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My detached retina story

 

 

Unless you are a boxer, rugby player or eye surgeon, most people have no idea what a detached retina is. This story is about my experience with a detached retina. I have posted this for the benefit of those who do not know what the symptoms of a detached retina are (like most people, I was previously totally unaware). If I had known what the symptoms of a detached retina were before, I could have avoided what turned out to be the worst month of my life.


One in every 10,000 people gets a detached retina sometime in their lifetime. If you are short-sighted, the odds increase to something like one in 4,000 – 6,000, and if you are very short-sighted the odds are worse than that. So it’s not that an unusual occurrence. It can happen at any time in life, but the odds increase the older you are.
 
A detached retina is sometimes caused by a hard knock to the head (which is why boxers and rugby players know about it) but for most people it is caused by the vitreous jelly in the eye (that is the gel-like substance that fills the middle of the eye) contracting and pulling on the retina (which is like a film on the back of the eye) causing a hole or tear.


Shrinkage of the vitreous jelly occurs naturally as part of the aging process, and for most people it separates cleanly from the retina, but for a few people (like me) it doesn’t.


If a hole or tear occurs, then fluid from the vitreous space can flow through the hole or tear and push the retina away from the back of the eye. Once it is ‘detached’ from the back of the eye, that part of the retina won’t function properly, causing a blind spot.


How it started


On the night of Sunday 15 June 2003, I was driving home from the Bangsar pasar malam (night market) in Kuala Lumpur, when I started seeing a flashing light in my left eye every time I looked left or right at a road junction. It was like a bright pin point of light on the outside of the eye which would travel around the outside of the eye in about half a second each time it appeared. It was a bit worrying, but the eye felt okay, so I did nothing about it. I found out later that this was a symptom of the vitreous jelly pulling on the retina.


The next morning the flashing light had disappeared, but for the next couple of days I had black ‘floaters’ in the eye. I did a search on the Internet for eye problems and found a medical site that said floaters were quite common, and nothing to worry about, and would disappear of their own accord. I thought about going to see a doctor, but after reading the Internet write-up, decided to do nothing about it (that should be a lesson in itself).


I found out later that flashing lights followed by black floaters was a symptom that a hole or tear may have occurred in the retina and should be treated as a medical emergency. I was told that if I had gone to a hospital emergency room that morning, the hole could have most likely been sealed using a laser, preventing it from developing into a detached retina, and that would have saved me the pain and suffering of what I was about to go through.


On the Thursday morning the eye had cleared a bit but there was a static and somewhat larger black patch in the bottom of the eye. It was at that stage I started thinking that I ought to see a doctor, and that morning whilst I was at the office I checked on the Internet for some names of ophthalmologists. I found one at the Pantai hospital, which was close to where I worked. However, I was very busy that day and decided to put off making an appointment until the following morning. I found out later that the black patch was where the retina had started detaching.


That night when I was driving home from work, I suddenly became aware that I had completely lost the sight of the bottom right hand corner of my eye. I had dinner scheduled that night with some guests from CNN, including one of CNN’s correspondents Nic Robertson whom I knew would have some interesting experiences to talk about from his recent stint in Afghanistan, so I decided to put off going to the hospital until the morning, because there was no pain or discomfort in the eye.


That was a very foolish decision because I found out later that what I was experiencing was a major detachment of the retina.


The following morning I called the ophthalmologist and made an appointment to go over. Fortunately he was able to fit me in fairly quickly. He examined the eye and took less than five minutes to diagnose that I had a detached retina. He said it was serious, and I needed immediate surgery.


I was initially quite shocked and aghast at the idea of having surgery on my eye – especially in Malaysia (although later I realised that I was very lucky this didn’t happen a week later when I was supposed to be in Bangladesh). I told the ophthalmologist that I had a brother-in-law in Australia who was an eye surgeon, and suggested that perhaps I could go there so that he could carry out the surgery. The doctor looked at me and said: “I am sorry. You don’t have time to go to Australia . This is an emergency. If you are not operated on today, you may lose the sight of your eye permanently”.


