A bit scared!

Hello all, I'm new here. Today I visited the emergency eye clinic as a result of blurred vision and distorted lines. This came on suddenly. I was told that I've got Myopic Degeneration which I'm led to believe is different to Macular Degeneration but as equally devastating. I'm only 44 and have two young boys. I'm so afraid, confused and feeling helpless. From what I've been reading there isn't much that can be done. I didn't feel as though I got much in the way of support at the eye clinic. He was very matter of fact and just said it is very unfortunate for me. There was a language barrier and I found it very difficult to understand what he was saying. I got the jist but I'm left with so many questions and don't know where to turn for help. I was thinking of booking a private appointment with a specialist just so I can have the condition explained in more detail and so I can ask all the questions I have. To be honest I feel a little let down by the NHS right now but only from a patient well being perspective, I know it's not their fault I'm losing my sight but I think a little more of a gentle manner would help so much. Can anyone recommend someone who specialises in this condition?

Thank you in advance.

11 Replies

oldestnewest
  • Hi williver, firstly sending you a big hug X diagnosis is always a shock and v scary x

    I recommend you call the Macular Society helpline 0300 3030 111 they are brilliant. They also have a good website with lots of info on different conditions, yours might be there, also nutrition and treatment etc. They have support groups and buddies too which might help you. It's surprising how many of us are still working age.

    I cried for 2 weeks after my diagnosis (diff condition) everyone on here will understand how you are feeling so you are not alone and we will be here to support you as best we can.

    Be gentle with yourself - a diagnosis like this is akin to a bereavement and you need time to come to terms with it x

    I'm sure the Mac Soc will help you - the more info you get the better you will feel as the unknown is always more scary and preparing for the future is a positive step.

    Some conditions take years to progress but even if yours isn't one of those you have your two children to stay strong for - that's a lifeline x

    All the best to you going forward, all I can leave you with is a saying that has helped me - don't let a bad today spoil the possibility of a good tomorrow, worrying doesn't change anything, just wastes what good time we have left.

  • I was diagnosed with myopic macular degeneration nearly ten years ago, in my late 50s - not as young as you but I can understand how devastated you feel. In my case only one eye was affected and the Eye Clinic did a scan of the back of the other eye, and I was reassured to hear that the problem was unlikely to affect the good eye in the foreseeable future. I was able to continue working and driving, although I do ask at every check whether I am still OK to drive. The Macular Society is a great source of help and advice and they do have information on MMD. There is also a group called W@M for people of working age with macular disease.

  • I'm very sorry to hear your news, As the others have said, the Macular society is very helpful. You may also want to ring the RNIB- I rang them about a different problem and they got their medical advice person to ring me back and she was very knowledgeable

  • hi, don't feel like you're alone; my doctor and his office (minions) staff have no information to share other than there's no cure and come back for injections.

    I find this lack of patient education in their offices (in fact do many specialists) the norm. I've spoken to them about this but they clearly aren't concerned with any more than injections and maintenance.

    some minds can only work this way, that is not doing anymore than they can handle...for one reason or another. It's just what I've found. Doesn't mean the doc isn't good. In fact, after a lot of thought on my part, I asked myself do I want a doctor whose concern is treatment over comfort of my visit or the opposite. Well treatment won out, I have com to accept the doc and his office staff but gathered all information I can in other places.

    what I don't see getting attention is the psychological impact of what were going through.

    this should be addressed.

    luckily I take care of that on my own, but I cry for others who cannot or do not choose to seek help.

    you'll learn a lot here, if you have more personal questions drop a private message to me or whomever you want to.

    hang in there, I've lived through a few other illnesses and I live with many disabilities...ill share what all I've learned 😊 🏫😉😁😎

    BTW, I'm in the States.

  • So sorry you feel the way you do, williver. It's understandable. I too was bluntly told: "Your'e are going to lose your central vision." The shock is too horrendous to describe when it comes out of the blue without staff trying to cushion the blow. And it doesn't matter what age you are at. I am a fair bit older than you, but at the beginning, even suicide had entered my head.

