I got to see my retina specialist once again. To check on my current CSR bleed. They did the whole bit, they ran color through my eyes and took a ton of pictures I felt like ET with the amount of bright lights in my eyeballs!
But it was well worth it, he was able to see that in my other eye there had been minor bleeds and also to see that my macula In both eyes was in great shape I see 2020 with zero issues(minus some of the dimness during an episode) knock on wood.
I had a few on here who had talked to me about a micro pulse laser(thank you for that information) which there is a lot of good news coming out about it as far as being able to use it multiple times without causing retinal damage. But he also stressed that PDT is the gold standard for helping to reduce reoccurrence of CSR. I’m curious if anybody on here has had either one and what has been your results? my retina specialist had said some people have had PDT treatment and hadn’t had a reoccurrence for up to 5 to 10 years! . After they saw the inside of my eyeballs he decided to wait considering that it looked like it was receding but agreed that he’d be willing to try the micro pulse laser After we wait about 6 to 8 weeks.
HORSE CHESTNUT UPDATE
I saw no real change as I have been using horse chestnut for a few weeks.. I’m sure it takes a lot longer but I haven’t had any adverse side effects thus far, I mix it in with my shake in the morning…
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T109
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Hi T109, I have had CSR for many years and have had PDT 3 times. The first time was very successful and gave me 10 years respite. The second only gave me 18 months and the third(12 months ago) didn't work at all ( I had to pay privately for that one too due to the weird ways of the NHS!).
12 months later my NHS consultant said we must do something (I had already lost central vision in one eye due to macular scarring from undiagnosed CSR some 50 years ago) so saving my right eye vision was essential, although my options for success were limited.
He said, 'we will try micro pulse laser (for the reasons you quoted) and may be some injections.' As he had also discovered that I was at some risk for glaucoma due to shallow anterior chambers, he said we will do an iriditomy first which lasers an additional hole in the eyes to relieve any pressure build up. So, we will do that and then start on some Eylea injections and maybe mp laser after.
He stressed that Eylea was not a known remedy for CSR, more for Mac Deg but ''worth a try".
Not expecting much I had my first injection and 2 weeks later I found my vision seemed worse. But investigation with my best mate (an optician too !) told me that the stronger lenses he had prescribed to help me , were no longer helping because the fluid had receded and the retina had gone completely flat again. ! 2 more injections and I am now seeing fine, with glasses that have a prescription from over 2 years ago. My consultant was ecstatic and quite amazed at the result.
My private consultant for the failed PDT told me that PDT does have a history of diminishing returns on successive treatments but is regarded as the gold standard for early intervention. In my case the micro pulse option wasn't tried because the Eylea worked miraculously for me, but mp might be worth a try before PDT because of the lower risks attached .
Hope this helps, feel free to ask.....I have become very familiar with CSR and treatments over 25 years!
I had a LPI laser peripheral iridotomy done in 2016 and it was fine still patent( open) though I still need to take eye drops. The laser is put high up in your iris so you don’t get double vision from it. Glad your Eylea worked I have been having injections since 2011 every month got a diabetic eye condition. I still have massive swelling. I think if we had tried Eylea straight away it may have been a different story but it was not available for use until 2016. I lost the central use of my left eye so they only inject the right. Wish you well.
really appreciate your reply, I’m leaning towards the micro pulse laser he said that the leak isn’t near my macula so I’m a good patient for PDT and to be honest with you if I got 10 years of relief I would be OK with that !! thank you so much for your reply!!! I will have some questions I am definitely sure of that😊
Hi, it stands for Photodynamic Therapy. Which is when you are injected with a special drug (Vertaporfin) and have a laser shone into the eye. the drug reacts to the laser light and hopefully helps to seal where the fluid is seeping under the retina. regards Martin
Hi again, bit more time now! Sorry you have been diagnosed with CSR, if I can offer any more information or support please let me know. If you look at my previous replies, there is 'stuff' you might find useful. regards Martin
Great to hear your bleed maybe receding and you're getting regular consultation with your eye doctor, it's a little different in my part of the world I was supposed to have been seen last September but they're so far behind because of covid I don't know when I'll get an appointment though when I do ill enquire about the PDT as it sounds very promising. Glad you mentioned that!
