My eyes ran out of steam Thursday night before I could make translate & transfer my notes into blog form, so I wrote this up in dribs and drabs between sessions on Friday. On re-reading, I decided this particular session really deserved its own separate post, rather than tacking it onto the end of the last one as planned.
Long Term Scleral Lens Management
This was the highlight of Thursday (apart from great conversations with great doctors!). Every speaker in this session was speaking directly to things I personally care about a lot :)
First, Lynette Johns gave an overview of the issues, then Jennifer Harthan, Gloria Chiu and Karen DeLoss presented two case studies each. Incidentally, the first and third named doctors are two of my dry eye hearthrobs, real heroes in the eyes of the patient community.
Dr. Johns' part was dense and rich (this is an understatement). While there have been many amazing presentations here... Dr Johns (whom I've heard now three times in the course of the event) speaks directly to so many things that resonate for 'my' world and 'my' dry eye and scleral lens crowds that it's just really, really exciting hearing these things flagged and talked about.
I think the bottom line of what I mean is that this is a doctor who has profoundly learned:
- the fine art of collecting symptom data (in patient-speak, the things we're trying to tell them or don't know how to tell them or maybe don't even know that they need to know)...that is, listening, and learning over time the right question to ask, and continually refining what you're asking and how you're asking it, and
- the equally fine practice of seeking after the SCIENTIFIC value of symptoms, i.e. of what the patient tells them.
Not, of course, surprising, from a doctor who worked so long with Perry Rosenthal. As a matter of fact, it was while I was in the process of writing a tribute to Dr Rosenthal last year that I first articulated clearly to myself what this means and why it matters. Ever since then, visions for the process of collecting and analyzing and employing symptom data in the realm of dry eye has been taking clearer and clearer shape in my own mind as my personal dream & drive as a patient advocate.
But anyway, moving on to Dr Johns' presentation - which I'm recording here in great detail partly as an example of a Rolls Royce style scleral lens evaluation to inspire patients who may find it helpful to volunteer some of the information here that their doctor may not be quite sufficiently attuned yet to ask.
First, she talked about early indications of which scleral lens patient is going to be successful versus which is more likely to have some struggles. Here are some of the things she asks patients about routinely:
- Daily wearing time, but also...
- Comfortable wearing time
These are two different numbers for many of us. Then, for example...
- intermittent extreme discomfort after a couple of hours
...might indicate bubble trouble. I can attest to that, as in the past year I've been surprised - considering how many years I've worn sclerals - at my tendency to bubble problems that I'm not detecting at the time of insertion. (Sigh. Application.)
As an aside, she talked about the importance of how you find out symptom details from us patients: The what, the where, and the when. Interestingly, she emphasized the importance of relationship building through reassurance - that without a good enough relationship, patients may not be able to trust enough to report symptoms honestly. For example, patients who are in pain and desperate, who see the lens as their last option, want it to work and may be afraid of having lenses denied them.
More symptoms to find out:
- vision issues?
The WHEN is very important. Morning discomfort - too loose? bubble? End of day discomfort - compression? Impingement? After it comes off - soreness, achiness? If achy around the eye or the eye is tired - considering the possibility of compression. (Also noted the possibility that in a patient with very white eyes, compression can be overlooked.)
Then Dr Johns moved on to care and handling issues. Here, such emphasized the need to ask OPEN ENDED questions. Questions should cover:
- filling solutions, disinfection solutions, topical rewetting solutions (i.e. verifying that the correct things are being used... this is very important topic to me because we hear from so many people who struggle to retain the instructions they are given or don't have sufficient written instructions.
- problems with application; bubble identification
- possible concerns during removal - redness, discomfort, loud noises? And emphasized that removal issues should particularly be a red flag on corneal transplants patients. (Transplant related issues have been one of my biggest take-homes from this meeting as a whole, incidentally, because I hear from a lot of transplant patients at the dry eye shop that do not know the types of red flag issues that should be sending them back to their doctors.)
So that's all about the questions for the patients. I'll move more quickly through the rest of her talk, which was all about the examination part from the doctor's perspective.
