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Visudyne therapy for CSR (Page 1)

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Has anyone had Visudyne/PDT therapy to treat central serous retinopathy (CSR)? I am a 30something male that has had CSR for over 8 months. I'm scheduled to have PDT therpay (laser treatment) in a few weeks and am worried. Will it work? Any others out there that can clue me in?
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First Helper pdxtom
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replied December 6th, 2009
Update on my treatment
Update. I had my first treatment. It went well, but I still have CSR. The treatment is supposed to seal the leaking blood vessels and the body should absord the fluid over time. Let's hope so... more to come.
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replied April 9th, 2012
alternative to PDT For CSR
Hi PDT can work for CSR however I would ask your retina specialist to look up the most recent abstracts from ASRS last year in Boston. There was some interesting data regarding low dose methotrexate and temporary use of rifampin to help get resolution for CSR present for > than 3months. If I were a patient I would try the rifampin myself. Depending on how the PDT is given to you full fluence reduced fluence etc there maybe collateral damage in your macula that could be avoided by an oral medication. Good luck!
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replied December 9th, 2009
Community Volunteer
It is important for you in your recovery not to stress out...Stay calm and don't worry about it...By doing this you help yourself...Take care...

Caroline
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replied December 20th, 2009
Update two weeks after treatment: My vision is somewhat improved. I no longer have the distortion when watching television or looking at people with my bad eye, however my vision is still blurry and I'm not sure if it can be fixed with glasses. At least it has improved and not gotten worse since PDT/Visudyne treatment...more to come.
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replied January 3rd, 2010
Update - 1 month after Visudyne treatment, and all of the fluid that caused the CSR is gone from my retina. The doctor said my retina appears normal after the eye test (red light machine thingy) and he's suprised and very pleased with the outcome. My vision is still blurry in my eye, and hopefully it will improve, but at least the distortion is gone and my sight is not worse. Well worth it, especially since my insurance co covered the cost.
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replied February 18th, 2010
CSR after PDT treatment
Despite the improvement on the images, you may still experience blurred and/or trouble with contrast despite 20/20 Vision due to the permanent changes that have occurred at the pigment and neurosensory level of the macula from the chronicity of the disease. Also, we know from patients who have had retinal detachments involving the macula, that it can take up to 3 years for totally recovery. Dr. LMA Retina specialist NY/NJ
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replied March 16th, 2010
CSR
Hi I had the laser treatment back in November, I have had CSR in my right eye for over 3 years.
Sadly it did not work in my case, I am now wating to see if the NHS hospital application for goverment grant for low level laser - I guess it wait and see.
Kind Regards
Neil
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replied May 26th, 2010
Haywarduk

Not all laser treatments for CSR are the same. Argon laser can work well for non focal CSR, but is contrindicated for central foveal leaks due to the risk of damage from treatment. PDT- visudyne laser is a 'cold' laser that involoves a photo reactive dye used to treat the leak and is safer for these foveal leaks. Most insuance companies DO NO PAY for PDT and it may need to be repeated. It is important to avoid caffeine, stimulants, steroids, several nasal sprays, cocaine, sleep properly and balance stress to avoid reoccurence. However despite doing all this some individuals may have a genetic predisposition that is hard to overcome. Talk to your retinal specialist and good luck.
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replied December 16th, 2010
I have been recently dsgnosed / no improvement
Hello. I was diagnosed with CSR. I am in good hands. My retna specialist is part of Wilmer Eye Institute (John Hopkins Hospital in Md)... they tell me there is nothing to do but wait. I had vision distortion for a while... maybe for 5 months before I got the central blind spot i have now. The lick has apperantly closed but I still have the blind spot in the center of my vision (right eye)... i am nervous because my specialsits say there is nothing to do but wait... i am scared and concerned... i feel i am in great hands but i am worried when they say there is nothing to do but wait...
can i just wait or should i run and find myself a doctor who wants to experiment with several treatments?
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replied December 17th, 2010
rocioarr-

