CRVO Cause and Treatments

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CRVO Patient

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Dec 17, 2023, 12:38:09 PM12/17/23
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Hi Everybody,
First of all, i wish i would never want to write this group like everyone else.
I wish everybody healthy and happy life from now on.
I was diagnosed with CRVO on Jan 2023. 
I am a software engineer and was having a certificate exam at 06:00-08:00 on Saturday 21.
Towards to the end of exam, i left grey area on my left eye and though i got effected by hypertension or something like that. It was like you feel after looking at to the light and you feel not good to see.
Later on the day, in the centre of my vision, that foggy view never ended and went to the doctor in the afternoon. The doctor told me to make OCT to check my eye and after having done, she told me to see the retinal doctor on Monday immediately and advised me to get coraspirin.
On Monday, i went to retinal doctor and he did eye angiography and oct as well and identifed that i got CRVO. However, OCT values were better so he told me to wait for eye injection about 3 days and advised me to see a cardiologist and neurologist.
I went immediately to the doctors and had several blood tests and scans on my brain and heart as well. I am 39 and had very sport life until pandemic and had 3 times biontec vaccine. So the doctors couldn't find anything related that CRVO can occur to me. Cardiolog told me that i might have PFO. However, 1 to 4 people have already PFO in the population and advised me to use coraspirin and plavix together for 6 months. I got injection 3 days after the CRVO and my eye was quite good enough to see all the letters to check. Sure not like my right eye but that is acceptable. Now after 9 months, this is my 4th injection because of the edema increased. I also went to the hematology and nothing indeed found as genetics. 
I have some questions to help people and identify the real cause:
1) I got injections almost every 100 days, how frequently are you getting?
2) My doctor told me after a year, it might be stabilised, has anybody stabilised state?
3) Are you using coraspirin or plavix which i really don't want to use. Doctors are giving this because they dont know the reason. However, homocysteine was like 15.7 little bit higher than 15 and told that might not be enough to block veins. On the other hand, i see some doctor advices that should be around 6-8, don't know the units.
4) I really don't have anything about my heart and my heart doctor told me even i can climb to everest. Has anybody having troubles doing sport?

My advice for myself and you is to move frequently, do sports, eat healthy and drink really less. I am not a frequent drinker but will really considering stopping drinking at all. 

Thank you very much for this group. If possible i really like to have a statistics about patients to find out the common reasons.

Thanks everybody and have a healthy and enjoyable life!

P.S: I am from Turkiye and not a native english speaker, so sorry for the typos and mistakes.

terri tinsel

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Dec 17, 2023, 7:35:16 PM12/17/23
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I am a 63 year old lady who I thought was reasonably healthy not overweight and spend a lot of time outside walking and swimming during the summer. 
Last July 2022 I was diagnosed with CRVO after I noticed my left eye had gone blurry. 
I worked in social care and had all three COVID injections. I mention this as I am trying to associate a link perhaps to why so many healthy people have suddenly developed this eye condition. They said my e was probably caused by a spike in my blood pressure. I really don't know??
I started last August with injections every 4 weeks , for the last 6 months it has been every 8 weeks. They tried leaving it for 12 weeks but the swelling started again behind the retina. 
I can still see fine with both eyes and I am still driving.  I just feel so sad that this happened without much warning or reason. 


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cal

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Dec 18, 2023, 3:28:21 AM12/18/23
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Welcome to the group - one that no one wanted to join! I am glad you found us.  There is alot of information on this site.

 I will be celebrating my 10th anniversary of my first CRVO.  The first one was an angle closure, I have narrow angles, caused by being dilated for an eye exam.  I only had 3 injections of Avastin and there was no improvement so I stopped the injections.

The second CRVO was in October of 2021.  Coincidentally it was 2 weeks after my COVID booster injection.  I could not see anything out of that eye only shadows.  I had a vitrectomy to clear the blood out and went back to my pre-second CRVO "normal" vision.   

After the vitrectomy in February 2022 I have been getting Eylea injections every 4 weeks.  Due to scheduling (Doctor out of town) I began to have injections every 5 weeks without a change.  I am now at a 6 week interval.  Fingers crossed I hope it can be pushed out even further if it continues to be stable.  

 All the best, 
Cal

Jeffrey Lai

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Dec 18, 2023, 4:30:20 AM12/18/23
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Welcome to the group. :)
Mine started April 2023. Since then, my vision is like a shadow. I was on lucentis for 4 weeks interval and they upgraded me to 8 weeks after 3 injections. After 7 weeks, swelling came back. And I ask for Eylea and now I am on 6 weeks interval and had 2 Eylea injections but there isn’t any improvement. 


