01 Trabeculectomy – my story

TRABECULECTOMY

[ATTENTION READER: This document contains my personal story, my personal observations and my personal interpretations. It is not intended that the reader should use this to make any decisions based on symptoms that they or any one else may have. I am not a medical practitioner nor am I qualified in any way to give medical advice to anyone. The intent of this document is purely for me to record my own story for my own benefit. Should anyone feel that they have similar symptoms to what I have described, then the only advice I can offer is to get it checked by a professional ophthalmologist and it is critical that this be done immediately. You must not put it off just because there is no pain! If nothing else, my story shows you this.]

June 20th, 2007

It had rained throughout the night, so it was an overcast but typically warm and humid Bangkok morning. I woke to the sound of the alarm and immediately hit the snooze for another five minutes of what felt like much needed sleep. The alarm sounded again, and I hit the snooze again, actually twice more, before I could finally rouse myself off the bed to get started on this life changing day.

The lead up to this day had been going on for many months – ever since the first onset of very high intraocular pressure in January this year. On that occasion, I knew exactly what it was from my long personal experience with glaucoma. The Rutnin Eye hospital was quite near to the apartment where I was staying at that time, so I did what I knew I would have to do sometime soon, and that was to go and report to the specialist there for a check and get on with the treatment.

At first, the threat of another round of surgical intervention seemed a remote possibility. This hospital has a very good reputation and did turn out to be one of the best in the world, and I felt super fortunate that I was located so close to the place and that it was quite convenient for me to go there and receive treatment for this very serious condition. HRH The Queen of Thailand attended this very hospital for a detached retina only last year, so I guess if it was the choice of the Palace for her, then it goes without saying that it is very much first rate.

Upon arrival at the reception of the hospital I informed the staff that I had glaucoma and needed to see a specialist. They seemed skeptical that I should know what my problem was but did refer me to a doctor who, as I was to find out later, was one of the leading glaucoma specialists in the world.

My treatment went through all the normal phases. I was required to undergo the full range of tests and recording of my condition. This included retina photography, digital graph plotting of the retina thickness, field vision tests, and the normal intraocular pressure testing. All tests showed that my glaucoma was progressing, but seemed manageable with medication in the form of eye drops. This range of tests and diagnosis tools were quite new to me, and I was certainly impressed by the way that other technology, such as digital imaging, was applied to ophthalmology. The doctor can actually see in large photographic images the actual retina and nerves within the eye allowing complete assessment of the condition. Medication being the first line of treatment, I went onto the program and was monitored very regularly. It was just so fortunate that I was in Bangkok for this testing and treatment because the costs of such in Australia or (heaven forbid) in the United States, would have been quite prohibitive.

My condition is actually secondary glaucoma. That is, I don’t actually suffer from glaucoma but rather from pseudo exfoliation syndrome. What this means in simple terms is that the fluid in my eye contains particles of XFM, or exfoliation material. With all the wonderful medical research that goes on in these days, there is quite little known about this problem or what causes it. In fact, there is not much known about the actual composition of the material, except that it seems to come from within the anterior eye chamber itself and then causes drainage problems for the aqueous humor. This fluid is continuously produced and fed into the anterior eye chamber and is allowed to escape through the trabecular meshwork, the normal drainage system for the eyes. However, when there is a lot of XFM present, the drainage, or angle of the eye, becomes clogged, and so the intraocular pressure rises causing a glaucoma like problem. The intraocular pressure is maintained in this way to be at the required pressure to maintain the form and shape of the front of the eye. What a miraculous mechanism we all have right there and generally we take it so much for granted. A lot like so many other of our normal bodily functions. All go on without us having to do anything but get on with our lives – right up until something happens to upset the balance.

I have not only the exfoliation syndrome, but also a problem caused by pigment release within the eye and deposits on the iris and also the trabecular meshwork, which compounds the problem. The production of fluid in the eye is not regulated – that is, it is just a continuous process, so any interruption to the correct drainage causes a rise in the pressure, that is, glaucoma. Glaucoma can also be caused by an excess production of fluid in the eye and this is called open angle glaucoma. The angle, or drainage is not interrupted, but the production of fluid for mostly unexplained reasons, goes into overdrive and then cannot be accommodated by the normal drainage ability.

However, that does not seem to be the case for me. Glaucoma is a serious problem because high intraocular pressure is immediately transferred to the retina and causes compression of the optic arteries. Just like a tourniquet on an injured limb, there is a loss of blood supply to the retina and optic nerve. Without a blood supply, the optic nerves actually die and can never regenerate. This is the major threat of glaucoma, that once the damage is done, there is no going back, no cure, no fix for the problem. Once done, it is done for the life of the sufferer. There are other wonderful techniques with transplants for eye problems but this is not one of them. It is just not possible to transplant the optic nerve with all the complex mechanisms that transfer the images from the retina to the brain. Another big problem with the condition is that it is generally quite painless, and most people don’t seek medical assistance until it is much too late to try to intervene medically or surgically.

If you could call someone with a condition which threatens to take away his sight fortunate, then I would think that I qualify. As mentioned, typical open angle glaucoma, OAG, has few if any symptoms. It is the silent thief of sight. Just imagine if Ray Charles was not blind and how that gifted individual could have achieved. He was a very rare exception in that he succeeded with his career in spite of the blindness, unlike so many, many cases of undiagnosed open angle glaucoma. He was born normally sighted, but glaucoma took his sight in early childhood. The tragedy for him has highlighted the problem to some extent, but it still goes on every day and generally we don’t even hear of it.

