The hospital stay.

Things can change so fast. And, likely not so dissimilar to a perfectly healthy person, life is full of highs and lows, peaks and valleys. I won’t deny that often during the lows, as a chronically ill person, it’s very easy to get lost moment to moment in how you wish things were and how unfair it feels that your life has been and will continue to be this way. You can forget to just be grateful for the things that you do have, because you’re constantly being reminded of the things that you don’t or can’t. I think it’s a pretty normal way to feel about things under difficult circumstances, and yet, even when I’m struggling with those feelings, I’ve always kept myself reminded of how lucky I am for my vision. Even – or perhaps especially – when something happens to decrease it further. I know that the vision that I have at any given moment isn’t guaranteed and so I make a point of reminding myself often to cherish it – and I absolutely do, above nearly everything.

It’s been a long year and there’s a lot to cover, so I’ll have to break it up and stretch it out a bit. Hopefully it doesn’t end up being too disjointed, but with everything that happened and my brain it very well might be. To start with, I wanted to explain a bit about everything that happened last summer, and what has changed since then because of it.

The first signs that something’s wrong.

On the 1st or 2nd of July (last year) I woke up with an intensely painful right eye, (which is actually supposed to be my good, “stable” eye). When I was trying to figure out if it was an emergency or not, I lifted up my eyelid and could see that a couple of the sutures (visibly sitting just below the surface of my eye) from one of my previous lens surgeries were very red and irritated. Shortly after, the optometrist confirmed that one of the sutures was indeed poking out (again) and would likely need to be removed via laser by my longtime surgeon in Vancouver. Since we were already scheduled to see him near the end of the month to check on the lens issues that I was having in the other eye, we were assured by my optometrist that as long as the pain wasn’t unbearable then it would be perfectly alright to leave it be until then. He had even suggested that maybe if we got lucky the friction caused by my eyelid rubbing over the suture repeatedly might even file the suture down on it’s own (yes, ouch!).


Believe it or not: this wasn’t even the worst my eye would end up looking that particular week.

This all happened to be going on at the same time that my baby nephew (who I hadn’t seen for months) was finally in town staying with us and I desperately didn’t want to leave him almost as soon as he arrived, so I kept trying to hold out, despite how surprisingly severe the pain was often getting. As the days passed though, I started noticing alarming visual symptoms in that eye, at increasing frequency. Looking back on it now, it seems like things started to happen and change very quickly in the days that followed. I had now started encountering flashes, trailing images and tunnel vision in that eye with shocking intensity. Despite everything that I’d been experiencing throughout my life with my eyes, nothing had ever come close to effecting my vision like what I was now going through. Reds appeared dull and faded, and I started finding that I often couldn’t see anything at all in dimly lit rooms. And I knew that even if it was to blame for some of my symptoms a protruding suture shouldn’t be causing all of them – not to that degree. I knew that something serious had to be wrong, how could it not be with what I was seeing on a daily basis? And yet, I kept making emergency trips to my (very understanding) optometrist, who kept looking in my eye and seeing nothing that indicated any problems aside from the still protruding suture.

I was stressed out, confused, and frightened. The fear and sense that something was dangerously amiss kept me going back to the doctor, nearly every single day, despite being routinely told that everything looked perfectly fine and that it was still safe to keep my end-of-the-month appointment in Vancouver. Finally, after nearly three weeks had passed since that day I woke up with a sore eye, I started experiencing transient episodes of extreme double and blurred vision. This was essentially the last straw for both my mom and I’s nerves and fears about what was going on. I was frazzled and exhausted but I felt that I had no choice but to pack up that night and head to Vancouver first thing in the morning by bus, wondering the whole time if maybe I was just crazy or overreacting. In the morning, we figured with the drastic change in my vision so quickly the night before that we should go see my optometrist one more time before I left. He decided to dilate my eyes to get a better look (which seemingly should have been done already), and was very surprised to find that my optic disc was swollen – an unusual find, especially at my age. The optic disc is the head of your optic nerve (what connects your eye to your brain and transmits visual signals). It’s also the entry point for the major blood vessels that supply the retina, and a swollen optic disc can dangerously compress those blood vessels and lower blood flow in the eye. It also indicates the presence of a potentially serious condition.

Many things can cause optic disc swelling, all of them pretty serious, and none of them particularly pleasant. At the time he noted that only one looked swollen, which suggested it wasn’t anything as serious as increased intracranial pressure but none the less, after speaking with my ophthalmologist in Vancouver about the find, it was decided that it was best we get down there immediately. We hadn’t really slept in days with everything we’d been dealing with but following that my mom and I ended up catching the next flight to Vancouver so that we could see my ophthalmologist early the next morning.

Vancouver appointments, swollen optic discs, and an abscess.

