The Eyes Have It - final part

Dear Reader, this is the final part of my 'Eyes 'series wherein I have tried to give my personal experiences and tips for those having to undergo investigations and treatment of diabetic retinopathy, maculopathy, etc.

Those who have read the previous posts in the series may remember that my eye problems were induced by medications, bringing my bg levels down too quickly and by my being advised to eat more starchy carbs in order to tolerate the medication better!

After attending the hospital's eye clinic every month for a year with nothing but background retinopathy to be seen ,(my doctor had thought he could see something on the macula - before the days of retinal screening) I was told at an appointment that I would be discharged if I returned to have a final scan and to see a consultant 3 days later. I duly returned but the consultant only glanced at the scan before he ran out of the room calling for a nurse. and demanding immediate laser treatment for me. During this 3 day period I had stopped taking one drug - just as it was about to kick in -and had started on another. I always have an immediate and extreme reaction to medication and my blood sugar had dropped immediately, by several points, obviously resulting in the massive bleed.. The consultant - a visitor- did not get his way - Christmas and New year intervened. This was a very good thing as I discovered later.

When there is a great deal of fluid present laser will not work and I have met several patients who have waited six months and more before any treatment was attempted because of major leakages of fluid. Sometimes patients even have to contend with temporary blindness. I think I had to wait about eight weeks for my laser treatment - and these were filled with trepidation. I had heard several patients telling doctors that they did not want more laser treatment as they had found it so painful.

In these circumstances I did what many others do and researched it on the internet. In every other situation I have found this to be useful and would encourage everyone to do so in order to understand treatment.

Eye clinics are busy places and often Drs do not know the answers at a particular stage. Research helps to explain why. In the case of laser - I mean before the first laser treatment - I do not think that this is advisable for several reasons. In the first place the language used to describe laser - numbers of 'burns' etc- is very emotive and often distressing to patients. I remember very well how so many members on DCUK hesitated about treatment purely for this reason. When people talk of having had thousands of burns to each eye - what are the uninitiated to think? Then there are concerns about the effect on peripheral vision in some cases and the possibility of driving licences being withdrawn etc. While these things sometimes can and do happen they are unlikely to happen at an early stage and there is no point in worrying unnecessarily. The important thing is to prevent the disease progressing.

Laser treatment to the eye is not comparable to anything else. The eye and the brain work together and intense laser can be very disorientating. Add to that the fact that every case and every treatment is different and individual sensitivity varies so much and you will see why it is probably better to await the first treatment before undertaking further research.

I have heard and read, of people having had one brief experience of laser treatment, telling others that they didn't understand why some had problems with laser . Nothing to it! I was told that it was not painful per se and this has proved quite true in my case. On the other hand I have had to go to bed -totally- but temporarily-blinded - for 24 hours after intensive laser treatment. This blindness did not come in the form of darkness but of blocks of different coloured light totally filling the field of vision which only faded gradually.

For patients with certain conditions, for example, epilepsy, migraine, asperger's syndrome, laser can be especially traumatic. Patients should ensure that any concerns are made known to the medical staff before the treatment day, as sedation can be given and the person delivering the treatment be made aware of potential problems. Here again, the laser machines themselves and the operators, vary. Should a patient experience discomfort they should always mention it to the Dr. at the time. The machine setting might need to be changed to suit the individual, or a pause in the proceedings might be indicated. Patients should never be afraid to ask for the procedure to be halted if they are uncomfortable. Laser treatment requires concentration. and co-operation from patient and operator, but it is the patient who risks damage and for whom the treatment is vitally important.

Some doctors may become a little testy with patients, as in other procedures. I try never to take this personally, as it often takes the form of chiding the patient to keep still etc but may reflect anxiety on the part of the Dr. In this case a break may be in the interests of all.

When the laser gets closer to the macula it is very important that the patient is able to concentrate and keep as still as possible for a few, vital, seconds. That is why it is so important that the whole procedure is as relaxed as possible before this stage is reached.

But what actually happens at a session of laser surgery?

