.

My appointment was at 5:40pm, so I drove over to the doctor's office at around 5:20pm. It was already dark, and the star bursting and haloing I had experienced the first day (due now I'm convinced to the wrong solution being in lens) were gone. I should say, that I had some mild haloes around street lamps, but that could be due to the fact that it was misting quite a bit. However, no haloes around the tail lights of the cars in front of me on the freeway (motorway). I also add I have some haloing and star bursting post CXL, so that may be all I was seeing

The first thing the doctor did at the office was take a look at the lens under a slit lamp - actually I have two of them working on me right now. They both said that things looked very good. There was some mild lens impingement at the 10 O'Clock and 4 O'Clock position which they will fix by relaxing some lens parameter or other. That explained the lens sensation I was getting during the day.

Next it was another visit with the fancy tear/cornea measuring machine. The doctor did a check all across my cornea. For the most part I was right at 200-205 microns of tear film. At the cone I was at about 160 microns which is just about right since my cone is 49 microns tall. He said he felt he could reduce the film a little more to get closer to the 100 micron mark. The goal is to get as much oxygen to the cornea as possible with a good fit.

As far as vision goes, I'm seeing between 20/15 - 20/20. The vision quality is very good. I really can't quite believe it. On the whining front, I'm having trouble with near objects, but that is due the fact that I'm an old bug**r, so a pair of reading glasses fixes that.

The longer term solution is to get a multifocal prescription for the scleral lenses, so that I can see both near and distance. This will happen after I'm fitted with a lens in my right eye. Apparently multifocals in one lens doesn't work so well. We are waiting for this pending a scheduled LASIK enhancement that I will likely have in February. I'm actually now wondering if I should even risk having the surgery or if I should just get a lens fit on the right eye. I have a consult with my surgeon for both a 6 month CXL follow-up for my left eye and an enhancement LASIK eye consult at the end of January, so I will discuss the risk/benefit with him then.

My next appointment is scheduled for Monday at 5:40pm. Between now and then I have been instructed to go ahead and wear the lens all day, and to immediately go to the office if I notice anything untoward.

I have to admit I'm waiting for the other shoe to drop. Like many, I've suffered complications due to KC - It's just so unpredictable. So I'm actually going to have good vision. I suppose I'm afraid to be hopeful, because I don't want to have to suffer to a massive disappointment.

Anyway, another update on Monday unless something untoward happens between now and then

[Fella65]

Sorry for the delay in the update. On Monday evening I went to see the doctor for a follow-up visit for my scleral lens. Since my last appointment last Wednesday, my directions were to wear the lens for as long as I felt comfortable each day. They wanted to see how my eye would handle longer duration wear over multiple days.

Over the past several days my vision has been very good with my new lens. The following is a break down of lens wear time and comfort by day until Monday:

* Thursday: 11hrs 45mins - The lens was comfortable almost all day. Started having some lens awareness around 11hr 30min of wear time. Nothing major, just suddenly aware that I had a lens in my eye

* Friday: 7hrs 30mins - The lens was comfortable almost all day, though not as comfortable as yesterday. Lens awareness at around 7hrs. This was more of a sensation of tightness

* Saturday: 12hrs 30mins - The lens was comfortable all day

* Sunday: 12hrs 30mins - The lens was comfortable all day. However, I had a foreign body sensation in eye sensation upon lens removal (this was later explained as being due to the slight impingement this particular lens is causing)

Once I arrived at the doctor's I followed the now standard routine of examination under the slit lamp followed by a measuring tear film measurement. I discovered that since the tear film measuring machine actually shows the structure of the cornea and the lens sitting on it, the doctor can actually see how the edge of the lens is landing on the sclera and make adjustments accordingly. It was interesting to see how the lens landed at a slightly steeper angle in the areas of impingement.

Overall, the doctor was very happy with how things looked, and is going to make a couple of minor adjustments to get to the optimal fit. I will pick up the lens and try it when it is ready in a week or so. I'm thus far thrilled with the results of this lens, and I'm keeping my fingers crossed that it will work for me in the long run.

I think this is a very exciting technology for KC patients. The comfort of a well fitted scleral is for me far superior to what I achieved with a standard corneal RGP lens. Particularly, I like the fact that it is almost impossible to get grit under the lens. As far as putting in and taking out the lens goes, I have to say that I don't find it problematic. I had been wearing contact lenses for over twenty years, so I am sure that has helped. I basically use a large orange plunger to get the lens in my eye (the lens actually just balances on the end of the plunger), as I find it easy to look at the orange color to position the lens. As far as removing it goes, I basically put a couple of lubricating drops in my eye, look up and gently break the seal on the lens towards the bottom of my eye by very gently pressing my lower eyelid against the sclera below the lens. It pops right out!

This will be my last post on my lens fitting experience unless something untoward happens, in which case I will write an update detailing what is going on

Hopefully, this has been useful to at least some of you who are thinking or getting scleral lenses, or who will be fitted with them in the future

[Anne Klepacz]

Wishing you continued success with your scleral lenses, Fella. And many thanks for your story of getting used to a different type of lens, which I'm sure will encourage others.
Anne