Eye and heart updates (again).

With everything that has been going on with my optic discs and brain lately, I never took the opportunity to write about the outcome of my cardiologist and ophthalmologist appointments from last March.

Wind blown.
My cardiologist appointment didn’t go as well as we’d hoped; my aorta had grown a bit since my last visit, which is never the greatest thing to hear, but it was also still quite stable overall. To get a better idea of how quickly it may or may not be progressing—and to maybe start me on treatment with Losartan if necessary—the cardiologist wanted to see me again in 6 months for an MRI. And, the MRI results showed that in those 6 months my aorta hadn’t grown any further, so for the time being it’s still safe to leave it be. I’m due for my next checkup in about 2 months, so we’ll see how things are looking now. I’m quite relieved at the results, and as far as I know my aorta is doing pretty well for someone my age with MFS, so, no complaints there.

As I’ve mentioned before on here (in “It’s hard to go through it again.” and “We always carry on, and sometimes it gets easier.“), the lens in my right eye suddenly shifted early one morning as I was getting out of bed. This was the third time that I’d experienced something like this with my lenses, so I was pretty certain I knew what was going on. It was somewhat devastating at the time because both times this had happened before, I would end up needing surgery soon after, and my vision would never be the same. But, thankfully it was (and is!) still hanging on because of some factors we weren’t aware of.

When we got to my ophthalmologist in Vancouver he told us that my lens was indeed holding on by one suture instead of two, which was why it had shifted and was now relatively (but not completely) loose. What we didn’t know was that during my last lens reattachment surgery, only one suture had come loose, so he only had to replace the one. We had always assumed both had been replaced. So now, the new suture is still stable and hanging on, but the original suture from my lens implant surgery—13 years ago—has finally let go. This can help account for why this lone suture has managed to hang on two years longer than last time—it’s relatively new and strong.

The trouble is, with only one suture holding all of that weight—in combination with the weak tissue from my disorder, trying to support it—we were told that it’s not a matter of if it fully dislocates again, but when. Sometimes it’s hard to sit here waiting for the other shoe to drop, not knowing when we’ll have to rush back to Van for yet another eye surgery and all of the difficulties that entails. But, I was already expecting another eye surgery, and having these extra years in between has been a gift, so the news wasn’t too bad.

My ophthalmologist was (and is) a bit concerned about some of the complications that a loose lens can cause regarding inflammation, hemorrhages and retinal swelling, so,— as long as the lens is hanging on—we’ll have to go back to Van every 6 months to check on all of those things. On a positive note, the lens in my right eye has had both of it’s sutures replaced, so it should be much more stable and less likely to subluxate like this one did, which is an incredible relief.

So, those are my—as per usual—long overdue eye and heart updates. I can’t believe it’s been nearly two years since everything with my lens kicked off. I’m so surprised and grateful that it’s still holding on.

Thanks for reading!
– Katie

Marfact #25 + My lens journey: Part 4

In honor of Marfan Syndrome awareness month, here’s today’s Marfact (provided by the wonderful Marfan Foundation).

Marfact #25: People with Marfan syndrome should be treated by a physician familiar with the condition and how it affects all body systems. Careful management includes an annual echocardiogram to monitor the size and function of the heart and aorta; an initial eye exam by an ophthalmologist, including a slit‐lamp exam, with periodic follow up exams; careful monitoring of the skeletal system by an orthopedist, especially during childhood and adolescence; medications such as beta‐blockers to lower blood pressure and, consequently, reduce stress on the aorta; and lifestyle adaptations to reduce stress on the aorta.

Visit www.marfan.org for more information.

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My lens journey part 4:

Part 3

The healing process from the last surgery to re-attach my left lens implant was painful and slow going thanks to the complications that occurred. It was only 3 months later and a few weeks into December of that same year when I noticed a worrisome ring forming around the vision in my right eye. I was pretty sure that this was the lens but my optometrist said everything looked fine for the moment. Regardless of how it looked on exam, I knew that something was wrong and after a few days of the ring continually increasing in length and thickness it became obvious. I bent forward to get a pair of pajamas out of my dresser drawer and my entire lens slid forward into the front of my eye.