He then went on: “I only operate on the front of the eye. Ophthalmic surgeons these days tend to specialise in either the front of the eye or the back of the eye. I am going to refer you to a very good surgeon at Gleneagles Hospital (which was on the other side of the city) who operates on the back of the eye.” He then asked me to wait outside whilst he called the other surgeon. A few minutes later he called me in and said he had spoken to Dr Tony Leong who would see me as soon as he had finished an operation that he was about to go into. He said: “Now I want you to get over there as soon as possible. In fact I am not even going to charge you for this consultation, because I don’t want you hanging around here waiting to pay a bill. Just go!” That drove home the urgency of the situation. A doctor who didn’t want to be paid!


I realised later in the day how true the doctor’s words were. By the time I was being wheeled into the operating theatre at Gleneagles Hospital just after 3.30pm , I had lost over 60% of the sight of my left eye, including the central vision. The retina was peeling off, and within a few hours I could have lost 100% of my sight. After that, reattaching the retina and restoring vision is a much harder task.


The operation


Dr Leong wanted to operate on me immediately I got to Gleneagles Hospital , but because it was going to be under general anaesthesia, they needed to wait for 7-8 hours after I had last eaten or drunk any liquids. I’d had breakfast at 8am and a cup of coffee at 9am , so they booked the operating theatre for 4 pm (the ophthalmologist had told me not to eat or drink anything once he had arranged the referral to Dr Leong).


Before I went into the operating theatre I asked Dr Leong what the eye would feel like when I woke up. He said: “My patients tell me it feels like you’ve been kicked in the face by a horse.” Great! That’s all I needed to hear! But actually it helped to keep my mind off the operation. As I lay on the operating table, and as they stuck the needle into my arm and put the oxygen mask over my face, and I gradually lost consciousness, I was more worried about how I was going to feel when I woke up than I was about the actual operation or the general anaesthetic.


It took me a long time to wake up from the general anaesthetic. The operation was nearly two hours and I recall the doctor telling me that everything had gone well, but I have little recollection of being wheeled back to my room until I eventually opened my right eye sometime between 7 and 8pm. I came out of the general anaesthetic well with no nausea, and surprisingly there was no pain from the eye – although, as I was to find out later, that was only due to the painkillers they had given me.


For the next 15 hours I had to lie flat on my back and not move the head. This was not too bad for the first few hours, except that I was very thirsty. As I could not drink lying down, I had to hold a straw to my mouth and suck a little water at a time and let it trickle down the throat. It took several hours to quench my thirst.


After a few hours I started to feel pain in the eye. It was not at all like the doctor had suggested (being kicked in the face by a horse) – it was like someone sticking needles into the eye. The doctor told me later it was the stitches causing this pain, but as they softened over the next few days, the pain would subside. But it was not the pain in the eye that would prove to be the worst consequence of the operation – it was the pain in the back.


After about six hours of not moving, my back started to ache like I had never experienced before. It became so painful that I was almost screaming. During the night I asked the nurses to give me more painkillers intravenously (because I couldn’t sit up to take any medication) but they said they couldn’t do that without the doctor’s permission. They said they had tried to contact him but there was no answer from his phone numbers, and he hadn’t returned their calls from any of the messages they had left. It was the most painful night I have experienced in my life.


In the morning the doctor came and said there had been a misunderstanding. He said I could have sat up momentarily to take painkillers orally, but apparently the night staff had misunderstood why I was asking for intravenous painkillers - because they didn’t speak very good English. So I had gone through a night of excruciating pain for nothing!


He said from that point on I could get up to go to the bathroom, take medication or eat, as long as it wasn’t more than five minutes in an hour. After that I was able to get some relief from the back pain by sitting up for a few minutes, although I must confess there were a few hours when the pain was so bad that I sat up for closer to 10 minutes than five minutes.


This went on for three days. After the first day the doctor took the bandages off the eye and said I was making good progress. I could see that the retinal detachment had reduced back to the 25% I’d had on the day before the operation, and my central vision had been restored (although it was very blurry). On the second day, there was little further improvement, and the doctor told me that if it didn’t improve by the third day, I would have to have a second operation - actually it was only what they call a 'procedure' - where they injected a bubble of gas into the eye to hold the vitreous fluid against the retina.


He explained that he had used a freezing technique called cryoretinopexy to seal the area around the retinal tear at the back of the eye and had stitched a ‘radial 4mm sponge’ (which he referred to as a ‘plastic buckle’) onto the eyeball to help it press onto the area where the retina had detached, but there was always an element of luck in whether that worked without any further intervention.


