Re: [CRVO] Digest for crvo-support@googlegroups.com - 7 updates in 2 topics

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Sylvie MacLean

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Dec 18, 2023, 5:19:52 PM12/18/23
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Hello, Fighting Blindness had a video presentation months ago and they highlighted the research of Dr. Gamm:

If you are interested in Dr. Gamm's research, you can read the following papers:


On Mon, Dec 18, 2023 at 5:10 AM <crvo-s...@googlegroups.com> wrote:
Lois Wang <msloi...@gmail.com>: Dec 18 12:27AM -0500

Hello all,
 
I’m just wondering if any of you have heard of stem cell therapy?
 
My eye doctor said in 5-10 years they may have stem cell therapy.
 
When the initial CRVO happened, the blood clot damaged the cells and the
tissue in the optic nerve area. The tissue has died. Can stem cell therapy
help you grow new tissue?
 
Thanks.
Jeffrey Lai <lai...@gmail.com>: Dec 18 05:35PM +0800

There is one by UAC if I remember correctly, which they have completed the recruitment and currently by spring 2024, the report will be out. Hopefully these are good result and it would take another few years for FDA to approve then it will reach us.
 
Sent from my iPhone
 
On 18 Dec 2023, at 13:27, Lois Wang <msloi...@gmail.com> wrote:
 
Hello all,
 
I'm just wondering if any of you have heard of stem cell therapy?
 
My eye doctor said in 5-10 years they may have stem cell therapy.
 
When the initial CRVO happened, the blood clot damaged the cells and the tissue in the optic nerve area. The tissue has died. Can stem cell therapy help you grow new tissue?
 
Thanks.
 
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CRVO Patient <ercan....@gmail.com>: Dec 17 02:01AM -0800

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 <terri...@yahoo.co.uk>: Dec 17 07:35PM

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. 
 
Sent from Yahoo Mail on Android

On Sun, Dec 17, 2023 at 12:38 PM, CRVO Patient<ercan....@gmail.com> wrote: 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.
 
 
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cal <luxt...@gmail.com>: Dec 17 07:28PM -0800

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 <lai...@gmail.com>: Dec 18 12:30PM +0800

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.
 
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
 
On Sunday 17 December 2023 at 14:35:16 UTC-5 terri...@yahoo.co.uk wrote:
 
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.
 
Sent from Yahoo Mail on Android
 
On Sun, Dec 17, 2023 at 12:38 PM, CRVO Patient
 
<ercan....@gmail.com> wrote:
 
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!
 
PS: I am from Turkiye and not a native english speaker, so sorry for the typos and mistakes.
 
--
 
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To unsubscribe from this group and stop receiving emails from it, send an email to crvo-support...@googlegroups.com.
 
To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/bc94dd16-a80b-4ad5-ae83-b3d8a4892d7fn%40googlegroups.com.
 
--
 
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CRVO Patient <ercan....@gmail.com>: Dec 17 10:43PM -0800

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
 
 
On Monday 18 December 2023 at 07:30:20 UTC+3 Jeffrey Lai wrote:
 
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