My case was quite different in that, because my glaucoma was secondary and caused by the XFM, it displayed symptoms similar to closed angle glaucoma. Closed angle glaucoma is caused when the trabecular meshwork, or drainage angle of the eye is suddenly blocked by collapsing forward of the iris and causes dramatic symptoms that generally cause the sufferer to go to a doctor and get advice. These symptoms do include pain, but most noticeably, an unusual sight anomaly of seeing halos around points of light against a dark background such as oncoming car headlights. When this happens, it is a medical emergency, and blindness can result in very quickly if not treated promptly and the pressure relieved. Unfortunately, many people will still try to ignore the symptoms and hope that it will go away, and only finally seek medical advice when a great deal of damage is already done. In these cases, the doctor can only have bad news for the unfortunate sufferer.

It was the halos of light that I noticed at that first time, some 15 years ago, that made me ask my doctor what was causing it. This is another fortunate event in this whole story because I noticed the halos around car headlights as I was on the way to my doctor one evening because of a bout of the flu. I generally don’t believe in coincidence, but….. well…… this was indeed a coincidence…… of divine intervention……. or providence….. or fate….. or just plain old dumb luck. Whatever…. but there I was, going to the doctor and seeing halos around car headlights coming toward me. Otherwise I would likely have ignored it and thought it would go away, just as so many other people would do and have done to their grief. Also, my problem is only in one eye, so with the different views from each eye, I knew that it was my problem, and not fog in the air or an oily film on the windshield or any other such external issue that I might have been able to think of for which I could attribute the lights behaving in that way.

Up until that time I had not even heard the word glaucoma much less understood what that could mean long term for me when I was diagnosed. My doctor at that time was quite intrigued to see such an unusual case of a disease that was so rarely seen, especially in someone as young as I was at that time. A doctor seeing something that triggers their curiosity is of little comfort to the sufferer, especially when the ramifications are fully understood. Of course, she took all the appropriate actions. She woke up the people at the hospital, ordered me (certainly not asked me) to go there immediately, issued me with two tablets which I took as directed, and sent me off to get started with my new life with glaucoma. I have only found out recently what the two tablets were, but have in the last six months used this medication frequently.

My first experiences and treatment of glaucoma followed the normal pattern – medication to see if it could be controlled but finally conceding to the inevitable outcome of surgical intervention, my first trabeculectomy. When that took place at that time I did not have the advantage of internet reference and research so I was quite ignorant of the full scope of the disease or what was really happening. Also, doctors did not believe that it was very important to enlighten the patient too much about their actual condition. However, the surgery was reasonably successful and I had a period of nearly 15 years of almost no progression of the problem. It did slowly come back when the surgically placed vent in the top of my eye started to close although it was being quite well managed with one drop of glaucoma medication per day.

This is why I was quite surprised that, early this year when the problem started to seriously manifest itself again, I was a little unprepared for what was coming next. The specialist, Dr Chaiwat, is very professional and knowledgeable so I was quite comfortable with his recommendations and advice. Additional medication in the form of more eye drops was prescribed and I conscientiously followed the instructions to the letter. In the short term, this seemed to work but soon showed to be inadequate as the disease was still progressing. Changes and additions to the medication also failed over time and it was obvious that something more radical was required to bring the problem under control. By this time, I had done a considerable amount of reading on the subject. The internet is truly a modern day marvel for access to information on everything. Also, I have contacted numerous research foundations and some of them have very kindly sent me study papers. Through email, I have contacted doctors all over the world to be sure that I had the best information that I could possibly get. Many of them were very helpful although their advice is always very guarded as it has to be in so diverse world as medicine. I have now a good knowledge of the various forms of the disease, all the medications that can be used to treat it as well as the current state of research into causes and new treatments.

As mentioned, my problem is secondary glaucoma. That is, my glaucoma is caused by the presence of exfoliation material and pigment dispersion within the aqueous humor in the anterior chamber of my eye, causing blockages of the trabecular meshwork, or drainage facility of the eye, and so the intraocular pressure rises with the potential to permanently rob me of my sight. With my knowledge of the disease, I was able to discuss on a reasonably intelligent level with my specialist doctor what was happening and what alternatives were available. In fact, Dr Chaiwat was so impressed with my understanding of the disease, current medical industry knowledge, medications available, and the prognosis and potential dangers, he recommended to me that I should write my own paper for the medical profession about my findings. Quite flattering and I think that he enjoys seeing me as a patient. But that is not greatly helpful for relief or, optimistically, cures of my own condition. It is very helpful for me to understand and to appreciate the importance of what he is trying to do for me. I just might write a paper one day, but this document is going to have to suffice for the moment.

The day of my second trabeculectomy has now arrived and I was about as prepared and informed as any patient could possibly be for such a dramatic event in their life. I knew full well what caused the problem, what medications were available, why we had delayed to this point before resorting to the surgical intervention, and what are the potential complications and success rates. I knew that we really had exhausted all possible alternatives to what is, in the current medical arsenal of treatments before this, the final step. There can be further similar operations, but this cannot go on forever and it is a possible scenario to run out of options. I hope that the end of this document does not have to record that.