This was different than the last time one of my lens implants dislocated in that it happened gradually and was still holding on to some extent. The last time it had happened instantly and it wasn’t hanging on at all. My surgeon again wasn’t available for a week, so this was another long week of sleeping upright and worrying about what I was about face. Only this time I had every reason to worry, after all of the things I had gone through during the last two surgeries and everything that followed. I had just lost the vision in my remaining “good” eye and I was looking at what could be another horribly painful, complicated surgery with months of healing time. I was afraid that the vision in this eye would turn out as poorly as the vision in my left eye had or worse.

I held onto the hope that because 4 of my 6 previous surgeries had gone perfectly that this one likely would too, despite how the last two turned out. After all, the odds were technically in my favor. The surgeon decided to re-attach my lens as he had done during the previous 2 operations and before I knew it I was being wheeled into the OR again. The first thing I remember after waking up from the surgery is being in tremendous pain. Because of this I was kept in the recovery room far longer than I’ve ever needed to be and the nurses would return every five minutes to administer more pain meds in order to try to get the pain under control – which was largely unsuccessful. After about an hour of this they wheeled me back to the holding area. I remember laying curled up in a ball on the bed clenching my fists and waiting for them to bring my mom in – sometimes a girl just needs her mom.

It was a long time before they finally brought her in and they still hadn’t been able to get my pain under control, though not for lack of trying. I was told that my eye had hemorrhaged again and that there was severe inflammation – just like last time. The pain was really intense and on top of that it’s not uncommon for people in my family – especially my mom and I – to not respond very well to pain medications (or local anesthetics) to begin with. Eventually I just started vomiting uncontrollably from all of the pain medications, the violence of which did not feel good on my eye. Eventually, because nothing they did was helping much and all I wanted to do was go back to the hotel and curl up in bed, the nurses agreed to let me go home. All in all I was in the hospital for 9 hours after this surgery, instead of the usually 2.

The recovery for this surgery was by far the longest I had ever experienced. It took well over 6 months before my vision had healed to the full extent that it would and the pain had largely and finally subsided. Sadly, my vision never recovered to what it had been before the surgery. While I thankfully don’t have floppy iris or double vision in my right eye, my visual acuity as a whole was largely reduced and my distance eye can no longer see distances very well at all. It’s been hard to get used to and it’s been a very long and frustrating journey.

I miss things the way they were and it’s been hard to adjust to not seeing the world as well as I had all those years. But, as hard as it’s been to cope with these changes, it’s these experiences that have also renewed in me a feeling of appreciation and gratefulness for the vision that I do have. I’ve been reminded that nothing is guaranteed, and that’s something I’ll always hold on to.

Marfact #23 and 24 + My lens journey: Part 3

In honor of Marfan Syndrome awareness month, here are Marfacts 23 and 24 (provided by the wonderful Marfan Foundation
and Maya over at Marfmom respectively).

Marfact #23: Related conditions that have signs and treatments that somewhat overlap with Marfan syndrome include Loeys‐Dietz syndrome, Ehlers‐Danlos syndrome, Beals syndrome and MASS phenotype. The differences are critical so it’s important to get the right diagnosis.

Marfact #24: Do you know the signs of a pneumothorax and how to treat it? A pneumothorax is “a collection of air or gas in the space between the lungs and the chest that “collapses” the lung and prevents it from inflating completely.” It’s an emergency situation, although usually not life-threatening. http://marfan.org/marfan/2444/Lung-Emergencies/

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My lens journey part 3:

Part 2

The day after surgery I woke up in a tremendous amount of pain. It hurt pretty severely to look anywhere, but if one eye moves so does the other, so it was almost entirely unavoidable. When we got to the eye doctor’s for my post surgery checkup (with a surgeon’s helper, not my actual surgeon) I was very agitated in a way that I never am. But I had done this 5 times before and I knew the drill: they were going to take off my patch and hold open my eyelid, shine a light in it, put drops in it – all things that I usually wouldn’t bat an eyelash at. But, this time I was in so much pain that the thought made my stomach turn – and it turned out to be for good reason. The pain I felt just from the weight of that tiny drop hitting my eye was enough to make me tear up and cry out.

