**Warning: a picture with blood and bruising is to come further down the page
It has been a whirlwind since my last post. After reading it over, I am amused at how optimistic I sounded. Unfortunately I did experience complications that although I knew were a possibility; I can’t say I was entirely expecting.
A few days after Christmas I began to notice a dark shadow, somewhat like a crescent shape, in the bottom right peripheral corner of my right eye – the eye that had undergone cataract surgery 2 weeks before. I told myself not to panic and looked into possible explanations, hoping for something other than retinal issues. Several years ago I popped a blood vessel in the retina of my left eye (because of blowing my nose during a bad cold, no less!), and the spot it made in my vision looked slightly different than what I was seeing now.
In my searching I discovered the term negative dysphotopsia which can occur after intraocular lens implant and refer to perceived as shadows or dark areas in your visual field. I’d never heard of this before. From what I read it sounded like it could be a bit of a mystery to understand and treat, but I reasoned that perhaps this problem would be potentially less traumatic than an issue with my retina. I held out hope but as the night wore on I started to notice the dark shadow streak leftwards as I looked in that direction. I felt quite sure that I had to get my eye seen to.
I hoped to get an opinion from my retina ophthalmologist, who had been following me since I was a child, but she was away on Christmas holidays until after the New Year. She has referred me to the cataract surgeon, but we had never discussed what to do if I was facing a potential retina emergency. Despite many calls to my cataract surgeon’s office I was only able to leave a voicemail about my situation [the admin did end up returning my call a day after the below ordeal, somehow the message did not get passed on but when it did the surgeon called back quickly to send my report and wish me the best]. I presumed the fastest way to be seen by a doctor on call, as a person who is not a regular patient of the hospital ophthalmology department, was early in the morning through the emergency department. I dreaded going in and reasoned with myself that I’d just stop in for them to have a quick look, they’d tell me it was fine and I would continue on to work with a weight lifted off my shoulders.
I was the only person in triage at the ED, which was a bit of a surprise on an early snowy morning. I won’t go into detail about the nurse who asked me, in a shocked voice, “how do you walk around?? Can you see my face?!” after I told her I was visually impaired, nor the lack of help in filling out my paperwork even though I was clearly struggling and visiting the ED for eye problems. After all, I am quite used to that behaviour by now, even by health professionals [whom I hold to a higher standard, it seems]. In no time at all I was headed up to see the ophthalmology resident on call with a referral that stated ‘retinal detachment vs vitreous detachment’. That’s just to be cautious, I told myself.
The resident dilated my eyes and examined me three separate times amid his pager and phone going off constantly. I felt quite bad that he was the only one there to assess and triage an increasing queue of worried and antsy patients outside his door. I had a nice chat with a friendly woman in the waiting area who told me all about her retinal surgery the year before and how the clinic operates when it’s not closed for the holidays. These details were comforting and when she was told by the resident that the symptoms she was experiencing were not a sign of more retina problems, I felt even more hopeful of my situation. The resident took me over to the fellow for a second opinion. The first thing the fellow said after examining my eye was “It was very good of you to come in today and good of the resident to send you to me”.
Everything I have learned so far about how a hospital or our healthcare system works could not equip me for the moment when the doctor said, “You need emergency surgery. We can do it today. You don’t have any other medical conditions, right?”.
I froze as this blow landed. Even though I knew complications were a possibility, I was devastated and fearful.
“The lens in your left eye (not the eye I had come in for) is hanging by a thread [his words exactly], do you know that?”, he added. Unfortunately, I did have an idea based on my cataract surgeon’s assessment, though he had not put it that delicately. Hopefully that issue can wait for another day, I thought.
I have to say the fellow was very patient with me. I had a number of questions. I remember saying, as we were walking into the laser suite, “I’m sorry, I know I have a lot of questions, but this [retinal detachment] is the thing I’ve always been afraid would happen since I was a kid. And now it is happening.”
In the past I have felt careful about taking up too much time with each of my various healthcare appointments, but in this situation I felt a hefty weight of responsibility to manage my emotions, think rationally, and be able to ask questions in order to know what my options were and what I was agreeing to. If I was unable to do this during my time with the doctor I feared I would leave without peace of mind, be unsure in answering questions to my family and have failed the charge of being an ‘engaged patient’.
Did I do justice to this task? The simple answer is, I don’t know.
Mostly I was terrified so I kept talking. I wanted him to know everything he could possibly need to know about my eye and other health conditions. The fact that they did not have my prior history from my ophthalmologist worried me the most. They didn’t have my cardiac or surgical history either, though they could get most of those details from EPR (or so I thought..) and I could give them a copy.
I wondered if the fellow was being too aggressive [in hindsight I now wonder if my previous ophthalmologist was too passive]. I worried about his clinical judgement as a fellow, scrutinized his interactions with the resident, and tried to suss out if there were any political motivations behind his decisions, such as time in the operating room under his supervisor or another chance to gain experience using the laser. Through my fear I tried to ask questions that would give me some hint at these answers without sounding like I doubted him or that I potentially knew too much.
I wanted to trust him, I had to trust him. He was all I had in this situation. But, I also wanted to make the most informed decision about my care that I could, a decision I had to make with the acute sense that time was running out. I was simultaneously grateful and daunted. This felt like a very difficult balance act – with my vision, and in my mind, my life at stake.
My options were presented as:
a) to try the laser [photocoagulation], which sort of scars or welds the retina back into place and (hopefully) prevents the tear from spreading if they can laser all around it,
b) to try the gas bubble [pneumatic retinopexy] which pushes the retina against the back of the eye wall and prevents more fluid from getting behind the retina or
c) to have surgery in which they could drain and replace the fluid in the eye while removing any tissues tugging on the retina [vitrectomy] in combination with option a and b.
He described the option with the highest degree of success to be the surgery. My eye is longer than average, something I also learned during my cataract surgery, which made lasering around the troubled spot, located at the top of my eye, more difficult. We decided to try the laser first, which was an experience [read: painful and torturous] in and of it self. Towards the end of the laser session he said he couldn’t effectively seal the tear because of the shape of my eye and that he would recommend I go for the surgery.
After I signed the consent for surgery, we filled out my medical history (he was nice enough to write it out for me as I described it) and scheduled the surgery for when anesthesia could be present (due to my family history of malignant hyperthermia (MH)) – I went down into the hospital atrium and realized I hadn’t eaten in 8 hours and needed to get some food.
I was standing in a familiar place, but lost in a bewildered fog when the realization of what just happened washed over me and I couldn’t contain my sobbing. My nose and tears were running down my face and all I could think of was “Is this really happening to me?!” followed shortly by “Please God, don’t let me run into someone I work with. I just can’t explain myself right now and if I see anyone I know I will fall apart.”
Thankfully, my mom called at that moment. She had come to my rescue, even though I told her she did not need to drive the hour plus journey to see me. I am so glad she didn’t listen to me!!
I had surgery on the morning of December 31st 2015 and celebrated New Year’s Day 2016 with an early morning bandage removal. What followed were two plus weeks of face down positioning and a month and a half of recovery (including time off work). It took up to 3 months for the gas bubble in my eye to fully dissipate. I would have an intraocular lens implant in my left eye and 5 more surgeries for retinal detachment in the coming two and a half years.