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?

17 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,

  • 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

  • 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

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

  • Thank you Rosy.

  • 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

  • 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

  • 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?

  • 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.

  • 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?

  • 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.

  • 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.

  • 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

  • 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.

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

  • 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!!!

  • 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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