Just for the record, I should also record here another possible treatment that I have personal experience of but I have not previously mentioned. Only four weeks ago, in consultation with Dr Chaiwat, I agreed to the newer physical intervention treatment and that is by laser surgery. This treatment is quite new, only approved by the US FDA in 2001 for general use. It involves the use of a high powered laser to “shoot” holes in the trabecular meshwork to assist with the drainage of the aqueous humor, thereby allowing increased drainage, and so to reduce the build up of intraocular pressure. The procedure is less complicated than intrusive surgery, involves less actual physical damage so reducing amount of treatment and also the threat of infection and bleeding that may occur with traditional physical measures.  These are the main issues that make the procedure attractive to both doctors and patients alike. A very precise laser beam is focused on the trabecular meshwork, and actually burns holes therein so that it can possibly allow for increased drainage of the fluid as it is produced. The success rate for patients with exfoliation syndrome is encouraging but certainly not conclusive (this process being so new there is little historic data to build up a good medical picture and allow for better prediction of results). With this procedure there is also a possibility for a negative effect. I have not researched this a lot just yet as it was not particularly relevant to me. It was described to me as paradoxical rise in pressure after the procedure. How this happens I don’t really know but I suspect that it is not known by the medical profession (If it were known, then they would not call it a paradox, I guess?) I think that it is an anomaly with certain individuals but again, there has not been enough experience to allow the full research into this issue.

I consented to the procedure in my case to prove two points: First, that I thought that, at best, it would be (assuming it worked to optimistic prediction) a shorter term fix as indicated by my research, and second that if it showed very good results it may be helpful to suffers around the world to make informed choices as presented by their medical professionals.

My personal experience of the laser procedure in detail (I know, I digress from the trabeculectomy operation day, but I will get back to that in a moment) – I arrived at the hospital and was directed to the room specially set up for this procedure. Doctor Chaiwat arrived and did a quick check of the progress of my disease but only by checking the pressure. We concluded again that the pressure was not going to be sufficiently controlled by medication and so he proceeded with the laser treatment. This, as complicated as it may sound, was actually quite simple from a patients’ perspective. The equipment is, of course, quite high tech, and the laser has to be controlled in intensity and directed very precisely to the site. After first applying an anesthetic to my eye, I sat up to the machine with my head on a jig to keep it very still. He can then manipulate a lens directly in contact with the front of my eye. Through this lens he is able to actually see inside the eye chamber and also aim and fire the laser shots into the trabecular meshwork. He gave me 50 shots, so in effect, burned in 50 tiny holes to try to assist the drainage process. The laser flashes appeared to me to be a forest green in color but were quite painless. Naturally this makes the eye very irritated and red, and I was told that around six weeks is required for a healing and settling down before it can be fully determined to what degree the process has helped the condition.

Unfortunately, in my case, the laser treatment was not successful, and seemed to do very little to allow the pressure to escape and keep me out of the danger zone. After three weeks of more pressure spikes and generally high pressure readings it became clear that we would have to go to the full trabeculectomy operation to get the results needed. Because of my previous surgery in Australia 15 years ago, it is now more difficult and the doctor has warned that complications are much more likely and the success rate is lower than for first time operations. He quoted a success rate of only around 50 to 60% which was not very encouraging, but given that we had exhausted all other avenues of treatment, it was time to get on with it without delay.

So, here I am on this muggy Bangkok morning making my way to the eye hospital once again and this time to have the operation done and hopefully start another long period of time without the need for continuous medication to relieve the intraocular pressure.

Upon arrival there was the usual checking in but this time I was directed to the 4th floor, the location of the operating theatres and preparation rooms. Very professional nursing staff guided me through the preparation steps, one of which was to have the eye lashes  of my right eye cut off entirely. This was not enjoyable by any means, but the nurse assured me that they would grow back within six to eight weeks that it was necessary to remove them for the operation to lessen the threat of infection. I was then settled into a very comfortable reclining arm chair to wait for the time to go to the theatre.

The wait was to be about two hours which was fine for me. I actually dozed off a few times, but the nurse came back to me about every 20 minutes or so to administer what I think was local anesthetic in the form of drops to the eye.

On the previous Monday, when the doctor informed me that it was time to get the surgery done and without delay, they did some preparation tests. A blood test was also ordered, and when I inquired about this I was told that it was for Aids only. I found it interesting that there were no other issues that were a worry to any one of the medical profession, only that their patient may be infected with HIV. I have done quite a lot of personal research into that disease also, but that is a discussion for another time. After arrival on this, the day of the actual operation, I asked the nurse if she had the results of my blood test, and she did not seem to know. This did make me wonder if they seriously wanted or needed to know, or if they were just following a procedure that is insisted upon by some authority – an opportunity to monitor HIV infection rates with the cost being borne by the patients perhaps. Later she returned with my test result and informed me with a big smile that it was negative. No surprise for me, but the whole episode did make me wonder how much of the things done were just to fulfill some bureaucratic process more than a medical necessity for the issues at hand. (I know, I know – I am just a naturally skeptical kind of guy).

The moment arrives, and I am escorted to the anti room of the operating theatre and asked to lie down on the gurney which actually becomes the operating table. Now they start with all the trappings of surgery. Layers of crispy starched cloth placed over me, my arms were loosely tied so that I could not reach up to touch my face, a cloth cap, similar to a shower cap was placed on my head to cover my hair entirely, a small oxygen mask placed on my chest ready for use later, and there I waited.

I guess that feelings of trepidation would be considered very normal but I was not particularly nervous at all. I had conditioned my thinking for a long time about this moment. Unlike my first operation so long ago, for this operation I would be awake during the whole process. That definitely adds a whole new dimension to the experience. They came and wheeled me into the theatre and, staring up at the ceiling, all I could do was watch the lights and ceiling fittings go by. A couple of times a head in a cap and mask, essentially a pair of smiling eyes, would appear in my field of vision to ask in a cheerful tone if I was feeling okay. There seemed to be quite a lot of people all busy with whatever things they had to do and all chatting away together. Now, this would have been informative if it were all in English, but this is happening in Thailand, and my grasp of the Thai language is only good enough for very general conversation at slow rates. But anyway, it was obvious that they were just doing their normal jobs on just another working day. Of course, it was anything but routine for me, but I found that their casual chit chat and no fuss attitudes quite comforting. I certainly did not want to be fussed over – deliberately trying to calm me down, as this would have only served to make me nervous for sure.