Complications


On the third day he said that some fluid had accumulated again behind the retina, so I had no option but to have a bubble of sulphur hexafluoride (SF6) gas injected into the eye to try and push the retina into place from the other direction.


That afternoon I was wheeled back into the operating theatre for the SF6 injection. It only took five minutes and was done under local anaesthetic. It wasn't painful, just uncomfortable, but the worst part was seeing all the needles going into your eye (you have to keep both eyes open during the procedure) first for the local anaesthetic and then for the gas bubble.


I still shudder when I think of the surgeon’s hand descending on my eye holding the needles, each time saying “Now don’t move, it is important that you keep your head very still”. Easier said than done when someone is putting needles into your open eye!


Back in the ward, I now had to sit up holding my head upright, but tilted forward and to one side in order to hold the gas bubble in the right position. I could no longer lie down because if the gas bubble was to rest on the optic nerve, it could do permanent damage to my eyesight. So that night I suffered a very stiff neck and backache from having to sit up all night with my head cocked to one side (the opposite problem to the first operation!) I realised how important it is for our backs to be able to move when sleeping.


For the next 24 hours, I kept my fingers crossed, because if the gas bubble didn’t work, then I would have to have more invasive surgery called a vitrectomy which would involve cutting out the vitreous gel from the eye, and which carried much greater risks of bleeding and infection, and of cataracts forming, than was the case with the surgery performed to date.


The next day, to my great relief, he told me that the gas bubble was supporting the retinal tear well, and that I would not have to have a vitrectomy and I could now leave hospital – but that I would have to sleep sitting up, with my head tilted forward and to one side, for the next week until the gas was completely absorbed into the eye.


Sleepless nights


The doctor said it would take about a week for the gas bubble to disappear, but it actually took nearly three weeks. The first night home I could only sleep for 10 minutes, but eventually I got so tired that after a few days I was sleeping 5-6 hours a day in short sessions at a time. When walking around I had to keep my head tilted forward, so I couldn’t do much for three weeks except stare at the floor. Those were definitely the most boring three weeks of my life!


By the end of the three weeks, I was actually sleeping eight hours straight at night, propped up in a chair with my arms hanging over four large pillows like a rag doll to keep my head in the right position. When the gas bubble in my eye eventually disappeared, and the doctor told me I could go back to sleeping on a bed, I thought I was going to have the best night's sleep in my life - but I couldn't sleep at all! I had actually got so used to sleeping in a chair, I had to go through a reverse adjustment phase in order to be able to sleep on a bed again. It is amazing how the body adjusts. Maybe I should have stayed sleeping in a chair and then I would have been able to have good nights' sleep when doing long overnight flights.


The gas bubble procedure caused my retina to reattach (although vision was still quite blurred after a month) but not long after leaving hospital I did have a problem with some scar tissue from the first operation dropping to the bottom of the eye – which could have pulled the retina off again.


I had to have the eye checked every day, and at one stage I thought I was going to have to have a vitrectomy after all. I was advised that the vitrectomy would be done under local anaesthetic, which meant I would have seen everything that happens. I felt very queasy just thinking about it, but fortunately the scar tissue didn’t cause any problems in the ensuing weeks and I escaped having to have the vitrectomy.


The dreaded laser


However, I did have problems in the following few months with new holes appearing in other parts of the retina (these were picked up during the routine eye check-ups or when I noticed a sudden increase in floaters (which are actually specks of blood in the eye). These had to be treated by argon laser to ‘weld’ up the holes by burning the tissue around the hole in order to create scar tissue that would hold the retina in place. In all I had about ten bouts of laser treatment after leaving hospital to seal small holes or tears in the retina. The first session was terribly painful, and a few of the subsequent ones were too. I recall one session where my head was not properly strapped to the machine and I was sitting on a chair with roller castors. One of the laser bursts hit a nerve in the back of the eye, and it was so painful that I pulled my head back from the machine with so much force that the chair (with me on it) traveled several metres across the room!  Normally your head is strapped to the machine so that this doesn’t happen, but not all doctors bother to strap you in.