Thus, we began the first of what would end up being weeks of exams and scans and were soon informed that both of my optic discs were in fact swollen, with the right being worse than the left, and that blood flow was also noticeably decreased in the right eye. I was really surprised and genuinely hadn’t been expecting any of those things to be happening. I was also admittedly scared, knowing that both discs being swollen signaled something potentially very serious. This was entirely new territory and nothing that I was aware of having a direct connection to my tissue disorder, so, I was potentially looking at an entirely separate medical condition, on top of the debilitating one that I already have. My eyes were being dangerously threatened again, despite not having completely recovered from everything else that had previously gone on (and was still going on) with them.

Swollen optic discs have the potential to cause both retinal hemorrhages and complete blindness, especially when advanced, so it was terrifying when my ophthalmologist said that he suspected that the discs had been swollen for quite some time. We hadn’t even had time to fully process the implications of all of that before we’d been hit with another equally as frightening problem, one that seemed to alarm my doctor even more; my protruding suture had developed into an incredibly dangerous abscess/infection. Yet somehow and worryingly, I had absolutely none of the hallmark signs or symptoms of that type of serious eye infection and if we hadn’t gone to Vancouver for the swollen optic discs it would never have been discovered in time. What makes these infections so dangerous is that, if they reach the inner parts of the eye they can cause catastrophic damage, sometimes to the point of necessitating the removal of the eye itself. The chances of these two serious, completely unrelated conditions happening at the same time are nearly non existent. And yet, here I was, in the midst of exactly that.

Both issues were going to have to be dealt with as soon as possible. First, anything that causes optic disc swelling in both eyes is caused by something that is wrong with the brain, so I needed to see a neuro-ophthalmologist first thing on Monday morning (it’s nearly impossible to find one in an emergency situation on the weekend). As for the abscess, we had to fight it hard with antibiotics and watch it very closely. I was told to put an antibiotic drop in it once every hour, around the clock (even during the night) and a steroid drop twice a day. I had to see an ophthalmologist at about 6 or 7 am both Saturday and Sunday morning to see if the infection had improved at all, and both times it hadn’t gotten any worse, but it also still hadn’t improved despite the high dose of antibiotics. So, we were prescribed another antibiotic drop on top of the one that I was already using, (both still every hour) making a grand total of 50 drops a day, including the steroid drop I was also using twice a day. The dose of antibiotics was so high for an eye infection that the pharmacist dispensing them at first thought that the prescription must be a mistake. With waking up once an hour, to do two drops, 5 minutes apart each time, it’s safe to say that neither mom or I were getting any sleep.

The neuro-ophthalmologist, and ending up in the hospital.

I can say this now, I’m really glad that I had no idea what was in store for me Monday. I was relieved to find that my neuro-ophthalmologist seemed to really know his stuff. He was quick and direct to the point, but also empathetic and personable. I felt like I was in very good hands for once. He said that he suspected that I had increased intracranial pressure, but that he also couldn’t rule out other things like a brain tumor or MS. He thought it best considering the seriousness of what he found that I be admitted to the hospital where they could immediately start investigating what was going on. Especially since we’re from such a small, far away town and wouldn’t be able to leave the city until they knew what was happening.

Looking back, everything seems like it moved so quickly after that, but living it was a very different story. It took about 9 hours for me to be taken to and fully admitted to the hospital (a tough day for two chronically ill people). The morning after, 5 neurologists of varying experience levels (I was in a teaching hospital, which I sometimes learned the hard way), came to do another visual and neurological assessment. They also suspected that given my age that I was most likely suffering from increased ICP as well. They let me know that they’d be doing a CT scan and if that was clear, a lumbar puncture. At this point, of all of the things that could be going on, increased ICP was the best diagnosis that I could hope for, so I was happy when the CT scan was clear of things like brain tumors.


Abscess, antibiotic injection and suture “removal”.

Also on the day after being admitted to the hospital I was taken by hospital bus with my mom (because I was a patient on the neuro-ward I wasn’t even allowed to walk outside by myself, understandably), back to the ophthalmologist dealing with my eye abscess. We were still doing the 50 drops a day and yet even after all of that it somehow hadn’t improved. So, at that point we decided that it would be best to inject the antibiotics directly into my eye, and the infection, to hit the abscess even harder, and to let me get some sleep at night finally. I was not looking forward to this. In spite, or maybe because, of everything that I’ve been through with my eyes I’m quite squeamish about the thought of anything poking my eye. Although, I doubt that feeling’s unique to me. But, despite my reservations, I knew it needed to be done, so while my mom quickly walked to the pharmacy to get the antibiotic to be injected, I sat quietly and steeled my nerves. After the injection he would also be lasering off the part of the suture that had caused the infection in the first place. I’ve had this particular procedure done before, so I already knew that it was a fairly unpleasant one.

