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?
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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.
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.
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.
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
I have recently been diagnosed with CSR in both eyes. I am a 69 yr old female. I’ve been reading up on this and hope it will be temporary. The only steroid use recently was and an over the counter hydrocortisone cream I used occasionally for an irritation on my upper arm. My concern is that I have this in both eyes, which is not as common, and also the fact that I do not fit the “ profile” for typical cases.
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.
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
I've been reading up on specific yellow tinted glasses that filter out the white blue light. So far reports seem positive in its help.
It seems recognised that lights on the white/ blue spectrum are especially aggravating to CSR folk.
I seem to retain the image in the eye for far longer than with a yellow light.
Access to work are funding taxi journeys to/ from work as no public transport is available in my area and I work into the evening. There's just a contribution of 25p per mile to pay myself.
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?
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).
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 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.
Sorry for not replying sooner - unfortunately I wasn't given any ideas about how to stop this as I think no one really understands why it happens. Avoid steroids especially nasal spray for hayfever or hydrocortisone creams and eat and drink as healthily as you can and avoid stress (haha).
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.
The main thing I've picked up is to avoid any steroids, even creams and sprays (for hayfever). I've had csr for about 7 years and the holes seem to be permanent but I do hope they will heal. It's been a really horrible experience getting drs or opticians to take this seriously. I was laughed at for trying to explain my difficulties with my vision especially in lower light settings and I'm so cross at myself for not being more assertive with medical staff, who because of their ignorance of the condition dismissed my symptoms and me as being neurotic.
The macular society were really helpful but because there doesn't seem to be a definite cause it's difficult to know what to do to improve things.
There is a drug trial happening - VICI in Bristol and other hospitals which is testing eplerenone (usually used for heart failure) to stop or minimise the bleeding in the eye. The macular society might be able to put you in touch with someone if it's something you'd be interested in.
Hi. I have had CSR in both eyes for about 6 years now. I was put on emplerenone a few times. Unfortunately it didn’t help my episodes of fluid pockets. Injections in my eye have finally stopped new pockets from appearing but the damage that has been done can not be corrected.
I've been reading as many clinical papers as possible ( low trial numbers) to see if I can glean anything to help.
I have found that stress/ reaction to certain life situations is a trigger for an episode.
Mindfulness, Pilates? Can help to relax.....
However, I decided upon trying the legalised version of cannabis oil CBD. it is available in health food shops.
I've found this has had a positive impact from a mental health point of view and it calms the worry over this disease.
Not for everyone I'm sure, but it is helping me.
The frustration with CCSCR is that there's no active medical intervention to arrest it's progress.
I've registered with The Macular Society and had help from RNIB.
I avoid night driving now as I realise that blue-white light is difficult to tolerate, and Access To Work offer assistance in funding taxi to work when I need it. They've also visited my workplace to give professional assistance on adjustments.
I sincerely hope you gain remission, in the interim some of the above may be of help.;
I'm 47, female, diagnosed with Csr, right eye vision is distorted and blurred, evident as just beginning in left eye.
Stress and steriods are the main causes - especially the heightened cortisol hormone within the body.
I've had a tough week since diagnosis and it's raised my stress levels big time - catch 22.
I'm having laser on my left eye tomorrow to mend a torn retina ( nothing to do with Csr amd a big surprise) then I'm to begin eplerenone 50mg from Tuesday, precribed by my eye consultant here in Ireland.
I'm worrying about side effects of course - but he almost assured me this Drug will help.
Have you began it yet?
@flintshire, I've thought about cbd oil also and may try this too for relaxation.
I teach Mindfulness Meditation and stress Management - ironically - but my life circumstances meant I had a massive amount of stress this year. I'm convinced it's the high cortisol in my body which caused the leak.
Eplerenone lowers cortisone.
I'm going to ask tomorrow after my op if i can begin on 25mg.
Hi I also have CSR in both eyes (which is very rare) I was 42 , but I've lost apart of my vision in my right eye and all they say to me it's stress it caused this to happen it's water blisters in the back of my eyes that bust's and destroyers the back of the eyes. I would love to get proper help to cure my condition.
I am 55 yr old female who also doesn't fit the CSR profile. I was diagnosed about 20 years ago with MD. It progressed into Wet MD. They tried the injections but it did not help. Later I found out that it was CSR type 2. My vision was going quickly. Also due to the high fluid level my left retina tore. I recovered from that after a series of Lazer surgeries. So knowing my treatment for this disease was dim, I began researching supplements and tried Niagen. After using it for a few weeks I returned to my retina doctor and he could not believe that the fluid levels were decreasing in both eyes. It took about six weeks for the levels to dry up completely. To this day after (7 months) no fluid. I am still on two Niagen tablets each day. I am also researching CBD oil to see if it can help with brightening up my vision. All the best.
