Author: Cryptic Anomaly
This second part of my recovery update focuses specifically on the Luxturna treatment, the vitrectomy required to deliver it and what recovery has actually looked like from surgery to the eight-month follow-up. The process has been longer and more layered than simply having surgery and waiting to see whether my vision improved since there was the physical healing, the restrictions, repeated trips to Toronto, changes in what I could see and then the gradual testing that showed whether those changes were actually stable. Looking back now, I think the most useful way to explain the experience is through the progression itself especially because each stage showed something different about how my eye was healing and how the treatment was beginning to affect the vision I still had.
Why I Chose Luxturna
My right eye has always been the worse of the two. I am legally blind in that eye while my left eye has low vision. Those two descriptions do not mean that I see nothing at all. Legal blindness is a clinical classification of severe vision loss yet the lived experience can still include some remaining vision. In my right eye, I can see light, shadows and larger objects, however, detailed visual information is extremely limited. This is important to explain because people often hear the word “blind” and immediately assume complete darkness when blindness exists across a much wider spectrum. In my case, the right eye still had something left to preserve, and that was the main reason I chose to treat it first. I was not expecting Luxturna to restore full vision; my intention was to protect what little vision remained and hopefully reduce the risk of losing even more of it.
In June 2025, my RPE65 mutation was confirmed through genetic testing by Dr. Bhola at CHEO in Ottawa. She later referred me to Dr. Dimopoulos at the University of Ottawa Eye Institute. From there, my case eventually moved into the Luxturna process with Dr. Héon at the SickKids Hospital in Toronto. Dr. Heon completed the necessary testing and counselling in August 2025 before presenting my case to the council responsible for evaluating Luxturna candidates. Luxturna is a gene therapy used for certain inherited retinal conditions involving mutations in the RPE65 gene and, in simplified terms, it introduces a functioning copy of that gene so retinal cells can respond more effectively to light. Delivering the treatment requires a vitrectomy, that is, the vitreous gel inside the eye has to be removed so the treatment can be injected underneath the retina. The medical explanation can sound fairly straightforward when it is reduced to a few sentences yet agreeing to have someone remove part of what is naturally inside your eye and inject gene therapy underneath the retina feels significantly nerve-wrecking when you are the person actually going through it.
Surgery Day
My surgery was done on 1st December 2025 at the Sunnybrook Hospital in Toronto with Dr. Kertes. A few days prior to the procedure, he wanted to see me one final time to make sure everything was fine and settled. This meant travelling to Toronto several days earlier so my mum accompanied me throughout everything. I was prepared in terms of what I needed to bring and organise but I still found being away from home uncomfortable once recovery began. There was nothing wrong with the AirBnB we stayed at but I simply wanted my own room, my own space and the familiarity of being somewhere that felt normal while my body was trying to recover. Surgery morning moved fairly quickly with preparation beginning around 8:00 am, the procedure starting around 8:30 and everything being finished by approximately 9:30. Local anaesthesia was used with sedation which meant I was in and out of sleep and did not feel the surgery itself. Oddly enough, one of the clearest things I remember is asking someone to wipe my nose while the procedure was happening.
I also recall when I was being taken out of the operating room. I heard members of the medical team telling me that I had done well and that the surgery had been successful. That was probably the first point where the surgical part of the experience felt finished. Recovery started immediately after that. I had to remain completely flat on my back for six hours without sitting up since the treatment needed time to stabilise inside the eye. The nurses monitored me throughout that period while the IV remained in my hand and assisted when.I needed help to use the bedpan for urinating. I eventually left Sunnybrook at around 5:30 pm but. after going approximately twenty hours without eating, my main nurse made sure I had something to eat and drink before I left. Six hours of lying completely flat does not sound like much until you are actually doing it and know that you cannot simply decide to sit up when you get uncomfortable. That part felt much longer in the moment than it looks on a timeline while writing this.