Something was definitely wrong. Never had I ever experienced even a fraction of this much pain after a surgery. At this point I’d been living with a lot of pain every single day for the past 3 years and I was pretty good at handling it, but this pain was frightening in it’s severity. Lucky for me that I didn’t know how much worse things were about to get or I wouldn’t have been able to find the courage to carry myself towards them.

To find out what was wrong I would need an ultrasound on my eye. My eye that was still mushy and flat from the previous day’s surgerywhere there were stitches sticking out everywhere and fresh wounds, and where the weight of a tiny drop was followed by a shocking amount of pain. I thought to myself there’s no way. But yes, that’s exactly what they were going to do.

As they explained the procedure I wanted so badly to run as far away from there as I could. But what do you do? If I didn’t get the ultrasound they wouldn’t be able to figure out what was wrong, and then what? I couldn’t risk losing my vision because I was scared. It had to be done, which I guess is what made it so doable. That being said, the 20 minutes it took seemed to drag on for hours. My fingers hurt from gripping the chair arms so hard. I stayed silent with my jaw locked tight and kept every muscle in my body tensed to the point of exhaustion – I couldn’t help it. Up until that point I had never been in that much pain in my entire life. You know that horrible, intense shooting pain that you get in your eyes sometimes during brain freeze? The pain was a lot like that, only worse and for 20 minutes straight.

But, what the ultrasound revealed was that my eye had hemorrhaged and was severely inflamed. This explained the amount of pain that I was in and if left untreated could have severely and irreversibly damaged my eye. I was immediately put on a high dose of steroid drops four times a day (more misery), along with steroid tablets to help the healing and zantac to protect my stomach from the steroids themselves. I was also on a few other drops that I always take after surgery starting four times a day everyday.

After all was said and done I spent the rest of the day a bit traumatized by everything, but I was also impressed with myself for handling it – not that I had much of a choice. It’s pretty amazing though: just how much pain we can endure when there’s no other options. Things were still a bit difficult from there on out. Because of the complications my eye was taking a much longer time to heal than it ever had before. I was impatient with the slow progress – I wanted to know how my vision would turn out this time around and if it would be like it had been before the past two surgeries.

I can say now that I wish things had turned out differently. After all of the pain and worry; the drops, the traveling, the money; this surgery turned out worse than the last one. While I didn’t have the floppy iris anymore, I now had severe double vision and the acuity of my vision itself had decreased considerably. I could no longer read nearly as well as I had been able to or see close up things a fraction of how I had (my left eye is my nearsighted eye). It was all so frustrating. I couldn’t understand why everything had gone wrong when I used to breeze through the same surgeries like they were nothing. I was also inescapably terrified that my right lens would soon dislocate too and that I’d have to go through it all over again.

Coma

This is an example of how the double vision in my left eye looks (the center and far right images) compared to my previously normal vision (far left).

Part 4

Marfact #21 and 22 + My lens journey: Part 2

In honor of Marfan Syndrome awareness month, here’s today’s Marfact (provided by the wonderful Marfan Foundation).

Marfact #21: People with Marfan syndrome are at an up to 250 times greater risk of aortic dissection than the general population.

Marfact #22: Marfan syndrome can affect many parts of the body, but has “variable expression,” so each person is affected differently, even in the same family. While there are features that are frequently seen in many people with the disorder (such as tall, thin stature, disproportionately long arms and legs), not all people exhibit these features.

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I’m actually going to be splitting this into 4 parts because of how long it actually is once I sit down to write it.

Part 1

About a week after my 16th birthday my life changed – and I will never mean this more literally – in the blink of an eye. Meaning that I blinked and all of a sudden the vision in my left eye was entirely blurry. I knew what had happened immediately: my vision was identical to when I had no lenses at all and would take off my glasses. My implant had dislocated and I was devastated. At the time we had been told that should anything ever happen to my lens implants that they would likely have to be removed and that would be that.