As the final touches were applied I became aware that the surgeon had arrived. The nursing staff stopped their gossipy chat and the atmosphere became a little more formal. Another cloth was placed over my face leaving only my right eye and a little area around it exposed. Then there was a kind of sticky plastic sheet, kind of like that frosty sticky tape, placed over my eye leaving only my actual eye showing. So, here I was entirely covered except for just my eye showing to the world. Quite interesting, but making me feel at that time not as a whole person, but only a disembodied eye presented for the medical staff to get to work on. Now I can see almost nothing as my vision was very blurred, probably due to the drops and also the distortion caused by all the dressings. Because of the anesthetic drops, there was little feeling and the doctor started talking to me from somewhere above in the haze of fuzzy objects and balls of fuzzy light moving about from somewhere distant in the room. He asked me to look down, up, around, and was pleased with the movement and that I could adjust the position of my eye ball for him as required throughout the operation. I had been told that my cooperation during the operation was critical and why it was now considered so important that I be fully conscious during the procedure. It made me wonder how it was done all those years ago when I was asleep for the whole thing.

There were some little sharp jabs of pain occasionally and I told the doctor that I could feel him doing something but that the pain was tolerable for a short time. He kept me assured that we were progressing very nicely and he was impressed that I did not move at all and maintained the position of my eye to best advantage him with his tasks. Again, the doctor was aware that I had a very good understanding of everything that he was doing and so was able to do my part to assist in every way available to me as the patient.

I think that the operation lasted about 20 minutes, but actually I am not really sure how long I was there. 20 minutes is just my guess, but it was not unduly stressful. Naturally, I was relieved when it was over and I was wheeled out, and the nurses immediately stripped off all the surgical trappings and asked me to sit up on the gurney. It seemed very quick to me but I did not have any trouble and immediately stood up and walked the rest of the way back to the post op room. There were no actual bandages applied to my eye. It was just left open but they put a plastic guard over it and taped it on. This was just to ensure that I did not touch my eye, even inadvertently. Naturally, it felt very irritated, so the urge to rub it was almost irresistible. It was weeping tears continuously and I had to mop them up as they appeared from under the plastic guard – not greatly painful, but certainly not pleasant.

Now came the waiting. The time now was 11.30am and I had to wait to have a check up with the surgeon later in the afternoon. He starts the checks for all the patients at 4.00pm, so I was not optimistic of getting out of there before 6.00pm, a prediction that turned out to be quite accurate. No one enjoys sitting around doing nothing, and even worse to be just waiting around in a hospital – no one’s favorite place. Finally the time crawled around but the surgeon had many patients to see, and got to me about an hour after his 4pm start. He had a quick look using the examination microscope and informed me that it was a successful operation, that there had been no complications at all, and he was very happy with all aspects. There was some worry earlier about placing the new vent beside where the old one was (my first trabeculectomy) as this is known to cause complications in many cases. The good news was that such worries did not occur and the final result seems to be as good as we had hoped it would be. As mentioned, this doctor is among the best in the world and I do feel fortunate that he was the one who ended up performing this operation.

Now it is time to start the healing process again. Actually, we don’t want the vent site to heal up at all. This is the tricky part. We want the vent to stay open to allow the fluid to escape and prevent build up of pressure. The vent is actually a tiny flap cut into the outer surface of the eye but then there are some tiny stitches placed on it which can be later cut using a laser procedure to give the surgeon the ability to make “adjustments” without having to go back to the operating theatre.

For the moment, my eye is very red, feeling quite irritated and still weeping tears continuously. Also, the temptation to wipe it, or rub it or the want to go and flush it through with water is very strong. Unfortunately, all of the above are prohibited at the moment, and will continue to be for at least three weeks or more. Right now, the greatest fear is infection. Any infection at this point would be disastrous and quite likely constitute a medical emergency, the ramifications of which I would not care to go into. Sufficient to say that with care, I will not have to worry about that. Hopefully you will not read about such an event later in this document.

The operation today is a big turning point for me. Previous to this I was on three different kinds of drops to be placed in my eye every day. Two of these had to be put in three times per day and the other only one time per day. So that means that I had to put in seven drops of various medications at various times throughout every day. As well, I had to take a diuretic when the pressure came right up in what I called a pressure “episode” or spike. These events are not normal and I did not find any reports of these pressure spikes in any of the research that I did. I had speculated to the doctor that there must be something that triggers a release of the exfoliation material, this then blocks the angle of my eye leading to a sudden rise in pressure. When you read all the research available on the subject, you soon find out that the answer is that no one knows the answer. In any event, when I had an episode, the only thing that worked was for me to take the two diuretic tablets. (These are a specific diuretic medication and I will not mention the name or the dosage as I would not want anyone to read this and go and self medicate.) This really is a sledge hammer kind of treatment as it does very quickly control the intraocular pressure, but the side effects are quite unpleasant. I would only resort to this action when absolutely necessary, and that would be when there were halos showing up around lights again. I could also feel it when the pressure was going up although there is no pain at all. It is just a very vague sensation that normally a person would just ignore as being something very minor.

