Eyes

[180164]

Hi. In April 2008 i had an extensive retinal haemorrhage In right eye which has left scarring. I was diagnosed with chronic central serous retinopathy in left eye and was given funding for photodynamic therapy. Unfortunately few years later I was told I had wet macular degeneration. I had to leave my job and daily life is a struggle. Anyone else out there like me ?

[andy1955 Macular Society]

Hi Eyes,

I am so sorry to hear about your macular problems.

Could I ask how old you are?

We do have some support groups for younger working age people ('W@M' groups we call them).

We also have a factsheet aimed at people of working age which you may find helpful.

If you would like to locate your nearest W@M group and get a copy of our factsheet, please call our helpline 0300 30 30 111 (9.00am to 5.00pm Monday to Friday).

Best wishes

Helpline

Macular Society

[180164 in reply to andy1955]

Hi. I'm 51 now. Problem s started 8 years ago. Thanks for advice

[AMDleft]

Hi there. I was the opposite to you I was told I had Wet AMD in 2013 but then further ICG dye test showed in 2014 showed I had Chronic Central Serous Retinopathy (CSR). I was having Avastin injections when they thought i had wet AMD but then had photodynamic laser treatment. So far this has been effective but a new bleed in Feb this year was treated with focal laser treatment but has only been 90% effective - back for another review in few weeks. I have not met anyone else with Chronic CSR and am aware that not too many females (like me get it)

Are you aware of any research been taken for Chronic CSR?

[180164 in reply to AMDleft]

hi. do you have problems in both eyes and how old are you. im 51 now and no longer work due to my eye cinditions. i was told chronic csr is uncommon in womenand can be related to a stressful lifestyle. ive had 7 photodynamic treatments, i was told lucentis wouldnt work for me.

mandy

[AMDleft in reply to 180164]

hi Mandy

No I only have it in my left eye. Hopefully it will stay that way. That is alot of PDT treatment. Are you advised not to go outside during daylight for few days after the treatment? i may have to have a second treatment if my bleed form Feb is not improving? Did you have problems with your eyes before 2008? I am lucky not to have any other eye problems.

Do you know anyone else with Chronic CSR? I have not met anyone yet and I am not aware of any research - would be interested to know if you are aware of any research taking place. Maybe Chronic CSR is so rare that there is not enough patients to do research with. What do you think?

[180164 in reply to AMDleft]

Hi. No direct daylight fir couple od days after treatment. Info on Google bout chronic csr. Not sure I can have more treatments as each one causes scarring. How's the colour in your bad eye mine has almost gone in my left. Are u really shortsighted too?

[AMDleft in reply to 180164]

Hi Mandy

No i am very lucky with good health and i have good vision - it is about -1.5 in both. I only wear glasses driving, TV, cinema etc. This is good to know about the scarring as I am in the early stages of treatment etc. Not sure why I have it as i don't meet the criteria eg Type A personality, use steriods etc. and I am being told - Just one of those things!!! Were you advised on any specific Vitiams for it?

[180164 in reply to AMDleft]

My vision is -10 and -7.5. Not given any advise really. I can't read books etc I've got aids from RNIB but I get headaches soon as I start to concentrate. I've also got a bus pass as I can't drive any more.

[Hidden]

Hi 180164,

So sorry to hear life is such a struggle, just wanted to send you a hug x

I have a different condition to yours so cant help there, but the emotional impact and practical probs are common to us all here. You are not alone, this is a great group for support if you want it . Best wishes x

[180164 in reply to Hidden]

Thank you for that. I often feel people think there is nothing wrong with me snd I'm faking it.

[Rosalyn-helpline Partner in reply to 180164]

Dear 180164,

I am copying a link to our booklet on Emotional impact:

macularsociety.org/sites/de...

The impact of the diagnosis of any eye condition and indeed any stage in the process is generally compared to experiencing bereavement. Individuals frequently go through very similar feelings and responses and in no set order. We do have a free telephone counselling service. Please contact us for further details if this is of interest. We need the individual’s verbal consent in order to be able to refer them. It takes a counsellor a maximum of a week to make the initial call. Our counsellors are fully trained and the majority have sight loss themselves. Sessions consist of approximately 6 of around 45-50 minutes each.

Just to make you aware, we are currently offering free 6 month membership. This is a good way to keep up with current developments. Please ring us if you would like to benefit from this, or join via the following link:

macularsociety.org/6months

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

Alternately, you can contact us via:

[e-mail]

Kind regards,

[willle09]

Hello,

I can relate to you in some ways. I had CSR in right eye which I did not look after. A year later, I had it in my left eye but I treated it and it went away. I then found out I had scarring in the right eye which is why it never recovered, so now only one good eye. I can't read out of right eye.

It didn’t bother me at the time but 2 years later, I started getting double vison and words on PC were going in out of focus and then back to focus. A few months later, double vision and now constant soreness / discomfort.

I’ve seen many optometrists and ophthalmologists about this, but no one has an answer. They reckon one issue is due to dry eyes. The best I got was from two optometrists which I see monthly at the same place. One said it’s a phenomenon that when the eye cannot see clearly, it can result in discomfort. The other said the double vision is due to the poor vision in the centre, and your eye now twitches off centre to accommodate it which is why you get this double vision.

I just wish I had these symptoms weeks after the CSR which I would of them went back to treat. Why 2 years later do this symptoms happen?

I now wear glasses sometimes in front of computer and phone. The lens in the right eye has a prism in it.

The gritty discomfort is the worst; most days I have it every hr of the day. Good or bad sleep, it doesn’t help. Anyone else have this pain?

I was at one stage where I wanted to quit work. A fortnight of squinting and eye drops every 30 mins.

Where are you based? I am in Australia.

[180164 in reply to willle09]

HI I'm in the UK. I'm now registered partially sighted and no longer drive. Have u had treatment I got funded for pdt and visudyne therapy in 2008. Regards Mandy

[willle09 in reply to 180164]

I don't think I want to be registered as partially sighted. I need to be able to drive. There is no treatment for my condition. I see an optometrist once a month. We try different tests, but I mainly go there to vent and voice my thoughts.

[Rosalyn-helpline Partner in reply to willle09]

Dear willie09,

Please contact us direct on the Macular Society helpline for our information on dry eyes as opposed to dry AMD.

The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

[e-mail]

Kind regards,

[Hidden in reply to willle09]

Hi Willie09, if you have dry eyes you ought to be using soothing drops daily. I have mine on prescription ( in UK). I find Hylotear v good and the bottle lasts 6 months after opening.

Dont wait for eye to hurt, use them regularly 4 times a day, protect eye from wind and if eye tears up that means it's dry and trying to lubricate itself so use them then too.

Hope this helps.

[willle09 in reply to Hidden]

Hi, I have tried many drops. I just use preservative free lub drops a few times a day. Sometimes as much as every hr.

[Hidden in reply to willle09]

The Hylotear are thicker than others I tried and seem to coat the eye better - Dr gave me them as others didn't work for me for more than an hour or so, especially outside in wind etc.

Do you have inj? It might be sensitivity to iodine. Ask to change to chlorhexidine.

Hope you get relief somehow.