Hi all! I am a 55 year old female with CSR in one eye, smack in the center of my vision, so later treatment is not an option... it is so helpful to find others going through exactly what I am. They doctor first tried Finasteride pills (which made me so brain-dead, a known side effect, that I had to stop after a month), Then they tried a diuretic pill, which didn't seem to work. He then did one micro-pulse laser, which seemed to reduce fluid a bit but made my vision muddier ultimately. I seem to be a "worst case scenario" so far.
For that reason, I'm reticent to try the the injections, which he says are next in line. My concern is the real risk of infection from them, which he says could cause permanent damage if that happens. Ugh.
I am going to give CBD oil a try. For anyone who has done it, can you share the dosage, and any results either way?
Also just learning about eplerenone from this thread. Again, are there any success stories?
I am a photographer by trade, so this is a terrible thing to deal with. Glad to have a discussion venue.
Sorry that you seem to be a 'worst case' scenario and it must be really stressful.
It sounds like you might not be in the UK from the treatments you've been receiving but laser treatment doesn't seem to be the preferred option in the UK, nor injections. I don't think eplerenone has received official NHS acceptance as the drug trial is still on going but it does seem to be prescribed regularly for CCSR.
My personal experience of eplerenone has been very positive in that the 'leak' in my left eye stopped and the fluid drained and although I'm left with a scar it hasn't got any worse. In my right eye, because the leak hadn't been going on for so long, the leak stopped and fluid drained. I currently have a more persistent leak in my right eye with fluid settling to cause a hole in my vision but at my last clinic visit, this seems to be improving.
Although CSR is an on going thing for me I am certain that eplerenone has had a positive result and has lessened the impact on my vision.I
I have been reading the thread of posts with interest as I too have been diganosed with chronic CSR. Or possibly Adult-onset Vitelliform Macular Dystrophy (AVMD).
It has taken three years and a number of consulations at 3-4 months intervals to get here and I'm still none the wiser as to what is being advised. It may be because no treatment is actually available under the NHS. Next visit is in June.
Meanwhile my world is becoming increasingly blurred...
Thanks, Rosalyn. All I do is bring up my concerns: I'm not the silent type...
So far the outcome has been to refer to me to another ophthalmologist and then another one after that...next appointment is at Kingston Eye Hospital in late June.
I am 40 now and I was first diagnosed with CSR about 4 years ago. At first I felt crazy because every eye doctor I went to said they couldn’t see anything until finally I got a diagnosis. I had it in my left eye for about 6 months, then another showed up in my right eye. They weren’t in the center of my vision, so while annoying it was livable. I had the condition for about a year and a half without any improvement until my sister gave me a bottle of 1500mg CBD oil, zero THC not full spectrum. I took 20 drops twice a day under my tongue and within 2 weeks both eyes had gone back to normal. I had a recurrence about 6 months later and did the same thing. I had no issues for about two years, then it started coming back in my left eye. I found a different place that sold CBD as 25mg pills. I took 2 in the morning and 2 in the evening. After two days the CSR was gone again. I don’t know if this will work for everyone, but for me it was life changing and when I went back to the eye doctor after that first time he couldn’t believe that it had completely disappeared after being persistent and progressively worse for so long.
I have exactly this issue and it got worse following a laser barrier for a smaller area of detachment. I was put on spiralactone 50mg/daily; it worked a bit but then no luck.
I went to see local clinic running trials on cbd oil and will be trying your recommended working strategy.
I see the retina surgeon in a few weeks. hopefully i get some help with the CBD oil yellow (minus THC) 40ml (20mg/ml). Will switch to capsules as you suggested as well.
Hi Daniel - Thanks for sharing. I am a 35 YO male, type A personality, high stress sales work environment, so you typical case for CSR. I have been dealing with CSR for about 10 years only in my right eye, but just to find out it is spreading to my left eye. I have received a laser treatment in my right eye about 5 years ago, which was successful, but only for about 3 years before my eye started leaking again. Within the past year I have received numerous injections of Elyea and Avastin with only temporary relief/success. At this point, I am concerned about the aggressiveness and progressiveness of the disease in my eyes. I am curious if the CBD pills and/or oils are still working for you? Was there anything else you did to help stop the leaking? Do you think there was something that triggered your symptoms initially? I am willing to try just about anything at this point, so I'm exploring all avenues. Thanks again.
Yes...i am a bit lucky...my problems started at age 66 in one eye and luckily i have not had the problem in my other eye...it really doesnt affect me day to day...except i was a very competitive tennis player which is my true love...That i had to stop because i couldnt pick up the ball like i used to with the one good eye...
After 6 months of having been diagnosed with csr and no improvemnts occurring with the fluid under my retina/macula....i got an injection of eylea which immediately removed the fluid ...However the problem has persisted in last 4 years.....and all of the doctors i have seen have told me that the photo receptors were damaged during those 6 months of waiting
I should have used eylea immediately... Have not heard of any cures for my problem..
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