Sent from my iPhone

On 18 Dec 2023, at 11:28, cal <luxt...@gmail.com> wrote:

Welcome to the group - one that no one wanted to join! I am glad you found us.  There is alot of information on this site.

CRVO Patient

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Dec 18, 2023, 6:43:41 AM12/18/23
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Thanks for messages :)
Have you been using coraspirin or plavix?
It seems all of us are having a disease which we don't know the reason.
What do you think about a Slack Workspace that we might create channels and talk interactively?
I might create a Slack Workspace and invite you to all by also using this group.
However, in my opinion, an interactive group might help us better.
We really need support from all over the world to overcome this illness.
In fact, i wouldn't like to name it as illness because we don't know if it already protected us from something bigger to take care of our health earlier.
Please share also opinions about Slack.
Nice to meet you all :)
Ercan

Jo Souza

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Dec 18, 2023, 12:55:05 PM12/18/23
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May I ask, what is coraspirin?

  "YOU are my #1 priority"         

Click Here to Submit a Testimonial!



Ercan Canlıer

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Dec 18, 2023, 1:32:55 PM12/18/23
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Sure, they are blood thinners, there might be typo, coraspin or plavix are the most used ones if you have problem with blood  coagulation.
Normally people who has problems with their heart are using this drugs to prevent stroke.
Doctors don't know the reaons so they advice us to use this as a preventer.
So as  a CRVO diagnosed people, have you been using this drugs besides injections?


Jo Souza <jos...@realtyconcepts.com>, 18 Ara 2023 Pzt, 15:55 tarihinde şunu yazdı:


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Ercan CANLIER

xoomer

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Dec 18, 2023, 1:53:57 PM12/18/23
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Hi...

One of the mysteries of this disease is "why did it happen" but unfortunately there is no definitive answer.  Many people think it happened because of some event that took place shortly before the start of their RVO but in my case I was in bed reading, without any serious medical issues, or any stress when it happened to me. So, for the time being nobody can say with any certainty, we can only guess.

Over the last 12 years I have been getting injections every 6-16 weeks.  The time frame has varied mainly depending on the drug being used and how affective the injections have been. Typically I get injections these days between 6-8 weeks.  The 16 week timeframe I mentioned was the one time I was given the steroid Ozurdex but I was a "steroid responder" (it increased the pressure in my eye too much) so I didn't get a second injection.

When you ask about stabilization do you mean go back to normal?  If so, there have been a few people on this board who have said the disease cured itself over time but mainly they were relatively young and their disease wasn't that serious--if I remember correctly.  In my case I suppose stabilization means I have the disease under control if I continue to get the injections--but that could change at any moment.

I haven't really changed my lifestyle since I've had this disease because my RS has not recommended I make any changes.  I still eat and drink what I want and exercise quite a bit for my age--currently about an hour a day, 6-7 days a week.  Since we are all different this lifestyle may not work for others; however, the closer to the normal life you had before your RVO that you can lead, the better off you will be IMO.

Good luck...

Bruce

Ercan Canlıer

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Dec 18, 2023, 2:10:50 PM12/18/23
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Thanks Bruce,
Have you been using coraspin or plavix, blood thinners? 

18 Ara 2023 Pzt 16:53 tarihinde xoomer <virgi...@gmail.com> şunu yazdı:
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Bruce Dishongh

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Dec 18, 2023, 2:58:10 PM12/18/23
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Hi Ercan..

I have never taken coraspin or plavix.  I did start taking Eliquis a few years ago because I developed afib, but this was several years after I had developed an RVO.

Bruce

Ercan Canlıer

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Dec 18, 2023, 3:21:08 PM12/18/23
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Can others also say whether or not using blood thinners? And please also mention the country, age for better statistics.
That would be helpful for people.
I dont have any problem with my body beside crvo and would not like to use blood thinners. So wondering others?

18 Ara 2023 Pzt 17:58 tarihinde Bruce Dishongh <virgi...@gmail.com> şunu yazdı:

Kaye Federspiel

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Dec 18, 2023, 4:48:59 PM12/18/23
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Sorry you have this & I have had many pitty parties for myself, then I have remember I could have something worse. I too, just out of the blue had black dots in my visual field. Honestly didn't think much of it other than annoying.  Went to my ete doctor & this journey began...Eylea injection every 4 week and have been able to go to 11-12 weeks. But I hate these injections!! My days is shot doing nothing until late afternoon my vision starts to clear. They dilate both eyes heavily so even my good eye is no good until late afternoon.  The discomfort I have following the injection makes me shake & upset until I discovered that using a steroid drop 1 week prior reduced it all. (Fluromethalone) 2-4 drops daily.  Has anyone tried this?

Bruce Dishongh

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Dec 19, 2023, 5:30:26 PM12/19/23
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Hi Kaye...