Over the years, I came to know this sensation and learned what to do when it was happening. I found out about the emergency diuretic treatment on my own. One night only a few months ago, I was experiencing what I knew was a severe pressure spike but I was a long way from the eye hospital where I could seek treatment. I made a phone call to the hospital, and the night nursing staff could only recommend that I get to the hospital the next day to see a doctor. I was experiencing a medical emergency here and the advice was not good enough by a long way I knew only too well. I remembered from that very first experience so long ago how the doctor gave me two pills and how the specialist, by the time that I got to the hospital that night, said that the pressure was mostly relieved by that medication. I had also done the research by that time, and I knew what these pills and the dosage rate was, so I went to three hospitals nearby before I could finally source some of these. A the third hospital I did find a doctor working late at night who would give me what I knew and he eventually believed I needed, even though he was not an ophthalmologist. Because I could explain to him what was happening, and that I demonstrated that I knew what I was talking about, and that he believed that I was experiencing a medical emergency, he gave me a supply of the pills. These were a real sight saver for me over the next couple of months because of the many episodes of super high pressure episodes that I later experienced. Only these pills were my ultimate defense when the medications failed due to the aparent sudden release of XFM.

The situation now is that we have good reason to be optimistic about the outcome. I now have to place eye drops for antibiotic action, and a steroid drop to help with the inflammation. I am also taking antibiotics orally and this is undoubtedly overkill, but better to just ensure that any infection, should it get started, is not allowed to progress. Of course, all the glaucoma medications mentioned above have to stop completely. That is good news for me as they all had side effects and certainly were very inconvenient to have to carry with me and administer all the time. They are also quite expensive, and the supply of all this was becoming an economic burden. The reason that they are no longer required is that now the surgically placed vent in my eye will accommodate the drainage so there should be no need to have to medicate to control the production of the fluid which, broadly speaking, is all that the glaucoma medications actually do. Also, should the vent not actually operate because of the limited production of fluid caused by the glaucoma medication, then it would tend to heal quickly, and as mentioned, healing in this case is not what is wanted.

So, I came to the close of the day, but the end of my glaucoma story has not happened yet. Actually, like so many things in life, this story will never have an actual ending. Life is not a destination, only a journey so, moving forward, I feel very happy about all the events so far.

Update 22 June
Today I went to the hospital again, just for a quick check and to allow the doctor to satisfy himself that there were no unexpected results. The waiting time at the hospital was thankfully quite short and the actual time in front of the doctor was only about 5 minutes. He just took a quick look into the eye, checked the actual surgery site, and said that he was pleased with the progress. He also said that the pressure was very low. When questioned further, he said that it would be less than 10, which is indeed very low. I asked how he could know this without actually doing a pressure test, and he informed me that the cornea in the front of the eye appears wrinkled. This accounts for the blurry vision that I am experiencing and, when you think that it is only the intraocular pressure that maintains the form of the front of the eye, it is easy to understand. Right now, my eye is like a balloon that is almost completely deflated. As the vent heals a little, the pressure will come up again, and this effect will go away.

Update 23 June
Today is Saturday, and I made yet another trip to the doctor to check the progress. He has indicated that the pressure is still very low, so there is nothing to do now except to leave it more time. When the healing starts to take place, it will become evident just how big the vent actually has to be, and he will very likely have to “adjust” it a little by clearing away some of the stitches with the laser.

Update 25 June
Another Monday in the office, and once again I left early to go to the hospital for the visit to the doctor for the check on progress. Dr Chaiwat looked into my eye for about one minute, and declared that the progress was very good and that the pressure was still very low. Essentially, apart from some progress in the normal recovery from the operation, the situation was unchanged. The redness in my eye is now not so noticeable and I am very happy with the feeling of not having to put in medications for glaucoma. I have another appointment on Wednesday this week and the doctor said that he would be removing some stitches on that day. I asked about if the pressure was expected to rise before then, and he said that it probably would not. This was interesting, as I thought that the stitches would not be removed unless the pressure rose first. He told me that the stitches are a foreign body in the eye, and needed to be removed as they only cause irritation, and that this is the normal procedure. The pressure is still expected to rise over time, and I guess that if that is too much, then it will be back to the glaucoma medications again to keep it within acceptable levels. Of course, I should not have to return to the levels of medication that I was on prior to the operation. For now, it is very much a “wait and see” situation. No matter what happens, I am very confident that it has been successful and will be better for the long term.

Update 27 June
Today I went to the hospital once again. This time is the time that the doctor promised to take out the stitches, and this was just what happened – but not in the way that I had expected at all. I arrived at the hospital and after registration, was taken to the treatment room and there was given drops into the eye every 5 minutes for half an hour. These are anesthetic drops once again to cover the procedure of removal of the stitches, and I did think that I would then go up to the laser room for their cutting. However, instead I was sent to the normal examination room for the doctor and waited for over an hour to get in to see him. He then checked it and said that the progress was really very good. Actually, he did seem genuinely pleased but then again, it is all his own work after all. (I told you I was a cynical guy.) I told him that he did do good work, and he said that he has been doing such operations for 25 years, to which I responded that he should be getting the hang of it by now. He did enjoy the humor and we had a great laugh together to the puzzled looks of everyone else in the room (the doctor and I are the only ones able to speak English).

He then said that he would remove two of the three stitches, and that this was to be cut and removed manually, just as it would be done from a cut anywhere else on your skin. Interesting I thought, and quite unexpected, but the doctor told me that it is very simple and easy so we got started. It took less than 2 minutes for him to cut and remove the stitches, and again he was very pleased with the result, and I now have to return on Saturday to have the last one taken out. Given that this is pretty much micro surgery under the microscope, doing it so simply in a couple of minutes is another testament to this doctor’s skill and experience.

