Ask the Eye Doctor About Keratoconus
Dr. Arthur B. Epstein, Phoenix Eye Care, Phoenix, Arizona
Do you have a question about keratoconus? Each week, Arthur Epstein, OD, will answer the best questions submitted. They will then be published on this page.
This feature is sponsored by Bausch + Lomb Specialty Vision Products.
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Q: My doctor told me that I have keratoconus. That's why I cannot undergo LASIK. But can I have LASIK once I am done with the corneal crosslinking treatment? If yes, then how long should I wait after the CXL? S.A.
A: LASIK has the potential to destabilize the cornea, especially for patients with keratoconus. Crosslinking helps stabilize the cornea but does not return it to normal. I would advise against LASIK, as the risks far outweigh any possible benefit. Dr. Arthur Epstein
Q: I have keratoconus and experience huge starbursts at night when facing oncoming traffic while driving. I wear scleral lenses that do not reduce the starbursts. All my research has lead me to believe that higher-order aberrations are causing the starbursts. But I just returned from the eye doctor who measured my eyes with an aberrometer, and he said he sees no HOAs.
How can this be? Has anyone experienced this? How am I seeing starbursts but do not have HOAs? I was hoping it was HOAs, as some contact lenses can correct for that. Now I am back to square one. C.
A: Starbursts can be caused by a number of different issues, including higher-order aberrations. Problems may arise from your keratoconus, while others are possibly due to the contact lenses.
I would first look at the lens design to insure that the optical zone is sufficiently large to accommodate your pupil size under dim illumination. Your doctor may want to use brimonidine, a commonly prescribed glaucoma medication that can reduce pupil size, to test this before refitting.
Keep in mind that in-office conditions may be very different than what you are experiencing while driving at night, which may complicate identifying the cause and addressing it. Dr. Arthur Epstein
Q: Does crosslinking make it more or less difficult to correct your vision through squinting or focusing? How does keratoconus affect the eye's ability to sense light and see motion and afterimage? How well do crosslinking or contacts correct this? M.B.
A: Contact lenses correct the distortion caused by keratoconus by covering the irregular front surface of the keratoconus cornea with an optically perfect contact lens surface. A properly fitted contact lens should have minimal impact on the cornea or the progression of the disease and is aimed primarily at helping the patient see better.
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Crosslinking is a procedure where UV light and riboflavin applied to the corneal surface strengthen collagen within the cornea. The procedure does not directly improve vision but may slow the progression of the disease.
Other than blurring and defocus caused by corneal distortion, keratoconus will have minimal impact on other visual functions. Dr. Arthur Epstein
Q: I had laser surgery for severe astigmatism at age 42. I am now 66. After the surgery I had extreme glare, halos and blurred vision at times, all of which have worsened. I never was diagnosed with keratoconus but have every symptom.
My grandson is being followed for keratoconus. Should I see a corneal specialist? Is there help at my age? C.S.
A: Depending upon the type and extent of your surgery, it is possible that you have developed keratoconus. With so many new developments in ways to manage the condition, it would be wise to consult with a cornea specialist at this point. Dr. Arthur Epstein
Q: I have keratoconus, and four years ago I had crosslinking in my right eye. Now the keratoconus seems to be stable, though my left eye is damaged a little bit. Can I go to the gym or lift weights? Or would that lead to more progression of the keratoconus? M.
A: I have not observed any harmful effect from normal exercise; however, since you are under the care of a local doctor who is familiar with your specific case, it would be prudent to consult your doctor for their opinion. Dr. Arthur Epstein
Q: Would corneal crosslinking help with scarring on the cornea? L.N.
A: While crosslinking will help stabilize the cornea, scarring, especially when it involves deeper layers, is unlikely to be helped. Dr. Arthur Epstein
Q: I have severe keratoconus in both eyes and have been using GP lenses for the past 20 years. Recently my son, who is 9, was advised to wear eyeglasses with a spherical power of -1.25 D for both eyes and .5 D of cylinder for the right eye. Could this be keratoconus or the start of keratoconus? What steps should I take to not allow this to deteriorate any further, and what is the minimum age for having C-3R? K.J.
A: Keratoconus is in most cases genetic in origin. That means your son likely has a predisposition for the disorder. While there is no proven way to completely prevent its occurrence, most experts believe that eye rubbing plays a significant role in weakening the corneal structure, which may lead to development or progression of keratoconus. In addition, any eye allergies should be treated with topical medications to reduce the tendency to rub the eyes. Dr. Arthur Epstein
Q: I had an Intacs procedure and CXL two years ago. This corrected my vision by about 90 percent, but only in daytime. At night I see halos everywhere. Does any treatment fix this problem? A.C.
A: No currently available surgical procedure is perfect. The halos you see are due to either residual abnormalities in the shape of your cornea or perhaps the Intacs themselves. These aberrations may be dependent on pupil size. If that is the case, your doctor may be able to prescribe a medication that can reduce the halos at least temporarily. I would check with your doctor. Dr. Arthur Epstein
Q: I'm a 24-year-old keratoconus patient who is supposed to be using hybrid contact lenses but using glasses instead due to lack of funds for contact lenses. However, I find that I get sleepy when I wear my glasses and severe headaches in lighted rooms. Could it be a direct effect of the glasses, and is there a chance that they could be worsening my sight? Would contact lenses end the headaches? M.M.
A: Eyeglasses usually do not provide an effective correction for keratoconus, for a variety of reasons. What you are experiencing may be an example. Keratoconus is often associated with irregular astigmatism. Rigid and hybrid contact lenses essentially cover this up, while eyeglasses can only approximate a correction by remedying the induced nearsighted and regular astigmatic errors.
The result is residual uncorrected distortion that can lead to focusing problems and headaches, as you describe. In addition, eyeglass astigmatic corrections for keratoconus tend to be quite high, which can induce binocular vision issues. This can also lead to discomfort and headaches.
While I don't necessarily think glasses will worsen your sight permanently, I do think they can make you uncomfortable, which is why I recommend them only for very mild cases and for backup purposes when contacts can't be worn. Dr. Arthur Epstein
Q: I got contact lenses to improve my vision. If I get the crosslinking treatment, would I need a different prescription? S.J.
A: Although crosslinking results vary, it is likely you will need to be refitted after the procedure. Dr. Arthur Epstein
Q: I am a 27-year-old man. Some months back, I was diagnosed with keratoconus and advised to undergo the C3R procedure, which I did. I was advised to wear eyeglasses with a new prescription. I am a software engineer and work nine hours a day in front of a computer. After a few hours of work I have eye pain, eye dryness and worse vision. What are the precautions or treatment I should take? Should I stop working at a computer and look for a non-technical job? A.
