Questions, concerns, or issues with your lenses?

Maybe you're having trouble with insertion. Or removal. Maybe some fogging or a lot of mucous deposits. Perhaps it's a burning sensation towards the end of the day.

Maybe you're seeing some rings around your iris after removing your lenses, or are troubled at what your vision is like for awhile after removal. Maybe you're seeing extra redness. Or some extra discomfort at certain times of the day.

So what do you do?

Do you contact your doctor?

For some of you, your eye doctor is always your first stop with your scleral lens questions. That's great - great that you take that approach, and great that your eye doctor enjoys your trust in their knowledge, skills and helpfulness.

Or do you go on Facebook?

We have a very popular scleral lens Facebook group. I always encourage people to join it. The scleral lens experience is unique, and it's helpful to have other people in your life who "get it".

There are also a ton of minor practical issues where it can be ever so helpful to have input from other users: What brand of hand soap do you use? How do you feel about flying with your lenses? How do you deal with the need to remove-rinse-reinsert at work? and so on.

But there's also a lot of medical matters that constantly come up in the group. And peer support groups shouldn't be doling out user-specific medical advice.

On the other hand:

• It's VERY hard to draw a clear line between medical and practical. For example, is your choice of preservative free saline/drops to fill your lens a medical question? or a practical question? The answer is not equally intuitive to all members of the medical community, let alone consumers.
• What do you do when your doctor doesn't know? All too often, I've heard from patients who are experiencing inadequate support from their doctor on issues that I would personally view as critical to lens usage safety. 

Or do you... BOTH?

Please! Do both! Your peers are great for giving you context for your experiences, and they can help you refine your list of questions.

But please, if you're going to share your experiences and ask questions on the Facebook group, please always tell your eye doctor TOO.

This is not the spirit of CYA speaking. It's not just another obligatory website disclaimer.

This is a plea from me, Rebecca, to you, my fellow scleral lens users, that you speak with your eye doctor about your lenses just as much as you possibly can.

Why?

Reason #1: Safety.

I love our Facebook group. I mean I really love it. The people are so great, so helpful, so supportive, so understanding. I love that the doctor members (there are hundreds) learn about our realities from reading the group. I love that we have top professionals acting as moderators to help keep things safe.

But at times the group terrifies me, like other Facebook peer support groups. People who like to share and are trying to be helpful will dole out advice to other people that they know nothing about. Sometimes it's fine, and sometimes it's very, very bad advice. Only, this is about our precious eyes.

Suppose you're having trouble with lens application or removal. And the people answering your posts encourage you to "just keep at it". What they don't know is that you're on your third corneal transplant or are experiencing corneal abrasions or have SLK or very tight eyelids, because none of us is sharing our entire life history and even if we did, we don't necessarily know all the implications ourselves, and certainly the people replying to questions aren't lens care professionals.

Suppose you're experiencing excessive redness and half a dozen people chime in about how normal that is. But your redness is not their redness. Your eyes are not their eyes, your lenses are not their lenses. What if you're experiencing hypoxia or some other serious issue? 

You don't know what you don't know.

When you put your questions onto a Facebook group, weed through the variety of sometimes contradictory advice, pick up some tips that seem sensible and then just go on your merry way without involving your eye doctor, you lose a safety net.

So tell/ask your doctor what you're telling/asking the group.

• Even if you have to force-feed it to them.
• Even if you don't have a follow-up appointment scheduled.
• No scleral lens issue is too trivial to tell your eye doctor about it.
• If you're having issues or concerns, BE A SQUEAKY WHEEL.

Reason #2: Raising the bar.

We're living in an extraordinary and challenging period for scleral lenses. 

Historically, scleral lenses are a medical treatment, the functional equivalent of a prosthetic device rather than just an expensive specialty contact lens. And few scleral lens providers - very few, in fact - can truly be described as specialists in this area. 

