Keratoconus: Frequently Asked Questions
If you are reading this, you’ve already heard the news that you have keratoconus. Or perhaps a close loved one has keratoconus. So where do you begin and what do you do about it? The aim of this information leaflet is to help answer some questions about keratoconus, such as what to expect, what to do about, and how to go on living your life. Blindness is not inevitable. Let us be clear about that! If you are proactive and seek the right care there can be minimal impact on your life.
What is keratoconus?
What are the symptoms of keratoconus?
The most obvious one is blurred vision. Usually patients with keratoconus will develop extreme myopia (nearsightedness) with very high irregular astigmatism. This causes their vision to be much more distorted than just normal blur.
Plus there are much more glare and halos at nighttime. Words tend to have shadows around them or even look double. If scarring of the cornea has occurred secondary to keratoconus, then there is increased haziness and a decrease in contrast sensitivity. Additional symptoms are due to a crazy phenomenon known as, “high order aberrations” that come from an abnormal cornea. These will cause ghosting, shadows, and overall distortion to your vision that a simple pair of glasses or soft contact lenses cannot treat.
Life with keratoconus
Life with keratoconus can be challenging. The good news is there are many ways to cope with keratoconus, get good vision back and preserve your quality of life.
Understanding the topography — “The island in the ocean”
When you were diagnosed with keratoconus, your eye doctor probably took what was called a corneal topography reading.
A normal cornea will be a very smooth round island that is not very high or steep. It is often yellow or green color indicating that the land (your cornea) is a very even and rounded. On the contrary, an eye with keratoconus will have a very pointy volcano in the middle of the island which is that red bulge that is produced in the area where the cornea is thinning. This is often highlighted by areas of red or orange.
Keratoconus is progressive
We must keep in mind that an eye with keratoconus is a changing eye and there is no accurate way to predict how fast it will change and how severe it will progress. If it happens, though, your doctor may offer you corneal cross linking – an in-office surgical procedure that combines riboflavin (vitamin B2) eye drops and ultra-violet light to the cornea in order to strengthen the cornea. This procedure is highly effective in preventing progression of keratoconus, but unfortunately cannot reverse or cure the disease.
How do you treat keratoconus?
NON-SURGICAL TREATMENTS FOR KERATOCONUS
In very early cases of keratoconus the usual eyeglasses can certainly be good enough. However, remember that keratoconus causes high order aberrations that are not treated well through traditional means. Still, we do recommend nearly all keratoconus patients have a pair of glasses because it often helps marginally enough to be able to see in emergency situations.
Soft Contact Lenses
Soft contact lenses tend to work better in milder cases of keratoconus but once the condition becomes more advanced, a contact lens made of rigid material will likely be needed. This is because as keratoconus becomes more severe, soft contact lenses do not sit very stable on the eye nor do they smooth out the surface enough to produce a clear image.
Rigid Gas Permeable lenses (RGPs)
Rigid Gas Permeable lenses (RGPs) are small, rigid contact lenses also known previously as “hard lenses.” RGPs can help to correct those higher order aberrations and drastically improve vision over glasses. The major drawback of RGPs is definitely the initial comfort of the lenses. There is lens awareness (meaning you can feel the lenses as you blink) and often the eye’s first response to the lenses will be some excessive tearing. That does not mean that the lenses are impossible to wear however, realistically speaking it does take quite some time to adapt to the feeling of wearing these RGP lenses but the amazing clarity of vision is worth the effort.
Scleral Contact Lenses
Scleral contact lenses are rigid contact lenses that are much larger than RGPs and extend onto the white part of the eye called the sclera. Scleral lenses have two major benefits over all the other types of contact lenses. First, comfort is better because the lens rests on the scleral (which has fewer nerve endings) versus the cornea (which has many nerve endings and is very sensitive). So most patients say that scleral lenses are hands down more comfortable than RGPs. Secondly, because scleral lenses are so large they are much more stable on the eye and do not tend to move around a lot when you blink. Because the contact vaults over the cornea, it actually does not touch the cornea at all leading to better comfort. Because the scleral lens is rigid, it creates a smooth surface for light to pass through causing clearest vision.
Scleral lenses have been a real game changer in the last few years and the technology has improved by leaps and bounds. The main downside of scleral lenses is that it can be slightly more complicated to insert and remove compared to other contact lenses. All other contact lenses you can look straight into a mirror and just place them on the eye. Scleral lenses however require special tools and special solutions for proper insertion and care.
As a last resort, if the condition of the cornea is too weak or scarred to give decent vision, then a corneal transplant will be recommended. Surgeons will remove your cornea and then replace it with a donor cornea. Traditionally, this procedure was called a penetrating keratoplasty (PKP or PK) and the full thickness of your cornea was removed prior to adhering the donor tissue. Stitches were used to keep the donor tissue in place. In order to prevent graft rejection, you usually were prescribed special medicated eye drops to prevent infection and complications.
Luckily, newer techniques such as Deep Anterior Lamellar Keratoplasty (DALK) are less invasive and do not involve removal of the full thickness of the cornea. Instead only the outermost layer is removed and replaced. This allows for quicker recovery time and a smaller chance of graft rejection.
Unfortunately, usually after a corneal transplant, vision is still not perfect after the surgery alone. Since the eye now has a donor cornea in place, it has a better chance of seeing but will still likely have an irregular shape which requires some form of contact lens or glasses correction. The good news is that over 90% of patients with keratoconus will not need a corneal transplant.
Who Can Help Me with Keratoconus Options?
So now that you have learned about all the treatment options available to help keratoconus – how do you decide which is the right one for you? You need to get the right eye doctors on your team to give you the best advice. Your MVPs are going to be an optometrist well versed in treating keratoconus and a corneal specialist. You should contact both eye doctors to make sure you are well informed of all your treatment options. It should be a coordinated team effort and I would be wary of any eyecare practitioner, optometrist or ophthalmologist that states they have all the solutions you need.
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