    The doctors, consultants and nurses at the clinic are really too busy to spent time on the psychological side of things and I suppose treatment and monitoring is their main function. The explanations and the comfort must and will come from different sources . The Macular Society is very good, as has already been mentioned. Also many clinics have this sort of service attached. Phone and ask what is available. Our local low-vision charity shop too will help me if I need it. They can also test my eyes if I want them to. They will certainly point you in the right direction. As for expecting explanations from the consultant - mine doesn't even seem to want to share my eye secrets with my GP, never mind with me. Having said all that, he is very efficient.

    Read up as much as you can on your condition and look at images. You can learn a great deal, though it does not replace a face to face conversation. There are plenty of websites that explain things. But please do not distress yourself too much. Spend as much quality time with your family as you can. And we are always here to support you. In time you will hopefully see that things don't necessarily happen over night and you will learn to make the most of what you have.

    Good Luck!!

  • Hi Williver, I am sorry to hear of your diagnosis and can only add to what has been said about the Macular Society Helpline being a useful source of information. They can send you a fact sheet on myopic macular degeneration. I was 48 when I found out that I had myopic degeneration and the emotional side is a shock to us all. You are right that there are some similarities with AMD. One is that both can be either wet or dry. You mention in your post that symptoms came on quickly. In that case it may be worth asking your optician or GP for a speedy referral to a retinal specialist to check that you have not had a bleed. as myopic bleeds are often less easy to pick up on a scan than AMD and you would need to know if you had had one. Are you near one of the bigger teaching hospitals?

    Good luck 🌻

  • Hi Williver ..first a big cwtch (((((")))) (hug in Wales) ..it is a shock and your right about the Docs ...because its an everyday thing to them they are to the point ....personally on first diagnosis i think there should be someone at the clinic to take you for a chat and answer your concerns ....but as there isn't im sure there will be a lot who can help you here ..(there shouldn't be a language barrier) .....dont keep it all in and worry ..speak to Macular Society and tell the clinic you need to speak to a consultant ....good luck xxxxxxx

  • Hi, I've just remembered about a year ago there was a lady who set up a webpage and then a Facebook page I think called "My macular journal" or something similar.

    She had an eye condition but was also a psychologist and was writing an on line diary about her attempts to help herself. I remember some of it was useful to me, it might be to you too. Don't know if she's still on here, haven't seen anything lately (her friend was posting for her) but you might find something if you search the web x

  • Hi Williver,

    I am so sorry to learn about your diagnosis.

    As some of the others have said, we have a factsheet about Myopic Macular degeneration. Either call our helpline 0300 30 30 111 (9.00am to 5.00pm Monday to Friday) or email us on help@macularsociety.org.

    If you would like to find a suitable private ophthalmologist, who specialises in myopic macular degeneration, our helpline can help you with this.

    We have a network of support groups; quite a few 'W@M' groups for younger, working age people. Our helpline can find your nearest one.

    We also have a free confidential telephone counselling service which can also be accessed through our helpline.

    Best wishes

    Helpline

    Macular Society

  • Hope this Helps ....Its a bit wordy sorry but should be reasonably accurate

    Pathological Myopia (myopic degeneration)

    Pathological myopia represents a subgroup of myopia and affects up to 3% of the world population. Vision loss related to pathologic myopia is of great clinical significance as it can be progressive, irreversible and affects individuals during their most productive years. High myopia is defined as refractive error of at least -6.00D or an axial length of 26.5mm or more.

    Pathologic/pathological or degenerative myopia is defined as “high myopia with any posterior myopia-specific pathology from axial elongation.

    The overall global prevalence is estimated to be 0.9-3.1% with regional variability.

    The prevalence of pathologic myopia-related visual impairment has been reported as 0.1%-0.5% in European studies and 0.2% to 1.4% in Asian studies.