The First Few Weeks of Recovery
The first follow-up took place the day after surgery at the SickKids hospital where my post-operative care was handled by Dr. Héon and Dr. Vincent. The surgical bandage stayed on until that day because I needed to begin using the eye drops as soon as possible. Once it came off the physical side of recovery became much more intense. I immediately experienced nausea, cold sweats and pain while my vision in the right eye was extremely blurry and reduced mostly to light. I could also see the gas bubble moving around and experienced flashes of light. During those first few days I had strong headaches, significant light sensitivity, eye pain and redness around the areas where the incisions had been made. Extra-strength Tylenol helped with the headaches but rest was what helped most overall. The drop schedule was also fairly rigorous during the first week with two drops used four times a day and another used three times a day. At the one-week appointment, one of the drops was discontinued and the remaining two were gradually tapered over the following weeks. Recovery also came with restrictions that affected normal routines: I was only allowed to wipe my face with a damp cloth for cleaning, could not wash my hair, had to wear a plastic eye shield while sleeping and when going outside and could not travel via airplane while the gas bubble was still present in the eye. I stopped sleeping with the shield after approximately one month once the infection risk had decreased while regular hair washing did not restart until February.
That appointment was mainly about checking that the eye looked normal for that stage of healing and making sure I understood how to use the drops properly. We stayed in Toronto until 3 December before returning home, however, we had to return back the following week for the one-week check-up. That second trip was one of the more tiring parts of the early recovery because my body needed a lot of rest and travelling again so soon was very tiring. By that appointment, the gas bubble had reduced considerably and only a small bubble remained yet visually I was still mainly receiving light signals. There was no sudden moment where the bandage came off and everything looked significantly better; the recovery was much slower than that and most of the early progress had more to do with healing than with what I could actually see.
One Month to Three Months
By the one-month check-up in early January, the gas bubble had completely disappeared and I had started noticing double vision when focusing on smaller things such as text. Dr. Héon explained that this could happen during recovery and should stabilise as the eye continued adjusting. The pressure in my right eye was also slightly elevated at that time. It was thought to be connected to the surgery and prednisone, so it was checked again in early February by my doctor in Ottawa after the Prednisone tapering ended. By then, the pressure did returned to normal. February was when the physical side of recovery finally felt more settled since the redness, nausea and eye pain were completely gone. The recovery was no longer dominating everything physically which made it easier to start paying attention to the smaller changes in vision instead of simply focusing on whether the eye hurt or whether I was still dealing with restrictions.
The three-month appointment took place in mid-March once the eye had healed enough for proper post-treatment testing. Before that appointment, I had already started noticing that things looked brighter, I was more sensitive to light and there were areas in my peripheral vision where light started coming through where I previously did not notice anything. The testing supported what I had been noticing by showing improvement in night vision and some improvement in peripheral vision through additional light signals. In practical terms, I could detect certain light sources sooner and easier than before. This may not have been life-changing but it was enough that I knew something had shifted. I was also aware that my brain still had to adjust to receiving visual information that was previously absent or significantly reduced. This meant I did not expect every new signal to immediately translate into something useful or clear. There is still a difference between the eye receiving information and the brain knowing how to interpret it.
Eight Months
The eight-month check-up gave us a clearer understanding of what had actually changed since the improvement in darkness adaptation remained stable on the FST testing. The muscles in the right eye were recovering well. The pressure in both eyes was also good since the higher pressure that had shown up earlier in the right eye was resolved. The result that stood out most, however, was the comparison between the two eyes. In terms of darkness adaptation, my treated right eye was performing approximately 2.5 times better than my untreated left eye. That does not mean the right eye suddenly has 2.5 times better overall vision. It applies specifically to darkness adaptation and how the eye responds to lower levels of light. Considering that the right eye was originally the weaker eye and is the one in which I am legally blind in, that result made the improvement much easier for me to notice. The three-month appointment showed that there had been changes while the eight-month testing showed that those changes had remained stable instead of disappearing after the initial recovery period.
Acknowledgements
Lastly, I want to acknowledge the doctors, nurses and institutions that made this entire process possible because something like Luxturna does not happen through the work of one person alone. I am grateful to Dr. Bhola and her assistant at CHEO for confirming the RPE65 mutation and beginning the referral process, to Dr. Dimopoulos at the University of Ottawa Eye Institute for helping move my case forward and especially to Dr. Héon, Dr. Vincent and the team at SickKids for the testing, counselling, follow-up care and continued monitoring throughout the treatment process. I am equally grateful to Dr. Kertes, his administrative assistant and the surgical team at the Sunnybrook Hospital for performing the vitrectomy and Luxturna procedure, as well as the nurses who looked after me during the hours immediately following surgery when I could not sit up, needed assistance and was still coming out of sedation. Looking back at the process from the initial genetic confirmation to the eight-month follow-up, there were many people involved at different stages, and I genuinely appreciate the amount of specialised care, coordination and attention that went into giving me the opportunity to receive this treatment and preserve the vision I still have.