A: C3R can help slow the progression of keratoconus and stabilize the cornea, but it cannot reverse the disorder. It is impossible to offer specific advice without actually examining you, but from the information you provided, I suspect that your correction may have changed since the eyeglasses were prescribed.
In addition, the irregular shape of the cornea can worsen instability of the tear film, resulting in dry eye. Excessive computer use interferes with the blink, which can also worsen dry eye.
While giving up computer work might help, that is a very drastic and life-changing decision. I suggest that you ask your doctor to evaluate you again, specifically looking at your near vision correction and for dry eye, both of which are treatable. Dr. Arthur Epstein
Q: I have seborrheic dermatitis, especially on my face. Would it be risky to undergo corneal crosslinking? I read that with an autoimmune disease like lupus it is contraindicated, and I imagine that for seborrheic dermatitis it is similar. I have also a thinning in the peripheral retina and vitreous floaters. J.
A: The cause of seborrheic dermatitis is not fully understood, but it is not considered to be autoimmune in nature and is therefore unlikely to be an absolute contraindication to corneal crosslinking. However, after examining you and taking a thorough history, your surgeon will be able to offer the best guidance regarding risks and benefits of the procedure and answer your questions. Dr. Arthur Epstein
Q: I was diagnosed with keratoconus a year ago. I had C3-R recently, and I've been wearing glasses. I don't see much difference in my vision. Does that mean the keratoconus won't progress? If it does, at what age will the progression stop? (I'm 20.) S.
A: Stability after C3-R is a positive sign, but keratoconus can be unpredictable so there is no guarantee that things won't change in the future. Progression tends to slow down with increasing age, but C-3R may increase long-term stability beyond aging. In any case, typical precautions such as avoiding eye rubbing are wise even after crosslinking. Dr. Arthur Epstein
Q: What is the minimum thickness of cornea required to undergo collagen cross linking surgery with riboflavin drops? P.K.R.
A: Corneal thickness of less than 400 microns is generally considered a contraindication to the standard treatment protocol; however, as with all surgical procedures, consultation with your doctor is essential, as individual situations vary. Dr. Arthur Epstein
Q: I am 33, male and recently diagnosed with keratoconus. The ophthalmologist recommended getting rigid lenses. I had never worn contact lenses or glasses before, so I did not know what to expect. The optician went through the different types of lenses, and I opted for the scleral as it's a comfortable fit.
I have been wearing these religiously for three weeks, and colors have been brighter and darker. Also driving at night has really improved. There are, however, some things that I found concerning:
- When using a laptop or mobile phone I often see ghosting around the text. I told the optician, and he said it's not a concern because my eyes are adjusting to the lenses. Is this true?
- My right eye is weaker than my left, but if I block out each one and look, the left is slightly blurred. This again he said is because my eyes are adjusting.
Should I see another optician, or will my eyes adjust? R.
A: Many patients take some time before they fully adjust to newly fitted lenses. It is also common for serial refinements to be necessary in order to achieve an optimal fit. While you should expect to see well through your lenses, even perfectly fitted lenses may result in less than perfect vision due to residual aberrations from keratoconus. If in doubt, a second opinion from a knowledgeable clinician is always a good idea. Dr. Arthur Epstein
Q: I am 24 years old. Can I work on a computer daily for about six to eight hours? I am a keratoconus patient and underwent CXL three years ago.
I am learning Java, HTML, SQL, PHP, etc., which is why I am asking you. Will I go blind? F.
A: Keratoconus can lead to work challenges for many patients. As long as you are able to see well enough to function at the computer and do not experience excessive strain or discomfort, I see no reason why you can't attend training. Avoid rubbing your eyes, and have wetting drops to help when your eyes feel dry.
If you have problems, your doctor may be able to help with an improved correction or contact lenses that will help you function better at the computer. Dr. Arthur Epstein
Q: Are there any conditions other than keratoconus that can lead to sudden rapid progression of myopia (-1D in about two to three months)? Also, is any drug or medication associated with or known to trigger keratoconus? L.
A: A number of things can cause rapid change in prescription, including diabetes, retinal problems and some medications. While occasionally rapid increases in myopia are seen, especially in people engaged in excessive near work, having an eye checkup is a good idea to rule out other causes. There is no association between any medication and keratoconus that I am aware of. Dr. Arthur Epstein
Q: I had crosslinking done seven years ago. Can crosslinking fail? My sight has only gotten worse, and many times my contacts are uncomfortable. Or should I have the crosslinking done again? M.C.
A: All procedures performed on human beings can have variable and sometimes unpredictable outcomes. It is possible that your last procedure wasn't fully successful and that a subsequent treatment would have better success, but this is something that only a doctor who examines you would be able to determine with any reasonable accuracy.
In any case, if your contact lenses are bothering you (and this is true whether you have had crosslinking or not), the fit should be checked. It is possible that the last procedure slowed the progression but failed to halt it completely and the fit of your lenses has changed. A simple update in fit may address your issues without need for additional treatment. Dr. Arthur Epstein
Q: I am 24 years old and was diagnosed with keratoconus three months ago. My doctor says it is mild: on a scale of one to 10 it is a one in my left eye and a three or four in my right eye.
I went in for a crosslinking evaluation today, and the topography indicated no progression (though I understand only three months have passed). The clinic performs a hybrid version of the CXL, in which they remove only a very thin version of the epithelium for better absorption of the riboflavin drops.
In your opinion, do I have anything to lose from having the CXL treatment in my right eye? Even though this would be an "epi on" treatment, I am still worried about complications such as hazing and scarring and am trying to perform my due diligence before making a decision. I may wait another six months and keep monitoring the progression before making a decision, as I have no longer have the allergies and eye rubbing that I believe caused my condition. C.B.
A: Without seeing your topography and examining you, consider this more perspective than advice. I think crosslinking holds much promise for increasing corneal stability and slowing progression, but it is still relatively early in its evolution as a treatment. I tend to be conservative by nature, and as long as you are closely monitored and show minimal thickness and topographic changes in the left eye and you avoid eye rubbing scrupulously, I would just monitor until additional change is evident.
I have seen many patients with extremely mild keratoconus remain stable for years. With the slight risks associated with crosslinking that you mentioned, waiting may be the more prudent choice as long as you are willing to be examined regularly. Dr. Arthur Epstein
Q: I am a homeopathic doctor. I have a keratoconus patient and am treating him. Three months ago, his corneal thickness was 372; now it is 385. What is your opinion of this? Dr. S.B.