    Aetiology

    Biomechanical forces related to axial elongation of the eye result in stretching of the ocular layers and progressive thinning of the retina, choroid and sclera.

    Risk Factors

    Primary risk factors for pathologic myopia include greater axial length and age. Additional possible risk factors such as female gender, larger optic disc area and family history of myopia have been suggested by additional.

    History

    Patients may describe needing to wear thick glasses as a child or slowly progressive vision loss. They may endorse new metamorphopsia or scotoma when vision-limiting macular complications develop.

    Physical examination

    Assessment of visual acuity, intraocular pressure, pupillary reaction and dilated fundus exam are essential. A thorough macular examination and peripheral depressed examination are key to detecting complications related to pathologic myopia. In particular, lacquer cracks, myopic schisis, or choroidal neovascularization in the macula area and holes or tears in the periphery of the retina. Assessment of visual fields and Amsler grid testing may be beneficial.

    Signs

    Progressive retinal pigment epithelial (RPE) thinning and attenuation develops in various clinical changes throughout the fundus.

    A tessellated (mosaic) appearance corresponding to irregular distribution of RPE atrophy and variable light reflection may be appreciated even in young patients with high myopia.

    When RPE attenuation surrounds the optic disc, this hypo-pigmented finding is described as peri-papillary atrophy.

    Commonly the optic disc has an oval appearance en-face and is referred as a tilted disc. The optic nerve appears to insert into the elongated globe at an angle. The tilted appearance is characterized by temporal flattening of the disc due in part to peri-papillary scleral expansion. As a result, a hypo-pigmented myopic crescent or a myopic cone is seen where sclera is directly visible. In intermediate disease, choroidal vessels will be seen beneath atrophic RPE however with progressive disease the choroid itself also atrophies and the choroidal vessels may become less noticeable.

    Lacquer cracks are irregular yellow-appearing bands often seen in the posterior pole and are present in 4.2% of eyes with an axial length of at least 26.5mm. These represent breaks in Bruch’s membrane and may be foci of future choroidal neovascularization (CNV). Over time these breaks can expand and stretch and in late stages may resemble the appearance of geographic atrophy similar to that seen in advanced non-neovascular Age-related Macular Degeneration (AMD).

    Fuchs spots (also referred to as Forster-Fuchs spots) are areas of RPE hyperplasia suspected to be the response of the RPE to previous regressed CNV.

    Staphyloma development, characterized by outpouching of scleral tissue, typically involving the optic disc or the macula, is a common occurrence, estimated in 35% of eyes with high myopia.[4] This can be difficult to appreciate with bio-microscopy but is evident on Optical Coherence Tomography (OCT) or B scan ophthalmic ultrasound. Staphylomata are commonly associated with lacquer cracks, RPE attenuation, epiretinal membrane and macular or foveal schisis.

    Symptoms

    Patients may be asymptomatic during the slowly progressive attenuations of the RPE and choroid. In the cases where central CNV or foveal schisis develop, the patient may note a focal area of blurring, metamorphopsia or scotoma that can rapidly cause serious decline in central vision. Peripheral CNV may go undetected.

    Clinical diagnosis

    Diagnosis is based on fundus examination with identification of characteristic features, lack of more plausible cause for the degeneration and diagnostic testing as described below.

    Diagnostic procedures

    Fluorescein Angiography is useful for evaluating myopic patients for development of CNV. Early images may show transmission defect in patches or areas of RPE atrophy at the macula and/or around the optic disc. Angiography can identify lacquer cracks in early and transit phases by linear distribution of transmission defect.

    In pathologic myopia, the development of CNV tends to be smaller and less exudative compared to CNV seen in AMD.