My eye surgeon wasn’t available for a week, and because of the risk of my lens implant lodging in my pupil and causing serious problems I had to spend that entire week sleeping practically upright to keep it from doing so. This coupled with thinking that I had just lost one of the most precious things I had, made it a pretty long and melancholy 7 days. To my enormous relief though, my eye surgeon decided to re-attach my lens instead of removing it. I wish that had been the end of it, but it wasn’t.

My eye healed quickly and very minimally painful as they always have, but once my vision began to come back I noticed that every time I moved my eye everything in my field of vision would bounce. Mom and I left Vancouver and made the 8 hour trip home hoping that as my eye continued to heal this would go away, but it didn’t. I went to my local optometrist for a post operative check and was told that the cause of the bouncy vision was “Floppy Iris Syndrome”. As far as he could tell my lens implant was reattached further back this time to help keep it from rubbing on my iris as it had before, but now it was too far back and not supporting my iris at all, causing it to “flop”.

6th Eye Surgery

My eyes a month and a half after surgery #5 and a day before surgery #6.

So, about a month and a half after surgery #5 – my eye red and still not fully healed – we headed back to Vancouver for another operation. This time it was decided that he would replace my lens entirely with a new one (a bigger and riskier surgery) and for the first time ever before an operation I felt dread. I was hoping that because he would be replacing my lens this time that things would be better but when I woke up my mom told me that it had been decided during surgery that my old lens would be reattached instead of replaced as it had last time. Aside from that, right away things felt different this time when I woke up than it ever had after the previous surgeries. And though it wasn’t unmanageable, my pain level was a lot higher than it had ever been following eye surgery.

It was the day after though, that I ended up going through one of the hardest things I’ve ever been through.

Marfact #20 + My lens journey: Part 1

In honor of Marfan Syndrome awareness month, here’s today’s Marfact (provided by the wonderful Marfan Foundation).

Marfact #20: Eye problems associated with Marfan Syndrome include early nearsightedness, early glaucoma, lens dislocation and retinal detachment. Treating eye problems early is key to maintaining quality of life.

Visit www.marfan.org for more information.

*I’m splitting this post into two parts because it’s a bit of a long story.

Lens dislocation and the complications that come with it is something that I’ve dealt with in some capacity my entire life. I was 4 years old when I was diagnosed with ectopia lentis and not long after that I was undergoing the first two of seven eye surgeries because of it. These early surgeries were done in order to remove the lenses and fit me with highly magnified bifocal glasses. I hated those glasses with a passion for how they made me look, but at the same time I was actually seeing the world for the first time in my entire life.

When I was 10 years old my dream of ditching the glasses and being able to see out of my own eyes, without any vision aids, finally came true when it was decided that I was a good candidate for lens implants. And so, it was with surgeries number 3 and 4 that I received one of the most amazing gifts I could have ever imagined. Things were relatively calm for the first few years afterwards but then I gradually began getting unexplained bouts of Iritis and Uveitis that would cloud up my vision, as if I was looking through a frosted window. These episodes were gradually becoming more frequent and severe, until one day I woke up without being able to see anything out of one eye and subsequently landing in the ER, wondering if I had gone permanently blind in that eye.

It turned out that my lenses were rubbing on my irises, causing tiny pieces of them to flake off. This would then clog my pupils, disallowing any fluid to escape and causing the pressure within my eye to skyrocket. To remedy this without trying to re-position my lenses my ophthalmologist decided to use a YAG laser to make a small hole in each of my eyes, underneath my upper eyelid (too small to see) so that if my pupil did become blocked there would still be a way for the pressure within my eye to escape. And, although the procedure itself was really unpleasant because my eyes wouldn’t freeze properly and I could feel the holes being burned, it ended up working really well and afterwards the episodes dissipated entirely.

Part 2

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My Vancouver Trip: Heart & Eye Updates

I’m back from our little Vancouver trip. 4 days later and I’m still very lacking in sleep. Last night I was lucky if I got an entire 45 minutes before we were up and on the bus – which I also couldn’t sleep on. I attempted a nap a bit after we got back and wouldn’t you know it? That didn’t work either.

