Diagnosed with Wet Macular Degeneration 6 moths after cataract op

[silkysoft]

My optician found my right eye had high pressure and I was referred to a NHS community clinic for treatment .The advised replacement IOL in both eyes ( called a cataract operation) They did my Left eye first and I had 6/6 vision within 2 days , about 2 weeks later my vision started to deteriate ,I rang and they said * just give the healing time* 4 weeks after the Left eye they did the right eye.I told them at the time about the vision in my Left eye, being perfect at first and by this time most definitely * greyish and felt like I was looking through a raindrop at times.On my check up for both eyes 2 months later the consultant told me it was a refractive error as NHS did not pay for that then I would have to either wear spectacles/contact lenses or pay for it with * Optimax * He would see me again in 2 months as the pressure in my Left eye was a bit higher.The consultant sent me a copy of his report to my G P which he stated my Right eye had high pressure and he would do a test for early glaucoma in 2 months .In this report it showed that my Left eye had higher pressure.Two months check up and I again complained about my Left eye ,he examined both eyes but said he would leave the Left eye for another to months and then do the * testing *.I rang two weeks ago and demanded an appointment and was seen by him on Friday ,I told him I felt practically blinds in my Left eye and could not see to read if I closed my Right eye ,even with my spectacle .He examined it and sent me for a OCT and then shocked me by saying he was e-mailing my local hospital eye department using a * must start treatment within two weeks criteria * as I had Wet Macular with fluid.

They did the first IOL exchange on the 28th January 2018 and I have not only complained to the clinic and emailed the Directors on the 20th March with my concerns and my local Primary Care complaint. I rang the hospital on Friday after I returned home and they said to ring tomorrow as they didn`t have the e-mail. I am now worried sick about my eyesight and apart from what I have read know nothing about Wet Macular ,I have both my opticians report and all of the clinics and none of them say anything about any Macular conditions.I am going on holiday for a week on Thursday and now have no idea if I can go.

[alalex101]

I do think you may have macular edema or more precisely central serous retinopathy as I have in one eye. It eventually disappeared about a year after my surgery but has reappeared and is now chronic. It varies on severity. It is often related to steroid use which I see that you have. Optician or optometrists may not know the difference in appearance on an OCT scan whether fluid or bleed. In my case, the bleed responded well to injection but the fluid has not so I can’t tell you which is best to have. Unless it delays your eye appointment, go on vacation. I was also fitted with the wrong size lens at cataract sirgery. A year later I saw a specialist who did a “piggyback” implant and improved my vision for a time. I know you are upset, angry, frightened but life is not over. You will learn to cope with whatever comes. God bless you!

[silkysoft in reply to alalex101]

A big thank-you to all the people who have given me advice * hug * I rang the Hospital today and they couldn`t tell me when my first appointment would be . I gave them the date of my Holiday and left it at that .I was in such a dilemma I then rang the local private Hospital and made an appointment for a private consultation 2pm this afternoon at a cost of £250.+ I took all the reports I had received from the NHS community consultants who were responsible for my treatment.The consultant read them and then examined my eyes , Tow lots of Drops in both to dilate the pupils, he did a quick slit lamp and a contact lens examination, then the eye test chart with a pinhole test on my left eye. His diagnosis was Wet Macular in my Left eye ,and perhaps a 10% in my right eye ,his advice was to cancel my holiday and at the cost of £3000.00 plus his £250.00 fee , he would first send me for tests tomorrow and order the injection for next Tuesday so I would have had treatment by Tuesday of next week.He put a great deal of emphasis on how it was imperative to give the first injection ASAP.he also suggested that if I went on holiday and the Hospital contacted me for an appointment I would not be there and they could possibly * back log me * plus how he needed my decision within the next 15mins otherwise it would delay him being able to arrange the tests. I insisted that my husband and I needed to go out and discuss all this My husband was all for following his advice and arranging it there and then but I argued that * this was available on NHS and as pensioners we really could not afford to go this route* I returned to the consultants office I asked him about the 10% in my right eye ,he said that did not need any treatment it. I him we needed more time ,he was O K with this but said he himself would be going away and we did need to ring his secretary ASAP. On our return home I rang the local Hospital again and spoke to a eye consultants secretary ,after a few mins she came back and told me the consultant had viewed the referral and said to make an appointment for 2/3 weeks time ,she ask what day I came back off holiday and offered me an appointment for September 13th at 08.45 when she said they would do tests and decide which treatment.

My grateful thanks for * just being there for me especially as you all have your own problems, I had never even heard of this condition before Friday.Thank you everyone.

Silky

[fed13]

Do talk to the Macular Society ,macularsociety.org, Helpline 0300 3030 111. I am so sorry to hear of your difficulties and trouble with your eyes. You have had a horrible time, and my heart goes out to you, but as alalex says, it does got better.

Keep us informed on this forum; let us know things go; I wish you all the very best. Enjoy your vacation!

[Hidden]

Hi, sending you a big hug x you have had a terrible time of it. If you haven't already done so copy your complaints to the PALS at your hospital and ask them to intervene on your behalf to find out when your appt will be, explaining that you need to know if you can go on hols or not, and also for comment on how your case has been handled so far. They will ensure you get a response. But at the same time ring the eye clinic and ask directly when your appt will be. I'm afraid we often have to progress our own cases.

Looking ahead you should know that the treatments for wetmd are usually very successful at stabilizing the condition although everyone is different and you may need more or less inj . Try to focus on the positive - you will be treated and this ought to improve things for you. I wish you all the very best going forward. The others have given you good advice x

[Ayralin]

Hello, FIRST - take a deep breath. I had symptoms Dec 22, 2017. I made an appointment for two days after Christmas. My eye studies revealed either the Wet AMD -or- Central Serous Retinopathy. It took until the end of March 2018 [3 months after symptoms] for doctors to decided to go ahead with injections. So don't panic! Deep breath and proceed with your plans, do the NHS. I'm in the USA, so we don't have your system. My reassurance is that even if it takes a little time for your treatment to start - things will work out. We humans are pretty adaptable - even with some vision loss, I am enjoying my retirement. You will be OK, too! HUGS from Minnesota!

Linda

[Su_HelplineMacular]

Please call us on the Macular Society helpline as soon as you are able. There are many angles to this which need addressing. We are here Mon to Fri 9-5. 0300 30 30 111

Best wishes