CSR returned..: I have been doing really... - Macular Society

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CSR returned..

T109 profile image
T109
11 Replies

I have been doing really well with my CSR to the point where I barely thought about it !

It had been close to 8 months with no reoccurring episodes and And crisp 2020 vision then this morning my wife’s face looks like she came back from the Bahamas in What affected I knew immediately… it started right above my central vision and then it just flopped into a nice perfect circle Right over my central vision. I was beginning to feel pretty confident about my regimen.. I take eye vitamins and I drink saffron tea which I feel like has actually helped my eyes. Considering I would have periodic episodes in my peripheral vision and sometimes above my central vision every three months it seemed.. I’m a little confused by it though because saffron is not a VEGF inhibitor it actually promotes VEGF. I’m not 100% sure on the science behind it but I know that I’m talking to my eye doctor and retina specialist when I have the chance.. i’ve dramatically changed my lifestyle for the better which overall was a good thing anyways I do not drink anymore as I feel like alcohol at least with me raises cortisol levels and I didn’t really need it anymore anyways I started using CBD which I’ve had incredible results with just overall sense of calm and it helps like a son of a gun for sleep. ..

The one thing I haven’t been able to do as much is meditation. I am a pretty high strung person so I’m sure that stress and just my personality may add to this weird and crazy little eye thing. My wife got me a Fitbit and an average day I usually do between 25 and 33,000 steps A lot of it has to do with just being a pacer as a teacher I move around a lot consistently and constantly. The one thing I’m slowly learning is there’s no one in done I’m beginning to feel like there Hass to be a holistic approach you literally have to reinvent how you’re living in order to tackle this maybe not with everybody but I’m learning with myself consistently and routinely taking the eye vitamins consistently and routinely making sure I’m drinking plenty of water and experimenting with some of the suggested options out there like saffron I’ve seen a difference and felt a difference. This current flareup is not as dark or a smudgy as it was in the past I’m finding hope in that. Also the CSR is in my good eye and even with the CSR I still see better than with my other eye focus wise. This will be year three for me I guess on a positive note I can still see pretty damn good. But then again I’m only 41 and it’s the unknown future that I worry about. I’m hoping this clears up quickly on its own and I’m going to dive very deep into working on stress and de-stressing yoga and meditation.. those are two things I have not done enough on.. I’ll check back in if I get good results. This is been a decent site where I can be around like-minded individuals hang in there you’re not alone!

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T109
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11 Replies
springcross profile image
springcross

Hi T109. I'm sorry to hear your CSR has returned, that must be very disappointing for you, although it's good to hear that it's not as bad as it was before and I hope it clears up quickly on its own for you too, good luck. 🤞

Joankelley profile image
Joankelley in reply to springcross

I may be wrong, but unlike WMD, I don’t think there is any treatment that will take away CRS. My left eye CRS condition is permanent…..a big gray blob in the my central vision.

Since 2019, I have been getting Eylea injections for my right eye, which has WMD. In the center of the top topography scan, you can see there has been a closing of the gap, so the injections are working.

Topography
springcross profile image
springcross in reply to Joankelley

Hi Joankelley. I don't know anything about CSR so couldn't say if there is any treatment.

It's great news about your eye, you must be so pleased. I wish I could say mine has improved. I have wet AMD in my left eye and been having injections since 2018 but with stretched out appointments more often than not, the fluid which almost cleared up started again and got worse, then I had a retinal detachment in the same eye over a year ago and now have a large cataract which has needed doing since July 2020, so they now don't know what's going on with the macula as they can't see it because of the cataract. It's so frustrating!

ChesterfieldChap profile image
ChesterfieldChap

Hi there T109, sorry to hear your csr has returned after the huge effort you've put into your lifestyle change but I hope your fortunes change and it clears again for you ASAP! I'm 3 yrs in with csr and it only keeps getting worse no matter what I do and I'm only 45 so we're in a similar situation but hey you never know what the future holds so chin up and all the best to you.

JGer123 profile image
JGer123

Hey T109, sorry to hear you're going through this. Have you had any treatments that have helped? Injections? Lasers? Etc.? Or just making lifestyle changes? I'm 36 and I've been dealing with this for about 10 years. The CSR has recently spread to my left eye. My vision is still great and 20/20, but it is something that is always on my mind. I had success about 6 years ago with a PDT laser, but relapsed a few years back. To combat the relapse, we started injections, which were not effective for me. From there we started doing micropulse laser treatments, which have been effective. The good thing about the micropulse laser is that it is not invasive and it cannot cause scarring, which the PDT laser can cause. Keep us abreast as to what is working for you. It's frustrating to make lifestyle changes, and feel like you're making progress at times, and then to be slammed with a poor scan or testing result when you go to see the doc. Either way, keep your head up, and make sure you keep seeking treatment from your doc, it is the people that stop seeing the doc that end up having permanent vision loss.

T109 profile image
T109 in reply to JGer123

Thanks man ,I really appreciate that info and you’re absolutely right I will look into that I’ve definitely heard of that type of laser therapy!! It seems promising and from what you’ve been saying it’s worth a try for sure!!! Yeah man I was feeling really good there for a minute that was the longest I had gone without any leaks. There was a good month or two where I wasn’t even thinking about it which felt great, but when it comes back full swing all those emotions come rolling back in …I will look into those things I see my retina specialist in a week!

T109 profile image
T109

Oh and no I have not had any treatments as far as some thing like the micro pulse laser. We’ve been on the wait and see status when my CSR cleared up I had two small little visual distortions that I wanted to have checked out. I would get scanned every time I went to my eye doctor and he would test me and I would always test out at 2020 but there’s lots of factors that come in with that especially when you have a bleed lighting is a big one. I am going to ask about some treatment options in to see if the micro pulse option is available.. I I’m 41 and yes I hear you man we have lots of life left!! so we have to be extremely cautious that’s how I feel as well I try to stay current with my doctor even if I have to go every few months to make sure things are not degrading. I got into a conversation on a forum with a person who has been suffering from CSR for about 15 years he mentioned he had started to take horse chestnut a few years back and he feels it truly has helped with his bleeds. I try to stick with the things that have been clinically tested as far as supplements horse chestnut is a popular supplement for varicose veins.

JGer123 profile image
JGer123 in reply to T109

Definitely keep us abreast if you receive treatment that works. I saw something about Horse Chestnut supplements too, maybe I will give that a shot. Good luck, hopefully you receive a treatment that works for you and you can tell us about it.

T109 profile image
T109

Absolutely man! If I have any success with anything and it truly feels like it’s working successfully I will share it.

Torontoresident profile image
Torontoresident

Hi T109,

I'm in the same boat 41y. Initially diagnosed with chronic csr in one eye now they are not sure since that eye is very myopic. There is a smallish pocket of fluid under the macula. In my case it doesn't seem to decrease or increase. My good eye is not affected.

I believe that with CSR the fluid is not blood, it's serum.

We have to make the best of it even if some days are though. It's great that you are keeping health, we have to be hopeful for future medical advances.

It seems that most likely stem cell therapy might be our saving grace.

Keep the faith.

T109 profile image
T109 in reply to Torontoresident

Absolutely, I think that’s the best thing to do .When I first had it, like many I just waited for it to go away and when it did my vision cleared up great! when it came back on the second time(no I’ve had eight episodes in the past three years) hard and heavy that’s when I started to freak. It’s not like having a bum shoulder it’s like literally how you survive!! I’m glad that I have this site and I found people my age going through the same thing and I am bound and determined to find things that help and I will share them with all of you!!

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