A: I have great respect for homeopathy; however, a small increase in corneal thickness in a single patient does not offer sufficiently rigorous proof to confirm efficacy of a procedure or treatment. Corneal thickness is also only one of many changes in the keratoconus cornea. If you believe your treatment has merit, I urge you to conduct a more scientific investigation with a larger patient population. Dr. Arthur Epstein
Q: I am a 38-year-old female with very advanced keratoconus in both eyes. My last visit with my ophthalmologist, a few days ago, gave me more questions than answers. I was told that a corneal transplant would have a 50 percent success rate because my "vision has been too bad, for too long." However, tests would determine the prognosis more accurately.
Can you tell me what would make me not a good candidate because of the length of time of very poor vision? Is that an indication that I should not get the transplant? F.P.
A: The body is very sparing of energy and effort. When an eye is incapable of seeing properly, as may be the case with your keratoconus, the brain sometimes shuts down much of the "circuitry" that converts visual information into what we experience as seeing.
This is typically worse for children, who may suffer permanent loss of potential acuity in the affected eye. In adults that saw well initially, this is usually less of a problem, and when vision is restored the brain often comes back online. How long depends on many factors.
Your vision may not be perfect it is unlikely to be after a transplant anyway but still it will likely be dramatically better than what it is today if your keratoconus is advanced and your cornea scarred. Testing can provide some insight into potential post-surgical vision.
Transplant surgery is among the most successful performed on the body. I am not sure how your surgeon is defining success, but you should always be comfortable and communicate well with a surgeon before surgery is performed. Dr. Arthur Epstein
Q: My brother-in-law was diagnosed with keratoconus at the age of 10, and he is 16 now. We have visited many doctors here in Iraq and Iran. They said surgery should be done when he is 18. However, some doctors said yesterday that he should have surgery right away because he may lose his eyes. Any advice? S.
A: Keratoconus varies tremendously from patient to patient. Some barely progress, while others progress rapidly. Because of this variability, treatment approaches sometimes need to be modified.
In the past, contact lenses were a primary treatment, with corneal transplant necessary in advanced cases. Collagen crosslinking is a newer procedure that can help stabilize keratoconus and might be the procedure his doctors are recommending. Dr. Arthur Epstein
Q: My doctor told me I have keratoconus, but instead of being in the front, the cone shape is in the back of the cornea. He told me in his 25 years as an eye doctor he had never seen this. I have tried to find information about it, but can't seem to find any. T.R.
A: This does occur, but it is rare and can be hard to diagnose, so it's not unusual that your doctor hasn't encountered another case. There is a fair amount of information available on the Internet. Search for "posterior keratoconus." The condition is usually present at birth but can be caused by trauma. The good news is that it is typically stable. Dr. Arthur Epstein
Q: I am going to have crosslinking done to stop the progress of my keratoconus. Is it OK to wear hard contacts beforehand? The doctor I got my contacts from thinks I should not wear them during the week before the procedure. M.O.
A: Crosslinking has several variations, and surgeons have different preferences and preoperative routines. In addition, different types of contact lenses can impact the cornea in different ways. For that reason I recommend you discuss this with your surgeon directly regarding how long before the surgery you should discontinue contact lens wear. Dr. Arthur Epstein
Q: I was diagnosed with keratoconus (by accident) two years ago, and I was prescribed a rigid lens for my right eye. Apparently the condition had started/stopped in my left eye, so that's why I never noticed the blurriness in my right eye. I couldn't stand the GP lens, so I stopped using it almost immediately. And because I have no problems seeing thanks to my left eye, and I had no money left, I never went back to my doctor.
Today I wore the lens again because I've become aware that I shouldn't ignore it anymore. The vision in my right eye improved significantly, but I noticed that I see colors in a different tone darker, high-definition even. Should my left vision be the same as my right vision? Is it dangerous to my left eye if it isn't? Or could it be a matter of adaptation to the lens? D.
A: Contact lenses generally will not alter color vision; however, there are other conditions that can. I advise you to consult your eye doctor to verify that your color vision is actually altered, and if it is, what the cause may be. It may be unrelated to the keratoconus and require treatment. Dr. Arthur Epstein
Q: I had a cornea transplant nine years ago. Objects now appear disproportional. When I look at a regular-size truck with the eye that had a transplant, the truck's length is boxed, and it's taller. All objects appear this way in that eye.
What is the medical term for what I have now, and is it curable? Seems as though my vision is worse than it was prior to the transplant.
I also have a stationary floater with squiggly lines inside it that move and flicker. I had PRK surgery in that eye last year, but that turned out to be a total waste of money. D.
A: From your description, it seems like you have a significant amount of residual astigmatism that sometimes occurs in transplant surgery. This causes asymmetrical magnification of objects in the operated eye and likely explains what you are experiencing. This is not unusual and can often be corrected using a gas permeable or scleral contact lens. Ask your doctor what your options are. Dr. Arthur Epstein
Q: I wore eyeglasses from age 11 to 35, and then I wore soft contact lenses until I was diagnosed with keratoconus at age 55. Since the diagnosis 13 years ago I have been wearing RGP lenses, and I am now 68. My vision has been stable over this time, and although I have minor discomfort, I can tolerate the RGP lenses.
I was therefore surprised when my optometrist suggested that I try eyeglasses again. He suggested this prior to my eye examination, so I assume it's based on my age, years of contact lens wear or corneal thinning.
I was very happy with my vision using RGP lenses, and so far I find my vision much worse with eyeglasses. Should someone of my age and contact lens wearing history stop using RGP lenses in order to preserve their vision? B.S.
A: I am surprised that a recommendation was made without first examining you. Unless your doctor was familiar with your case and based his thinking on a previous exam, I am not sure what his rationale was.
That said, many keratoconus patients cannot achieve useful vision with spectacles alone, and if you can, he may have been thinking having a "backup pair" of eyeglasses would be prudent.
If you are comfortable and your lenses are not causing any damage, there is no reason you can't continue wearing them indefinitely. You might ask him what his thinking was at your next visit. Dr. Arthur Epstein
Q: I had an Intacs procedure five years ago for both of my eyes, due to keratoconus. About two and a half weeks ago I experienced some eye pain in my left eye. I went to see a local ophthalmologist, and he informed me that the Intacs segment in that eye has moved. What, if anything, causes an Intacs segment to move out of place? B.K.
A: Any number of things, including eye rubbing, can cause an Intacs segment to be displaced. It would be prudent to return to the surgeon to assess what needs to be done to make sure the segment is stabilized and not eroding the cornea. Dr. Arthur Epstein
Q: I am age 34, and my doctor told me I have keratoconus. At night, I sometimes can't drive comfortably due to the lights.
