Chronic central serous retinopathy

[Spa279]

Hi all. I know this has been discussed but I have Chronic central serous retinopathy in both eyes and have for the past 7 years. The fluid has not stopped leaving and returning and I have black spots all over in my vision. I was forced to retire early from a federal law enforcement job and am kind of losing my mind over all of this. I have had laser treatments that did not help but did cause scaring. I have had emplerenone prescribed for several months with no relief. I have had injections in my eyes that actually may have helped stop the return of fluid but my vision is very wavy and distorted. Has any found any fix for the damage this disease causes? I am currently applying for social security at the age of 47 because I can’t look at computers for very long, I have a hard time focusing on anything, I get headaches and am just all around frustrated. Can anyone tell me if they are having any of the same issues I am? Thank you.

[Jogie]

Hi Spa279

I'm so sorry to hear your story. I am going through something similar, but only for the last five years. I'm 48. I had a great career as a senior manager in education which I had worked my way up to achieve over a period of twenty years. I had to give up my job because of the CSR. Fortunately, I can still use a computer if it has an extra large screen.

I have adapted my life around the CSR. I have moved house from a small village with few amenities in to a house two miles from a city centre in a different county and with lots of local amenities. This means I can walk to the places I need to go to and I am closer to my family.

I do online maths tuition now and my extra large screen makes this possible. I can't tutor in person as I can't see text books etc. My salary is now around 15% of what it used to be so no more holidays etc. Fortunately, or unfortunately, I don't drive anymore so I don't need a big salary to pay for an expensive car!

On the plus side, I am now my own boss, I get more exercise and I get to spend more time with my daughter and my extended family. My dog is also very happy that I'm at home all the time too! I managed to pay off my mortgage early so I don't have that pressure any more.

I get very frustrated by the things I can't do but my way of coping is by trying to appreciate the thing I now can do which I could not do previously eg go for a walk with my daughter and dog in a sunny day or go for a swim during the day when it's lovely and quiet.

I am also a little bitter that my first consultant offered no treatment so I have permanent scarring in both eyes and I haven't quite learned how to manage this bitterness yet.

I've recently started on Epleronone and I think it is slowly reducing my fluid. My new consultant is also applying for funding for me for PDT.

Hope you can find a way through your frustration Spa; good luck for the future.

[Spa279 in reply to Jogie]

Thank you so very much for your kind words and inspiration. It is great knowing that others are experiencing what I am. I truly did not know this was as common as it is. I also didn’t think anyone could understand what I see. I felt like I was being a baby about it all. I get frustrated but do love what life I have. I am still much more fortunate than many and I never forget that. Thank you again.

[alalex101]

I am so sorry to hear about your vision problems. You truly must be grieving as life has not turned out as you expected. Try to find ways that you can mentor or help others. This will help you still find meaning in life. I have had chronic CSR for several years in one eye. I have myopic degeneration in both. I continue to work but have considered applying for SS disability. I assume you are in the US like me. Please let me know if you get approval for Disability. My brother got disability due to his poor vision. There are many of us losing our sight. We must support each other.

[Spa279 in reply to alalex101]

Thank you! It’s been a long disheartening road but I do still make the best of what I am thankful to still have. I was granted disability retirement from the government. Unfortunately it was just one year before my scheduled retirement. I worked law enforcement for 27 years but could no longer see the front sight of my gun. By leaving the year early I lost over $1000 a month in my retirement. I have a hearing with Social Security in August. If you apply make sure you get an attorney. It will make the process much easier. I will let you know how it all goes. I have a very supportive doctor that has written several letters in favor of considering CSR a disability. Thank you again.

[Spa279 in reply to alalex101]

Hi Alalex101. I was approved two days ago for disability through the Social Security Administration. I did not have to go to a hearing and they made a decision just based off from my medical reports and a very well written letter from my doctor. This will at least help my family financially since I can’t work full time anymore. I hope this helps.

[Rosalyn-helpline Partner]

Dear Spa279,

I am sending our links to information on CSR:

macularsociety.org/central-...

Could issues with glare perhaps be contributing to the headaches?