That is about it for this update, as there was not a lot else to be said. Tonight my eye is still quite red, but feeling a lot less irritated even after the intrusion today, so that is a very welcome improvement.

Update 30 June
Well, another visit to the Rutnin Eye Hospital to see Dr. Chaiwat today. Today is Saturday, so there was at least no interruption to the work schedule for this appointment. This time, I was sent directly to the doctor’s examination room, the normal room in which he sees his patients. I was a little confused as I had thought that he was going to take out the last remaining stitch today, as he had mentioned. If that were going to happen, then I would have to go to the treatment room first, and have the rounds of anesthetic drops put in. When I did get in to see him, the nurse wanted to put in the yellow drops which are the normal preparation to getting the pressure reading, but I told her that I thought this was not right, and wanted her to check with the doctor about that first. It seemed that he had ordered this, and so it was done. Dr. Chaiwat then took a look at the site of the operation again, and then took the pressure reading, which showed that it was still only at 6, which is still very low.

With this reading, he said that we should wait at least another week before doing anything further, as it may prove to be unnecessary to take out the last stitch, and the operation will have been successful enough as it is now. That is great news again, and I do think that I am getting to the end of this quite long episode, and should have now a nice long period without having to worry about this condition. Further updates to this journal will surely tell all.

Update 07 July
The week has now gone by, and I have just returned from another visit to the doctor. Again he was very happy with the result, and that the vent made to relieve the pressure was working really well. I was a little concerned today because I was doing a bit of running around, and the weather, as always for Bangkok, was quite hot. Actually, the rainy season seems to have started early this year, and we are getting quite heavy rain storms almost every day, and this is only adding humidity to the normal heat, so not really comfortable. It is okay if you do not have to rush about outside too much, but you soon get very steamy and hot when out and about.

The only other thing that we did today was to take the pressure reading, and it was only up to 9, so that was about as good as it could possibly be at this stage. We do seem to have kicked a goal on this thing. Although still rather early, only two and a half weeks after the surgery, it is all going to the best possible expectation, so fingers crossed that it all stays to this game plan.

My next appointment is in two weeks time, and this will be the longest period without a visit to the eye hospital for many months, so more good news. The target time that we are working toward, and the time when the real results will be in, is six weeks following surgery. I have to continue to put in the two lots of eye drops, but one of them, the steroid one, can now be only two times per day, but the other one is still four times per day. This medication has to be continued right up until the six weeks post op time.

More on this in a couple of weeks, but all going great so far.

Special report of LEFT eye event – 10 JULY

This morning I woke up and felt some pain in my left eye. Strange that, because I never have had any problems with my left eye, only the right with the glaucoma problems. The pain got a lot worse in the first hour, and I started to get quite worried. It was not just a pain, but really severe irritation and more like I had scratched the eyeball or some other such problem. As I got ready for to go to the office as normal, the irritation became quite unbearable, so I was forced to give up the idea of ignoring it and called Dr Chaiwat. He was also a bit concerned (as all doctors have to be) but said that he is not in Bangkok at the moment. He suggested that I go immediately to the hospital and have one of his colleagues check it out.

To get to the hospital from where I was staying I had to go on a motorcycle taxi to the sky-train, and then on the subway, then walk to the hospital. All throughout the trip I was in considerable pain, and it was very difficult to see, as both eyes were watering profusely, and even started my nose running as well. I guess I was not a happy sight as I made my way there and announced my arrival at the reception. I asked for an appointment with any doctor as soon as possible, and I think that the staff did rush the appointment through. I had to wait only about 30 minutes before I was in front of the doctor. This doctor was a really cute little Thai lady, spoke perfect English, and she looked to be about 19 years old. We chatted a bit, and I did find that she is 7 years out of medical school and now about 30 years old. Wow, quite a nice site for my sore eyes.

She tried to take a look, and I could not stand for her to touch anywhere near the eye, such was my level of discomfort. Some drops were put in the offending eye which did sting a lot for a minute or two, but then the pain eased off and this was a great relief. Through her microscope she was then able to take a good look around in there but could not find any foreign matter that would cause any problem. However she found that there is a large scratch on the cornea and this, of course, is what is causing the pain. Just how the damage occurred is still unknown, but maybe I scratched at my eye in my sleep, or just as I woke up and I self inflicted the damage in that way. (Yes, I was sleeping alone – come on now, keep on subject here!) I am thinking of sleeping with a motorcycle helmet on in the future.

I now have some drops that are only lubricating and soothing to help me while the scratch heals up. Thankfully it was nothing more serious than this, but it was a bit of a scare for a while, and just so painful. It really is a misery when you get any injury to the eye, and now I cringe whenever I see people doing work such as grinding without using any eye protection whatsoever. This is so common here in Thailand, but safety precautions are not high on the priority list in this country. I have learned my lesson about the value of keeping safe with simple things and I try to pass the message on wherever I can. But that tends to be viewed as preaching, and people will only listen to and do what they want to hear anyway.

Update 21 July
Today I had the usual check up and the doctor took a pressure reading but that was all. He was very pleased again, and said that there was almost no inflammation, so that was another really good sign. He cut down again the drops that I have to put into the eye for post surgery care. The pressure readings were 12 in left eye, and only 10 in the right. That is as good as it gets, and really a great relief to find that all is going so very well and I can cautiously say that complete success seems to have been achieved.