The doctor has advised me to get CXL, but at the same time she said it might not be that effective due to my age. I am undecided, as I am hoping for a natural remedy or any exercise that can help. I have some problem only at night but not really in the morning, so is there a possibility my keratoconus won't progress, given my age? Or should I do the CXL? C.
A: You are asking good questions, but unfortunately without actually examining you, they are impossible to adequately answer. It is likely that your night driving issues are due to pupil size, which dilates in darkness. The larger pupil can lead to increased blur and distortion in patients who have even early keratoconus.
Treatment includes contact lenses, CXL and, in some cases, drops that would mildly constrict your pupils. It would be best to discuss all of these options with your doctor. Dr. Arthur Epstein
Q: Our 38-year-old son has Down's syndrome. He needs a corneal topography test, but it fails due to his constant blinking! Even with a mild tranquilizer it's failing. I don't know what to do. P.H.
A: I know how difficult and frustrating it can be. The natural reflex when things come close to the eye is to blink. However, patience will often win out.
Also, large instruments can be intimidating and don't help matters. The Keratron Scout is a handheld topographer that can make it a bit easier to get a reading. I suspect you would not have much trouble finding an office that has one that would be willing and patient enough to try to get readings for your son. Ask your doctor to help you locate one nearby.
The other alternative is that long before we had computerized topography, astute contact lens fitters could interpolate topography from fluorescein dye patterns beneath a trial contact lens. Topography is helpful in evaluating and tracking progression of keratoconus, but it is not essential for a skilled examiner to adequately assess your son's eyes. Dr. Arthur Epstein
Q: Is there any gene therapy solution for keratoconus in the UK? L.S.
A: While keratoconus has a known genetic component, as is the case with many disorders, it is far from fully understood. As its mysteries are unraveled by modern medicine, one day keratoconus likely will be managed by gene therapy. But currently, no such treatment exists. Dr. Arthur Epstein
Q: I am a 25-year-old man and have been living with keratoconus since my mid-teens. My right eye was treated with crosslinking, and I don't get constant headaches any longer, my eyesight is good enough to drive and my lifestyle isn't suffering from my eyes' condition.
The keratoconus seems to have stabilized, but can it progress further? I'll admit I touch my eyes, though I rarely rub them. I tend to wash my face and use a towel if the itch persists. F.A.
A: Everyone is different, so it's impossible to say if you will remain stable or not. Still, from what you are describing, you are doing well and are likely to continue to do well. Avoiding eye rubbing is extremely important, so please don't do it. Dr. Arthur Epstein
Q: I am a 65-year-old female diagnosed with keratoconus in my left eye about three and a half years ago. I was fitted with an RGP lens and have since gone through at least four fittings, none of which have been successful. The lens is very uncomfortable to wear for any length of time but does improve my vision.
Over the last nine months I have noticed a loss of vision in my left eye. I had LASIK surgery 18 years ago and a year later an enhancement neither of which really improved my vision. Three years ago I was diagnosed with cataracts and several months later had cataract surgery on my right eye. I am currently seeing 20/15 with that eye.
My doctor will not do cataract surgery on my left eye until I have the crosslinking. My question is, do I have the crosslinking and then the cataract removed? Or just have the cataract surgery and hope for the best? Also, is LASIK the reason for the keratoconus? A.K.
A: Corneal ectasia or thinning is similar to keratoconus and has been associated with LASIK surgery. So it is possible that having had LASIK may have played a role.
Regarding the timing of the procedures, different surgeons have different approaches. From your description, your surgeon prefers to stabilize your cornea prior to performing cataract surgery. Since your doctor is in a better position to judge, I would follow his or her advice.
You should be aware that even after crosslinking and cataract surgery, you might still require a contact lens for optimal vision. Scleral lenses are generally more comfortable than conventional keratoconus RGP lenses, so it may be wise to find a fitter skilled in this modality if necessary after surgery. Dr. Arthur Epstein
Q: My 6-year-old daughter has suffered from posterior keratoconus from birth in both eyes and has a 60 percent scar in the middle of the cornea. Please suggest possible treatments. O.
A: Posterior keratoconus is a relatively rare and complex condition. Unfortunately, without actually examining your child, it is impossible to suggest appropriate therapy. Since significant scarring can interfere with vision and normal visual development, it is important that she remain under the care of a corneal specialist.
Corneal transplant may be an option but may be complicated by her young age. Thankfully, there are many excellent doctors in India who should be able to better help you. Dr. Arthur Epstein
Q: I'm a 29-year-old man with keratoconus since age 18. I had the Ferrara Ring surgery four days ago. By the end of the surgery I was already seeing better: I could read a book without my glasses, and everything was clear. I was so surprised and happy.
On the second day I woke up still seeing very well, but by the end of the day it was much worse. Now, four days later, I'm still seing very badly. With or without my eyeglasses, I'm seeing worse than I used to before the surgery.
I went to my ophthalmologist and was told that this is normal, because the eye is still adapting to its new reality (the rings). But I'm very worried. Can you tell me if this is normal? V.S.
A: Ring implantation changes the shape of the cornea and adds structure. Not to worry about how you are seeing right now. It can take time for the cornea to stabilize, so you need to be patient. Hopefully your vision will stabilize soon, and correction will allow for improved vision. Dr. Arthur Epstein
Q: I have had cornea transplants in both eyes. Four years ago my right eye was damaged, and disease is progressing. Is it normal for an eye to be painful and feel swollen inside? D.J.
A: Pain is never a good sign. It is the body's way of drawing your attention to a problem. Pain after a transplant can be a sign of rejection, a potentially serious complication where your body rejects the transplanted corneal tissue. You should consult with your doctor immediately, if you have not done so already. Dr. Arthur Epstein
Q: I have been diagnosed with keratoconus. I'm studying electrical and software engineering. Does using the computer for more than seven hours a day affect my eyes? E.
A: Extensive computer use can decrease blink rate and lead to dysfunction of the meibomian glands and subsequent dry eye. But I am unaware of any reliable data suggesting that computer use can worsen keratoconus or speed its progression.
Just make sure you do not rub your eyes. Eye rubbing is believed by many to be linked to keratoconus and its progression. Dr. Arthur Epstein
Q: I am a 26-year-old man. My sister has keratoconus, but I don't. However, when she wanted to have LASIK, she was told that neither of us (her brothers) should have the surgery. Should I not have LASIK? M.