Scleral lens evaluation (while in the eye):
- front surface - wetting defects? debris?
- vault - clearance? debris in the reservoir?
- scleral zone - compression? impingement? evidence of tear exchange with fluorescein?
- Dr should remove lens themselves to rule out possibility of suction (determined by feel)
"Naked eye" evaluation (after lens removal). Any signs of the following in the cornea:
- neovascularization (if so, depth, location, extent, activity)
Assess peripheral cornea/limbus without lens
Discussed issues like short and long term impingement; reaactive hyperemia; signs of conjunctival compression; compression indentation. Mentioned that she palpates as some signs may be more meaningful than others. Then the list went on and I stopped taking notes....
She wrapped up with a talk about follow-up scheduling and I tuned back in closely for this when she used the phrase "patients may flee the practice". The thing is - something this conference has filled in a gap for me on, actually, in my concerns about the calls and emails we get from patients with troubling signs and who are not taking those issues to their doctor - scleral lenses are more complicated and have different kinds of risks than other contacts, and patients NEED to be seen again - they really, really need to not just be wearing their lenses indefinitely without going back. (I'm reminded here too of the many of us with dry eye whose eyes always look like they're running a bit ragged - we ourselves may not see signs that need to be seen, if we're too used to our eyes feeling and looking like garbage a lot of the time).
Anyway, there are no guidelines on re-scheduling that would work for everyone, but she emphasized things like the potential need for minor adjustments, or even overhauls, but also (to my mind, crucially) re-instructioning for patients.
Next up, Jennifer Harthan presented two case reports:
Case #1 - 70yo Sjogrens patient
In my notes I just put "all the usual". By that I meant the whole bag of symptoms and the long list of prior treatments so many of the severer dry eye patients have been through... doctors may not realize how many have taste-tested everything going, but there are an awful lot out there. Anyway, this patient had filamentary keratitis and rheumatoid arthritis as well as Sjogrens and was wearing soft bandage lenses but experiencing a lot of mucous buildup.
She was successfully fitted with scleral lenses, but two challenges were noted - cloudines and fogging; and difficulty finding solutions. I just want to note here that mentioning brand names is verboten at these meetings in the scientific sessions. But, there's no gag on me, and we all know we're talking about LacriPure.
Anyway, Dr Harthan's tips ("clinical pearls") related to this patient were:
- the need to talk to patients about how they dose medications while using scleral lenses (i.e. Rx drops timing in relation to when the lenses go in, etc.)
- the need to assist patients with accessibility of solutions (hear, hear!) including stocking it in the practice for them if necessary.
Case #2 - Hydrops patient
This one will only be of interest, perhaps, to keratoconus patients reading it. For the patient she presented, it took 8 months for the hydrops to resolve, after which they were fitted in scleral lenses. She noted that the patient had some scarring and that it was necessary to monitor them closely for neovascularization. I was reminded again - something echoing through my head throughout this meeting - of the importance of us patients been seen at regular intervals. (I'm... um... thinking of my own provider and feeling GUILTY!)
An aside: The OD-MD connection
One of the things that I've picked up on repeatedly through this conference is the potential for a sort of interesting tension between the competing awarenesses of the ophthalmologist cornea specialists and the optometrists fitting sclerals. There are situations where it may be extremely difficult, for example, to know whether a problem that occurs is due to progression of a disease, or due to complications from sclerals. There have been several mentions of very, very careful documentation in every appointment that can help make the determination. And there's the broad question of, say, cornea transplants and sclerals... when scleral lenses can delay the need for a transplant, or may be suspected in some circumstances of hastening the need. It's complicated.
But the point I'm coming to is: For us as patients, it is most definitely in our favor that we have an optometrist-ophthalmologist team who have a really strong relationship with mutual respect of each others' strengths, sensitivity to risks and sensitivity to patients' own priorities as well as expectations.
Also known as my hero in SoCal :)
Case #3: LCSD
64yo female with limbal stem cell deficiency (ugh) with corneal opacification and epithelial "sworling"... complicated by the fact that she has only one seeing eye and has already been through conjunctival melanoma! Yikes.
