As a new contributor to this support group let me first say thankyou
for being here. I have been reading all the posts for the last several
weeks and found comfort through your shared knowledge of CRVO and your
individual experience with the challenges I am now faced with as a new
CRVO patient.
I am sixty four years old, in good health except for some slightly
high blood pressure I'm being treated for. I do treadmill workouts and
other forms of exercise, make wise choices in my diet for the most
part and supplement where I think I need it. After annual physicals
and blood work all my numbers are right where they should be and I
have never been treated for any acute physical problems. But, on
Sunday Jan. 15th I began to notice a slight blurring in my left eye.
It was a small area that was more of a nuisance than anything else. A
couple days later my vision got a little worse and I thought I had an
infection possibly caused by dust and dirt from the remodeling I was
doing on our house. By Fri.it wasn't any better so I made an
appointment with my OD for Monday and that's when I got the bad news.
He immediately made another appointment with an RS for the next day. I
was told I had a mild case of CRVO and that it was non-eschemic and to
come in for another checkup in 3 weeks or sooner if it got worse. It
did, so two weeks later I was back in the office getting the angio
workup, acuity test and OCT. My vision in the effected eye is down to
counting fingers and being able to identify shapes and objects; like
looking in a foggy mirror. I had my folder ready with questions and
concerns and information I gathered from the posts in this group and
other internet sites. You all made a big difference in the confidence
I carried into the exam room. At that point I was told edema was the
cause of swelling in the retina resulting in more vision problems.
After a lengthy discussion on various treatments and medications we
opted for an immediate injection of Lucentis. The entire process was
painless but there was considerable discomfort that night. After some
Advil and sleep the eye irritation was gone by morning. It's only been
5 days since my treatment but I expected to see a little improvement
by now. I don't think my vision has gotten worse so maybe it's
stabilizing. I know every case is uniqe as is the treatment for CRVO
and vision accuity can get better or worse with time, but if someone
could again relate their experience using Lucentis for treatment it
would help. The RS said this is not a sprint but a marathon in terms
of any recovery I may have and to hang in there as many of you have
said. From your discussions I know there is nothing specific that can
be pointed to as the cause of this condition. But that's what scares
me. I'm afraid that anything I do or eat may damage my bad eye even
further or cause the same thing to happen in my good eye. This whole
thing is very disappointing and confusing to say the least but it's
encouraging to read about successes some of you have had through the
treatment path you and your RS have chosen. Maybe in time there will
be new discoveries for treating and managing CRVO's. That's what I'm
praying for so God Bless and thanks for listening. Donald.
As and after thought I forgot to mention that I had all the blood work
for vasculitis etc. etc. and it all came back negative as expected
from what I have read here.
> As a new contributor to this support group let me first say thankyou > for being here. I have been reading all the posts for the last several > weeks and found comfort through your shared knowledge of CRVO and your > individual experience with the challenges I am now faced with as a new > CRVO patient.
> I am sixty four years old, in good health except for some slightly > high blood pressure I'm being treated for. I do treadmill workouts and > other forms of exercise, make wise choices in my diet for the most > part and supplement where I think I need it. After annual physicals > and blood work all my numbers are right where they should be and I > have never been treated for any acute physical problems. But, on > Sunday Jan. 15th I began to notice a slight blurring in my left eye. > It was a small area that was more of a nuisance than anything else. A > couple days later my vision got a little worse and I thought I had an > infection possibly caused by dust and dirt from the remodeling I was > doing on our house. By Fri.it wasn't any better so I made an > appointment with my OD for Monday and that's when I got the bad news. > He immediately made another appointment with an RS for the next day. I > was told I had a mild case of CRVO and that it was non-eschemic and to > come in for another checkup in 3 weeks or sooner if it got worse. It > did, so two weeks later I was back in the office getting the angio > workup, acuity test and OCT. My vision in the effected eye is down to > counting fingers and being able to identify shapes and objects; like > looking in a foggy mirror. I had my folder ready with questions and > concerns and information I gathered from the posts in this group and > other internet sites. You all made a big difference in the confidence > I carried into the exam room. At that point I was told edema was the > cause of swelling in the retina resulting in more vision problems. > After a lengthy discussion on various treatments and medications we > opted for an immediate injection of Lucentis. The entire process was > painless but there was considerable discomfort that night. After some > Advil and sleep the eye irritation was gone by morning. It's only been > 5 days since my treatment but I expected to see a little improvement > by now. I don't think my vision has gotten worse so maybe it's > stabilizing. I know every case is uniqe as is the treatment for CRVO > and vision accuity can get better or worse with time, but if someone > could again relate their experience using Lucentis for treatment it > would help. The RS said this is not a sprint but a marathon in terms > of any recovery I may have and to hang in there as many of you have > said. From your discussions I know there is nothing specific that can > be pointed to as the cause of this condition. But that's what scares > me. I'm afraid that anything I do or eat may damage my bad eye even > further or cause the same thing to happen in my good eye. This whole > thing is very disappointing and confusing to say the least but it's > encouraging to read about successes some of you have had through the > treatment path you and your RS have chosen. Maybe in time there will > be new discoveries for treating and managing CRVO's. That's what I'm > praying for so God Bless and thanks for listening. Donald.
