Keratoconus

My 15 year old son was also diagnosed with keratoconus this last year. He had the cross linking (cxl) procedure done with Dr. Geske at Kaiser on both eyes. One over spring break, the next over summer. The procedure itself was relatively easy for him, with the most acute pain happening in the hours just after. He was back to normal in a couple of days. We did the cross linking without too much hesitation as it seems to be the best and most direct way to avoid having an eventual corneal replacement. Watch (or don’t if you’re squeamish) videos of both procedures and see which looks worse! We’re just a year out from diagnosis and have no regrets moving quickly forward with the treatment.

Hi,
My husband was also diagnosed with Kerataconus as a teen and had two corneal transplants.
He sees Dr. Demartini in Oakland.

I ran across an article about a Kaiser doctor who's specializing in kerataconus.  Hope this helps! Naveen Chandra, MDOphthalmology, KP Diablo Service Area Corneal Crosslinking For 15 years Dr. Chandra witnessed the deteriorating vision of patients diagnosed with keratoconus, while at the same time knowing that people with the same condition in other parts of the world had access to a procedure called corneal crosslinking that stabilized the disease. When the U.S. Food and Drug Administration approved the procedure in 2016, Dr. Chandra implemented a strategy to deploy the procedure, not only at Kaiser Permanente Walnut Creek, but across the region. Thanks largely to Dr. Chandra’s efforts, specialists across KP Northern California have performed more than 900 corneal crosslinking procedures since 2016, while signs indicate that the rate of corneal transplants is declining. Keratoconus is a progressive eye disease in which the cornea thins and bulges into a cone shape that deflects light, causing distorted vision. About 1 in 2,000 adults in the United States are affected by the disease, and up to 20% of them eventually need a corneal transplant. Corneal crosslinking, which first became available in Europe, is a minimally invasive, 70-minute outpatient procedure that stops keratoconus in its tracks by creating new links between collagen fibers that stabilize and strengthen the cornea.Because quick access to the procedure requires close collaboration between ophthalmology and optometry, Dr. Chandra developed a streamlined testing and referral system in anticipation of FDA approval to help patients navigate efficiently from diagnosis to procedure. This was particularly important for patients who already had keratoconus and were anxious for a cure. Thanks largely to Dr. Chandra’s efforts, specialists across KP Northern California have performed more than 900 corneal crosslinking procedures since 2016, and signs indicate that the rate of corneal transplants in KP Northern California is declining. “Dr. Chandra has a real passion for providing the best care to patients,” says Dr. Ken Grullon, co-physician-in-chief for the Diablo service area. “He stayed abreast of cutting-edge treatments for keratoconus, saw how convincing the data was for corneal crosslinking, and made sure our patients had access to this treatment as soon as it was approved. He really does exemplify what it means to be a TPMG physician.”

I hope you find someone locally to help you. If not, Dr. Brian Boxer Wachler in southern CA is an expert (you can Google him). An acquaintance of mine was recently treated for this disorder in his office. Her case was quite severe, and I believe she had a good outcome.

I don't have keratoconus, but I have had multiple corneal transplants.  I was distressed when my amazing ophthalmologist David Vastine retired, but he hired a thoughtful, gentle, kind young surgeon, Enoch Nam, who has been just great and well-trained in the most current treatments.  Highly recommend.