ROADMAP: AM I READY?

Preparing

I am here: I am actively pursuing sclerals, but I haven’t made a commitment yet. There are many things I need to discuss with my provider.

Scroll for questions

Questions to discuss with my

Referring doctor

  • Know the name of the specific condition that prompted the scleral referral.

    Some of us have more than one disease or condition going on, so this is a good opportunity to get a clearer understanding of your referring doctor’s expectation for you from sclerals.

  • Sclerals are rarely a “first-line” treatment for anyone. But that does not mean they are the last resort.

    Depending on your disease, there may be additional treatment options or vision correction options. You may, or may not have already pursued the obvious alternatives. You have a right to understand where sclerals fit into the broader context of treatment options for your disease.

    Every treatment has benefits, limitations, and risks to consider.

  • Self-referring places increased burdens on you, including:

    • Finding a suitably skilled and experienced scleral provider for your needs.

    • Understanding and weighing the pros and cons of your treatment alternatives, if any.

Questions to discuss with my

Lens provider

  • VISION:

    If you are getting sclerals specifically for vision reasons, how much vision improvement does your provider feel you are likely to have? How will it be measured? Should you expect to need glasses for distance or near vision, or both, afterwards?

    If you are NOT getting sclerals for vision reasons, is your vision expected to be the same with and without sclerals? Will you need to wear reading glasses when using your sclerals?

    Also, ask whether there are any special considerations based on your indication. For example, people with a history of RK may find that they struggle with their vision in the first couple of hours (or longer) after removing their sclerals. That might be a fair tradeoff for some patients but may be a significant lifestyle problem to others.

    OCULAR SURFACE DISEASE:

    Ask your provider to explain how and to what they expect sclerals to help in the short and long term.

    OCULAR SURFACE PAIN (comfort):

    What is your provider’s confidence level that you will experience significant relief? How predictable is this, in their experience?

  • Your provider will likely explain this without being asked, but be prepared to ask anyway.

    The specifics of the fitting process, particularly the first round, will not be the same for every provider because they may be using different types of technologies.

    However, the big picture is that they will get a pair of lenses ordered for you; when the lenses arrive and you’re back in the office, they’ll examine you with the lenses on; and they’ll determine changes that need to be made for a second set. It is perfectly normal for this process to be repeated two, three, four or more times.

    This conversation is an opportunity to get a sense of the range of possibilities for this process.

  • Training in scleral lens application, removal and care may be provided by a specially trained optometric technician or by the optometrist themselves.

    Training includes closely supervised sessions for lens application and removal.

  • The following two things are likely to play a huge role in your satisfaction with the process, assuming your lenses need adjustment before being finalized:

    1) How long does it take for a new lens to be manufactured and delivered to the practice?

    2) How close together does the practice schedule appointments?

    The most favorable case is when the lab is local and the provider schedules daily appointments. In that type of situation, you could be done in a week or two, allowing for training time.

    The least favorable case is when the lab’s turnaround time is long and the practice has not pre-scheduled your appointments, meaning that the re-fit cycle may be not only long, but uncertain. These are things you want to learn about ahead of time because they can be more stressful if you aren’t prepared.

  • For people with presbyopia, and particularly those who have not worn contact lenses before, this can be a very important question. You may be used to simply taking off your glasses to read, for example.

    Sometimes there are occupational reasons for a particular vision correct strategy or simply preferences. Some people who do a great deal of close work prefer to be glasses-free for near vision and wear distance vision glasses. This needs to be discussed with your provider.

  • Lifestyle needs have have implications for scleral users that should be discussed in advance, such as:

    • Occupational needs, e.g. radiologist, photographer, artist, or others with intense close focus or sustained gaze needs

    • Recreational needs, e.g. diving, extreme sports, high altitudes

    If you have concerns about your ability to handle, apply and remove sclerals, make sure to let your provider know specifics so that you can discuss the level of support you may need. Examples:

    • Limited agility

    • Hand tremors

    • Intolerance for touching one’s eyes

Questions to discuss with my provider’s

Billing staff

  • Ask your doctor’s billing staff to outline all associated costs and payment dates for you.

    Scleral lens fitting cost structures vary from provider to provider.

    Examples:

    • Global fee: A single fee covering all care and lens costs. A good follow-up question for this common fee structure is whether there are any limits - for example, what if you end up needing more re-fits than expected before your final lenses? Will they charge more? Note: Charging more may be perfectly appropriate in the circumstances but no one likes surprises, so find out what might trigger extra fees ahead of time.

