(A-Z) AMD Patient Frequently Asked Questions

  • [A] AMD - Types and Causes of Age Related Macular Degeneration +

    There are two types of age related macular degeneration, wet and dry. We are going to talk about the wet form which is less prevalent than the dry form but sadly the more aggressive of the two. For every 10 people with dry AMD 1 will have the wet form. An estimated 10-15% of affected individuals the dry form progresses to the wet form.

    Nobody knows the exact cause of wet ARMD but there appears to be a hereditary component. Researchers have identified many genes that are associated with a higher risk of developing the condition. An estimated 15-20% of people have at least 1 first degree relative (sibling or parent) with the condition.

    Other risk factors are age, it is uncommon in those under the age of 50. If you are of Caucasian origin it is also more common. Those who have been exposed to cigarette smoke, have cardiovascular disease and those who are overweight also have a higher risk of developing wet ARMD.
  • [C] COVID19 - What changes are happening to my planned eye care due to COVID 19 and what can I do to prepare best for these changes? +

    Eye doctors are using guidelines and clinical decision making to weigh up the risk of coming to hospital and potentially catching or transmitting coronavirus versus not coming in and the risk of irreversible sight loss. These decisions are carefully made based on Royal College of Ophthalmologists and General Medical Council guidance and government COVID regulations. Your safety and your sight are central to this decision-making process.

    Based on a careful review of patients’ clinical records, you may find that your doctor arranges a telephone consultation with you to ask you how you are getting on instead of a face to face visit to eye clinic. If you have a smart phone, preparing for this by downloading a vision application may be very helpful as it will enable you to give your eye doctor an accurate measure of your eye sight which he or she can compare to past recordings. The measure of eyesight in an accurate manner than can be reproduced reliably is the single most effective measure that determines whether your wet AMD is progressing or staying stable while in lockdown. An example of an application is “peek”, there are many others. Perhaps a friend or relative can help you download this and practice using it.

    If that sounds too technical, you can also monitor your vision at home using your environment. Do you have kitchen or bathroom tiles? Either on the floor or on the wall? If yes, look at them once a week with one eye covered. Make a note of any increase in the straight lines looking distorted. If this distortion increases this is a reason to report to the eye clinic. They will then contact you for more details or bring your appointment forward.

    If you do require a face to face visit, on entering the eye clinic you will notice some visible changes. All the eye clinic staff will be wearing face masks. This can be difficult for patients who are hard of hearing and rely on lip reading to understand. The chairs in the waiting area will be spaced out to observe the >1m social distancing policy. You will be asked to attend alone if possible, family members and carers are asked to wait in their cars. The eye clinic staff will endeavour to see you with minimal waiting when possible therefore the consultations may be shorter. Support services such as interpreters and hospital transport are still open but may be functioning as a reduced service.

    Generally speaking, wet AMD patients are deemed high risk if their treatment is delayed so it is likely that you will be asked to come in for a face to face visit especially if you require an injection to your eye.

    If you are worried about the risk of COVID 19, write down your concern and don’t hesitate to discuss this with your eye doctor who will be happy to talk you through the risks and the benefits.
  • [D] DRIVING - Do I have to give up driving because I have been diagnosed with macular degeneration? +

    As an eye doctor, I can give you an indication of whether or not it is safe for you to continue driving based on if you are likely to meet the DVLA visual standards. Let me explain what these standards are. The DVLA will look at how good your peripheral field of vision is in both eyes (how much you can see from the corner of your eyes while looking straight ahead). They also want to ensure there is no serious loss of what you can see in the centre of your vision. Your horizontal field of vision needs to be 120 degrees with at least 50 degrees on each side of the centre and no defect in the central 20 degrees.

    In an eye clinic setting, although I may have the information from your visual field results and vision test, I don’t actually have the legal authority to say, “yes you can drive” or “no, you cannot drive”. Only the DVLA have the authority to do that.

    It is a very important issue though and if you have macular degeneration of any type, wet or dry, affecting both eyes, you must inform the DVLA. You can do this online. If you prefer to use a form, you can request a paper form (called a V1), and send it off to the DVLA via post. If you have macular degeneration affecting both eyes and fail to inform the DVLA you could get a fine of up to £1000.