If the leak and fluid are gone there is unfortunately little you can do to improve the vision. When fluid is left under the retina for extended periods of time, blind spots like the one you developed are not uncommon. All you can do is wait to see if the retinal function will rebound on its own. The retina is a nerve tissue and as such we do not yet have the technology to regenerate it once damaged. There are ongoing experiments using stem cells to regenerate damaged retina cells, but this science is still in its early stages of development. I have heard of some successful gains in vision from these treatments, but the gains were from about 2/200 to 20/400. No where near the standard 20/20. It is best not to stress as stress may cause reoccurrence. Best of luck.
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replied December 17th, 2010
Rvabrad
Thank you very much for your your response... yes... when i went to see the retna spacialsit at Wilmer Eye Institute (john Hopkings Hopsital in Md) he told me he had good news and bad. Good news; fluid is gone and has been reabsorbed. bad. there is permanent damage. he said the vision should imporove... because it is a big blind cercle in the center of the vision... i asked what he meant by "imporve" and he said all we can do is wait... what is "imporve"... i dont understand the numbers... i have a blind spot in the center and i see as if through a very dense gray cloth... sometimes, depending on the lighting, i can see somethings through... bit not in the center... pelase... let me know what is "imporving"... seeing better? i have tried not to stress about it and i am being bery good at it... but with this weather i have had colds and sinus and i feel my bocdy thinks i am stressed.... thanks for any advise...
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replied December 17th, 2010
reply to rvabrad
Rvabrad
Thank you very much for your your response... yes... when i went to see the retna spacialsit at Wilmer Eye Institute (john Hopkings Hopsital in Md) he told me he had good news and bad. Good news; fluid is gone and has been reabsorbed. bad. there is permanent damage. he said the vision should imporove... because it is a big blind cercle in the center of the vision... i asked what he meant by "imporve" and he said all we can do is wait... what is "imporve"... i dont understand the numbers... i have a blind spot in the center and i see as if through a very dense gray cloth... sometimes, depending on the lighting, i can see somethings through... bit not in the center... pelase... let me know what is "imporving"... seeing better? i have tried not to stress about it and i am being bery good at it... but with this weather i have had colds and sinus and i feel my bocdy thinks i am stressed.... thanks for any advise...
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replied December 17th, 2010
Improve is a very general term. With large amounts of fluid between the retina and choroid (blood vessel layer) the seperation that occurs is similar to a retinal detachment. Improvement would be slow over the total course of 6 months to a year. The improvement is typically limited, and the spot may lighten up to be less noticeable, but will not likely go away. Good lighting will be key when using the affected eye for reading. Stay optimistic, hopefully in the years to follow newer treatments aimed at regenerating the retina will be available. However this looks to be 10+ years out at this time. If you asked me for an actual number as far as how much improvement you will get It is really tough to say having never seen your file, but i would in general guess that patients similar to you may gain an additional 15-20% or so. Some more some less. It is incredibly variable.
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replied December 17th, 2010
reply
I want to be the one who beats the odds and regains it all! At least I hope. Couple of weeks ago I started taking anti-oxidant vitamins and others recomended for the retna... just the regular dosage. I hope, like i said, to be the one posting a year from now: I recovered!
thank you very much for your advise.
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replied January 4th, 2011
Hello. I was diagnosed CSR on my right eye 2 months ago. My Retina Specialist said the best option was to wait. Since then my conditions get worse and I went back to see him and he confirmed the leakage was still there. He then suggested PDT and said it was a safe procedure. I took his advice and did it 2 days ago. Although he said it would take 3 or 4 weeks to recover, my night vision actually got better only after this short period of time (may be only psychologically). I will just have to wait and see for another month. Wish me luck!
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replied February 12th, 2011
Quick update. A month after PDT, my vision got much better. I could tell the leakage has stopped even without having done a check up. Much less distortion and night vision is much better. Glad I took my Specialist advice, will go and see him in 2 weeks time.
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replied May 2nd, 2011
My experience and frustration
I have had CSR for several years now - or at least recurrances and loss of vision. At this point, since there is no active leakage, I am living with the damage from previous leakage and/or laser surgery performed with the first episode. I didn't realize how bad it had gotten until my annual exam last year - when I could not read the right side of the chart with my right eye. Literally, all I could see was the first column on the left side of the chart. Nurse freaked out more than I did - as has each one since. Been to two retina specialists, and they both say what vision is gone is gone, all we can hope for is that I don't lose anymore. The second said that if he had not seen info from first dr, he would have initially thought macular degeneration, but with all the tests - CSR is it. I am learning to live with it, but there are days when it affects me more than others.
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replied May 3rd, 2011
To all who are dealing with CSR, you have my sympathy and support.