The patient will already have had dilating and iodine drops instilled. An anaesthetic drop will also be given before a contact lens is placed on the eye or eyes. The patient will sit facing the operator at the table with the laser machine - very much in the same way as for eye examinations - and place chin on chin rest and head against head rest The patient will see large blocks of light filling the screen, again as in eye examinations. He/she will be asked to confirm that they can see a red dot and to follow it with the eye, then told not to follow it but to look straight ahead. This is quite difficult sometimes as nothing of the room beyond or the operator can be seen and the red dot is the only point on which the eye can focus.

When the treatment begins little bleeps will be heard and small black or grey dots or holes will appear in the vision. This is not painful - the discomfort - if any, generally comes from the lights. When a crucial point is reached the patient should be warned not to move for a short time. When the procedure is finished the lens will be removed and the patient told to sit back. After-effects will depend on the individual and the amount and intensity of treatment given. This is another reason to be extremely careful about reading well intended literature - even sometimes that issued by hospitals.

My first session of laser was very intense. I was not given any particular advice or told what to expect - merely to call if I had any concerns. I had already downloaded a leaflet from a hospital in another region on this subject. That night and for each night until my next appointment two months later I experienced a 'firework display' in both eyes when I went to bed. This lasted for several minutes and was quite unlike anything I had ever experienced before. I was not worried - the leaflet from the other hospital informed me that this was perfectly normal and to be expected.

The point I missed ,however, was that the leaflet did not tell me for how long this phenomenon should continue. At my next appointment I mentioned the matter and was told that side effects of that kind should only last for a few days, and that they could, in fact, have been a sign of a detached or detaching retina.

It was some years before I discovered what the firework displays actually were a sign of, and in the meantime I was given another session of laser - but not so intense, which I also understood better later.

As neither of the laser treatments made the slightest difference to my retinopathy, maculopathy, or macular oedema I was told I would be referred to a consultant for consideration of eye injections as, apart from laser, this is the only treatment available at present.

When I finally saw the consultant, he explained that the laser had not worked because there had been too much fluid present. He said the injections would dry up the fluid by sealing blood vessels and that he thought he would then be able to perform effective laser treatment. He told me of the worst case scenario risks -blindness and retinal detachment. He then asked if I were willing to go ahead with the injections.

He was new to the hospital and before his arrival patients had needed to go elsewhere for this treatment. As there seemed to be no alternative, I agreed. It was explained that I would be admitted as a day case and the pre-op was carried out immediately.

The procedure - injection of the steroid triamcolone into the vitreous part of the eye took place under full operating theatre conditions. The steroid is intended to reduce inflammation and swelling in macular oedema and other retinal conditions. Other side effects include glaucoma and progression of cataracts - I suffered all these side effects eventually - but for a long period it was effective -with laser-ing preventing the progression of the disease.

On the first occasion there were students with laptops literally lining the walls of the operating theatre. I had had a long wait because the previous operation had been difficult. Every passing doctor or nurse had renewed my anaesthetic drops - which I found very reassuring.! Of course, the thought of an eye injection is frightening and disturbing. It is almost against nature to allow a sharp pointed instrument near the eye, I wish someone had told me that I would not be aware of a sharp pain but only a deep pressure. Not pleasant but certainly not agonising. Before the procedure the eye is cleansed thoroughly and either painted with iodine, or an iodine eye wash is used. I must say that this eyewash is the most painful part of the procedure, but again this will vary according to individual sensitivity.

A hood made of some substance reminiscent of bubble wrap with an adhesive inner surface is placed over the patient's head and pressed down to adhere closely to the skin. to seal off the treatment area. The surgeon then uses a scalpel to cut holes for the eye to be treated, or nowadays, sometimes pushes through, perforated eye sections. The aim is to expose as little of the facial area as possible in order to avoid infection. The eyelashes are clipped upwards. Some surgeons mark the place where the needle is to enter the vitreous part of the eye. They also have a choice of needle sizes, but that does not affect the patient experience. If both eyes are to be injected the hood is removed and the procedure repeated on the other side. This hood removal sometimes requires two people to remove it and is probably the most effective exfoliation any of us will ever experience!