Anyways, despite what it may seem I’m not actually writing this post just to complain about my desperate need for sleep – though I’m not gonna lie, it’s nice to vent. I’m here to tell you how my eye and echo-cardiogram/cardiologist appointments went. My eye is still being a tad unsettling. I still have the “ring of doom” as I call it along the outside where I can see out of my lens a bit. But the ophthalmologist has no way of seeing whether or not the lens is about to dislocate so I’m still waiting it out. He lasered off the suture sticking out of my eye, which I have to tell you was highly unpleasant but luckily fairly quick. For one, there was a mix-up and they forgot to freeze my eye, which isn’t too big of a deal because last time my eye wouldn’t hardly freeze anyways. It felt like someone literally burning my eye, which is what was practically being done. The bouts of one laser weren’t too bad – though not enjoyable – it was when he would do shots of three in a row that became pretty painful. It’s still a bit sore but no worse now than when the stitch was rubbing and it should be healed in no time. So, I’m glad that’s all done, it’s a relief to have it dealt with.

Then there was my last *tear* official appointment at the Children’s Hospital before I age out. It was nostalgic, 14 years later, to be saying goodbye to such a familiar place. I’m so grateful to everyone there who’s been so integral in the journey I’ve been on with my disorder. The woman who did my echo was a real peach – sarcasm implied. She was very nosy and judgmental about anything having to do with my life and my dealings with pain and health issues. Her entire demeanor oozed judgement and shallowness. I’m always astounded at people who cast their ignorant opinions on my life with so little understanding or compassion when in all honesty I probably suffer through more in one month than she has in her entire lifetime. Anyways, I couldn’t understand why she kept asking me so many personal questions just so she could belittle me when I answered. I should’ve stood up for myself or put her in her place but confrontation doesn’t come naturally to me and she caught me a bit off guard. Plus I just wanted to finish without making it more awkward than it already had gotten. Note to you echo lady: if you can’t behave better than that you have no business working in a Children’s Hospital with children who have or may have heart problems!

Okay, sorry, I’m done my rant. The results of my echo were alright. I now have mitral valve prolapse with slight mitral valve regurgitaion, which doesn’t surprise me. For those of you who don’t know, in simple terms MVP is when the mitral valve of the heart doesn’t quite close all of the way when pumping out blood, thus potentially allowing blood to flow from the left ventricle back into the left atrium of the heart.

We spent the majority of the 3 hour appointment going through my various Marfan-like features with the cardiologist as well as whether or not I should begin beta blockers soon to potentially slow the rate at which my aorta dilates. A nurse in the building who specializes in various connective tissue disorders like MFS and ehlers-danlos was also kind enough to participate in the appointment on her own free time. They went over the ghent criteria (criteria for being diagnosed with Marfan Syndrome) one by one checking which points apply to me. The end result said that taking the major feature of my aorta dilation along with many of my minor features it would appear that I meet the criteria for a Marfan diagnosis even without counting the major feature of my dislocated lenses. Both of them also said that they personally think that my tissue disorder is in fact specifically Marfan Syndrome. It was nice to finally have a proffessional involved in my care acknowledge the fact that I meet the ghent criteria.

As for whether or not I should begin beta blockers the doc said it’s entirely up to me at this point. He said that they can’t keep the aorta dilation from growing, they can only potentially slow it down perhaps pushing back the need for surgery farther than without. But, he also said many people have a very hard time on them and knowing my history with all medications, I can only assume that’ll more than likely include me too. So, basically my options as of right now are: start taking beta blockers and hope that I can put off surgery for a longer amount of time and live with whatever unpleasant effects they may have on me, or, live life normally (not recklessly, mind you), monitoring my aorta as usual (I’d have to do that either way) and when I’m in more of a danger area in regards to aorta root size consider beta blockers then. At the size my aorta is right now the risk of dissection is very low, though, not non existent. For now I’m going to stay off of the beta blockers. If, in a few years time, things start changing faster then I’ll reconsider. For now I’ll just continue to be careful and follow the appropriate safety guidelines. This is an entirely personal decision. If my cardiologist had said “I think you need to be on beta blockers” then of course I would take them, but, things are stable right now and I’m going to enjoy that while it lasts.