I first had an episode in my right eye, then left eye too, in my mid 50's. The right retina was heavily damaged, and never seemed to improve - but it did stabilize. Most of the damage to the left retina resolved itself over time.

Then in Dec 2009 I noticed a dramatic difference in the right retina again, and was referred to Casey Eye Institute in Portland, OR. I got my first PDT in March. 2010 and it lasted for several weeks.

Long story short, over the past year I've received six PDT's and each one seems to last less time. Some have involved both eyes, some only one eye.

Just two weeks after a PDT I received in Jan. 2011, I observed active leaks in both eyes. I was told that there needs to be a minimum of 2 months between PDT's, so we did both eyes again in late March 2011. That was a rough wait, as you know the changes can be pretty dramatic and it's like getting a new vision Rx every day. This time, I made it a whopping three weeks before I observed new leaks in both eyes.

I see my specialist again this week, and expect to receive another PDT in both eyes at the 2 month mark. I am not optimistic about my chances of resolving this problem, but I'm glad that I seem to be more the exception than the rule.

There are SO many emotions that come into play, the fear, the frustration, then hope, then some improvement, then more fear and frustration...with lots of anxiety in between.

At least I've gotten pretty good at mapping and detecting changes and fresh leaks. After my OCT tests, my doctor says "as usual, your diagnosis is correct."

As you all know, part of the baggage that goes with this is that no one can tell we have problems, and no one can really relate to what we go through day to day.

At this point in my saga, I'm not the least bit optimistic about resolution of CSR, and am legally blind in one eye with a tolerable amount of distortion in the left eye. If it would just stay the same, I might be able to adapt again - it's the variation that drives me buggy!

I also highly encourage anyone who is afflicted with CSR to pursue getting FMLA protection for your condition. Even the best employers in the world can get funky with a lot of medical absence, getting a Family and Medical Leave Act condition approved may help you keep your career.
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replied October 21st, 2011
CSR & Rifampin
I also was diagnosed with CSR back around 1992 when I first noticed some bright flashes in one eye. Diagnosed because my brother in law works for an opthamologist in Santa Barbara and he referred me to the Retinologist next door. Back then there was no PDT treatment and I lived in Portland so they sent me to Casey Eye Institute as well. "Wait and see what happens" is all they could tell me back then and of course many years later it came back and damaged the central vision in my right eye. I'm back in SB and have now done many PDT treatments in both eyes, the Dr. is trying to save my only "good" eye. But I reinjured my lower back recently (2 weeks ago) and the Dr. thinks that set off the condition again in my left eye. He's got me taking Bromday eyedrops which is like advil for the eyes and he just put me on Rifampin which is a drug used for many decades to treat TB. I've been looking at the posts online about others taking Rifampin to see if its working, how long it works for if it is working and trying to get an idea whether I'll have to take this stuff forever if it does work in an attempt to save my only good eye so I can still read and drive. I saw your post and you say you've had this since your mid 50s? Wondering how old you are now??? I know they say the disease it most prevalent in males 35-50 yrs old or something like that, yet my regular MD has the condition and my Retinologist tells me he has an 80 something year old with active CSR so I'm starting to think it may be a long haul for me and that it may never go away. They say "stress" is likely the cause and that lots of pilots get it, also test rats given large doses of adrenelin. Thinking back on my particular case, I've dealt with some pretty serious back issues and so I'm thinking that I may have been stressing my body while thinking I'm not really stressed but it could be that this was the cause of it to begin with. Very hard to say. Now I have kids and an extreemly stressful business so having the condition act up does not surprise me. This latest episode in the left "good" eye changed my vision so quickly that I really noticed it compared to other occurences in past years. I like beer but can't drink any while taking Rifampin because it can damage the liver. So, the good news is if I don't care about seeing I can drink all the beer I want, and if I don't care about having a functioning liver I can drink all I want, well till my liver can't take it anymore (Rifampin or no Rifampin). I try to keep from stressing about it too much because worrying never helps anything so I first did what they told me and "waited to see" what would happen and didn't worry. That took the central vision out in my right eye. Now they have this PDT cold laser treatment which it sounds as though you know very well, but it is more geared toward sealing the damaged vessels temporarily for many patients rather than a cure. If the Rifampin works I'll be stoked and gladly keep taking it and never drink anymore alcohol if it means saving my eyesight, but the jury is still out on this drug so I will see (or not so well) My brother in law just tells me I need to go live on a deserted island somewhere tropical and forget about the stresses in life and I'll be cured! But then my wife will get stressed and she'll get CSR and my kids won't have a father around to raise them and the teak furniture warehouse I run will shut down which means the factory in Indonesia will have to close and all these people will be out of work while I'm worry free on some beautuful island with really good eyesight in one eye! I figure I've noticed this condition for 20 years and I'm finally starting to get better at diagnosing it now but probably only because of the recent episodes. Your post is nery interesting because I can tell you are way more familiar with the disease than many of the people posting who are still trying to figure out what the heck is going on and whether they need to worry or not. Lastly, as a typical male, I tend to ignore medical issues and wait for them to go away, so I waited for years before finally deciding I would go get prescription glasses. It was then that I got the stunning diagnosis that the CSR had at some point permanently damaged my right eye and that no corrective lenses could correct that. Good luck Pdxtom, I love Portland and have many good friends there so I hope to be able to see your fine city in my "old age"
Rgrds,-gad
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replied May 3rd, 2011
To all who are dealing with CSR, you have my sympathy and support.