    So you have taken your eye doctors advice and informed the DVLA, what will happen next? You may still be able to keep your driving license. It depends on the results of the tests. Firstly, they will determine what your vision is while looking straight ahead and your central visual field. The next test is likely to be a field of vision test with both eyes open. This looks at what you can see from the corner of your eyes while looking straight ahead. They may ask you to stop driving based on the result of these tests. On the DVLA website it states:-

    You don’t need to tell the DVLA if your macular degeneration affects only one eye and you meet the visual standards for driving. Your eye doctor will advise you if your non affected eye is falling below the required standard. As macular degeneration can progress, this needs to be reviewed on a regular basis.

    For more information go to www.dvla.gov.uk
  • [E] ERM - What is the Epi-Retinal Membrane? +

    Epi-retinal membrane formation, commonly referred to by eye doctors as ERM is associated with ARMD. Often the patient may not be aware that they have an ERM as the symptoms can be very subtle but the eye doctor will be able to show you on the OCT scan especially if there is associated traction from the base of the jelly that fills the space within the eye ball (the vitreous, referred to as vitreo-macular traction or VMT)

    Removing the epi-retinal membrane which may have formed over the macular area (imagine a thin membrane like a piece of clingfilm growing across the film at the centre of the retina) that can co-exist with the wet AMD can actually play a crucial role in hindering response to anti-VEGF injections in some patients with wet AMD.

    Some research has suggested that the co-existence of epi retinal membrane and AMD are related to a higher incidence of subretinal fluid and more profound changes within the macula, increasing the need for frequent injections.
  • [F] FLYING - How soon after my intravitreal injection is it safe for me to fly? +

    Intravitreal injections are usually uneventful and it would be safe to fly immediately after, however in the rare event of a complication occurring, it would be wise to have easy access to your local eye clinic so I would advise to arrange any flights at least 2 days after.

    There is a one in 2000-3000 chance of a serious sight threatening infection occurring within the eye after an intravitreal injection which would manifest itself with extreme pain and redness of the eye, and decreased vision. This is called endophthalmitis and requires urgent intervention with intravitreal antibiotics. If it is going to happen it usually presents within a week of the injection. As long as you have access to a reputable eye clinic at your destination you are Ok to fly.

    Other issues that may arise are a stinging sensation on the ocular surface due to sensitivity to povidone iodine which is used to disinfect the ocular surface at the start of the procedure. Although true allergy to this preparation is rare, sensitivity is quite common and the health care professional doing the injection will ensure this is washed out carefully after the procedure. Significant discomfort very soon after the injection can also be due to a scratch on the clear window of the eye (cornea). If any of these symptoms occur, it is advisable to return to the eye clinic promptly for the appropriate treatment. This is why we advise flying after 2 days.
  • [G] Genetic testing - Is it helpful for AMD? +

    Genetic testing for AMD is not currently offered as a routine NHS test. This is because, at present, our scientific knowledge is not good enough for us to fully understand the results of genetic testing. Some private companies may offer direct to consumer testing (a test that you can order yourself online, and the results are communicated to you directly, without needing to see your GP or ophthalmologist).

    As a research tool however genetic testing can be very helpful. Recently we've come to understand that between 1-2% of Caucasians may carry a genetic change in a gene that controls inflammation inside the eye. This change may then predispose that individual to developing AMD. A clinical trial is underway to determine if providing a healthy copy of this gene (CFI) to such patients may help treat their eye condition.
  • [H] HEREDITARY - Is AMD Hereditary? +

    Nobody knows the exact cause of AMD, but there appears to be a hereditary component, in addition to those that relate to patients' lifestyle. Apart from identical twins, all of us differ in our genetic make-up; there isn't just one correct copy of the human genome. Most genetic differences are small, or subtle, and account for why we look and behave differently - why we're all individual. Occasionally, some people have genetic variants which are larger, or more significant. These changes can be associated with inherited forms of disease, such as some types of cancer, or even eye disease.

    The most severe genetic variants result in childhood-onset conditions, whilst milder changes only cause a problem later in life. AMD, by definition, occurs after middle age, and most commonly when patients are much older than 50 years old, so the genetic variants that contribute to it developing are milder, and so harder to find. Despite this, researchers have identified some genetic variants that are associated with a higher risk of developing AMD, however the effect of these variants cannot always be accurately predicted.

    People carrying these genetic changes will be at increased risk of developing AMD, but some other environmental factors also need to contribute (poor diet, smoking, lots of very bright sunlight etc). Usually it is the combination of both moderate genetic variants, and some lifestyle factors that contribute to AMD. As to whether you develop dry or wet AMD may be even more complicated, and ultimately depend upon how the individual cells in your eye respond to aging.
  • [I] Intra-vitreal injections - What are the risks? +

    The therapy we give for wet Age related macular degeneration is a medication delivered directly to the vitreous jelly by injection to the eye. That is why this is called an intra-vitreal injection. It is delivered after the eye is made numb with eye drops.