Now, however, optometry is flocking to scleral lenses as a lucrative specialty lens with broad applications. Debates are ongoing in the profession about this fact. At the encouragement of lens manufacturers, many optometrists are adding scleral lenses to their practice, dabbling in effect, without extensive training, without a thorough understanding of the role that experience plays, and without the background to understand how much ongoing support many scleral lens users are likely to need.

Getting the right lens is just the start.

Newer lens fitters often consider the lens fit as the greatest challenge. But we know different. Getting a great fit may be a considerable challenge for many of us, and yet at the same time, just the precursor to a host of adaptation challenges.

What do I mean by adaptation challenges?

• How my lenses behave on a long day. What appeared to be a great fit at noon may not be quite so much of a great fit at 10pm. Does it fit right, really? Do I go back? But my doctor always says it looks great. What to do?
• What's the optimal lens wear time? 
• Why are my lenses fogging and what can I do about it?
• What's the best solution to fill them with? 
• Clear Care, or Clear Care Plus?
• Buffered or unbuffered saline?
• What about those red rings around my eyes when the lenses come out?
• I'm having trouble removing them - I tug and tug! ($#!!@)
• Insertion is still a struggling 3 months after starting - why?
• Can I nap for an hour on a flight without having to take them out?

This is just a small random sampling of ever so many things that come up.

Your doctor needs to know as much as possible about adaptation issues.

Your eye doctor needs to know what you know, i.e. the issues you're facing, and they need to know what you don't know, i.e. the answers and solutions to your issues.

If they don't have those answers, they have lots of excellent colleagues to ask, including the Facebook scleral lens fitter group. I have no doubt that everything we're talking about on our Facebook group comes up on theirs from time to time.

Don't want to bother them? Do it anyway.

It may not seem practical to bother your doctor with all your questions. And sadly, some users find their doctor just isn't helpful. If that's the case, it's time to think seriously about finding a different scleral lens partner. But in the meantime, please keep pestering them, whether they like it or not.

The more we communicate, the more they will learn.

We. Are. Data.

Our doctors don't know what they don't know. This stuff is NEW, more so than most of us realize. They need to learn more about our experiences and patterns.

And the more they learn, the more they will study, and publish.

Nobody likes the term 'guinea pig', but the majority of scleral lens users ARE guinea pigs whether they know it or not.

There is relatively little published science in the scleral lens world. There are so many things that need to be studied about not just fitting but wearing scleral lenses in the long term. We know almost nothing, for example, about the medical implications of the various solutions we may be holding against our corneas all day long! The chemical properties, the pH, the viscosity, how are these things affecting us? Or, what are the long term implications of using a larger or smaller diameter lens? We need to motivate our eye care professionals to get curious about these things, to observe and study and publish more, for all our sakes.

Our long term needs demand better science and more skilled professionals.

And we all get to be part of raising this bar - if we choose to participate.

So please, help us all raise the bar. Start by making your eye doctor, not Facebook, your first port of call. By keeping them in the loop about changes that you make. And by telling your eye doctor as much as possible about your experiences and needs, as well as letting them know what you need from them to be confident and successful with your lenses.

p.s. How?

Call your doctor's office.

Leave a message for the doctor, or ask to speak with a contact lens technician.

Not sure what to say? Having difficulty advocating for yourself? Here are some ideas. Feel free to add more in the comments.

• "I have some questions about my lenses and really need to speak with someone. Can you arrange for someone to call me within the next two days?"
• "I'd like to schedule an earlier follow-up because I have some concerns about how things are going."
• "I have safety concerns about the insertion (or removal) process that I really need help with."
• "I do not feel sure that it's OK to continue wearing my lenses until I can get some answers to my questions."
• "I'm concerned that my warranty period will run out too soon if I am not able to spend more time with the doctor troubleshooting the issues I'm having."
• "I've invested a lot in this process, but it's complicated, and I feel like I need more support than I've received so far. What can you do about that for me?"
• "Does Dr X ever email with patients? That might actually be the quickest way to resolve my issue."
• "I'd like to email Dr X a picture of my eye taken right after I remove my lens. What email address can I send it to?"