I know this has been a long post and I’m glad that I haven’t lost you yet. This is the last of my updates. Since my cardiologist doesn’t see patients above the age of 18 and he made very clear that he’s not comfortable leaving me in the care of anyone who isn’t highly familiar with the effect of tissue disorders on the heart, he is referring me to another specialized hospital in Vancouver for my yearly echo. And I thought my annual Vancouver trips would be history after this! That’s okay though, I’m really glad that I won’t have to leave such an important part of my care to someone who doesn’t know all of the ins and outs of Marfan Syndrome. It’s a relief to know that he wouldn’t just let me fall off of the map after this. He’s been a good doctor throughout the years and I’ll always be grateful for the care that I’ve received as his patient. So, thank you a million doctor S!

[Any medical terms and/or definitions featured on this blog have been thoroughly researched by me as to not lead to any false consumption of information by the reader. Though, that aside; I am not a doctor and the medical information on this site should not be taken as a substitute for the advice of medical professionals. If you’re experiencing any health issues don’t hesitate to contact your doctor.]

16 Years Old: Right Lens Implant Dislocation, Another Surgery

While I was still healing from the last surgery a few weeks into December I got an early Christmas present (sarcasm). I noticed a ring around the outside of my right eye. I assumed it was the lens but when we went to my optometrist he said everything looked fine. I knew that even though he couldn’t see a problem that there was one and it would only be a matter of time before we found out what it was. Finally after a few days of the ring increasing in length and thickness I new what was going on. I bent over to get some pajamas out of my dresser and my entire lens slid forward. I could see it sitting in my eye and remembering how I was instructed not to bend over last time so that it wouldn’t lodge in my pupil I immediately stood up. It was different this time, it dislocated slowly where as the left one had done so in an instant. Like the last time I had to wait a week before I could have surgery. I think my surgeon was already booked or something. So, another long, long week of sleeping upright and worrying. Though, I think this time I had every reason to fret. The last surgery had turned out less than what I’d hoped for and my vision with my right eye when it was good wasn’t nearly what it used to be. If the same things happened again I wouldn’t be able to see very well at all. Not to mention the pain. I was terrified I would have to go through all of that pain again. I just tried to remind myself that this would be the 7th time I’ve had to do this, and 5 out of those 7 times the pain really wasn’t that bad.

My surgeon planned to reattach the lens as he had done with the left eye. The first thing I remember after waking up from the surgery is being in tremendous pain. When your in the hospital they usually ask you to rate your pain on a scale of 1-10. First of all let me just say I hate that question because I tend to over think it. I’ve never been in the worst pain imaginable so how can I rate my pain in accordance to this? That being said I kept saying it was an 8. They kept me in the recovery room far longer than I’ve ever had to stay there and would return every five minutes to ask me if the pain had lowered -which it hadn’t- so, they would administer more pain meds via IV. After an hour or two of this they finally wheeled me back to the holding area. I just remember laying curled up in a ball on the bed clenching my fists and waiting for them to bring my mom in. Sometimes a girl just needs her mom. But they didn’t bring her in for a long time after that and they still couldn’t get my pain under control. See people in my family (me, mom, brother), tend to not respond much to pain killers as well as anesthetic. Like for instance if the dentist needs to freeze my mouth it takes a lot of freezing and a much longer time for it to kick in on me than most people and my mom doesn’t freeze at all. And with Tylenol 3 which I take for pain most of the time I can take two at once and will feel nothing. So these heavy duty pain meds; morphine, demerol, oxycodone, and whatever else they attempted were doing nothing to relieve any of my pain. Meanwhile, I was told that my eye had hemorrhaged again -the reason for all of this pain? Eventually I just began vomiting all of the medication back up. My body had had enough of that, especially considering I didn’t have any food or water in my system to help it cope. I was in the hospital for 9 hours after my surgery (as apposed to the usual 2 hours) but eventually I just wanted to go home and sleep and since nothing they tried seemed to help the nurses didn’t oppose. I was still getting sick by the time we got home but despite everything I was wiped enough to fall asleep. This recovery time was the longest by far. It took months and months before my vision had officially reached it’s potential and the pain finally went away. Sadly for me, my vision didn’t return to nearly what it had been. No double vision or floppy iris, which I am very thankful for, but for some reason now I can’t see close to as well for distance as I used to be able to. This has all been very hard to adjust to. But I try to remind myself often that I am extremely lucky for the vision that I do have and that many others could only hope for such. I am not blind, I can see. And that will have to be enough. The hardest part for me is having been given that gift, only to have it taken away again. But I’m still thankful for the time I had with my implants when I could see so well and felt as if they had been mine all along. I still hold out hope that one day they will be able to fix my vision. But until I can be sure I won’t go into surgery and have there be a chance of an even worse outcome I will learn to live and cope with my new vision.