    As with any surgical procedure there are benefits and there are risks. The most significant risk of intravitreal injections is introducing infection to the eye which can result in significant and profound loss of vision in that eye. Thank fully the risk is very low at 1:3000 cases.
  • [J] Journey - What will my Journey through macula clinic be like? +

    If you require a face to face visit, on entering the eye clinic you will notice some visible changes. All the eye clinic staff will be wearing face masks. This can be difficult for patients who are hard of hearing and rely on lip reading to understand. The chairs in the waiting area will be spaced out to observe the >1m social distancing policy. You will be asked to attend alone if possible, family members and carers are asked to wait in their cars. The eye clinic staff will endeavour to see you with minimal waiting when possible therefore the consultations may be shorter. Support services such as interpreters and hospital transport are still open but may be functioning as a reduced service.

    A trained health care assistant will check the vision first, one eye at a time. You will sit a specified distance from the letter chart and read the letters you can see. If you are unable to see letters clearly you will be prompted and encouraged. The final best score is then noted and documented in your clinical case file. Health care personnel will compare your vision to previous visits to conclude whether it is better, worse or the same. A change of more than 5 is noted to be an improvement and a decrease of more than 5 is noted to be a deterioration. This information will be used together with other tests.
  • [L] LORD - Late Onset retinal degeneration (LORD) +

    Similarly, for patients with a very strong family history of macular degeneration, typically those with symptoms in middle age, genetic testing may be helpful as there are a handful of conditions where specific genetic variants convey a large risk for developing premature (not age-related) macular degeneration. These are conditions such as Sorsby Fundus Dystrophy, Dominant Drusen, Late-onset Retinal Degeneration (L-ORD), Late-onset Stargardt Disease.
  • [M] magic questions - What are the Magic Questions I can ask so I am well informed about my condition and my treatment options? +

    I worry that the eye clinic staff are busy and I don’t want to take up a lot of their time. Are there any “magic questions” I can ask so I am well informed about my condition and my treatment options?

    This is a common concern shared by many patients and their carers. You are not alone in thinking along these lines! It is worth remembering that the majority of clinical staff would be delighted to answer your questions as it gives them the satisfaction of knowing that you are leaving with a clearer understanding and this makes our work more rewarding.

    I would say for those of you who know your diagnosis, spend 10 minutes reading about your condition and make a note of 2-3 main questions you wish to ask when you see your doctor or allied health care professional. If you don’t know your diagnosis, you can use the GROW model to help you think about which questions to ask so you feel heard and take the right information back home with you>

    "G" is for Goal

    Before you enter the consulting room, just ask yourself what is my GOAL? By the end of this consultation I want to be clear on …..and complete this sentence.

    So, “What do I really want to know?”

    You may be thinking, What is wrong with my eyes? How it can be treated? What are the risks of treatment? What is the risk of doing nothing? Will it get better? What is the worse possible outcome? What is the best possible outcome?

    The biggest question in my experience or the biggest fear my patients have is, “will I go blind?”

    I find patients rarely ask me this but when I am discussing age related macular degeneration for example, I will say, “ now you may be worried that this condition will make you go completely blind… ” at this point, I notice that the patient often looks relieved, and I go on to say, “you will not go blind, at worst it will affect the clarity of the centre of your vision”.

    "R" is for Reality.

    What is happening now for you? Explain to how your condition impacts you and your activities of daily living. “I am affected because I cannot see my crossword clearly” or “I cannot read anymore or the centre of the TV screen is blurred or I see people but don’t recognise them”. By explaining how your condition affects you, your doctor will have a greater understanding and in some cases, can tailor your treatment appropriately or plan for additional supportive measures that may help you.

    "O" is for Options

    Doctor, what are my options for treatment? Allow your doctor to explain what the options are and what the pros and cons of each are. Make notes if you need to, and discuss this with your friends and family if possible.