My first steroid injection was almost a psychedelic experience. I saw flashing lights, amazing colours and when the surgeon asked me if I could see a light and then tell him how many fingers he was holding up, I was amazed to hear a round of applause from the students watching the procedure around the table and via computers around the walls. Later treatments were far less spectacular, so I assume much was due to the state of my retina at that time. I later discovered that the original laser treatment, before the injection, had been so intense - albeit ineffective, that it had caused extensive scarring to the retina. It was fortunate that I had mentioned my side effects to the Dr or I would have had a second round of over-intensive laser, while still believing [as per the hospital leaflet] that this was normal.

Over six years later I was shown the area of scarring on a photo and have to say that this was the most shocking thing I have seen in the course of my treatment. The biometrist had told me that there was a large area of scarring but until I saw the blackened area for myself I did not understand the extent of it. This makes other procedures more difficult and gives me an increased risk of irreparable retinal detachment. Being shown that photo was when I first understood the term 'burn' in connection with laser. A reminder that although there is no outward sign - this is what it is doing, in fact, although the patient is unaware of it. Once these things have happened there is no reversing them so I would advise people to speak up even though most of us are reluctant to make a fuss.

The HCP’s can't know if the patient doesn't tell them. I completely understand now, why not every hospital will produce its own guide to laser treatment. There is always the problem of false reassurance but in this particular area it is almost impossible to avoid pitfalls and much better to deal with these matters on an ad hoc basis.

The steroid injections can cause side effects for a few weeks after treatment. Floaters may have been mentioned but I was not prepared for the outsize spider webs in my eye for four weeks on one occasion. The chemical, or its carrier is black, it became very irritating when strands began to break off from the web and behaved as pendulums swinging back and forth across the eye. I once drew what I could see each week until the after-effects faded for the surgeon, he had had no idea previously of the extent of the problem and changed his injecting technique as a result. I find that it is always worthwhile mentioning these matters.

The other injection used in the treatment of retinal eye disease is Avastin also known as bevacizumab. This is an anti-cancer drug used off-licence to prevent the growth of new blood vessels, which in retinopathy will often be fragile and weak as well as in the wrong place. In the hospital I attend, Avastin injections are given in a mini-operating theatre, as these are often used in age-related wet macular degeneration too. The procedure is the same for both injections but with Avastin the fluid is clear and there should be no floaters after the injection. With both types of injection it is necessary to use antibiotic eye drops 3 or 4 times daily for a week afterwards.

Avastin is what I always think of as Poor Man's Lucentis. Lucentis was developed for use in eyes, Avastin was not. I have heard it described as the same chemical with a few cosmetic changes - it is even made by the same company. There is however, an enormous difference in price, so using Avantis allows for treatment of many more patients.

How effective are these treatments?
From a personal perspective steroid injections always worked for me and I hoped to have a steroid implant so that the number of injections and hospital visits could be reduced. Unfortunately I developed glaucoma and as this is a major risk with implants this option seems to have been ruled out. I have had several Avastin injections over the years but none have worked for me. At present I am awaiting the results of an intensive course of 3 injections to each eye given at monthly intervals. This does not appear to have been successful to date but has worked for others. Avastin has been very successful in treating wet macular oedema in some patients and diabetic eye disease in some patients too.

Steroids are also effective for a limited time. All of these procedures carry risks - and very real risks .but some patients need only the minimum of treatment to successfully treat the condition. I think the jury is still out overall but current treatments work for many even if the condition recurs and thus buys time. It should never be forgotten that it is tied to diabetes but there is disagreement about exactly how this works.

Too strict control of bgs has been found in some studies to be counter productive and certainly I have found that low bgs affect it as much as high.