This patient had dryness, discomfort and light sensitivity and had already pursued all the usual bags of tricks for those things. She was successfully fitted in a scleral lens which was comfortable and achieved 20/20 vision though they had to create special channels in the specialty lenses to work around a pingueculum.
But next, there were oxygen issues with the scleral lens affecting this patient, resulting in:
So this patient had some specific limitations placed on their scleral lens wear, such as:
- mandatory mid day breaks from the lens (which of course also involves refreshing the saline).
- wearing polycarbonate lenses (glasses or sunglasses) when lens was in, because of being a single-seeing-eye patient at higher risk
And there were other troubles like, after several months and many iterations before a good fit was achieved, the lens broke and couldn't be replicated to her satisfaction without more fittings. But the fact was, she was a motivated patient who preferred to use the lens in spite of everything.
Case #4: Stevens Johnson Syndrome
(Google Stevens Johnson... these are extreme situations and can be one of the worst types of dry eye and chronic surface damage.)
This patient had a lot of fit challenges and SJS specific challenges including trichiasis and frequent epilations. They had lens clouding issues, addressed with Celluvisc; glare issues, neovascularization, fluctuating microcystic edema and hypoxia from the lens is obviously a big concern. (At one point situation complicated by need to break for awhile for cataract surgery.) I hope i didn't butcher this history, by the way, my notes were a little sketchy. But anywaylll
Interesting thing in this situation is that the patient has to remove multiple times a day to clean and refill because of debris/clouding, but that actually works well because having those frequent breaks to basically let the corneas breathe is necessary in the circumstances anyway. (And I am reminded once more of this question of the necessity of patients understanding the WHY of the recommendations to help ensure they actually do it, although as I said the lens clouding is an additional motivator here.)
Dr Chiu had a slide on the importance of emotional support. That was a high spot in a highly clinical day. The mental health impact is just SUCH a painfully overlooked area in dry eye and corneal disease patients.
Case #5: Keratoconus... with a really messy multiple transplant situation
Patient was described as a 67 year old keratoconus patient who absolutely did not want contact lenses of any kind under any circumstances! He had 30-year-old transplants and was seeing 20/200 and 20/100.
She described a scleral lens "challenge" process to test the safety of the lenses for him (i.e. where they monitor closely for vision changes and edema closely) and it did make things worse, so they were sent back to the cornea specialist. They had a partial transplant, then a full transplant due to complications with the partial. Yikes! Then circled back to re-try scleral lenses. Did a trial on the left eye, and got vision to 20/20, but his endothelial cell count has to be monitored regularly to ensure safety. She mentioned that the threshold for the endothelial cell count is subject to differences of opinion amongst the cornea specialists.
She mentioned the host of unknowns in some of these situations - e.g. graft failing on its own, versus scleral leading to a graft failure.
Case #6: GvHD
This is a 60 year old patient with GvHD (graft-v-host-disease... you can get it after a bone marrow transplant, and it's one of the Really Nasty types of dry eye.) She had to get cataract surgery. The cataract surgeon put in a toric intra-ocular lens. The chorus of groans from the audience suggested that was probably a bad, bad, BAD idea. The resulting vision of 20/80 WITH scleral lenses was another clue that this was a bad, bad BAD idea.
She ended up fitting this patient with a front surface toric scleral to counter the toric in the implanted lens. Patient also developed limbal stem cell deficiency (ow) on top of everything else, suffering pain spikes.
My last note from this was that she mentioned patients won’t stop wearing lenses if the lenses are resolving their pain and nothing else will. This is a really important thing for doctors to understand so I'm so glad to have heard it from a couple of different presenters. It underscores, yet again, the need for follow-ups and the need for a good relationship with the patient.
OK... that about wraps up Thursday.
NEXT UP: Friday morning general session....
Dr. Gloria Chiu is my super hero doctor. I don’t know what I would have done if I had not found her. I’m so glad you have such huge respect for her. I’m glad I was able to contribute to your GoFundMe to send you to this conference so we can all benefit from the knowledge you’ll continue to share with all of us. You’re also a hero to me as well.