    "W" is for Written information

    Ask for written information that you can take away with you and read with a friend or relative and think of more meaningful questions to ask when you visit the eye clinic next time. The more information you have and the more you understand your condition the more empowered you will feel and the better care you will be able to take to get the best possible outcomes from any treatment you may be having. Most of my colleagues would love to answer their patients questions. This will help us as doctors know we are explaining things to you in a way that you understand and retain the information. The more you ask the better. Remember knowledge is power! so GROW it!
  • [O] OCT SCAN - WHAT IS AN Optical Coherence Tomography Scan? +

    This is a test that uses light waves to take cross section images of your retina. You are invited to place your chin on a chin rest and a scan is taken, you are aware of a light but nothing else. It is not invasive or painful. The detail obtained gives precise information on each of the layers of the retina and its centre, the macula. It allows the eye doctor to map and measure the central macular thickness which is increased if there is leakage of fluid or decreased if there is wear and tear affecting the macula. The normal central macular thickness is 250 microns.

    In diabetic patients with leakage affecting the macula (a condition called diabetic maculopathy) if the central macular thickness is more than 400 microns, the national institute of clinical excellence supports the use of a specific treatment to the eyes because at this measurement NICE deems the benefit and cost effectiveness to outweigh the risks.

    In wet age related macular degeneration, the OCT scan can provide your eye doctor with a visual representation of the activity of the disease, there will be fluid present in the layers of the retina if the wet ARMD is active and there will not be any fluid if it has become stable. This information can help your eye doctor plan the appropriate follow up interval and injection interval that is specific to your eye.
  • [P] Peripheral Vision - What is needed for driving? +

    The DVLA will look at how good your peripheral field of vision is in both eyes (how much you can see from the corner of your eyes while looking straight ahead). They also want to ensure there is no serious loss of what you can see in the centre of your vision. Your horizontal field of vision needs to be 120 degrees with at least 50 degrees on each side of the centre and no defect in the central 20 degrees.
  • [Q] Questions - Write them down before you come +

    To get the most from your session, take the reading material in this book and any other patient information leaflets you have been given. Read through alone or with a friend or relative. Write down any questions that come up and bring these along to your next eye clinic visit. Your eye doctor will be happy to answer these for you.
  • [R] registered - Can I be registered Sight Impaired due to ARMD? +

    If your vision continues to get worse, and you start to find it difficult managing your activities of daily living, you may wish to ask your eye doctor about registering yourself as sight impaired or severely sight impaired. Being registered can help local authorities plan for visual impairment services in your local area and make it easier for you to seek help and support including help with finances and health related costs, parking and your TV license to name a few examples.

    So how do you get “registered” as sight impaired?

    The eye doctor will assess your visual function based on a visual acuity test and an automated visual field test. If your vision stops you from doing some of your activities of daily living you are likely to need sight impairment registration (partially sighted). If it stops you from doing many of your activities, you are likely to need severe sight impairment registration. If you have very little vision in one eye but good vision in the other eye, you are unlikely to require registration as the good eye compensates for the poorly seeing eye. This decision will be based on your test and a discussion between you and your eye doctor. An official certification form will then be completed by your eye doctor with results of your eye tests and your circumstances.

    Once this form is received by the local social services, you will be contacted, and you will be asked about going on the “register”. If you say yes, then you become registered and a “needs assessment” will be arranged. The aim of this is to enable you to remain independent by providing the appropriate support. For example, help with cooking, managing the stairs in your home etc. You can claim a wide range of concessions too if you are severely sight impaired. This includes half price TV licence, help with your council tax bill, tax allowances and free public transport to name a few.

    If you loose your registration certificate contact the eye clinic that issued it, they should hold a copy. Your GP and local authority may also be points of contact to obtain a copy.
  • [S] Surgery - Is it an option for AMD? +

    I wanted to know if there were any other treatment options if the injections don’t work for me? What about eye surgery? Some patients do not respond to eye injections and may benefit from surgical intervention. Although the anti-VEGF injections are the mainstay of treatment, eye surgery may be helpful especially when the complications of wet AMD cannot be managed by injections alone. Your eye doctor will discuss these options with you as they are not suitable for all eyes.

    One of these complications is epi-retinal membrane formation, commonly referred to by eye doctors as ERM. Often the patient may not be aware that they have an ERM as the symptoms can be very subtle but the eye doctor or allied health care professional will be able to show you on the OCT scan especially if there is associated traction from the base of the jelly that fills the space within the eye ball (the vitreous, referred to as vitreo-macular traction or VMT)

    Removing the epi-retinal membrane which may have formed over the macular area (imagine a thin membrane like a piece of clingfilm growing across the film at the centre of the retina) that can co-exist with the wet AMD can actually play a crucial role in hindering response to anti-VEGF injections in some patients with wet AMD. Some research has suggested that the co-existence of epi retinal membrane and AMD are related to a higher incidence of subretinal fluid and more profound changes within the macula, increasing the need for frequent injections.