The eye injection was very difficult. It was quick, but the pain it caused was very jolting and unexpected. He said “little pinch” to let me know that there’d be some pain when he moved the needle into my eye a little bit, and it hurt quite badly, but I thought it was over. When he said “okay, now big pinch” and moved the needle in further, I had but a fraction of a second to realize what was coming. And it hurt. I can still, nearly a year later, vividly recall exactly how it felt and how shocked I was at the severity of it. I could tell that my doctor felt bad about it all and he apologized profusely. Afterwards my eye took a while before I could finally get it to open and it had stopped watering. It was definitely difficult, but it was necessary, and in the end, I was glad that it was done. Maybe now my eye would start to mend.

After the injection the laser procedure, though unpleasant, was a walk in the park. When it was all over I felt really relieved, but also proud of myself for enduring it all and doing it so calmly. I know I didn’t have much of a choice, but when we’re pushed we’re often surprised at how strong we can be, and that’s definitely how I was feeling. And, it was all well worthwhile because afterwards my eye began to get better continuously, and the worry of just how close I’d been to something catastrophic, began to subside.

The multiple lumbar punctures.

The lumbar puncture was another incredibly punishing experience. To start with, whatever’s wrong with the part of my spine that they need to do the puncture at, makes it unbelievably painful if it’s pushed on, even slightly. And for a lumbar puncture (which I was already a bit anxious about) they need to push on that spot, a lot, in order to landmark where they need to put the needle. That itself was so painful that I kept thinking to myself if the lumbar puncture hurts less than this it’ll be a breeze. I had a bad feeling about the way the lumbar puncture was going to go from the start. But I kept telling myself that it was just my nerves talking and that everyone probably feels that way right before getting one. But the resident neurologist that was doing the LP was having a really hard time finding the place that he was supposed to mark for the puncture. So, we decided that he would try to do the LP twice and if he couldn’t do it then they would just get radiology to do it with an x-ray another day.

The thing is: I’m stubborn, and I knew that if they couldn’t get the LP to work that day it could mean days longer that I’d be in the hospital waiting for an opening in radiology. I desperately didn’t want that. The injection of the freezing wasn’t particularly pleasant but it wasn’t too bad, and they usually say that’s the worst part. So when he had tried unsuccessfully 2 times, I felt okay to tell him that he could try a few more times. He did, but was still having no luck. So he went and found a colleague to see if he’d have better success. I was feeling pretty stressed at this point and the longer they both tried it the more frequently they were brushing the nerves that send signals from the brain to your legs. I was told that this in itself wasn’t really anything to worry about, but it can be very painful and sometimes it was excruciatingly so, especially if they weren’t fast enough in withdrawing the needle once I’d told them that they’d hit a nerve again. To be honest, I lost count of just how many times they tried back and forth. My conservative guess is somewhere around 9 but I think it may have even been more.

By the end of it I was an emotional and physical wreck. The hardest part was not knowing when that awful pain in my legs would start again, how long it would last, or how bad it would be, and by the time they finally gave up it had happened so many times to such a horrible extent that I was incredibly tensed and stressed and I was close to not being able to handle it anymore. I was also so frustrated that I had gone through all of that for nothing and would still have to stay in the hospital and wait to go and get it done again. I had so badly just wanted to get it over with so I could stop stressing about it and we could finally figure out what was wrong. I tried so hard to tough it out, even when I was at my limit for pain, and it ended up being for nothing. I also wouldn’t have even worried about that if I had known just how quickly a spot was going to open up for them to do it with the X-ray (the next morning, not even 24 hours later).

I was pretty stressed going into the lumbar puncture the second time. My spine was severely bruised from the last time (even the radiologist was surprised at the extent) and still very sore, and now I knew how much pain it can cause when a nerve is brushed, which was what stressed me out the most, by far. But, I was told that it would be quick and easy with the X-ray, even though I – rightfully – had my doubts. The doctors doing the LP this time were having a harder time than they expected right off of the bat. And from their conversations I could tell that wasn’t a very common occurrence. I kept thinking “oh great, just great, here we go again” and “how am I going to get through this again?”. The first attempt didn’t work and when I asked what was wrong I was told that the degree to which my spine was crooked at that spot was making it hard for them to do the LP, even with X-Ray guidance. To my incredible relief, they were able to eventually get the second attempt to succeed, and I foolishly thought to myself “I did it, the hardest parts are over now”. What I thankfully didn’t know at that moment was that I still had another week of hell to go through.

I split this post into two parts (the second of which I’ll post tomorrow) because of how ridiculously long it ended up being. If you even made it this far I would consider it a miracle.

4 thoughts on “The hospital stay.

  1. What an encrdibly brave young woman you are! I can’t wait to read your 2 nd post of how you got through all this. You are an inspiration. I am a mom of a 13 yrs old EDS son who also suffers from severe anxiety
    Thanks for sharing your story.

    Liked by 1 person

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