    • Time and materials: Some practices may charge a fee per visit along with the cost of any lenses manufactured during the fitting process. This allows them to ensure they can recoup the cost if the fitting process is protracted, which is very important. (Many scleral lens fitters may lose money on challenging patients.) A good follow-up question is to ask about the range of possibilities for number of visits. Bear in mind that while the provider may be able to predict how easy or difficult you are to fit from a technical standpoint, you may require more adjustments than they expect before you are happy with the lenses from a comfort standpoint.

    Don’t be cheap. Trying to do scleral lenses on the cheap is not a good idea. You are likely to get what you pay for.

  • Expect to be actively involved in the insurance process, unless you are specifically told otherwise.

    Some scleral lens practices are “cash pay only”.

    Some scleral lens practices take Medicare but no other insurance.

    Insurance coverage for sclerals may be available through your major medical plan, or through your vision plan if you have one.

    Medical coverage, where available, is intended for situations where sclerals are considered medically necessary. Proving the necessity to the insurer’s satisfaction may take considerable effort as well as active support from your referring doctor and/or your lens provider. These efforts are often well worth it if they provide you with access an expert scleral provider.

    Vision plans are naturally more skimpy because they will see sclerals as simply an alternative vision correction means. This may limit your access to the best providers for your needs.

  • Find out ahead of time about the procedures and turnaround times for replacement lenses in case of emergency.

  • You can also ask about the factors that affect scleral lens life, and whether you can bring your sclerals in to have them examined for any excessive “wear and tear”.

    Sometimes patients are encouraged to replace their sclerals annually because a lens coating has worn off but the lens itself may be in perfectly good condition, so you may want to clarify what is prompting the need for replacement.

  • You may have heard or read about a “warranty period”. A scleral lens laboratories may provide warranty coverage to the provider if no final lenses are dispensed to the patient within a set period after the first set (typically 90 days). Some providers pass this warranty benefit on to the patient in order to reduce the financial impact if things don’t work out.

    It is important to understand that this “warranty” is not a “money-back guarantee” type concept for sclerals.

    Scleral lens fitting is a medical process and outcomes cannot be guaranteed. By far the largest cost involved is your provider’s time, which you should not expect to be refunded any more than other doctors’ fees are refunded.

    However, if you have prepaid the full cost, things don’t work out and you decide to move on to another provider, a lens warranty benefit (if available) might become important financially to help mitigate the cost of starting from scratch with a new provider.

    So, if a warranty is available, make sure you know the terms. This may have implications for your appointment schedule, to ensure the clock is not run out before your lens fit has been optimized.

No “refunds”: Scleral lens fitting is a medical process. Success cannot be guaranteed and professional fees are not refundable if it doesn’t work out, any more than they are for other medical services.

Questions to discuss with

Myself

TIP: Don’t rush this process. You may need to meet with your provider again or reach out by email at this point.

  • Can you finish the following sentences? Be as specific as possible.

    • I hope that when I get sclerals, I will see… or feel…

    • I hope that when I get sclerals I will be able to…

    • I am worried that when I get sclerals, …

    • I am worried that if I don’t get sclerals, …

    Your answers here may add to your list of questions for your provider.

  • Remember to include the following in your planning:

    • Initial cost

    • Contingency (anything unexpected that may delay or complicate the scleral lens fitting process)

    • Monthly cost of supplies

    • Emergency replacement lenses

    • Routine lens replacement

  • Do they give me the impression of having the expertise and experience to get this done?

    Do I feel listened to when we meet?

  • Many people who are referred for sclerals have complex corneal diseases and may have a history of unsuccessful or partially successful treatments. Then when they get started, the scleral lens fitting and training processes plus the prospect of some lifestyle adjustment may all seem daunting.

    So, it is normal for this prospect to feel very high stakes - from evaluating whether to proceed, to fitting and training, to taking the final sclerals home. You may be feeling “This is my last resort since nothing else has worked,” which adds to the pressure.

    If this is you, consider what your support system will look like throughout this process.

    It’s often a good idea to ask a close friend or family member to attend appointments with you. If they can help with note-taking, for example, that may help you focus on Q&A with the doctor without worrying what you might forget afterwards.

    Feel free to reach out to the Dry Eye Foundation for peer support.