I really do have to take my hat off to this doctor and this facility. They treat so many people every day, and Dr. Chaiwat works really long hours. The costs are just so much lower than in the west and I am sure that his income is a fraction of what he could earn if he were to move over to America. I am convinced that he stays here working so hard because of a genuine love of his country and his fellow Thais – although, he does in his professional manner, treat many foreigners with the same level of dedication and care. It has been quite an experience and one that I will never forget and I am so thankful that medical science has advanced so far, and that the treatments are in the hands of such people as Dr. Chaiwat. My next appointment is in another two weeks, so hopefully that will be the time when we will discontinue all medications and start the longer term periodical checking only.

Update 04 August
Another visit to the doctor today, and this time, the right eye was still at a very low pressure. The reading was 12 so that was a very good result once again. Being now the six weeks after the surgery and the pressure seems to be controlled really well, I can now relax a little about this problem. At this time, there is no need to put in any drops for either glaucoma or for the post operative treatment. Wonderful! This is the first time in many years that I don’t have to put drops in my eye.

However, the reading in my left eye was at 24 and this is too high. I have never had a problem with the left eye so this high reading is not good. For the problem that I have, it is common for a case like mine to have the other eye to be affected in the same way at some time. The doctor has told me that he can see the pseudo exfoliation syndrome in my left eye and this is the start of the problem. Hopefully it will not get any worse than this. The doctor said that a pressure reading such as this in someone without any history of the problem would not be asked to medicate right away, but he would just observe for a little more time. In my case, he was keen to start me on glaucoma drops immediately.

Given that two weeks ago the pressure in my left eye was only 12, I have decided not to start any medication now, and will wait another month and see what is the progress. If the pressure is still high, there may be a need to start on the program once again in the other eye, but hopefully this can be avoided for a lot longer. I will have to go to the hospital again in about one month. The decision not to start with glaucoma treatments in my left eye is entirely mine and against the advice of Dr. Chaiwat. But he is a doctor and he is not allowed to take any risks, no matter how minor they may appear. I made this decision based on my own observations and experience and know that the risk is mine alone. My reasons for delaying any start of the process for the other eye are twofold. First, I don’t see that a one off reading that is slightly high is so serious or sight threatening that I needed to immediately start a process that cannot be stopped, and second that I just wanted a holiday from eye medications after so many years of living with this problem. If there is any fall out from this decision, then I am the one who will have to live with the results, and I am fully aware of this.

Update 03 September
Well, here it is, another month gone by and another check up at the hospital. This one was almost a replay of the last one. The right eye, the originally affected eye, has a pressure of only 12 and the examination of that shows that trabeculectomy working really well and so we can be confident of a good result for the long term. It really does now depend now on my body and the acceptance of the wound, and the rate that nature tries to heal the abnormality that has been created to relieve the pressure. So, for now, there seems to be no problem and is the good news.

However for the left eye, the pressure reading today is 21 . That is a little better than the last time, and shows no further progression of the problem there. Actually, in the past I have occasionally had slightly higher readings on this eye, but they were not given much significance because of the much larger problem in the right eye demanding our attention. The doctor did advise me again today to start medication immediately on the left eye with some Xalatan or Travatan type of drops – one drop per day. Again, I decided not to start the medication because I know that once I start with that, it will not be possible to ever stop, regardless of how good it may get. Once started it would then be impossible to know if the pressure was okay by itself or if it was being controlled by the medication. I would prefer to allow it to go for a bit longer and just observe. I don’t feel that this is too dangerous as long as I keep it monitored and I do know what it is like to have the pressure get dangerously high if that should suddenly happen as it did at the very beginning with the right eye. Dr. Chaiwat is not terribly happy with my decision but given that it is my risk alone, I have decided to give it a run for at least another month. At that time I can make another decision based on the results of further tests. Of course, should it show any signs of progressing passed what I know to be reasonably acceptable, I will immediately take up the medication routine again. The doctor says that the Pseudo eXfoliation Syndrome is very evident in the left eye now, so he is certain that there will be problems there in the future. For me, I would rather wait until I see some clear sign that there is the problem progressing first. I know that there are many people with this problem who never actually get glaucoma symptoms and the research so far does not explain this. It also does not explain other issues as I have mentioned previously in this text, so that leaves us with plenty of grey areas to have to deal with.

Today I did mention to my doctor that I would like to have the pressure read every day if that were possible, but unfortunately that is not practical. It is certainly not something as simple as it is to read a person’s blood pressure. He did mention that there was going to be a large group of patients staying in the hospital overnight and having their pressures read every hour for 24 hours. He invited me to join this group if I wanted to, but I know for sure that this would be quite an expensive exercise and I would have to cop the bill entirely by myself. I also believe that there is little for me to benefit from personally by participating in this as it surely is purely a research exercise. Should he invite me to participate without cost, then that would be a different matter. I will wait and see, but I really don’t think that there is going to be any such offer made, so I will politely decline the invitation.

More after 01 October, the date of the next planned visit and test, but actually, I am considering somewhere cheaper to just get the pressure checking done. At over 650 baht for 5 minutes in front of the doctor and only to get a quick pressure check, it is a bit expensive (yeah, yeah, it is cheaper than in the west, but I am paying for all this myself so do need to keep the budget in consideration – I am not on a huge salary here). Also, I know full well what will be the course of treatment should the tests indicate it warranted, so there seems little value in using the high price alternative at the moment. I will investigate finding a cheaper alternative to get the pressure reading done and report that here should I find one near my apartment or office. We are now out of the requirement for quality treatment, and into the area of simple monitoring. (If you only need your tire pressures checked, you don’t pay a Rolls Royce technician big money to do it.) More on this at the next report next month.

Update 05 October
I have just returned from my check up at the eye hospital. Actually, I should have gone earlier in the week, but I left that appointment go because I was a bit busy with the office and other things, and it just was not convenient for me to get there.