{I am not a doctor and the medical definitions and descriptions featured in this blog post do not and should not replace those of a medical professional. They are merely there to help give an idea of my situation and experiences.}

16 Years Old: Floppy Iris Syndrome & Another Surgery

I went to my local optometrist for a post operative check up and to voice my concerns about my new vision problem. He said that I had what he called “Floppy Iris Syndrome” (sounds made up, I know). Again he reminded us he could only offer speculation but he said it appeared that because my implant was placed further back this time to prevent it catching on my pupil and rubbing my iris that there was nothing to support my iris and so it was “flopping”. This made perfect sense. Back we went to Vancouver to consult with my ophthamologist. He decided that this time he would implant a new lens. My eye was still red and not yet fully healed so the thought of them cutting into it again so soon didn’t seem right to me. But he assured us it was best to do this right away as opposed to months or years later. So again -a month and a half later- surgery was booked for the following morning. I felt doomed this time for some reason. I felt that something would go wrong again and that I would not be able to see as well. Not long after I woke up from surgery my mom informed me that yet again at the last minute my surgeon had decided not to implant a new lens and to instead reposition the old one. I was really irritated and a bit disheartened, but reminded myself that he was the surgeon and he knows best. This time my pain level was a lot higher it had ever been with my other surgeries. Not unmanageable but higher.

The day after the surgery though, would end up being one of the hardest things I’ve ever gone through. I woke up in a tremendous amount of pain. It hurt to look anywhere, but if one eye moves so does the other. When we got to the eye doctors for my checkup (with a surgeon’s helper, not my actual surgeon) I was very aggitated. I had done this 5 times before, I knew the drill. They were going to take off my patch and hold open my eyelid, shine a light in it, put drops in it. Usually I wouldn’t flinch but this time I was in so much pain that the thought made my stomach turn -and for good reason. The pain I felt just from the weight of that tiny drop hitting my eye was enough to make me tear up and cry out. Of course the doc thought I was just being a baby he didn’t know me or my history, until my mom promptly explained to him that even at four years old I had not complained once during all of this. This was not the same, something was wrong. I have a very high pain tolerance. After all I’d been living in pain literally everyday for the past 2 and a half years. And so she knew the amount of pain I must’ve been in. But things were about to get much, much worse.

To find out what was wrong I would need an ultrasound on my eye. At first I was certain they must have a different way of doing this one eyes. There was no way they were going to hold that thing down on my eye and move it around. My eye was still mushy and flat, there were stitches sticking out everywhere and fresh wounds, not to mention a drop hitting my eye was really painful and this thing would be much heavier. There was no way. But yes, that’s exactly what they were going to do. I almost swallowed my heart as they explained the procedure. The 20 minutes it took seemed to drag on for hours. My fingers hurt from clenching the chair arms so hard. I could hear my mom sniffling in the corner. I was silent, -I was afraid to unlock my jaw and unclench my teeth- but she could tell by how I was holding my body how much pain I was in. Like I said, I have a high pain tolerance, and this was the most painful thing I’ve ever had to endure. It was like someone was splitting my skull with a sledgehammer and electricuting me at the same time. But, it needed to be done. The ultrasound revealed that my eye had hemorrhaged and was severly inflamed which was the cause of so much pain. This could be very damaging to the eye if left untreated. I was immediately put on a high dose of steroid drops four times a day (more pain!) along with steroid tablets to help the healing and zantac to protect my stomach from the steroids. I was also on a few other drops that I always take after surgery starting four times a day everyday. I was a bit traumatized the rest of the day, but proud that I had handled it -not that I had much of a choice. I was surprised to know how much pain we are capable of dealing with when left with no options though.