    Myopic CNV may appear as a focus of hyperfluorescence with a rim of hypofluorescence corresponding to hyperpigmentation at the border of the lesion. Any associated hemorrhage will result in blocked fluorescence. Leakage is seen in late images with or without blurring of the pigmented rim. The leakage present with myopic CNV is more subtle leakage that with CNV related to AMD and it is common that the CNV leakage may be partially or completely obscured by overlying subretinal hemorrhage. Indocyanine green angiography (ICG) may be more sensitive for detecting CNV as the vascular leakage in pathologic myopia is typically less prominent than for AMD-related pathology and can be more easily missed on fluorescein angiography. Despite subtler findings on imaging studies with myopic CNV compared to those AMD related CNV, patients often note that these smaller lesions alter the visual perception significantly.

    OCT is the preferred method of following myopic CNV over time. Although FA or ICG is more sensitive for detection, SD-OCT is a non-invasive, quantifiable and widely available method for monitoring CNV. The CNV will be visible as a subretinal hyper-reflective lesion with or without intraretinal fluid, subretinal fluid or pigment epithelial detachment. The physical topography of staphyloma and thinned retinal layers pose challenges to interpreting OCT in the myopic patient however the resolution is appropriate for most patients. The role of OCT angiography in pathologic myopia is being investigated at present.

    Spectral Domain OCT also allows for detection of myopic or foveoschisis or macular hole formation. For this reason, evaluating patients with SD-OCT permits better demonstration of the macular anatomy compared to a biomoscosopic examination.

    Management

    Patients with stable high myopia may be followed annually for visual acuity, refraction and general ophthalmic health. In the case of development of CNV or other complication patients are followed more closely, as directed by their treatment regimen.

    Treatment

    There is no topical, local or systemic pharmacotherapy or surgery that is known to alter effectively the increase in axial length and the thinning of scleral choroid and retina of pathologic myopia. There are, however, treatments available for CNV, a major complication of pathologic myopia.

    Anti-VEGF therapy is now considered first line intervention in patients with myopic CNV.

    Anti-VEGF for can now be used in the treatment of myopic CNV, NICE have Eylea and Lucentis

    Current data indicate that patients are more likely to have clinical response and resolution of CNV within 1-3 injections as compared to long-term monthly injections in macular degeneration complicated by CNV.

    Surgery

    Patients with decreased vision in the setting of macular schisis or foveoschisis may benefit from vitrectomy to relieve traction on the fovea and prevent formation of macular holes or macular retinal detachment.

    Internal limiting membrane peeling, likewise, is seen as an important asset for relief of traction and improved macular hole closure rates.

    Retinal detachments may develop however if confined to the area of staphyloma these may be monitored without intervention. Prompt surgery is indicated if any progression is identified. The use of a macular buckle to treat the staphyloma as well as ongoing vitreous traction or detachment is reported to have higher foveal reattachment rates than vitrectomy alone in cases of recurrent detachment. Direct macular buckling even without vitrectomy has had good rates or retinal reattachments, likely because of alteration of distribution of vector forces allowing for improved contact of RPE with neurosensory retina, however this approach is generally considered second-line due to postoperative complications such as metamorphopsia and alteration of choroidal circulation. The role of macular buckling is still controversial.

    Complications

    Complications associated with visual morbidity in pathologic myopia include progressive thinning and atrophy resulting in photoreceptor loss, development of choroidal neovascular membranes, pigment epithelial detachments and macular or foveal detachments. Ninety-percent of patients with CNV are expected to have atrophy surrounding any previously regressed CNV. Peripheral retinal detachment is another complication.

    Prognosis

    Progressive visual decline in the form of progressive chorioretinal thinning, atrophy and stretching of existing scars is expected in about 40% of patients with pathologic myopia.

  • Hello there, my hubby has MD he is 77 but receiving great treatment. ALWAYS get a second opinion is his advice to you. His recommendation is to visit your GP & ask to be referred to a local eye consultant. If you Google the list of consultants in your area, & read their reviews, it is a good starting point. At eye clinics they have specialised eye equipment. It is usually 'forever' treatment, BUT it is there for you, so don't wait a minute, be proactive, & you will receive the right treatment for you. Best Wishes

    Doug&glad

You may also like...