I'm not sure what your situation is in regards to your RS but if possible look foran RS who doesn't dilate your eyes.  My RS stopped dilating my eyes a couple of years ago once he got a new machine called an Otomap.  

I don't know why you have such discomfort after the injection--what numbing agent does your RS use?  I have my RS always give me a numbing shot before the actual Eylea injection and I almost never have any discomfort.  I think the numbing injection lasts longer than the gel or drops so if I feel anything it is usually minor and doesn't happen until the day after the shot.

Good luck,

Bruce



cal

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Dec 20, 2023, 6:19:35 AM12/20/23
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Ercan:  I don't take any blood thinners or a daily aspirin.


Kaye:  The only time I have had discomfort after an injection is when the  nurse / assistant did not rinse my eye out from the betadine solution.  I now always carry in the car an eye wash solution just in case.

Usually I only have them dilate the CRVO eye.  I make sure  the tech understands / remembers that.  However, about every 4 months the Doctor wants dilate both eyes.  In addition he schedules a fluorescein angiogram and an OCT ( an OCT is done at every appointment).

Cal

cal

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Dec 20, 2023, 3:17:08 PM12/20/23
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Jeffrey and Lois - Have your doctors ever suggested getting a vitrectomy to clear your eye?  

When I first had my second CRVO I couldn't see a thing.   It was like looking through a white sheet with a bright light on the other side.  If something passed  I could only see a shadow.  

One RS suggested an Avastin shot to clear the blood from the eye.  This didn't help at all and after waiting a month he suggested a vitrectomy.   Based on his association with a hospital that wasn't in network I found someone closer who I have been with ever since.   He also suggested a vitrectomy which brought me back to my pre-second CRVO vision.  He did a few laser zaps on the leaking vessel(s) and I have been getting injections of Eylea ever since.

Cal

Jeffrey Lai

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Dec 21, 2023, 4:37:00 AM12/21/23
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Hi Cal
RS never suggested vitrectomy to me, that time my fundus was like blood and thunder.
after about 8 months which is now, the recent fundus shows there is no blood, only developed 2 blood spots....
but my overall vision is like a lot of grey sheets covering all my vision, i cant tell who is in front of me and i cant reach my emails with my bad eye.
my bad eye is only having 20/200 vision and i have to try hard to see that letter...

currently i am off and on the thailand treatment which is the palm pressure thingy i had posted before, not sure will it help, as it has stated that i am required to do at least 12 times a day and with an interval of an hour each for 2.5 mins... which i only have time to do like 3 to 4 times a day, will try to do as much as possible and now when i am putting pressure, i can see a bit of yellow light and some purplish flashing lights instead of black and white patterns.



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Thanks & Regards,
Jeffrey Lai

Aldy 77

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Jan 13, 2024, 11:32:01 PM1/13/24
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I was diagnosed with CRVO in 2013 when my left eyesight went really blurry with a dark shadow on one side. Over the following 7 years I underwent  Ozuredex implants numerous  times, Lucentis/Eylea numerous  times, blood thinning medications etc etc. My cardiologist, neurological, blood pressure test all negative. Healthy diet, excercise all good. 4 years ago my ophthalmologist said there is no point in continuing treatment and just leave things to nature. I’m pleased to say that my eyesight has now stabilised and although things haven’t improved my sight is stable and not getting any worse. I can live with that as I can still drive, read etc. This condition does often settle down by itself and I wonder  whether all these expensive drugs are really worth it as no one really knows what causes crvo so dont get too downhearted. This condition often stabilises and settle down by itself. 

Jeffrey Lai

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Jan 14, 2024, 4:15:40 AM1/14/24
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Aldy
How is your vision like? 20/200? I am having a dark shade for my crvo eye with a vision of 20/200. I feel it is almost useless for that eye. 

Had just went for a tcm treatment and they are able to do OCT and fundus for me and found out that my health eye is starting to have thinning of the retina wall… I am only 44 and this is starting… sigh….
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On 14 Jan 2024, at 07:32, Aldy 77 <alderso...@gmail.com> wrote:



Ercan Canlıer

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Jan 14, 2024, 11:15:51 AM1/14/24
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Hi Aldy,
Thanks for message and info.
Where have you been living?
Have you been using blood thinners at the moment?
I went to the hematology doctor as well to check whether or not i have something genetics.
MTHR genetic might be a cause to this, especially homocysteine levels.
Hope you are better and healthier.
Thanks for info.

Aldy 77 <alderso...@gmail.com>, 14 Oca 2024 Paz, 02:32 tarihinde şunu yazdı:
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Lois Wang

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Jan 16, 2024, 1:27:33 AM1/16/24
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What is vitrectomy? None of the doctors suggested this. 

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