Thanks for the update. I have had both PDT and Micro-Pulse. The PDT laser treatment did work for years, until I relapsed about 6 years after that initial PDT laser. My doc then started on some injections, which did not work. Instead of going back to PDT, I wanted to try MP laser, which we had success with in my right eye, but for whatever reason, it didn't have any effect on my left eye. I haven't had treatment since about October, 2021, but I will be seeing my doc again soon, so I am curious if the fluid is back and he will want to administer treatment of any kind. I will keep you in the loop as to my status.
Thanks for that input!! I’m thinking maybe PDT and then switch to micro pulse but I’m unsure at the moment. we’re waiting to see how it looks in about six weeks. If I had even six years of relief I would be pretty stoked! I had a really good 8 to 9 months of pretty damn near normal vision as far as not necessarily seeing the dimness or that brown Hue!
Hi JGer, i have had Chronic CSR in left eye for 18months. On Spironolactone, which doesn’t seem to do anything. Doc wants me to try Eylea, which I’m cautious of. Plus it doesn’t sound like it ever resolves it completely. PDT is unavailable in Europe now since early 2021. I live in UK and have been told it won’t be available until Dec 2023. I’m eager to try Micro Pulse, but again have heard that this doesn’t always work either. I’m also trying Low-Dose asprin which I believe may be helping. I’m curious about the CBD comment I read on here somewhere. 25mg x 4 per day... anyone else had success with CBD? Also read someone suggesting Niagen supplement. I think Coffee may be an accelerant in this condition. Just to add, my Dad also has this condition... he’s had it for 30 years in both eyes. Still works etc. Which I’m amazed at to be honest. But any tips or things worth trying, I’m all ears. Just don’t know if I should risk Eylea injections...
Hi Blink182 - I never actually tried the CBS, so I cannot comment on it's effectiveness. The MP laser is non-invasive, and has shown positive results for me, so I would recommend that. Otherwise, the injections do work for some people, but they just weren't effective for me. Good luck with your treatment, let us know how you make out, I am always curious to see what is working for other people.
I had the micropulse laser in the end. This was is the best treatment in my opinion. Painless and no scarring. Can repeat treatment as and when necessary. Results appear after a few weeks-month. Definitely noticed a change in myself too. Knowing that there is something that is relatively cheap, painless and can be repeated has improved my mental health about the disease. It really doesn’t help worrying about it.
Hi, great. I had MP in July last year. Dr. Said I may need two treatments. So needed a 3 & 6 month follow up. So in February he said he would do MP again, as he thought that would completely resolve it for me. Since about August last year I have had no central CSR, just a very small area, where the leakage originated. At the moment I have no leakage. The main big CSR I had for 18 months, actually has left no visible evidence that I ever had CSR. I accepted that I would have this large bubble shaped scar forever, even if it was difficult to see. However, after every month from June, it healed to a point that I only see a tiny fuzzy point, about 1 inch from centre (when looking at point on ceiling from bed- This is how I monitored progress/decline since 2020, as the point and distance never changed). They are trialing MP in Cardiff (NHS), so hopefully if I ever need it again, I’ll be able to have it done locally, instead of Poland. For anyone wondering; there is a private MP Dr. in Somerset, named Dr. Gudsoorkar who does MP. I had it in Poland because my partner is from there and it was obviously cheaper. Dr in Poland said he would never use injections for CSR, unless there were some further complications, such as actual bleeds. My consultant in UK wanted me to have injections, but it literally felt like a stab in the dark, in terms of whether it would do anything. I would definitely recommend having it done if you’re being given the runaround or offered treatments that are, in my opinion, useless. (Spironolactone, “wait and see” approach, injections). If you have to go private, it is unfortunate because of cost, but it will hopefully be the best purchase you ever made.
That's great, good for you! Happy to hear that. I have another appointment with my doctor in a few weeks to see progress, but since the most recent micropulse I received my vision has improved, so I am hoping I am on the right side of recovery. Thanks for sharing.
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