Over the next three months I had over 1,000 laser welds performed on the back of the eye (the doctor told me it looked like a lunar landscape through his opthalmoscope) including some performed in Bangkok and Bonn (Germany) when I was there on business and noticed increases in the floaters.


Several people have asked what it is like to have the argon laser welds performed on the eye.  It is difficult to describe because the pain is not like I have experienced in any other part of the body.  It is not an excruciating pain, but is quite unpleasant if the doctor turns the power up high.  I did not experience much pain from the laser that I had done in Bangkok, but that was because the doctor there used quite a low power setting – and when I returned to Kuala Lumpur my regular doctor insisted on reinforcing it with some more laser at a higher power.  Because the pain is experienced at the back of the eye, it is not possible to use an anaesthetic, so you have to grin and bear it.  Someone once asked me whether it was a sharp pain or a dull pain.  It actually feels like a cross between the two.  Fortunately the pain occurs only for the duration of the laser burst (a fraction of a second) but it is accompanied by a very bright green light which is uncomfortable in itself.  Not every laser burst causes pain.  At a relatively high setting, perhaps one in three bursts is painful – but you get nervous wondering whether the next one is going to be a painful one or not!


When the doctor in Bonn examined me, he said it looked like there were more retinal tears about to happen. When I got back to Kuala Lumpur (by then it was September), my eye surgeon said I had two choices. One was to take it easy for the next six months (with no travel) and go to the hospital to have the retina sealed with a laser every time a new tear occurs (least risky and least painful option), or the other option is to have the retina sealed with a laser 360 degrees around the outside to stop any retinal detachment occurring when I get new retinal tears (which would enable me to travel as it wouldn’t be so urgent to have the tears fixed).


Second opinion


He told me that the 360 degree treatment is quite painful and has to be done in two half hour sessions because it is difficult to stand the pain to have it done in one session. It is also a bit risky (risk of internal bleeding etc) so he insisted that I get a second opinion before considering the second option.


I told the doctor I had no choice but to take the second option as my job requires me to travel extensively and it is not an option for me to just stop traveling for six months. It would also mean that if a hole or tear appeared whilst I was in a country like Afghanistan, I wouldn’t have to worry about trying to get treatment in a place where there might not be any retinal specialists with the right equipment.


The following day I went to see Dr Seshan Lim, the consultant surgeon to whom Dr Leong had referred me.  Dr Leong said he was one of the two best eye surgeons in Malaysia.  Dr Lim subjected me to a very thorough examination (which was a bit uncomfortable because he was pushing the eyeball in all directions with a metal instrument, which Dr Leong never used to do). At the conclusion of the examination, he told me that he wasn’t satisfied that the benefits of doing a 360 degree weld would offset the risks of the procedure, and recommended against doing it.


As it turned out, I didn’t have any more problems with the eye after that time, so it was lucky for me that he recommended against that procedure.


Different opinions


I learnt from all these visits to different doctors that eye surgery is a very inexact science. It is not uncommon to find doctors giving different opinions on the same condition. A good example of that is the fact that the German doctor (who was a consultant in a specialist eye hospital) told me that the retina in my right eye was deteriorating, and that I would experience a retinal detachment in that eye in a very short time (it is apparently quite common for the second eye to experience a retinal detachment within two years of the first eye).

However, when I reported that to my Malaysian doctor, he completely disagreed saying there was no sign of any deterioration in the retina. That was nearly two years ago, and I have not had any trouble with the right eye yet.


A lot of people still ask me these days how my eye is. It is actually not very good, but it is strange that you never think about it until people ask you about it. That is because you get used to the condition. There is no pain or discomfort (I still have the buckle in it, but really wouldn’t know it was there) but the vision in the left eye is definitely not as good as it used to be.


I still get the occasional flashing lights in my left eye (these are more up and down now, rather than around the eye) and my doctor tells me this is a sign that the vitreous jelly in the eye is still pulling on the retina. But because my retina has been so well ‘welded’ to the back of the eye, he thinks it is unlikely any more holes will develop now. Some eye doctors will tell you that the process of the vitreous jelly contracting (which is called a ‘posterior vitreous detachment’) takes less than six months, but the fact that I am still experiencing flashes after nearly two years means that for some people it takes longer.
 