HCP’s in my hospital are discovering ,all the time that Type 1 ophthalmology patients fare better than Type 2, and some think that is the case with most diabetic complications. Although it is true that some may reverse retinopathy with treatment and lifestyle changes often the damage has been done and it is much more difficult to diagnose than most people believe. In my case there were only the smallest signs of background retinopathy and, at times, the treatment appeared to be working. Unfortunately angiograms have shown that although they no longer leak fluid the blood vessels are spongy. From wear and tear over the years and fluid gradually accumulates causing maculopathy .As the only available treatments are no longer effective then the outlook appears bleak at present, but I feel that I have been fortunate, in many ways, in my consultant and hospital and will continue hoping for as long as possible.

Whereas most diabetic complications may be reversed or minimised by the appropriate diet and bg control this is not necessarily the case with diabetic eye disease. That is why I explained some time ago that it can be equally important to keep levels stable. A sudden drop or spike can cause a bleed. Sometimes the effects can be temporary and reversible - but not always. I stress that I mean in those already diagnosed with retinopathy, I try to keep my levels low and stable to avoid further complications.

It is now recognised that bg control alone is not sufficient to keep retinopathy at bay and it is suggested that as well as blood pressure levels - which are always important, cholesterol levels also have a part to play. As ever this is not properly understood, but is another reason why patients will have lipid levels looked at, - and, no doubt, statins prescribed.

I feel strongly that insufficient evidence is available at present to evaluate treatments, but that there is hope on the horizon, in that the Americans are now investigating the efficacy of treatments, after shunning injections for a long time because insurers would not consider them. Many still refuse to do so but will help with some aspects and patients can choose to pay for injections. This means that they are more widely available and that the data is also becoming available, and many trials are in progress. Some advances has already been made in assessing the best way of using Avastin and there are alternatives, including drugs, in the pipeline.

It is of course, a personal choice whether to accept treatment by laser and /or injection I know of many who hesitate for months. I feel that I must say, from my own experience, that they are deluding themselves. Many, including me, will at some stage, think, when one eye is being treated and the treatment is not particularly successful that they will settle for sight in the other eye. I hear this all the time and once believed it possible myself. Believe me you do not have this choice. Overnight things may deteriorate in the other as many of us have discovered. Those who hesitate because of fear of loss of peripheral vision cannot have considered how their driving licence will be affected should they lose their vision completely.

The fact is, that when you are told that treatment is required then it is important, although often unpalatable, to accept and come to terms with it. As with all other treatment it is the patient's own responsibility to stay abreast of the treatment, to ask appropriate questions, to report side effects, to indicate when treatment is uncomfortable or painful. Be proactive - but also be patient. Laser and injections do not work instantly. HCP's are not issued with a crystal ball. If you do not always receive a satisfactory answer it may be that it is not possible at a particular stage.. Many of us are very busy these days. Please be a patient, patient. If a particular Dr is busy and in great demand there may be very good reasons for that. Worth waiting for, perhaps, I have often observed staff being bullied into pushing a patient through the system because that person's priority is obviously just to be seen by anyone and to leave as soon as. possible Obviously, this will only lead to further appointments having to be made and more time being wasted. It is the same with preliminary checks at each visit. They are essential and no progress will be possible without them. In other words - be patient, co operate but always remember it is your vision at stake and you have a perfect right to choose and to question. The best HCP's know this. Above all never expect to pay a short visit to an eye clinic.

I recently found this video on You tube which avoids some of the pitfalls of information sheets, but which may be of interest, to anyone who is concerned about treatments for diabetic eye disease.

I have not attempted technical descriptions of eye disease or treatment as they are readily available for anyone to Google but merely  speak from my own experience. I have undergone other procedures as side effects of my treatment and may undergo more. In this series I have concentrated on the common treatments and diagnostic tests which most patients will undergo.

You Tube - Understanding Proliferative Diabetic Retinopathy



I hope none of this is ever necessary for any of you but please remember many people are successfully treated.

I am a "difficult and unusual case" That is official.

Best wishes Kath 


Post edit

Thank you Kath for a fantastic series of highly educational articles. To find all of Kath's eye posts in one place, please go to our wordpress blog here.

Eddie