> As and after thought I forgot to mention that I had all the blood work > for vasculitis etc. etc. and it all came back negative as expected > from what I have read here.
> -- > You received this message because you are subscribed to the Google > Groups "Central Retinal Vein Occlusion Support" group. > To post to this group, send email to crvo-support@googlegroups.com > To unsubscribe from this group, send email to > crvo-support+unsubscribe@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/crvo-support?hl=en > Remember: This discussion group is not managed by physicians. You should always consult your physician without delay before making medical decisions.
Even nearly four years after my CRVO, Donald, I'm still grateful when
someone makes the effort that you have to provide so many details of
your immediate post-occlusion experience.
I can't help with direct knowledge of Lucentis treatment, but to ease
some of that inevitable worry about the good eye, I'll point you in
the direction of Ken's video on the subject: #13 on
https://sites.google.com/site/crvoquickstart/video-library. It's
reassuring to know that most CRVO patients never need to deal with the
greatest fear we all have.
I hope Lucentis starts kicking in to combat your edema. Is the CRVO
eye still considered non-ischemic?
From a point further along the marathon
Carol (London/Jakarta)
[soon also to be 64]
On Feb 12, 10:44 am, Donald B <bir...@comcast.net> wrote:
> As a new contributor to this support group let me first say thankyou
> for being here. I have been reading all the posts for the last several
> weeks and found comfort through your shared knowledge of CRVO and your
> individual experience with the challenges I am now faced with as a new
> CRVO patient.
> I am sixty four years old, in good health except for some slightly
> high blood pressure I'm being treated for. I do treadmill workouts and
> other forms of exercise, make wise choices in my diet for the most
> part and supplement where I think I need it. After annual physicals
> and blood work all my numbers are right where they should be and I
> have never been treated for any acute physical problems. But, on
> Sunday Jan. 15th I began to notice a slight blurring in my left eye.
> It was a small area that was more of a nuisance than anything else. A
> couple days later my vision got a little worse and I thought I had an
> infection possibly caused by dust and dirt from the remodeling I was
> doing on our house. By Fri.it wasn't any better so I made an
> appointment with my OD for Monday and that's when I got the bad news.
> He immediately made another appointment with an RS for the next day. I
> was told I had a mild case of CRVO and that it was non-eschemic and to
> come in for another checkup in 3 weeks or sooner if it got worse. It
> did, so two weeks later I was back in the office getting the angio
> workup, acuity test and OCT. My vision in the effected eye is down to
> counting fingers and being able to identify shapes and objects; like
> looking in a foggy mirror. I had my folder ready with questions and
> concerns and information I gathered from the posts in this group and
> other internet sites. You all made a big difference in the confidence
> I carried into the exam room. At that point I was told edema was the
> cause of swelling in the retina resulting in more vision problems.
> After a lengthy discussion on various treatments and medications we
> opted for an immediate injection of Lucentis. The entire process was
> painless but there was considerable discomfort that night. After some
> Advil and sleep the eye irritation was gone by morning. It's only been
> 5 days since my treatment but I expected to see a little improvement
> by now. I don't think my vision has gotten worse so maybe it's
> stabilizing. I know every case is uniqe as is the treatment for CRVO
> and vision accuity can get better or worse with time, but if someone
> could again relate their experience using Lucentis for treatment it
> would help. The RS said this is not a sprint but a marathon in terms
> of any recovery I may have and to hang in there as many of you have
> said. From your discussions I know there is nothing specific that can
> be pointed to as the cause of this condition. But that's what scares
> me. I'm afraid that anything I do or eat may damage my bad eye even
> further or cause the same thing to happen in my good eye. This whole
> thing is very disappointing and confusing to say the least but it's
> encouraging to read about successes some of you have had through the
> treatment path you and your RS have chosen. Maybe in time there will
> be new discoveries for treating and managing CRVO's. That's what I'm
> praying for so God Bless and thanks for listening. Donald.
> As and after thought I forgot to mention that I had all the blood work
> for vasculitis etc. etc. and it all came back negative as expected
> from what I have read here.
> Even nearly four years after my CRVO, Donald, I'm still grateful when
> someone makes the effort that you have to provide so many details of
> your immediate post-occlusion experience.
> I can't help with direct knowledge of Lucentis treatment, but to ease
> some of that inevitable worry about the good eye, I'll point you in
> the direction of Ken's video on the subject: #13 onhttps://sites.google.com/site/crvoquickstart/video-library. It's
> reassuring to know that most CRVO patients never need to deal with the
> greatest fear we all have.
