Macular Society
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Chronic central serous retinopathy

Hi everyone,

I've recently received a diagnosis of chronic csr after 4 years of symptoms in my left eye (which were completely dismissed by my GP and optician) and new symptoms in my right eye.

What has shocked me most is my consultant not being able to give me any information on this condition and due to the condition being rare, a lack of NHS treatment.

My understanding is that this usually affects men in the 20-40 age group, steroid users, diabetics and type 'A' personality types. There isn't treatment as the sight problems usually rectify within a few months. I am a 48 year old female, not a steroid user, not diabetic and not suffering from stress (apart from the stress of losing vision!!) and have had this for a number of years.

Is there anyone else out there who maybe experiencing something similar?

25 Replies
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Dear reabook,

I believe that you may have already been in contact us on the Macular Society helpline?

Please do not hesitate to contact us if we can be of any help/ further help. The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

help@macularsociety.org

Kind regards,

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Hi Rosalyn

Yes I have.......and I've received the info pack so thank you. I noticed in 'Sideview' the article about the VICI trial and chronic csr and I have been in touch with Bristol CTEU. I shall hopefully be screened for suitability to take part in the trial soon.

Best wishes

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Dear reabook,

Good, I thought so!

As I say, contact us directly again if you need us!

Kind regards,

Rosalyn

Macular Society Helpline

0300 3030 111

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I don't have this but just wanted to say sorry you are having this problem

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Thank you Rosy.

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Hi. At long last some one with my condition. I was diagnosed with this in 2008. I was 42. My care has been great although I was a mystery to all the eye specialists. I also had a massive macularhaemorrhage in the right eye the chronic csr is the left. My sight has deteriorated so much. I was granted funding for visuldyne therapy (pdt) 8 years ago and had numerous treatments. I don't want to alarm you but I am now registered partiallysightedand no longer work or drive due to the terrible dis torsion and other problems. My eyes hospital is in hull. How bad is your sight now. I struggle so much on daily life please try and get help. Mandy

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Hi Mandy thank you for your reply and I'm sorry that your life has been turned upside down by this condition. I have to admit to being scared of what might happen in the future. I'm usually someone who likes to read up on things and that's been impossible. I've been processed through the eye clinic very efficiently and am on the waiting list for laser treatment. I am hoping to take part in a drug trial (eplerenone) and I'd be happy to share any new information I get through being involved. Best wishes Andrea

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I wonder if I would be eligible for the trial. I'm going to phoneed them on Tues. How bad is your sight at the moment? Do you have a lot of distortion?

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My sight is poor in my left eye with one full scotoma and one partial scotoma causing distortion and I have a scotoma forming in my right. My vision is more blurred even wearing glasses and colours are dulled. I also have problems in low light so I don't drive at night (I have enough sight at the moment in my right to meet the legal requirements but my confidence is lowering) and my eyes take longer to adjust from bright to dark so I've had a few trip ups. The distortion is something which is getting worse but I can't find any information on how to help myself with that.

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Yes I'm the same with the distortion it's awful. My colours are also dull have you asked if your classed as partially sighted. I have a free bus passtop but also my confidence is going when I'm in an unfamiliar place. I can't see people I know until I'm virtually face to face and that's with lenses or glasses on. Nice speaking to someone who understands. It's so hard to explain to people isn't it?

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Yes it really is hard to talk to anyone.....my husband has been brilliant but the extended family have googled it and don't know what the fuss is about. My sight is very poor in my left and only just started decline in my right so I don't meet the criteria for being registered. It is frustrating not being able to see as well as normal - sometimes I get really angry and others a bit upset. And yes it's lovely to speak with someone who understands.

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I had CSR when I was 42 following cataract surgeries. I also have some shaped macula and myopic degeneration. After a few months it subsided and no more problems for about ten years. Last five years the CSR on my left eye has gradually worsened and had a Cnv bleed on my right eye which stopped after one injection. I consulted a different retina specialist who thought I should try injections. After 3 injections he says the leakage is 50 percent improved. However I cannot see any better. 20/60 in left eyes and 20/40 in right with glasses. I have mild distortion and gray areas on the left eye. However I still drive and work on a computer. I have read that micro pulse laser is an effective treatment but the condition often occurs. Keep me posted. I am in the US.