A: Keratoconus does have a hereditary basis, so the surgeon was being very cautious in advising your sister and you to approach LASIK with caution. However, to fully and most accurately answer your question: You first need a complete examination, including refraction, computerized corneal topography and pachymetry.
Topography shows the shape of your cornea and can reveal even early keratoconus or the tendency to develop it. Pachymetry measures the thickness of the cornea, showing overall thickness as well as areas of thinning indicative of keratoconus. Finally, a refraction determines your prescription and how much tissue would have to be removed during the surgery, which would be an important aspect of evaluating risk.
If all measurements are normal or acceptable, a surgeon would most likely feel comfortable in recommending LASIK. Keep in mind that all surgery has some risk, but the more information you have, the amount of risk can be minimized. Dr. Arthur Epstein
Q: I'm 25 years old and in my fourth week of pregnancy. I was told that I have mild keratoconus affecting the left eye. How safe is corneal crosslinking? And how badly will things go if I wait until after my pregnancy before undergoing the CXL? B.
A: Pregnancy can cause significant hormonal shifts and changes to the shape of the cornea. While crosslinking is a reasonably safe procedure, if your keratoconus is mild, I would suggest you wait until after your child is born before having any elective surgery. Dr. Arthur Epstein
Q: I have undergone CXL (corneal crosslinking) in both my eyes. My left is weaker than the right. Right now I am pregnant. Will it worsen the left eye even after the CXL procedure? S.
A: Without the ability to predict the future there is no way to accurately answer your question. Pregnancy can cause temporary shifts in corneal shape, which can reverse after delivery. Your prior procedure may reduce the likelihood of that somewhat, but since every person is different, it's impossible to predict the outcome with certainty. Dr. Arthur Epstein
Q: I am a photographer, and my eye doctor says I have keratoconus in my left eye. He gave me contacts, but they made things much worse! I dutifully wore them for the 60 days he told me to, and by the end I was doing 10 hours a day comfortably. However, my vision was always blurry, actually worse than without anything at all. He said that he needed to guess at the prescription that my eye would actually need, and then adjust from there.
Is it possible to get a contact lens with no prescription at all, to bring the shape of the lens to where it should be, and then check to see what prescription is necessary? I have now been to four different eye doctors, and no one has been able to get me anything close to clear sight in this eye. J.G.
A: As a photographer myself, I feel your pain. Fitting keratoconus is a bit of an art form as well as a specialty. Modern lenses make the process easier and generally more successful, but it can still be complicated and time-consuming. The advances in lens design can mask the complexity of the fitting process. As a result, some less experienced doctors underestimate the difficulty.
I would recommend that you try to find someone with a good deal of experience in fitting keratoconus patients. The National Keratoconus Foundation maintains a list of doctors who should be keratoconus contact lens savvy.
To answer your question: No one should be "guessing" a prescription. A doctor fitting keratoconus patients should have multiple keratoconus trial lens fitting sets, which are used as you surmised to determine the fit and the prescription of the lens to be ordered. Lenses that are ordered may need to be further refined, but they should be relatively close.
You should not be wearing lenses that you cannot see out of or are uncomfortable. Today, many fitters prefer larger scleral or mini-scleral designs, which are very comfortable and provide excellent vision.
Among the challenges of fitting a photographer, especially if you are over 40, is designing lenses that will work well in a normal visual environment as well as through a viewfinder. A skilled fitter may request that you bring your camera with you so the prescription can be carefully adjusted to insure optimal overall performance. In some cases, adjustment of the diopter setting on the camera (if present) may be necessary for fine-tuning.
Keep in mind that fitting keratoconus lenses can vary from simple and quick to a many-visit, long-term and sometimes costly effort. It will be worth it. Dr. Arthur Epstein
Q: I'm age 86. My doctor recommends cataract surgery because my lenses are getting cloudy. I have keratoconus of unknown severity. Should I have the surgery? L.B.
A: Cataract surgery is now so incredibly advanced, we're seeing better results than even a decade ago. While keratoconus could complicate the surgery especially calculations for the intraocular lenses used it is not a contraindication. However, it is important to differentiate vision loss caused by the cataracts vs. that caused by the keratoconus prior to having surgery.
The ultimate decision on whether to have surgery should be based primarily on how functional and acceptable your current vision is, your vision needs and the likely outcome of the surgery. Discuss this with your doctor, but don't be afraid to seek a second opinion if you are concerned. Dr. Arthur Epstein
Q: After laser surgery, my ophthalmologist has detected more advanced keratoconus in my right eye. For several months, my vision seemed stable. But since 10 days ago, my vision has regressed.
What caused such a rapid decline? What are the precautions to be taken daily? Is food a factor? Should I stop browsing the Internet, reading books, etc.? My doctor said that crosslinking and implantation of rings are needed. Should I have this surgery at any ophthalmology practice, or are there practices that have better equipment? G.
A: I am somewhat confused by your note. LASIK is generally contraindicated in patients with keratoconus, as it can lead to rapid and progressive additional thinning of the cornea and worsening of the keratoconus.
In some cases, apparently normal patients develop corneal thinning also called ectasia after laser surgery. This is most common in patients with higher degrees of correction and thin corneas.
At this point, crosslinking and possibly ring implantation would probably help stabilize your corneas. I would recommend you consult a specialist with corneal training. Dr. Arthur Epstein
Q: Some weeks ago I was diagnosed with keratoconus and was prescribed rigid contact lenses. I have been wearing them for a week now, but the problem is, I don't feel that my vision is really better. Is it normal that your vision becomes better over time, after adaptation to the lenses? Or is there a problem with the lenses, since my vision wasn't corrected immediately? M.E.M.
A: Adapting to GP lenses may take some time. In general, vision should be substantially better than with spectacles or no correction, but how much improvement depends on the severity of the condition and how long you have had keratoconus. Being fitted properly can be a process, so be patient and work with your fitter to refine the correction. Dr. Arthur Epstein
Q: I saw a patient who's had keratoconus since he was young, but now he is in his 30s. He was wearing glasses but was later switched to contact lenses. Of late he says that he no longer uses the contact lenses because they have been falling off quite often.
Upon examining him I discovered that he now has scarring of both corneas on the upper parts. He also has scarring of the retina, such that his vision is reduced. What is the best option for improving his vision other than with contacts? Can I refer him? What is the cost for whatever is to be done? R.J.
A: A precise answer to your question is impossible without actually examining the patient. Some retinal scarring has little effect on vision. But scarring at the macula can wipe out central vision. Likewise, corneal scarring can be extremely variable in keratoconus, depending on the cause.