After the operations, my surgeon told me that my sight should improve to close to what it was before the retinal detachment in about three months. But after three months when it was still blurry, he said it might take six months. Then after six months, he said he might take a year. After a year, he admitted it might never improve, saying that the extent of recovery varied from person to person.


Watery vision


When I take an eye test these days, I can read the letters on the eye chart with the left eye one line up from what I used to, but everything is a little blurry and lines are not straight – they are always wavy. I feel like I am looking through a pane of glass in which there is water in the middle. As well, there are always a few floaters in the eye – not the black spots that I used to experience when the holes in the retina appeared, but more like small semi-transparent threads floating around in the eye.


However, when using both eyes, the vision problems in the left eye become almost unnoticeable. It seems that my brain is taking most of its input from the right eye and using the left eye just to provide the depth of field. I have got so used to the condition that it doesn’t worry me anymore. The only thing that would worry me is if I suffered a retinal detachment in the right eye too. As it is now nearly two years since the retinal detachment in my left eye, I am keeping my figures crossed that the luck I have experienced to date extends to not having a second detached retina. After two years I will be out of the danger period, and every year after that without any problems being experienced in the right eye improves my odds that I won’t experience a detached retina in that eye as well.


Despite the pain and discomfort I went through, I realise that I have been lucky. The surgeon that I had in Malaysia was very good. I had my eye checked in Australia in 2004 by a specialist who is reputed to be one of the best in the country – and he said the Malaysian surgeon had done a very good job.


A few months after coming out of hospital, I found a support group on the Internet at http://groups.yahoo.com/group/detached-retina  and reading about some of the experiences and suffering that other people with detached retinas had gone through (some having multiple operations and years of complications), I realised that mine had been a relatively simple case and I had escaped many of the complications that can arise from eye operations.


The reason for posting my story on my website is simply to alert others to the warning signs of a detached retina. It is not as uncommon as most people would think, and if it happens to you and you can recognise the symptoms early enough, you may be able to avoid a lot of what I went through.


If you experience flashing lights in your eye, followed by black floaters, do get it checked out as soon as you can, but if you see any black patches in the eye, then you must treat it as a medical emergency. You will feel no pain or discomfort, but don’t delay – get yourself to an eye doctor or a hospital as soon as you can.


A good website where you can learn more about detached retinas (and some of the other causes of detached retinas apart from aging) is at http://www.sightwise.org

 

Update January 2006


My luck with the right eye did not hold out. Last month when I was in the Philippines, I started to experience flashing in that eye too.  A couple of days after that I suddenly noticed the eye full of tiny black floaters – like specks of black pepper, thousands of them. I went straight to an eye specialist who examined the eye and said that I had started the posterior vitreous detachment in that eye, but there was no retinal tear or hole yet. He said that the black floaters were specks of blood and that I had probably suffered a very small hemorrhage of one of the tiny blood vessels in the eye as the vitreous jelly was pulling on the retina. He said that he could not laser anything – because there needs to be a hole or tear to laser – but suggested I observe the symptoms in the eye closely, and come back for another check-up if there was a noticeable increase in the floaters.

A few days later I flew up to Baguio in an unpressurised aircraft at 10,000 feet, and when I landed I noticed an increase in floaters as well as a thick black line in the upper part of the eye.  That worried me because it was not moving, so was not a floater, and I wondered whether it was a retinal tear.  After about an hour the black line disappeared, so that relieved my worry somewhat.


When I returned to Manila I had the eye checked again and this time the doctor found a retinal tear in exactly the position where I had seen the black line.  He surmised that the flap of the tear had reattached itself through gravity to the retina because it was on the bottom of the eye (if you see it at the top it is on the bottom) and that was why I had stopped seeing it.


He sealed the tear up with three rows of laser around it (I had forgotten after two and a half years how uncomfortable that was!) and recommended that I not fly for three or four days until the scar tissue had formed properly to help ensure that it did not develop into a detached retina (because the change in air pressure affects the pressure inside the eye).


I cancelled a trip I was about to make to Cebu, and rested in Manila for four days, and then returned to Kuala Lumpur, hoping that the flight wouldn’t cause any problems.


