chronic CSR, 7 yrs

[pila123]

Hello, I have a family member with chronic CSR, which means fluid gets leaked distorting his vision, he is going to be have a second argon laser surgery as he has had a second leakage spot,, he has had 26 recurrences and he is 41 yrs old. Thank God it has only been one eye but we are very worried that his vision will be permanently affected and that he could go on to develop wet AMD.

Also, doctors often want him to wait months to see if the fluid will reabsorb, before treatment like the argon laser, but the longer the liquid stays there, more chance of developing vessels, capillaries, etc.. that could later on turn to wet AMD. I have also heard about finasteride 5 mg and melatonine as well as saffron,,, but this all sounds like teories

So far, he just received the argon laser once, they said photo (PDT) not recommended as there is a risk to develop CNV (neovascularization) over time, and they recommended the anti-veg injection,,, but I cant imagine if this will go on forever, also the cost its insane,,, we are very worried, as it seems like it will be something to battle forever, not even sure if the insurance would cover all this for life.

Anyway, he is extremely depressed, we dont know how to help

,,, any advise anyone has or idea about this situation would be of great help, thank you.

thanks for reading,

Pila

[T109]

I think a lot of it has to do with how his vision is in that eye? I have met people on other forums who have had CSR for over 25 years and still have 2030 vision and some have 2020. I think it depends on the individual.. I’ve also met people who have had CSR that has been far worse than mine I’ve had it for three years. I definitely have had some degrading in my vision but I still see in 2020 and when I don’t have a bleed my vision is pretty crisp. I believe mine is chronic and I think that I am one of the lucky individuals who have to deal with it until there is an absolute cure considering it is idiopathic and nobody really knows what the best method is. The longest I’ve gone without a reoccurrence is roughly 8 months I have done a lot of things to drastically change my life one of them is reducing stress it’s annoying to hear that as a remedy but I believe it does help. I believe saffron has played an integral role in my bleeds not being as long since I’ve started a regiment of eye vitamins stress reduction and saffron I’ve noticed that my bleeds do not last as long and are not as intense as far as dimness. When is first happened it was horrendously frightening now I’ve kind of settled into the fact that it’s probably going to be chronic with me and I have to just stay on top of it… I can’t imagine the sense of fear he may be going through losing your vision is very scary it’s very rare that CSR turns to AMD from the literature that I’ve read but I it can turn to CNV which in my mind might as well be AMD… The good thing is is that there is a lot of technology available to help slow the issue I’m having my first PDT or micro pulse in the coming weeks. I have heard that PDT has given people up to 10 to 15 years of respite I know that everybody’s different but I’d take that over not. I hope that he still has decent acuity in that eye and there is hope the best thing is to stay positive I know insurance is a bitch… I find it really sad that here in the United States vision is not covered as well as I would like it to be… As in some insurance companies see CSR as self-limiting so it’s not covered that is extraordinarily stressful considering it can be blinding in certain circumstances but thankfully my insurance covers most of my procedures.

[pila123 in reply to T109]

thanks so much for the advise,, I heard about saffron too but its so expensive,, I guess this is an investment,,, I have also heard melatonin helps, not sure,,, my brother has severe depression from this, he has told his gf she should leave him, but I believe there are people that do much worse and can still get married, work and have a life,,, he just doesn't believe that now because he knows after 7 yrs it will probably never go away and he is very scarred about sight loss,,, i hope there is a miracle and he can recover,,, its good to know you are doing so well,,,, about the PDT I had read that it might lead to CNV,, not sure if after many treatments,, so for him they recommended the argon laser,, only thing is you get a black spot,,, he has that 2nd surgery next week, so we are praying it goes well,,, but how do you deal with anxiety and the mental hassle? he is now talking to a psychiatrist as well ,, and we dont know how else to help, i really hope this resolves,, it is incredible you know people with CSR for 25 yrs who can still see well,,, I wonder how they cope when they go without good sight for months and what they do about it, if you have any other info, please let me know, i will keep you posted as well