From the information you have shared, it is likely that the lenses were lost because they no longer fit well. This could be from natural progression of the disease, corneal hydrops or other factors.
The first step in rehabilitating this patient is to determine his potential vision with either a diagnostic GP or scleral lenses. Even a pinhole would be helpful. It is important to determine how much of his vision loss is due to keratoconus, which can be corrected, and how much is retinal, which may not be correctable. Once you determine this, appropriate referral can be made.
Regarding cost, it is impossible to predict, as it varies by technology and professional fees as well as by region. I wish you success in assisting this patient. Dr. Arthur Epstein
Q: I was diagnosed with keratoconus in my late teens and had a corneal graft at 19. I have been wearing GP lenses ever since. I have frequently asked about the suitability of glasses and always been told that the lenses were preventing the progression of the keratoconus.
Now I'm 40 and am being told that I can wear glasses and this will not affect the progression of keratoconus. I understand that without examining me or looking at my doctors' notes it would be hard for you to give me a direct answer. But does this sound plausible? I'm concerned, as I have struggled for more than 20 years and don't want to aggravate the condition now that things seem stable. M.U.
A: There is an unfortunate lack of data regarding the effect of contact lenses on the progression of keratoconus. But in my experience, properly fitted lenses appear to act as a splint, which can help stabilize the cornea. Likewise, poorly fitted lenses can hasten scarring and progression of the disorder.
That said, occasional wear of spectacles if they can be tolerated is reasonable. You will be giving your eyes a "break" from your lenses and also have a backup in case you lose or are unable to wear your lenses. The biggest hurdle to acceptable spectacle wear will likely be refractive, due to prescription issues or differences between the two eyes. Dr. Arthur Epstein
Q: I wish to know whether sleeping prone and swimming have any effect on keratoconus. S.
A: Most activities, including swimming and sleeping, will not have any impact on the progression of keratoconus. However, if you sleep in a position where your eyes are aggressively rubbed by a pillow or other object, some experts believe that this can be detrimental.
Wearing nighttime eye protection to shield the eyes from mechanical trauma would then be advisable. Dr. Arthur Epstein
Q: Have you heard of any situations where keratoconus actually reversed and healed? M.J.
A: In more than 30 years of treating keratoconus patients, I've yet to see spontaneous resolution. However, poorly fitted rigid lenses and some soft lenses may cause transient corneal changes that can mimic keratoconus and can reverse. Dr. Arthur Epstein
Q: My son has keratoconus and has had crosslinking done on both his eyes twice. He uses hybrid contacts, and they have given him better vision. He still has a problem with allergy. What are his chances of stable vision? M.E.
A: It is difficult to predict long-term stability with keratoconus, even when treated. The disorder is highly variable, and there are large differences between individuals. Avoiding eye rubbing despite his allergies is highly advised, as this may worsen the condition. Dr. Arthur Epstein
Q: My ophthalmologist told me I have advanced keratoconus when it was too late. Now my left cornea is 57mm. He advised a laser operation. I am so worried that I might need a transplant. I would like your advice, because for 10 years I have been receiving treatment for astigmatism, and I don't want to make another mistake. C.O.
A: I am not exactly sure what your doctor is referring to when he describes your cornea as 57mm. Perhaps he said 57 diopters, which would mean, at least to me, that you have moderately advanced keratoconus.
Astigmatism is commonly an early sign of keratoconus, so I do not believe that you have made any mistakes. Likewise, I don't know what type of laser procedure he is referring to.
There are a number of different surgical procedures and a variety of advanced contact lenses that may be appropriate for you. In my experience, I always attempt the most conservative first, which is usually contact lens correction. I suggest you discuss this with your doctor, and if uncertain, it is always wise to seek a second opinion if feasible. Dr. Arthur Epstein
Q: I have been suffering from keratoconus for the past several years. At first I used GP lenses. Then, after my marriage, I used Rose K lenses for five or six years. Now the lenses are uncomfortable and my eyes are itchy, so I visited a cornea specialist in my town, and he gave me scleral lenses.
Although my vision improved with these lenses, once again my eyes were uncomfortable, and I can't wear the lenses for more than two or three hours. Also I have had several headaches.
I would like to know if the piggyback method is a good solution, or if there is an option other than scleral lenses.
Also I checked the Internet about keratoplasty or corneal transplant, but my doctor said these are last-resort options and that a transplant can fail after a period of time. M.G.
A: First, I agree with your doctor about reserving transplant surgery as a later option. Although it is among the most successful procedures performed on the body, still it involves significant risks.
With current technology, modern scleral lenses are among the most comfortable and visually successful methods of correcting for keratoconus. Without seeing you, it is difficult to know exactly why you are experiencing such problems, but from your description, it sounds like a fitting issue perhaps complicated by ocular allergy.
You should not be experiencing this, and you should be able to wear your scleral lenses for an entire day, even with very advanced keratoconus. In addition to fit, your problem may also be due to material or solution issues.
I would urge you to return to your fitter and ask them to re-evaluate the fit of the lens and perhaps try to improve it. If you are uncertain, seek a second opinion. Dr. Arthur Epstein
Q: I had Intacs implanted three months ago. I have had checkups with my doctor, but I continue to feel the foreign body in my eye as if it were swollen. It causes irritation regularly, and only Pred Forte quiets it down.
My doctor has asked me to use the lubricant more often, since the wound from the laser cut is still there. I go crazy with the irritation sometimes during the day. How long should it take for the eye to heal? Is this normal, and can I continue to use the Pred Forte when needed? My doctor gave me Coxylan to use in place of the Pred Forte, but this doesn't help much. D.M.
A: Everyone heals differently, but you should be improving fairly soon after surgery. The rings can effectively lift the corneal surface, creating what are essentially "hot spots" as the lid sweeps over the raised area. I suspect that's why your surgeon recommended frequent use of lubricating drops.
It is also possible that the ring segments were placed slightly eccentrically, causing the wound to be constantly re-abraded. The placement can be precisely evaluated using a device called an anterior segment OCT (optical coherence tomography), and if necessary, the segment can be repositioned. Regular long-term use of Pred Forte is not advisable, as it can lead to cataracts, glaucoma and corneal problems. Dr. Arthur Epstein
Q: I am a 27-year-old male and a medical student in my final year. I have keratoconus at a mild stage and have undergone corneal collagen crosslinking.
My dream is to be a surgeon. How much can my keratoconus affect my dream, especially in microsurgery? M.
A: Keratoconus is notably unpredictable, so it is very difficult to predict the course or severity for a specific patient. It appears likely that collagen crosslinking may help stabilize the condition. And I always advise patients to avoid eye rubbing, which I believe helps slow any progression.