I had my eye checked immediately on return by Dr Lim (by this stage Dr Leong had moved to the UK to take up a position there) and he said the laser treatment done in Manila had sealed up the tear well, and there were no new tears as a result of the flight back.  In fact he said he believed that flying didn’t make any difference to whether you would experience retinal tears or not, which was a contrary opinion to what the doctor in the Philippines had expressed.  This seemed to be another example of doctors not agreeing on what causes retinal tears.  I remember Dr Leong had told me back in 2003 that he thought the change in pressure when flying might have an effect, but it hadn’t been proven.

The one thing that all the doctors do agree on though is that lifting heavy weights causes pressure in the eye that can cause retinal tears.  So at the moment I am trying my best to avoid lifting anything heavy so not to aggravate the condition.  My eye is still flashing a lot, and it is full of floaters (both the pepper-like ones and the larger translucent ones that look like eye lashes floating around in the eye) so it is going through a very active posterior vitreous detachment.

Each night before I go to bed, and each morning when I wake up, I stand in front of a bright white wall and look carefully around the perimeter of the eye for any signs of a black line or black patch that is not moving which would indicate a new retinal tear. Spotting the one in Baguio, and getting it sealed up quickly, undoubtedly saved it from developing into a detached retina. I hope I can do that for any other tears that develop.

Other than that, I am just keeping my fingers crossed.

 

Update March 2006


 

It is now the last week of March – three months after the retinal tear in my right eye – and I haven’t had any more problems with it other than a slight increase in floaters.  It is still flashing a lot (which my doctor says is unusual because a vitreous detachment normal only takes about two months to complete) so I will continue to be careful about lifting any heavy weights.

 

Tomorrow I start traveling by air again, so I hope the doctors who say this doesn’t affect the eye are right.  I don’t want to be the guinea pig that proves them wrong.

 

 

Update July 2006


  

After more than three months of regular traveling by air, I am still experiencing flashing in the right eye, but fortunately no tears. So last week I went for a check-up with Dr Lim.  His diagnosis was that all was well, and my chances of getting a detached retina in the right eye were now “0.01 per cent”.  That was very reassuring.  “I don’t need to see you again,” he said. That was even more reassuring. 

 

 

 

I was about to take my leave, when Dr Lim added “but we'd better check your eye pressure before you go”.  Just as well he did, because he discovered that the intraocular pressure in both eyes was elevated – especially in the left eye in which I had had most of the surgery.  He explained that glaucoma – the medical term for elevated pressure in the eye – was a not uncommon side effect of eye surgery. He prescribed some Timolol eye drops which he said should keep the pressure under control.  A few months later, when I went back for an eye check-up, he found the pressure in the left eye still a little high, so prescribed some Xalatan drops for that eye.  Since then I have found that a drop of Timolol in both eyes twice a day, and one drop of Xalatan in the left eye once a day keeps my intraocular pressure under control.

So Dr Lim's comment that he didn't need to see me again was a little premature, but at least pressure checks on the eye are quick and easy to do, and don't require dilating the eye.

 

Update August 2010


It’s now more than seven years since my first eye surgery and everything is under control. I’ve had no further retinal detachments and am keeping my glaucoma under control with the eye drops.  The only other complication has been the early development of cataracts.  I was warned about that by Dr Leong way back in 2003.  He told me that eye surgery sometimes causes accelerated cataract formation.  Now seven years later I have a moderate cataract in the left eye and a minor cataract in the right eye, but at this stage they are not affecting my sight enough to justify cataract surgery.  My brother-in-law (the Australian eye surgeon) gave me a check-up a few days ago when I was in Townsville, and he told me that cataracts don’t develop at an even pace – sometimes they get worse in quite a short time, but sometimes they don’t get worse for many years – so it’s hard to say when I will need the left eye done.

So life goes on.  My eyesight has not improved since the eye surgery, but it has not got any worse.  I can read the second line from the bottom of a standard eye chart with my right eye and the third line from the bottom with my left eye.  In the last seven years I have made about  50-70 flights a year, so it does appear that flying does not aggravate the condition – although I am convinced that flying in that unpressurised aircraft in the Philippines in 2006 contributed to the slight detachment that I suffered in the right eye.

If you are reading this because you have experienced a detached retina, and you found this through an Internet search, then I hope my story has been of some help to you.

You may wish to also browse my guestbook as many readers have commented on their own experiences with detached retinas there.