Individuals with a macular related condition tend to develop a heightened sensitivity to glare. The glare is produced by the blue light in the spectrum. Ordinary sunglasses protect against the UV but not the blue light. Therefore, individuals can find that they can end up trying to eradicate the discomfort from the glare by wearing ordinary sunglasses which are too dark for the lighting conditions, thereby obscuring their vision. The way to potentially address this is to choose spectacles from the anti-glare protection range, as they both protect against the blue light in the spectrum and the UV, and come in a range of shades. Therefore, an individual can either choose to purchase one shade or various for different lighting conditions.

Anti-glare protection comes in a variety of styles of frames; however, fit-overs are handy when an individual already wears spectacles.

In terms of colour choice, as an indication, e.g. yellow anti-glare fit-overs are generally good for indoor use as they do not reduce the amount of light coming in; reduce glare, increase contrast and definition. They are also suitable for outdoor use on a dull day when glare may still be an issue, but there is not adequate natural light to wear a darker shade. On a brighter day out an orange pair of fit-overs may be advisable, followed by an amber pair on a very bright day out.

Please contact us if you would like suppliers details, though they are all UK based.

Just to make you aware, 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. I am copying a link to our booklet Emotional impact which references our telephone counselling service:

macularsociety.org/sites/de...

The Macular Society Advice and Information service is open 9am – 5pm Monday to Friday on 0044 1264 350559.

Alternately, you can contact us via:

[e-mail]

Kind regards,

[Spa279 in reply to Rosalyn-helpline]

Thank you!! I would definitely like to try the blue light protection. It could be glare. I have tremendous eye fatigue and when there are pockets of fluid in the central part of my vision I dulled/browned vision. The waviness also seems to add to the issues. Thank you again.

[Rosalyn-helpline Partner in reply to Spa279]

You are very welcome. Contact us with your details and we can send out a list of suppliers to you.

Kind regards,

Macular Society Advice and Information Service

[CSRScotland]

Hi SpaI am quite new to the forum and have just read your post and responses. I'd be really keen to hear how you are doing now.

Take care

K

[JGer123]

Hey Spa - Also new to the forum. Thanks for sharing your story. I'm 35 and have been dealing with CSR for quite some time, probably 10 years or so. I have had laser treatments and more recently injections primarily in my right eye, but now I am being told it is spreading to my left eye. Have you received any sort of treatment that has worked for you more recently? I am concerned about the progressiveness of this disease in my eyes. Hope you're doing well.

[tech1950]

Hello Spa279,I just activated my account with this blog and found your story. I too suffer with this nefarious disease (CSR) in my left eye only. I was initially diagnosed at 35 and was informed that it was a transient condition most often found is males in high stress jobs, and/or using steroids. Since I wasn't on the latter, I assumed my work in the medical field was the culprit. After a couple of months, the fluid dissipated and normal sight returned. This experience occurred, off and on, over several years. More frustrating than debilitating, and without any known treatments, I chalked it up to my personal cross to bear. I lived almost 15 years without the condition returning until I reached 62 years of age and the condition returned.

After several visits to my routine ophthalmologist over a couple of years without resolution, he determined the condition to be chronic and referred me to a retina specialist in the same community. Following multiple eye exams and studies, the retina physician concluded the condition unresolvable (no known treatments). He offered me a option to go to a university facility to have treatment with a "cold" laser but studies had shown no measurable success and the risk of macular scarring was significant. So, over the last five year or so, I've adjusted to the condition and difficult sight in my left eye. Fortunately, my right eye, although myopic, is vision corrected to 20/20 and that eye does all the work...reading, driving, watching TV, etc. I had bilateral cataract surgery last summer with a good outcome. Recently, I've noticed my left eye focus deteriorating further. My present ophthalmologist (another state and city) is also concerned that the patch of fluid is migrating towards the foci of the eye. He referred me to another retina specialist (Harvard and Duke University trained) who, after scans and angiogram, concluded that both CSR and wet degenerative muscularization may be present.

Again, no real definitive treatment. He did offer eye injections but in the same breath was not confident that the medication could deal with the long time chronic pool of fluid from the CSR. That said, I am grateful that only one eye is affected thus far. I am 70 now and realize that this and other "conditions" are in my future as I am also a diabetic with hypertension. I am a firm believer in planning for the worst and hoping for the best. I suspect my wife and I will require home health services down the road. Right now, I am grateful to have partial sight. I will pray for your better health and hope you find answers to these challenging conditions.