[T109 in reply to pila123]

Yes I understand this person‘s frustration and it’s frightening. I’m married with four kids and they’re all under the age of 11. Those fears can creep into your head. I always worry about it happening in my other eye, But I’ve gotten to a place where I’m more excepting I’m not saying I’m throwing in the towel I’m just saying acceptance brings peace… It’s weird how that works but I feel a lot better just excepting it..I started to focus on meditation and also letting things go reducing stress at any level. I saw a significant difference in episodes and the length of time Plus the severity when I was doing stress reduction along with vitamin intake and I was pretty regimented with my nighttime melatonin and saffron I forgot to add that I take 3 mg of melatonin every night.. I am not 100% sure that that is what’s doing it, but since I’ve started all of that I haven’t had an episode as intense… But maybe I’m not out of the placebo effect lol!I still have Slight wavy vision and that’s gonna be there probably forever. But I’m not sure because I’ve heard that people who have had it for a while it’s sometimes will dissipate.

I think everybody is different as far as length of time dealing with it! some people it affects differently than others. But from reading on forums and talking to people one of the things that seems to come up is stress, and stress reduction. It’s very hard to do when you feel like you’re gonna go blind. The best way to cope with it is to continue to have hope, hope that it will eventually go away, or not stay chronic, Or stabilize. But the biggest thing being is hopeful and focusing on things that you can do now and not worrying about what may happen in the future that is huge on reducing stress. Talking with other people who are going through the same thing is helpful as well. Dwelling will only compound the problem. Meditation is a huge one! I absolutely sucked at it and it’s very hard to do but it helps. I know that it’s very hard for anybody who is dealing with the pressure and stress of having diminished vision. But if he can find it somewhere to enjoy the moment and what he does have and the possibility that it may stabilize and be a distant memory he may find some peace.

[pila123 in reply to T109]

Thank you for your input, he is starting on meditation, we hope it helps,, it is very weird stress not just emotional but also physical seems to have an impact,, 2 days before this last episode he was tearing down a wall with a hammer, working on a construction thing,,, another time he went to the dentist to have a tooth removed and he said it hurt a lot,,, so it seems his nervous system is very interconected with the optical nerve, at least it seems that way,,, this is really difficult.

But I also wanted to ask you if you know the people with CSR for 25 yrs, what treatments have they used to still have good vision,,, my brother has done the argon laser to seal the leak and then they put the Anti-VEGF inyection, but there is a doctor that says he might need one of those inyections a month for who know how long,,, it is incredibly expensive and I can't imagine having inyections often for 25 or 30 years,,, so we don't know what could be done for his problem to at least stabilize for life without the family going broke.

The photodynamic therapy I have read can be a risk factor for CNV so he has not done that either, problem is he gets fluid in often and then it doesn't reabsorb on its own as for most people,, this is such a problem and we don't know what to do, as most CSR patients seems to do a lot better without even treatments and I know a lot resolve on their own, hope this is the case for both of you.

Please let me know if you have any other info of the above,,, I am also a big believer in supplements and healthy diet and that a junk diet would make it worse, but my brother doesn't seem to believe that anymore as it keeps reocurring.

Hope to hear from you soon, we are talking to a doctor in a few days, will let you know how it goes. Pila

[T109]

The person that I talk to you that had had it for 25 years Had long periods where it went away so he had a few periods where it was gone for 5 to 6 years then he had photodynamic therapy that got rid of it for about four years and he had it periodically after that so it was moments of remittance that I think accumulated to the length of time he’s had it and because of his case it didn’t grade his vision below 2020. He has something called Metamorphospsia or wavy vision though. The thing with this disease that I’m learning is consistency is key. That is very difficult for anybody including me and I’m a pretty routine person. I make saffron tea every single night regardless of how tired I am regardless of what time it is I don’t miss a dose I also take a nighttime vitamin for eyes. It has the usual suspects your Lutien, lutomax 2020, etc… I also use 3 mg of dissolvable melatonin. Are use a scoop of magnesium which helps with sleep. It’s easy when you get into it in the beginning it’s doing it long and every day that can get tiresome but I feel that the consistency is what shows some of the possible positive affects.