My eye (because of the complications) was taking a much longer time to heal than it had after the previous surgeries. I was edgy and wanted to know if my vision would be back to the way it used to be before the floppy iris. After all of the pain and worry, the drops, the traveling, the money, this surgery turned out worse than the last one. I didn’t have the floppy iris now, but I had severe double vision. Along with that my vision itself had decreased considerably compared to before. I could no longer read nearly as well as I had been able to (my left eye is my nearsighted eye). I double vision I’m told is a hazzard of the type of lenses I have, along with the size of the lens. It is rare but sometimes people do end up with these visual aberrations. The name of the aberration that closest fits mine is Coma aberration.

Above is a photographic example of the coma aberration. On the far left is how a normal image would appear (in my case). The middle is how a slightly distorted image in my field of vision would look, and the far right is how bright things like lights, street signs, televisions etc, always look. This has and will prevent me from ever driving in the dark, though I suppose I’m lucky I can drive at all. Still I’m sure that not being able to get myself around after dark will prove to be an obstacle time and time again in the future.
 {I am not a doctor and the medical definitions and descriptions featured in this blog post do not and should not replace those of a medical professional.  They are merely there to help give an idea of my situation and experiences.}

16 Years Old: Dislocated Lens Implant & Surgery

It’s odd writing about my past as if it were somebody else’s. Some of it seems like another lifetime ago. The events in this blog post however were not all that long ago. It has been about a year and a half now since all of this took place.

What I’m about to write about, for me, has had a huge impact on my life. It was summer, a few weeks after my 16th birthday. I was sitting right where I am now, talking to my mom. I blinked and when I opened my eyes I couldn’t see a thing out of the left one. It was all a blur. It was exactly the same as when I didn’t have implants and would take my glasses off. I knew immediately that my lens implant had dislocated – and I was right. My optometrist knew I would need to meet with my ophthalmologis so that we could figure out what to do but this could not be done for a week because he was in China at the time. I was instructed not to bend over and to sleep upright so that the lens would not lodge into my pupil. Let’s just say it was a long week. When I was younger we were told that if anything happened to my implants that they would have to take them out and that would be it. I sat there thinking that I had lost the most precious gift I had ever been given. Sure I could see out of one eye, but it would be back to contacts and glasses regardless. Unless I wanted to remain blind in one eye. I wondered if I had appreciated my lenses as much as I should’ve. If I had remembered to stop and be thankful for the gift I’d been fortunate enough to receive. And truthfully, I had.

The week slowly dragged on until it was time to travel back to the big city. After an 8 hour bus ride (courtesy of Shriners, without which we would be lost!), we arrived at the Easter Seal house yet again. Luckily for me my ophthalmologist explained that technology had come a long way since my implants and that he would without a doubt be able to replace it. So surgery was booked for the following morning and I went through the motions of preperation. No food or water past midnight, arrive early to be checked in and hooked up to the IV etc. I was feeling nervous as one would, but optimistic. I felt certain all would be fine. Though, it wasn’t. My surgeon decided at the last minute to reattach the old implant instead of implanting a new one. To implant a new lens is a much bigger surgery altogether. It requires a much bigger incision and a longer healing time. At first I was angry at this decision as I thought it was the implant that was the problem, but now I’ve come to realize that may have been the best move.


Taken a month and a half after the surgery.

My surgeon’s decision wouldn’t be the problem though. My eye healed fairly quickly but as my vision returned I noticed a very distracting visual disturbance. Wherever I looked my vision would bounce. It was similar to looking through a bottle of water as the water waved and distorted everything I was seeing. We went home hoping that this would get better as time went on. But it did not.

{I am not a doctor and the medical definitions and descriptions do not and should not replace those of a medical professional. They are merely there to help give an idea of my situation and experiences. If you are experiencing any health issues seek medical care.}