    Another complication for which eye surgery may be beneficial is when there is a fresh thick bleed at the macula. If this occurs patients can experience a sudden and severe loss vision. There are some successful reports of dissolving the blood with a tissue plasminogen activator (tPA by injecting this within the area of the blood). An injection of special gas has also been used to physically “push” the blood away and maintain a “tamponade” to keep it from returning to the centre of the vison, however more complicated cases will require an eye operation where the eye jelly is removed (vitrectomy). Each eye has its own set of risks and benefits which will have an impact on which treatment plan is recommended to you by your eye clinic team.

    Although eye injections remain first line therapy in wet AMD, there are some complex cases in which eye surgery may be a useful adjunct to resolving the complications caused by the process of wet AMD and allowing patients to achieve better visual results.
  • [T] Tests - What tests can I have in the macula clinic? +

    For those patients that attend the eye clinic with disorders that predominately affect the macula and cause reduction in the quality of their central vision, when they attend their appointment a number of eye tests will be performed. Visual Acuity testing

    This is a reproducible and accurate assessment of what you can see. It is the basic test of visual function similar to having your pulse or blood pressure checked for your cardiovascular health check. A trained health care assistant will check one eye at a time. You will sit a specified distance from the letter chart and read the letters you can see. If you are unable to see letters clearly you will be prompted and encouraged. The final best score is then noted and documented in your clinical case file. Health care personnel will compare your vision to previous visits to conclude whether it is better, worse or the same. A change of more than 5 is noted to be an improvement and a decrease of more than 5 is noted to be a deterioration. This information will be used together with other tests.

    If you are unable to speak English an interpreter will be able to assist, or a tumbling C vision chart can be used, and you can match the letters on a card you hold in your hand.Optical Coherence Tomography Scan (OCT scan) “O”

    This is a test that uses light waves to take cross section images of your retina. You are invited to place your chin on a chin rest and a scan is taken, you are aware of a light but nothing else. It is not invasive or painful. The detail obtained gives precise information on each of the layers of the retina and its centre, the macula. It allows the eye doctor to map and measure the central macular thickness which is increased if there is leakage of fluid or decreased if there is wear and tear affecting the macula. The normal central macular thickness is 250 microns. In diabetic patients with leakage affecting the macula (a condition called diabetic maculopathy) if the central macular thickness is more than 400 microns, the national institute of clinical excellence supports the use of a specific treatment to the eyes because at this measurement NICE deems the benefit and cost effectiveness to outweigh the risks.

    In wet age related macular degeneration, the OCT scan can provide your eye doctor with a visual representation of the activity of the disease, there will be fluid present in the layers of the retina if the wet ARMD is active and there will not be any fluid if it has become stable. This information can help your eye doctor plan the appropriate follow up interval and injection interval that is specific to your eye.
  • [U] UPPER LIMIT - What is the Upper limit of injections to my eye? +

    There is no treatment for dry age related macular degeneration. The injections we give are a temporary treatment to maintain and, in many cases, improve vision in those with wet ARMD. Signing up for injections to the eye is a course of treatment that can go on for an undefined length of time, as long as they are needed until a “stable” phase occurs.

    There is no “upper limit” to how many injections you can have.
  • [W] WHY - Why does my eyesight deteriorate? +

    Many of my patient’s with dry age related macular degeneration tell me they hear lots of words being spoken by health care professionals but don’t often understand what they mean or how they all connect together to explain the most common question asked by patients, why does my eyesight deteriorate? In this article I want to explain these commonly spoken words while providing an answer.

    There are dedicated cells which use a lot of energy to allow us see central detail in the centre of the retina. This area is called the macula and the cells are called rods and cones. There is a high concentration of cones in the macula which we need to see colour.

    Oxygen is the “fuel” these cells need to work properly. With time we use less oxygen so the mechanisms that allow repair of these cells deteriorate with time and age. Cellular waste material known as “drusen” accumulate in the outer layers of the retina and this is often an early sign of dry age related macular degeneration (ARMD) when the vision is still unaffected.

    A dangerous substance called “free radicals” are increasingly produced too, and these also damage the cells. The layer that nourished the rods and cones is called the retinal pigment epithelium (RPE). This starts to decay and with it the rods and cones are damaged. As more and more get damaged, gaps in the vision start to be noticed. Eventually the entire central area of the macula is affected and the finer detail of seeing someone’s facial features when you look at them is affected. This is called geographic atrophy.
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