I can’t guarantee that it’s helping I can only go off of what I’ve noticed from previous episodes. I believe that for some people it is truly tied to your physical state of being. I am a hyperactive person who has ADHD and I’m naturally accustomed to having more anxiety than your normal person and I believe that having your adrenal glands consistently at an alert can also raise cortisol levels which I feel that overtime with consistency I’ve lowered a bit.. I’m able to not get so amped up so to speak and I feel like that has helped with my overall sense of well-being. It’s really hard when you have to make large life changes. We want simple fixes because our lives are busy enough I don’t want to try to figure out how to solve possibly going legally blind because it probably takes a lot of work but when you can do these little habitual changes and stay consistent with them I feel like that’s where you might see some results. I promise you that if I find some thing that is a sure shot and works consistently and has truly alleviated my CSR symptoms for large amounts of time and I can repeat that same thing using some of the methods I’m using or whatever I end up learning I will share it with everybody on the site.

[pila123 in reply to T109]

thank you very much for your input, I will update after this week's laser surgery and hope everyone gets better

[ChesterfieldChap]

Csr is depressing and kind of like grieving everyday as it's always a constant because you literally see it all the time but as already mentioned the best thing really is doing what you can for stress relief. A complete change in lifestyle and practising how you react to, and see situations is the way forward. Other than a good diet, practising mindfulness, meditation, exercise and maybe having someone to talk to is just about all one can do to combat it. In terms of cure I feel its the poor relation of AMD and not as much a priority so it's upto the individual to help themselves as much as possible.

[pila123 in reply to ChesterfieldChap]

thank you so much, he is personality type A so I think it has a lot to do with it,,, seems like his nervous system has a very strong connection with the optical nerve,, at least in my opinion it seems that way

[ChesterfieldChap in reply to pila123]

I'm 45 and had csr constantly for a few years now and it's a long road in dealing with it im afraid but like others have said developing a positive mental attitude over time plus a healthy lifestyle are the best things to combat csr. Just try to eat well, rest well, exercise, and be that pebble in the stream that let's chaos and trouble flow by. The very best of luck to you and your family memeber.

[JGer123]

I'm 36 and I've had CSR for 10+ years. My vision is still very good at 20/20. I have had some success with a PDT laser, which cured my leakage for about 6 years in my right eye. After about 6 years, the leakage came back. Then it spread to my left eye. I've had injections, which didn't work for me, but they do work for some other people. More recently I have had a micropulse laser, which doesn't cause any scarring or damage to the eye, and I have seen success with the micropulse laser.

I would advise you tell your family member to start focusing on positivity and a healthy lifestyle. Fish oil is good for eye health, start taking that twice a day. And when you get in to see the doctor see if they can administer a micropulse laser to see if that improves his condition. If that doesn't work for him, I would recommend trying the PDT laser as it is seen as the most effective treatment for this condition. Another reason to be optimistic is because of the amount of money and research that go into this condition, which is tremendous - at some point they will find out the actual cause for this condition, and they will find an effective cure. I'd start by trying to get to a good place mentally and seeking treatment with either a micropulse laser or PDT laser. Good luck

[pila123 in reply to JGer123]

It is amazing after 10 years you have 20/20, it is very encouraging, however, my brother's issue is that the CSR episode doesn't really resolve on its own or it takes very very long so the fluid stays there unless you get laser,,, therefore, it can cause permanent damage or CNV,, he is getting an argon laser for the second time,,, will update when I know more, thank you

[JGer123 in reply to pila123]

I understand what you're saying. The best advice I received was from my doctor, and the advice was to make sure you continue to seek treatment from a doctor, so that the fluid can be relieved and the permanent scarring does not occur. Curious how your brother makes out with the laser, keep us in the loop. Thx