Dr. Chaiwat was not in the hospital today, so I went to see Dr. Yupin. She is the doctor that I was seeing there in the beginning before I was recommended to go to Dr Chaiwat but I am happy enough with her professionalism. We chatted quite a bit about the syndrome and she did just confirm what I have always known. She did say that for someone to have this problem unilaterally for a very long time is quite rare so again I am in a minority. The exfoliation material is now evident in my left eye, but not to any great extent. I am not particularly concerned at this stage because, although I know that this could well go on to be as serious as the problems that I have experienced with my right eye, I don’t think that it is going to happen any time soon.

Today the pressure was 12 in the right eye, so that is great, and that pressure has not been more than this since the operation. It is a very good sign, because it shows that there is no healing up of the vent placed to relieve the pressure. Actually, the problem is just as bad as ever, and paradoxically it is because the problem is severe it is helping to keep the vent working. There are many times, and I think that I can still vaguely feel it when it is happening, that there is a big release of XFM and trabecular meshwork gets quite blocked up. But that only serves to push the vent open and there is no big pressure or glaucoma like problem happening. Because the vent is regularly being pushed open to probably quite a large extent, it is preventing the healing process that would normally take place if this were not happening.

The pressure in my left eye was 16 and that is also a really good result. It shows that while there is XFM there, and it does cause some small problem, it is still not going into the range that it is dangerous. Until the syndrome evolves out further it will be okay as it is. Unfortunately there is no way to know what could be the time frame on this. This kind of thing is probably going on for millions of people and they never know, so I guess that I am fortunate in that I do know, and can monitor it so that I will not end up with serious damage at some stage further down the track.

The doctor recommended that we do retina scans and field vision tests to monitor what is going on and if there is any progressive retina damage. Now, I may be a bit cynical here, but I am starting to think that this could be the doctor selling services that, while certainly well intentioned and even well advised to be super conservative in the approach and make absolutely sure there is nothing serious going on, it seems to me to be a bit of oversell. Given that these services, while considerably cheaper here in Thailand, it is still quite a drain on the income when it has to be done so regularly. I have opted to still continue to wait and see, and will return to the hospital next month to get it checked again and I think this is the right approach. In any event, it is my risk entirely and I would hold no one but myself responsible should this turn out to be the wrong way to go. I will keep this journal going, so there will be another update next month.

Update 14 November
Today I went for another check up and I had another surprise turn up in the story. The pressure in my right eye today is 14. This is only slightly higher than all previous tests since the operation, but still a great result and shows that there is nothing to be particularly concerned about. The operation can now be called a great success and of course, I am very happy with that.

The pressure in my left eye is 17. Now that is also a great result, as it shows virtually no change since last time. It is very clear that I was quite right to have refused to start with glaucoma medication in that eye as advised a few months ago. It is now over three months since I had to put drops in my eyes and that alone is a great blessing. But the big surprise for me was that Dr Yupin told me today that there is no sign at all of Exfoliation Syndrome in my left eye. I have been told for months now that the problem is showing up and one time Dr Chaiwat told me that it is “quite significant” so is a good reason for me to have treatment for that eye. So, this is the question: Was it ever there? I would think that the doctors have no reason to lie to me about that. So, I have to believe that it was there on those occasions and now it has gone away. Given that no one knows why this happens to some people and even don’t know why it can occur to one eye and not the other for some patients, there is little point in me wasting further time going into all of this. Enough said that for me it now seems to be clear and that would indicate that I am in the clear for the immediate future, and the longer term is also looking quite good.

Update 26 March 2008

I went again to the doctor to have the pressure checked again and this time it is the longest time between visits since this whole thing began again for me almost a year ago. I have worried constantly that maybe the trabeculectomy was starting to close up and it would stop working. Normal paranoia I guess, well that is what I put it down to now. The check went well, pressures of 16 in the right and 17 in the left. This of course is a great result. It was again Dr Yupin that I saw, and she recommended that we should do the retina scans again to determine if there has actually been any degeneration.

So, like a good and cooperative patient, I consented and off I went to get this done. No medical procedure is fun, and this is no exception. Drops to dilate the pupils completely so that the full inner eye is exposed when the camera device is focussed into the eye. This takes over half an hour of having these drops applied to both eyes every 5 minutes. They last quite a while, so everything becomes very bright; kind of like stepping into the daylight after being in a very dark room. Then comes the sitting up to the machine, chin on the bar, machine focussed very close to the front of the eye, and each in turn scanned several times.

End result then is a colour print out which is in the form of a graph and this indicates the retina thickness. There are black lines, green lines and red lines – black being the graph line of my retina thickness across the total area, the green lines being normal, and the red lines being the critically area into which we don’t want to be found. If the thickness of the retina has become so thin that my graph were to violate the red lines, then there would be significant loss of sight, and progression of the problem after that is about as bad as it can get.

My right eye, being the one that has been abused by the IOP problem for so long was clearly getting thin, but not into the red by some way yet. My left eye shows up about normal, as expected given that I have never had the pressure problem in that eye. (They tell me that I absolutely will get the problem in the “fellow” eye, but so far, touch wood, no sign of that happening at all).

So, there it is. Now I don’t have to go back until nearly Christmas 2008 unless there is any kind of “event”. Fortunately, I do know what to beware of and even the vaguest symptom will see me going back for the check again. The end of the story so far is definitely good. Actually, it is fantastic! I am completely releived of the problem and essentially, apart from that certain vigilance, don’t have to worry about it at all. Certainly all praise and tributes must be given to the doctors and researchers for what they are doing in so many areas to allow us ordinary people the luxury of having normal lives.