What should I do?

[pinkperfection]

My eye clinic is uncertain about whether I have AMD or CSR At press they think it is CSR.I asked for a second opinion and had an appointment this coming week but it has now been cancelled due to the corona virus. I have another appointment for the 20 May but I guess that could be cancelled too. I feel my eye is getting more blurred and the clinic say they can see me but I need to consider the virus risk. I just don't know what to do as I also have a mild form of bronchiectatis which makes me more vulnerable plus I don't want to pass the virus on to my 73 yr old husband. I am very worried.

[springcross]

I have wet AMD and had my last injection on 2 April. I was worried as I have COPD and RA, also high BP. I attended for my injection and was pleasantly surprised to see how much care the hospital had taken. There was hardly anyone in the waiting room (three at one time sat several chairs apart), notices on chairs asking people not to sit here to ensure that people were not close together. The nurses and doctor all had masks and gloves on and I was asked to wash my hands when I went into the injection room, hand sanitizers around the waiting room. The only things I had to touch were the lift button (for which I used a clean tissue) and a tap. The doors were automatic anyway and nurses etc were keeping their distance and everything was very clean. If your eye is getting bad, I think maybe you should consider attending your appointment as your vision could get worse - it's up to you of course. If you're still uncertain you could always contact the Macular Society on Monday for advice, they are very good. The telephone number is below. Good luck and please let us know how it goes.

Macular Society Advice and Information Service

0300 3030 111

[pinkperfection in reply to springcross]

Thank you for your reply it is good to know that they were taking all the necessary precautions. I don't think I will be able to go before the 20th May anyway but I do feel a bit better reading your experience. I

will let you know what happens.

[springcross in reply to pinkperfection]

Please do. xx

[180164 in reply to pinkperfection]

Hi I've had chronic CSR for 12 years now. I have funding for photo dynamic therapy. I'd defo get a second opinion as I'm now registered partially sighted through this condition. Stay safe

[pinkperfection in reply to 180164]

Thank you for your reply it does worry me that there appears to be little they can do for CSR and I am sorry to hear about your situation. Let us hope this virus will calm down soon and hospital visits won't be so scary. Take care.

[180164 in reply to pinkperfection]

Yes my appointment has been cancelled too. I was 44 when my problems started. Take care

[pinkperfection in reply to 180164]

We live in difficult times at the moment. Perhaps I am lucky in some ways a My problem didn't start until I was 60 and now I am 66 in fact my birthday today.

[180164 in reply to pinkperfection]

Happy birthday : )

[Hidden]

Hi pink perfection, good info and advice from Springcross.

Is there a difference in treatment for the two conditions? If so then it may be worth pushing for the second opinion appt. sooner. If not then the planned appt for 20/5 sounds timely, I wouldn't want to go longer if vision getting much worse. The fact your clinic say they can see you indicates they think it's necessary.

Everything I've read here and elsewhere, and seen at my own clinic, the clinics are being very well run regarding covid19 safety protocols .

I would say as long as you cover your own face while out (so as not to breathe on others as you may be a carrier), hubby to cover his face too if he goes with you, and both scrupulously wash hands properly (there's a post on here about that) and repeatedly after touching anything outside the home, dont touch your own faces while out to minimise chance of contamination, and until home again ( where hands should be washed again!) then the risk is very low. Public transport may be a worry but take the right precautions re handwashing/ not touching face and even that should be ok. If I'd been on a bus etc I would probably change my clothes too once I got home, washing hands once undressed but that may be my paranoia!

Best wishes going forwards x

[pinkperfection in reply to Hidden]

Thanks Eyesright good advice. I have tried to get another appointment today but so far hospital has not come back to me but then they are very slow at sorting out these generally it is always very frustrating. Just hope they won't cancel the 20th and I will certainly observe your advice. Stay safe.

[pinkperfection in reply to Hidden]

Hello Eyesright just wanted to report back to you about my visit to the eye clinic as you were so supportive. I have been lucky as the clinic managed to get me an earlier appointment with the consultant I had been waiting to see for a second opinion. As you said all precautions were in place and I managed to get a cloth mask and wore gloves so felt relatively safe. The consultant was very nice and seemed thorough. He said my eye was no worse than last time in fluid terms. He thinks the problem could be something called polypoidal choroidal vasculopathy(PCV). Apparently this has very similar symptoms to MD. However he thinks it has now burnt itself out and shouldn't get any worse and hopefully it won't affect my other eye. I just hope he is right as I now depend on my good eye. They do treat PCV with lasers but in my case it would be too risky and could make things worse. Any way they are going to monitor me every 2-3 months and I now have an appointment for early July. I still feel a bit twitchy as to diagnosis but just have to hope the best. How are you doing? I hope you are not being affected to much by Corona virus. Stay safe and thanks for your support I appreciate it.

[Hidden in reply to pinkperfection]

Great to hear your appt went well x fingers crossed all stays good for you going forward x

Work wise we are inundated with ?covid19 samples but otherwise things aren't too bad although had a bit of stress sorting things for a disabled relative. Cant complain, I have my garden and that's all I need really

[pinkperfection in reply to Hidden]

Good to hear from you hope the work scene improves soon but guess it will be a while yet because of the vital work you are doing. As you say for those of us who have a garden it does keep us sane. The beauty of flowers and the sound of bird song is certainly good for the soul. Take care of yourself.