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It's excellent news that the problem has improved with your injections (these aren't available in the UK for chronic csr and because the condition is rare there is no licensed treatment on the NHS). Which drug was used for your injections.

Best wishes

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Avastin was first but it did not give improvement on OCT. have now had 2 injections of Lucentis with improvement on the scan. I am hopeful that the vision will improve a well. One injection of Avastin halted the CNV bleed into my right eye 6 months ago thankfully. Be persistent in trying treatments.

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Thanks for that. I will let my consultant know about this at my next appointment. I hope things continue to improve for you.

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YES!!!! I am a 68 year old women who was initially diagnosed with Wet AMD in my right eye, possibly because of my age and because the doctor I saw was unaware of CRS. A second doctor mentioned it but deferred to her colleague. Under pressure I consented to 3 rounds of Lucentis (a terrifying option as I am needle phobic and needed to be sedated each time) I decided enough was enough, and that I would prefer to adapt my life to the condition, rather than undergo any more treatment. Despite making it clear that my vision was not typical of an ADM sufferer the doctors were only interested in the macular X rays which showed a typical Wet ADM 'bump'. After a month or so of no treatment my vision improved slightly it remains stable after 12mths, but I now know I have Chronic CRS. Yes, I was very stressed and I have had CBT which is sometimes recommended with this condition.

I know that CRS is rare and can be mistaken for Wet AMD, there has been a vague mention of laser therapy, but until more information is available I am reluctant to try this. A side effect of Lucentis is cataracts and I am also aware that I am now showing signs of this condition in my right eye. I continue to research any articles relating to CRS.

I doubt we can do much but wait and see what medical advances the future holds, but if it involves injections into the eye, I think I'll pass!!!

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Hi I was diagnosed with chronic CSR in 2008. I was funded for pdt visuldyne therapy. My eyesight is poor and I'm now registered partially sighted I can no longer work or drive as the distortion is so bad. I live in Hull. Best wishes to you

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I was diagnosed with CSR about 2 yrs ago but by the time I got to the retina specialist the fluid was gone (5-6 months later). my vision was 20/60 then gradually went back to 20/25 as of today my vision is 20/50 so they feel that I had another episode, again no fluid showing. My problem is my vision may have gotten better but the grey or blurred central vision has never gotten better. It is like looking through plexiglass all of the time. Today I could not handle the bright light they shine in your eye to see the back of the eye. My tests always state my eye is good. Night driving is scary and during the day it is just a blur. Anyone ever experience this? Is there anything that will help clear my vision. I am 56, female and no sign of cataracts. Right eye is clear. I feel helpless.

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I'm sorry you feel so helpless - I've been feeling a bit down about everything - driving is so tiring -I can't drive at night or bright sun - reading is getting more difficult and it's hard to see faces because of distortion. I'm hoping to speak to a counsellor through the eye clinic I attend. Is this something you might find helpful? Best wishes to you. x

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We sound very similar, except I am male. I'm 48 and don't fit any of the typical criteria for getting central serous. I'm not diabetic, I am not type A, not in a high stress job. I've been dealing with this now for about two years. I have it in both eyes, although the right eye has it way up in my peripheral vision, so I hardly notice it. My doctor has only been treating my left eye, which has it in the very center.

The first treatment I had was Avastin injections, and those actually seemed to work. The condition greatly improved and seemed to almost go away completely. Then it recurred. The second treatment was the yellow micro pulse laser paired with continuing the injections. This time it only got moderately better and never went away entirely. I was told the Visudyne treatment was the most effective, but that the expensive drug was not covered by my insurance.

I asked my retina doctor to appeal that and see if she could get it covered. Much to my surprise, she did! I had the treatment about 2 1/2 months ago. Sadly, I wish I could say there was dramatic improvement but there was not. Only minor. My doctor literally said to me "I don't know what to do with you" during my last visit. Not exactly what you want to hear from your specialist. We are back to injections now. I go back for another one in a few weeks.

I've never heard of this VICI trial, whatever it is, but I will probably research it more. Do you know if it's available in the US?

