Massachusetts Eye and Ear – Waltham

2.5 years ago I had a Cross-​Linking Epithelium-​On procedure on both eyes to stop (and even reverse) the progression of keratoconus disorder in my eyes. My corrected vision was ²⁰⁄₁₅ at the time with glasses (prescription: –4:00) in my good eye and I was hoping to make it stable so I could keep using «glasses» and not hard contact lenses. This procedure was a part of trial studies ongoing in the US.
At 1 year after the procedure, Dr. Talamo and I realized that the procedure had failed and needed to be repeated in my good eye. My corrected vision was I believe ²⁰⁄₂₅ by that time, so it was reduced by 2 lines. I was told that only a few of their cases have experienced failure and they were stabilized after a repeat procedure was performed.
The Cross-​Linking procedure was repeated on my good eye for a second time, but the epithelium (the thin layer of skin covering the cornea) was removed this time (Epi-​Off) to allow better absorption of Riboflavin. For one year after this second procedure the topographic tests showed fluctuations in my vision, and my best corrected vision worsened to 20/​40ish. AT 1.5 years milestone after the Epi-​Off, right now my best correction vision is improved to 20÷25−20÷30 (still worse than what it was 2.5 years ago before Epi-​On) and the glasses prescription for my good eye is improved to –2:00 and the topographic images indicate that the cone is flattened, but also spread further. But my double vision was & is getting worse constantly and I have been developing monocular diplopia after the Epi-​Off Cross-​Linking (=I see two of everything), which I was told that «I just have to accept it and live with it».
I have got considerable amount of corneal HAZE (grade 2 out of 4, to be more specific) due to the poor recovery of epithelium caused by Epi-​Off procedure. The corneal thickness was at 475 micro-​meters before the Epi-​Off procedure, was down to about 400 micro-​meters right after the epithelium was removed, and after 6-​months the corneal thickness was stabilized at 425 micro-​meters till now, so I guess that the epithelium did not fully grow back and only healed partially. The corneal haze did not improve and in fact has been slightly getting worse over the time. I am having some difficulties driving at night due to severe glaring, haloing, and ghosting caused by head lights or traffic lights. For me everything and every color is faded, pale, and with lower color intensity, making it more difficult to tolerate the doubled vision. It frustrated me every day, and in fact, every minute of the past year.
*** PROS:
— Dr Talamo, Dr Zar, and Dr Hatch are all respected and great doctors.
— After I talked about other places charging lower fees, I got a discount taken out of 8’000 $ total cost for Cross-​Linking procedure on two eyes (the procedure is out-​of-​pocket).
— 1.5 years after the second procedure (epi-​off Cross-​Linking), now I am told that the topographic images taken from my good eye show improvement and flattening, the only think that lowered my frustration.
— If the Cross-​Linking fails, a repeat procedure will be performed, free of charge for the second time. However it is not easy to prove how the vision is changing with just words.
*** CONS:
— The epithelium-​on Cross-​Linking procedure I had 2.5 years ago did not work. Failed in convincing my doctor that my vision was becoming worse, I had to draw some excel-​sheet diagrams based on the measured parameters of my eye tests by other clinics in Boston to make my point to the doctor. Finally Dr agreed that the procedure was actually failed.
— While I was told that «there is only 9% chance of corneal haze that should be resolved within 6 – 12 months after the procedure», I have gotten considerable amount of haze in my good and dominant eye that unfortunately, I will have to live with this cloudy vision for the rest of my life. I would personally not had agreed on a Epi-​Off Cross-​Linking procedure if I knew there is a much greater chance of permanent corneal haze.
— The repeated surgery was performed using a different protocol (Riboflavin concentration, etc.) than the first procedure, and I was not informed of that fact until 5 only minutes before the surgery (in the surgery room), and had to quickly decide to whether proceed or decline treatment at that time. There are journal articles recently published on this new protocol, saying that it is less effective than the previous protocol. For example an article conclusion says:
«efficacy in reversing topography features of keratoconus with use of 0.5% hypotonic riboflavin seems to be lower compared to the reported results with „standard“ 0.1% riboflavin» [1]
[1] Corneal Collagen Cross-​Linking with and without Epithelial Removal: A Contralateral Study with 0.5% Hypotonic Riboflavin Solution.
— The staff at this clinic are good, but not great. I see new staff every time I go there and they sometimes don’t know what they are doing.
*** I will update my review over the time