[Mpatz]

I had CSR back in 2011 and now have AMD in the same eye. The effect on vision is virtually identical and back in 2011 I don't think the imaging technology was as good as it is now to distinguish between the two conditions. After the initial deterioration in vision with CSR, my vision never got worse and started to improve without any treatment within a few weeks. However, if I was in your shoes, with your vision is getting worse, I would suspect AMD and push for treatment.... or at least ask for more scans and a 2nd opinion.

Age is another key factor in distinguishing between CSR and AMD. I was in my early 40's in 2011, so CSR was more probable than AMD.

[pinkperfection]

Interesting to hear this as they have been treating me for AMD but it seems that the fluid behind my eye still comes back which makes them think it could be CSR. The consultant I am supposed o be seeing specialises in laser treatment but not sure if will be appropriate for me.

Thanks for replying.

[Rosalyn-helpline Partner]

Dear pinkperfection,

I have copied a link to our factsheet on CSR. This could be used as a discussion point with your ophthalmologist:

file:///S:/Shared/COMMS/Publications/Patient%20information/Factsheets/Central%20serous%20retinopathy/Central%20serous%20retinopathy%20-%202020.pdf

These links may also be of interest:

macularsociety.org/coronavirus

macularsociety.org/injectio...

Kind regards,

Macular Society Advice and Information Service

0300 3030 111

[pinkperfection in reply to Rosalyn-helpline]

Many thanks Rosalyn this is very helpful, I now have an extra appointment with the clinic next week so they can check me out and I will take this with me.

[Rosalyn-helpline Partner in reply to pinkperfection]

I'm glad to read that you are going to be checked out next week.

Contact us if you want to discuss any concerns further.

Kind regards.

[pinkperfection in reply to Rosalyn-helpline]

Hi Rosalyn, I was called by my eye clinic to attend today and had a very useful discussion with the consultant I wanted to see for a second opinion. Although they are still uncertain as to diagnosis he seems to think my problem is most likely Polypoidal Choroidal Vasculopathy (PCV). I have been searching the web of course and found a lot of information including one useful factsheet from the American Society of Retinal Specialists but I wonder if the Mac Society has anything? Thanks for your help.

[Rosalyn-helpline Partner]

Dear pinkperfection,

Apologies for the delay in replying; I have been on annual leave (at home).

I will check with our research department for you.

Kind regards,

[pinkperfection in reply to Rosalyn-helpline]

Hi Rosalyn

Have you been able to track any other information about this?

Thanks

[Rosalyn-helpline Partner in reply to pinkperfection]

Hi,

apologies for the delay. I chased it up for you again yesterday. I had a reply to say that our research manager is on the case..

Hopefully more soon!

[Rosalyn-helpline Partner in reply to pinkperfection]

Hello pinkperfection,

Our research department have located this article in a 2015 edition of our magazine Sideview. You could use it as a discussion point with your ophthalmologist:

Polypoidal Choriovasculopathy by Mr Nicholas Beare, Clinical Lead for AMD at Royal Liverpool University Hospital

Polypoidal Choriovasculopathy (PCV) is a peculiar sub-type of wet age-related macular degeneration (AMD), which can initially mimic the more usual types of wet AMD, but needs special imaging techniques to diagnose it properly. The treatment is also different, although it often involves anti-VEGF injections of Lucentis or Eylea.

Wet AMD involves the growth of abnormal blood vessels in the layer of the eye behind the retina – the choroid. In the more common form of wet AMD abnormal blood vessel growth comes out of the choroid and under the retina: this is called choroidal neovascularisation (CNV). In PCV the abnormal blood vessels stay within the choroid and look like polyps or pouches, hence the name polypoidal. They may also occur away from the macula and in particular around the optic nerve. These blood vessels are prone to extensive leakage of fluid and bleeding, which damages the vision in a similar way to the common form of wet AMD (CNV).

A special form of imaging is required to diagnose PCV called indocyanine green angiography. (ICG). Angiography is a medical procedure in which a fluorescent dye is injected into the bloodstream. The dye highlights the blood vessels in the eye so they can be photographed. ICG penetrates into the choroid and shows the vessels there that are not visible to more standard angiography. ICG angiography is usually only available in the bigger hospitals treating AMD so it is likely that PCV is under-recognised among patients diagnosed with wet AMD in the UK.

In terms of treatment, clinical trials in PCV show that although anti-VEGF injections will dry up excess fluid in and under the retina, they usually do not address the underlying polypoidal blood vessels in PCV. The best way to get rid of these is with a light-activated medicine, which is given intravenously and activated in the eye by a laser light, a treatment called photodynamic therapy (PDT). In Liverpool, we treat PCV with a combination of PDT and anti-VEGF injections if leaking fluid is affecting the vision, and just PDT if it is not. This has had good results and may save many monthly injections once the blood vessels are closed.

[pinkperfection in reply to Rosalyn-helpline]

Many thanks Rosalyn this is helpful and I shall add it to my other information.