One question: Does anyone suffering from this condition drink a lot of coffee? I wouldn't say I drink a TON, but I do have a daily espresso drink in the morning. I'm pretty addicted. I've been thinking I should probably just cut caffeine entirely to see if it helps, but it'll be tough. Better than permanent sight loss, though. Any thoughts on this?

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We do sound similar - where I am in the UK the only treatment on the NHS for csr is for laser surgery on an application only basis and in my area, injections aren't available for this condition. I also have it in both eyes and in my right the 'leaking' blood vessel is too close to the optic nerve to risk surgery.

The vici trial is happening all over the UK and is for a drug used for heart conditions - Eplerenone - not sure if it has a different name outside the UK. It seems to be really good at stopping bleeds and draining the fluid from the affected area - if you can take it as there can be side affects. Hopefully, enough positive results from the trial will mean that this will be licensed for use by the NHS soon.

I did read somewhere that like other macular conditions, nutrition can have a huge impact and caffeine was mentioned as something to avoid. The Macular Society might be able to help you with some more information.

It is hard to find any information on this condition, especially when your specialist doesn't see this very often, and the unknown can be a bit scary. Driving is difficult (I am legally ok) and I don't drive at night. Using laptops and tablets is also tricky because of distortion (sorry if this isn't typed very well).

Best wishes

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Hi, previously I’ve been active on the Restless Leg Syndrome section ­– hence my site name.

Regarding caffeine, you may want to look at this:

retina-specialist.com/artic...

Vision in my left eye went dim in May 2016. I went to the emergency department of the Manchester Royal Eye Hospital (MREH) and after an OCT they said I might have CNV. I was to have an FA. However, the appointment for the FA also had one for Lucentis and I wasn’t at all keen on the jabs and cancelled.

So I developed problems with wavy lines and worsening colour until I just had a central scotoma with virtually no central vision in the eye. It's still the current situation in that eye.

About three weeks ago, the right eye seemed to be developing the same problem. I went to an optician that took fundus photographs and they referred me immediately to the MREH. The OCT showed some fluid under the retina. I also saw the OCT from 2016 and that seemed to just have swelling. I could have made an appointment for Lucentis but opted to have the FA and see a specialist first. My appointment with the specialist is this Friday.

I’m still not sure they have enough examination information to make a final diagnosis. Will they not also need to do an ICGA to distinguish between CSR and, say, AMD?

Then there’s the question of the best treatment. Many references aren’t too sure of the benefits of Lucentis for CSR. Should one put all one’s hope into Eplerenone or one of the other drugs or take all the options open?

Incidentally, I used to start my morning with 4+ mugs of fresh-brewed ground coffee. A couple of months ago, I cut that down to 3 and sometimes just used cappuccino sachets. Yesterday was my first day caffeine free.

I'm a 66-year-old male.

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Hi

I have had csr in my right eye for the last 14mths. When I was diagnosed I was told that I'd had a previous episode which I wasnt aware of. I am followed up every 2-3mths but have had no treatment so far. I now also have traction in that eye and have been told that the vision loss is permanent. At my yearly sight test 2wks ago the optician thought I might also be developing csr in my left eye. She gave me a referral letter to take to eye casualty. I haven't done this as it seems pointless if they're not going to treat it. There has been no change in my right eye apart from the traction. Can anyone tell me why they have not given me any treatment? I feel like the traction has been caused by this and am rapidly losing faith in them.

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hi reabook , i am 43 years old and got a same situation like you ,did you get any clue how we can get rid of it permanently ?

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Hi Reabook

I too am experiencing the same thing. Although I am a male 35. I don't not have diabetes, not a type A personality and though I am into fitness I have never touched a steroid. I have had CSR on and off for 6 years. I think I have at 10 or more "leakages" that i know if. They are the worst when they are through your central vision. I had them stick around for over 6 months. Has anyone else had them that long at a time. It's funny, when I get one I literally go into the specialist and I basically knowledge HIM on the subject cause I've had it so many bloody times. I currently have one in my left central eye and a smaller one I'm my lower corner of my right eye. I've taken specific drops to help and I do have a stressful job bit do you have any tips Reabook... or does anyone else? Thanks.

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