We’ve had an eye condition (retinopathy of prematurity) that caused us to be legally blind all our life. About ten to maybe fifteen years ago, we developed a cataract on our left eye. This is a known complication. We’d been operated on a cataract on our right eye in 1993, without a lens implant cause our retina specialist did the surgery. The cataract specialist at the Rotterdam eye hospital didn’t feel it’d have any benefit so refused to operate on us. In 2004, we saw an eye doctor for an unrelated problem and our father offhandly asked whether cataract surgery would make any sense. The doctor said that we’d have to decide whether we felt it could restore any sight. He didn’t offer any prognosis or exams that could predict this. Of course, we weren’t there for the cataract, and this was not a university hospital, so I understand.
Over the years, we’ve often had thoughts of what if, but I pushed them away believing I’d upset our parents if we didn’t accept our total blindness. After all, our parents had stopped taking us to the eye doctor in 1995 because, or so I thought, they felt we were blind anyway. Now that I’ve discussed the current round of eye doc visits with them a few times, I realize they probably fared on the advice of my retina specialist and on their gut instinct, having the best of intentions in mind.
About a year ago, I started discussing the possiblity of cataract surgery with my staff. One of the nurses, the first I told, was immediately hyper, and said that it’d be great if we could get even a tiny bit of vision back. I wasn’t so sure, thinking I’d upset the littles and re-enact the trauma of our vision loss if I went through the ophthalmology department again. After discussing the issue with a few other nurses, including my named nurse, I decided in January to ask my GP to refer me to my local university hospital’s ophthalmolgoy department anyway. We went there for our initial appointment on March 8, and were taken very seriously. The optometrist measured my vison, which was no more than a tiny bit of light perception. That hurt some of us. The ophthalmologist decided to order an ultrasound of my eye and to ask for my old records from Rotterdam and the eye doc I’d seen in 2004.
The ultrasound and a huge amount of other tests were done March 26. The ultrasound showed our left retina was still attached (they scanned our right eye too, but that had a total retinal detachment) and the optic nerve was fine, but there were some problems with the sclera (that’s part of the retina if I remember correctly) and the eye was very small (microphthalmia). The doctor, same as on March 8, hadn’t yet received our records, so he’d get me a new appointment if he got them.
So that new appointment was today, this time with different doctors. First, we saw the resident, who explained the complicatedness of cataract surgery in our case. She said that normally surgery is done under local anesthesia, but if we couldn’t handle this, she could ask for general anesthesia should surgery be done. I was a bit stoic but our husband said we’d already had difficulty handling eye exams, so general anesthesia may be best. Then the doctor explained that she had gotten my records but couldn’t read them. This made it hard for her to say how much we might gain from surgeyr. “What do you think?” she asked. Argh, I have no idea.
The specialist, one of the two doctors doing cataract surgeries in this hospital, came in and apparently either could read my records or somehow otherwise figured stuff out, cause he said we might gain hand motion vision. This translates to about 1/100 to 2/100 acuity. He apparently considered this worth enough not to kick me out of his office for. The resident had asked whether I would prefer to go for surgery, and I said yes I would. The specialist did explain the risks, which included retinal detachment and bleeding, but then he left the decision pretty much with us. I decided to get us put onto the waiting list for surgery.
Then we went to a nurse to have a load of flyers given to us and to discuss the nursing issues facing us once we’re going in for surgery. I did mention we have a dissociatve disorder, because I’d heard from someone in a similar situation a few years back that anesthesia could make this worse. The nurse had obviously never heard of this, couldn’t spell it, and I was too tired and unsure of myself to mutter “multiple personality disorder” or some equivalent of it. We have an appointment with the anesthesiologist on July 1, and it may take forever before we’re called in for surgery. Oh well, after having had no vision for ten or more years, a wait of so many months doesn’t matter to me.
Katinka