In the past, with other medical students, I have recommended specialties that were less visually demanding. If you are certain you want to be a surgeon, specialty areas like orthopedic surgery may be a wiser choice than neurosurgery. Dr. Arthur Epstein
Q: I was diagnosed with keratoconus 22 years ago. Sometimes I have trouble opening my eyes in the morning without it being painful. Is this caused by the bulging shape of the cornea? Also, my peripheral vision seems to be increasingly compromised in recent years. Is this also a symptom? L.
A: It is important to keep in mind that keratoconus can co-exist with other eye problems, including dry eye, glaucoma and cataracts. Pain upon opening the eyes when waking is often associated with poor lid closure and sometimes, lack of the protective Bell's reflex, which rolls the eyes up beneath the lids.
Keratoconus is also associated with floppy eyelid syndrome, which increases the likelihood of nighttime exposure and morning pain or irritation. Finally, dry eye has to be considered as a possible cause.
I suggest that you have your doctor evaluate you to determine why you are having these symptoms. Doctors are human, and they sometimes get so wrapped up in the patient's primary complaint that they can miss some of the forest for the trees. Bringing your symptoms to your doctor's attention will help insure that they receive the attention they deserve. Dr. Arthur Epstein
Q: I have keratoconus in both eyes and have undergone corneal collagen crosslinking (CXL). But the sight in my right eye is very low. Is there any advanced treatment to recover sight? Is LASIK surgery helpful? A.K.
A: I am sorry to hear of your poor vision. CXL can help stabilize keratoconus, but it usually doesn't effectively correct vision without using some other means.
LASIK is generally a very bad idea for someone with your condition, because it can severely destabilize the thin corneas that accompany keratoconus.
There have been significant advances in scleral contact lenses and lens materials for severe keratoconus. I advise that you consult an expert in fitting these lenses. It may be the most effective way to restore some of your lost vision. Dr. Arthur Epstein
Q: Five years ago I was diagnosed with keratoconus in both eyes: middle stage in the right eye and mild stage in the left. That year I had corneal collagen crosslinking in both eyes. But now my vision is degrading.
I have had various eye tests regularly, such as corneal topography and keratometry, and those show that the shape of the corneas are the same as after the crosslinking. But still I am noticing vision problems. M.
A: Sometimes changes to the cornea too subtle to be picked up even by advanced instrumentation can adversely impact vision. For example, increased higher order aberrations can degrade vision but are not picked up by most modern instruments.
Of greater concern is the possibility that something other than keratoconus is causing your visual loss. I suggest that you have your doctor perform a complete exam. If all is normal, he or she can send you to have aberrometry performed to see if that is an issue. Dr. Arthur Epstein
Q: Have they perfected the multifocal contact lens for keratoconus? K.
A: We have had some success in fitting patients with keratoconus with multifocal contact lenses; however, the technology is far from perfect. I would check with your contact lens fitter to see if they feel you are a good candidate for currently available lens designs. Dr. Arthur Epstein
Q: I am 35 and have moderate to advanced keratoconus with a very thin cornea. Can I swim with goggles (without my contact lenses), or is the risk of infection too high in water? J.
A: Risk is always relative. Keratoconus, in the absence of disruption to the cornea, should not significantly increase infection risk. Corneal thickness should not be a factor as long as the corneal surface is intact.
Contact lens wear has been associated with increased risk of acanthamoeba infection. Avoiding direct water contact and swimming with goggles is wise. Dr. Arthur Epstein
Q: I had corneal crosslinking (CXL) in my right eye last September. My scans after five months show some improvements, but I am feeling that my vision is worse than it was before. I have attached links to the scans.
As you can see, scans after 10 months are worse than the scans after five months. Does that mean the CXL failed, or is it common? My doctor says the eye is stable, but I don't know why he said that even though it does not appear so. What do you think is my present condition? H.B.
A: Topography and pachymetry are two of many elements that we use to monitor corneal stability and progression of keratoconus. Interpreting this data must be done in conjunction with a physical exam.
From the scans alone, I agree with your doctor; you do seem reasonably stable. Because keratoconus is inherently unpredictable and often progressive perhaps why he or she advised the surgery in the first place there is no way to know what your corneal findings would have been without treatment. Therefore there is no way to state unequivocally that the procedure succeeded or failed. If your vision has diminished, a new correction may remedy the problem. Dr. Arthur Epstein
Q: I am a 55-year-old male with keratoconus. An eye hospital in Turkey is using a type of microwave technology to reshape the cornea, and I was wondering if you know what sort of results they are getting. D.
A: Without more information regarding the specific procedure, it is hard to offer information regarding outcomes. Microwaves heat the cornea, resulting in shrinkage of its collagen structure. The Keraflex system, which combines microwave thermokeratoplasty or corneal reshaping with collagen crosslinking, is currently under investigation. The procedure was initially developed and investigated in Turkey.
My advice is to consider this experimental for now. The only data published on the technique was in November 2012, and it showed no lasting benefit. However, subsequent advances in the technology may lead to improved outcomes. Dr. Arthur Epstein
Q: What is the minimum corneal thickness for the Keraflex treatment for keratoconus? A.J.
A: The Keraflex procedure is currently undergoing clinical trial in the United States. Minimal corneal thickness at the thinnest point must be greater than 350 microns as measured by an Oculus Pentacam for participation in the clinical trial. Dr. Arthur Epstein
Q: I've found a lot of information on treatments and surgeries that help correct vision impairment in keratoconus patients. But I haven't been able to find too much additional information about general eye care best practices, specifically tailored to those with keratoconus.
Are there any specific habits you suggest to generally maintain eye health (using a lubricant before bed, using a certain kind of healing/soothing drop after contacts are removed, taking dietary supplements to support corneal health, etc.)? R.D.
A: That's a great question. Unfortunately, there is a lot of opinion and conjecture, but little that is definitive regarding nutrition or lifestyle changes that can benefit keratoconus patients.
There is a well-recognized association between allergy and keratoconus, and I have also found that dryness is a frequent complaint. Eye rubbing should be avoided at all costs, and ocular allergy should be treated aggressively using a topical medication when needed. I usually recommend that patients take 2000 mg or more of a triglyceride-based omega-3 supplement daily.
As for drops, anything that improves tear stability and lubricity is a step in the right direction. I like hyaluronic acid-based products as well as the more advanced lipid supplement-based drops. Check with your doctor to make sure the drops are compatible with your lenses. Dr. Arthur Epstein
Q: In my 20s I wore toric, rigid gas permeable lenses. I was never told I had keratoconus. In my 30s I had RK surgery. I had to wear one lens afterward, but it was a soft lens. I went along great until my mid-40s. Obviously I needed readers, but then my vision started to really change.