I first had an episode in my right eye, then left eye too, in my mid 50's. The right retina was heavily damaged, and never seemed to improve - but it did stabilize. Most of the damage to the left retina resolved itself over time.

Then in Dec 2009 I noticed a dramatic difference in the right retina again, and was referred to Casey Eye Institute in Portland, OR. I got my first PDT in March. 2010 and it lasted for several weeks.

Long story short, over the past year I've received six PDT's and each one seems to last less time. Some have involved both eyes, some only one eye.

Just two weeks after a PDT I received in Jan. 2011, I observed active leaks in both eyes. I was told that there needs to be a minimum of 2 months between PDT's, so we did both eyes again in late March 2011. That was a rough wait, as you know the changes can be pretty dramatic and it's like getting a new vision Rx every day. This time, I made it a whopping three weeks before I observed new leaks in both eyes.

I see my specialist again this week, and expect to receive another PDT in both eyes at the 2 month mark. I am not optimistic about my chances of resolving this problem, but I'm glad that I seem to be more the exception than the rule.

There are SO many emotions that come into play, the fear, the frustration, then hope, then some improvement, then more fear and frustration...with lots of anxiety in between.

At least I've gotten pretty good at mapping and detecting changes and fresh leaks. After my OCT tests, my doctor says "as usual, your diagnosis is correct."

As you all know, part of the baggage that goes with this is that no one can tell we have problems, and no one can really relate to what we go through day to day.

At this point in my saga, I'm not the least bit optimistic about resolution of CSR, and am legally blind in one eye with a tolerable amount of distortion in the left eye. If it would just stay the same, I might be able to adapt again - it's the variation that drives me buggy!

I also highly encourage anyone who is afflicted with CSR to pursue getting FMLA protection for your condition. Even the best employers in the world can get funky with a lot of medical absence, getting a Family and Medical Leave Act condition approved may help you keep your career.
|
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replied May 11th, 2011
macular CSR in left eye
I've been dealing with CSR's that have not been in my direct vision since 2007. I now have one in my left eye that's in the center of my vision. This sprang up the beginning of April. I went to the eye Dr the end of April to confirm it was a CSR and have another appt on June 10th to see if it has closed up by then. If not, then we may go the laser treatment option.

I can really sympathize with ones who cannot stand the difference in vision from one eye with the other. It drives me crazy. It's quite shaded in the CSR area with distortion. I was wondering if computer screens, or laborious work would attribute to them getting worse? Should I be resting my eyes? Even wearing an eye patch?

All my other CSR's all seemed to heal on their own. But it's hard to say how much since they are not in my direct vision like this one.

Thanks,
Erich
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