Now, at 58, I need a +1.50 lens for distance and +3.25 lens for close-up. My doctor tells me that my cornea is thin, I have keratoconus and he would like me to have collagen crosslinking. I have recently had some other health issues, and I want to wait a year before doing that. He tells me that he believes years of wearing RGPs and the RK surgery caused my problem. I have no family history of anyone having keratoconus.
My question is this: If RGPs possibly caused my problem, why would he want me to consider using them now for better vision? If I "piggy-back" the RGP, would that keep it from causing more thinning of the cornea? I have tried regular soft lenses, and I think I want to try the new daily soft toric that I read about, before going with RGPs again. I just want to be able to drive, do my computer work and read my book.
He made me new glasses that are progressive lenses (which have worked in the past), but this new prescription is not working at all. I go back next week to see about changing those and trying a different contact lens. Any suggestions? S.W.
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A: You have a number of problems that make things a bit complicated. First, there is no evidence that contact lenses cause keratoconus. I do believe that poorly fitted rigid lenses can cause corneal warpage that can mimic keratoconus, but that is generally reversible. RK surgery, on the other hand, depending on the technique and skill of the surgeon, can lead to significant corneal irregularity and instability. There is a blurry line between what we describe clinically as post-surgical ectasia and keratoconus, and the two terms are often used somewhat interchangeably.
Although our patient population may be atypical, we see very few post-RK patients who are doing well years after surgery and far more who have problems similar to what you are experiencing. RK can lead to frequent refractive shifts and distortion, which may be exacerbated by your thin corneas. While your RK may be contributing to additional thinning, the benefit of collagen crosslinking in post-RK patients is debatable. There are very few studies in the literature, and none show long-term benefit.
In cases of corneal irregularity, rigid or scleral contact lenses work by essentially replacing the distorted front surface with the perfectly smooth surface of the lens any irregularity is filled in by tears. If your corneal irregularity isn't too bad, soft toric lenses may be effective, but their range of correction will be limited compared with rigid lenses. In any case, properly fitted lenses can significantly restore your vision without causing any damage. Personally, I also believe well fitted rigid lenses may help slow or possibly eliminate further thinning. A piggy-back may be an option, but it's used far less now with advances in scleral lens design and materials.
In addition to your other issues, you have become presbyopic over the years and will require correction for near. This can sometimes be incorporated in contact lens designs or can be accomplished with readers.
Finally, philosophically, I believe that less is often more when it comes to managing most eye problems. If a soft lens provides good vision and relative stability, that option makes sense. If not, a rigid lens may need to be fitted. Dr. Arthur Epstein
Q: I am suffering from keratoconus and was diagnosed with it two years ago. Since then I have been wearing RGP contact lenses. How does one know if the progression has stopped or not? I hope the disease is not fatal. A.
A: No worries. Keratoconus is not a fatal condition, though it is a lifelong one. Progression is quite variable, though it slows and sometimes stops over time. It's hard to predict when that will happen. Dr. Arthur Epstein
Q: I had corneal collagen crosslinking treatment in both my eyes. Now it is about one year after the surgery, everything is alright and I am not wearing any lenses. But my vision is a little weak, as I can't see far-away things clearly. Will my vision degrade if I watch TV and use a laptop for quite a while? If so, please tell me how to protect and improve my vision, as I am a student of IT engineering. B.M.
A: While there is some evidence that prolonged near work leads to increased myopia, reading and other close work should have no effect on your keratoconus. Make sure you avoid rubbing your eyes, which is a far more likely cause of damage and progression. Dr. Arthur Epstein
Q: My son has suspected keratoconus. He is 12 years old. I am terrified for his future, as a very able sportsperson and student. Should he have corneal collagen crosslinking as soon as possible? Are there any negatives to having it at his age? S.W.
A: Different practitioners may have different perspectives regarding crosslinking in younger patients. I tend to be conservative by nature. With a patient your son's age, less is often more, since the severity and progression of his keratoconus is unknown. Collagen crosslinking appears safe, but as it is a relatively new procedure, long-term experience is lacking.
A conservative approach for your son would be to manage allergy if present and insure that he avoids rubbing his eyes. If his vision is acceptable in spectacles, I would continue with them, but don't hesitate to have him fitted with appropriate contact lenses if and when it becomes necessary. Just make sure you find a competent contact lens fitter. You are fortunate that there are many in the UK. You might contact the British Contact Lens Association for a recommendation. They are an excellent group.
I have managed many hundreds of patients who have keratoconus. I can assure you that the overwhelming majority lead relatively normal lives. New contact lens materials and lens designs, as well as surgical advances, have made and will continue to make a huge difference in our ability to manage patients with keratoconus. Dr. Arthur Epstein
Q: My son has just been diagnosed with keratoconus at the age of 22. He also has the genetic condition called hereditary ectodermal dysplasia.
Soft contact lenses have not been an option in my country (Australia). Are they new on the market in the United States? What is it that the contact lenses actually do for the condition? R.B.
A: As you probably know, hereditary ectodermal dysplasia is a relatively rare genetic disorder that can affect various systems of the body, including skin, teeth, hair, extremities and possibly the eyes. While there have been reports of keratoconus in patients who have hereditary ectodermal dysplasia, there is no way of knowing if your son's keratoconus is directly associated or unrelated. Regardless, the primary concern remains how to best manage his condition.
Typical treatments include conventional soft contact lenses, keratoconus-specific rigid designs, scleral or semi-scleral designs and a variety of surgical interventions. Selecting the most appropriate treatment depends on the severity of the condition and patient response. As a general rule, I recommend the most conservative treatment first.
Contact lenses correct or functionally replace the irregular corneal shape and are among the safest and most effective treatments for keratoconus. Years of experience also suggest that a properly fitted lens may "splint" the cornea and help slow or halt keratoconus progression. Recent advances include better rigid lens designs, hybrid soft-rigid lenses for keratoconus, advances in materials allowing for better (large) scleral lenses and keratoconus soft lenses that have been amazingly effective.
I am not certain of what is currently available in Australia, but in the U.S. we have several soft keratoconus designs, including KeraSoft IC by Bausch + Lomb and NovaKone by Alden Optical. High rates of success have been achieved with both lens designs.
In case you are interested in pursuing soft lenses for your son, I am emailing you some information on finding an eye care professional in Australia who can help you. Dr. Arthur Epstein
[Page updated October 5, 2016]