> I hope Lucentis starts kicking in to combat your edema. Is the CRVO
> eye still considered non-ischemic?
> From a point further along the marathon
> Carol (London/Jakarta)
> [soon also to be 64]
> On Feb 12, 10:44 am, Donald B <bir...@comcast.net> wrote:
> > As a new contributor to this support group let me first say thankyou
> > for being here. I have been reading all the posts for the last several
> > weeks and found comfort through your shared knowledge of CRVO and your
> > individual experience with the challenges I am now faced with as a new
> > CRVO patient.
> > I am sixty four years old, in good health except for some slightly
> > high blood pressure I'm being treated for. I do treadmill workouts and
> > other forms of exercise, make wise choices in my diet for the most
> > part and supplement where I think I need it. After annual physicals
> > and blood work all my numbers are right where they should be and I
> > have never been treated for any acute physical problems. But, on
> > Sunday Jan. 15th I began to notice a slight blurring in my left eye.
> > It was a small area that was more of a nuisance than anything else. A
> > couple days later my vision got a little worse and I thought I had an
> > infection possibly caused by dust and dirt from the remodeling I was
> > doing on our house. By Fri.it wasn't any better so I made an
> > appointment with my OD for Monday and that's when I got the bad news.
> > He immediately made another appointment with an RS for the next day. I
> > was told I had a mild case of CRVO and that it was non-eschemic and to
> > come in for another checkup in 3 weeks or sooner if it got worse. It
> > did, so two weeks later I was back in the office getting the angio
> > workup, acuity test and OCT. My vision in the effected eye is down to
> > counting fingers and being able to identify shapes and objects; like
> > looking in a foggy mirror. I had my folder ready with questions and
> > concerns and information I gathered from the posts in this group and
> > other internet sites. You all made a big difference in the confidence
> > I carried into the exam room. At that point I was told edema was the
> > cause of swelling in the retina resulting in more vision problems.
> > After a lengthy discussion on various treatments and medications we
> > opted for an immediate injection of Lucentis. The entire process was
> > painless but there was considerable discomfort that night. After some
> > Advil and sleep the eye irritation was gone by morning. It's only been
> > 5 days since my treatment but I expected to see a little improvement
> > by now. I don't think my vision has gotten worse so maybe it's
> > stabilizing. I know every case is uniqe as is the treatment for CRVO
> > and vision accuity can get better or worse with time, but if someone
> > could again relate their experience using Lucentis for treatment it
> > would help. The RS said this is not a sprint but a marathon in terms
> > of any recovery I may have and to hang in there as many of you have
> > said. From your discussions I know there is nothing specific that can
> > be pointed to as the cause of this condition. But that's what scares
> > me. I'm afraid that anything I do or eat may damage my bad eye even
> > further or cause the same thing to happen in my good eye. This whole
> > thing is very disappointing and confusing to say the least but it's
> > encouraging to read about successes some of you have had through the
> > treatment path you and your RS have chosen. Maybe in time there will
> > be new discoveries for treating and managing CRVO's. That's what I'm
> > praying for so God Bless and thanks for listening. Donald.
> > As and after thought I forgot to mention that I had all the blood work
> > for vasculitis etc. etc. and it all came back negative as expected
> > from what I have read here.
Hi Donald. I'm glad you found the group and sad you had to. I think
we probably all worry incessantly about our 'other' eye. While there
are some suspected causes of RVO (high blood pressure, high
cholesterol, clotting problems), lots of us on this group don't have
these risk factors. I think for anyone who does, controlling these
things is something that you can do but that, other than these, we can
only hope the other eye stays well. I try to stay grateful for my
good eye so that I thank God for it every day. I can't quite stop
myself from adding a little plea that it stays that way.
I've had 4 Avastin injections (5th coming up in 3 days - I count down
as one would to any ominous thing!), no Lucentis. My first shot
helped within hours - but my vision prior to the shot (2 months after
my BRVO) had gotten very bad before the shot with a big gray 'cloud'
covering the lower 2/3 or so of my vision. My vision did not get that
bad prior to my other shots and my improvement also was more subtle
from those shots.
You sound healthy and active and I think you are doing great in
working to stay that way. Personally, I feel that anything I can do
to reduce my stress may help to reduce the chances of RVO in my good
eye so that's what I try to do. Others feel that hydration is
particularly important for them so they work at that. I think we all
just have to do the best we can and we also can't blame ourselves -
most of us never even heard of this odd and horrible thing before it
happened to us, so we certainly couldn't be expected to know what NOT
to do (especially since science can't even explain why it happened to
us). I encourage you to keep track of all your numbers (visual acuity
and central retinal thickness and eye pressures) as it helps you take
control of the condition. While your RS sounds good, it's always you
who will care the most about your condition and your care.
Best wishes,
Marlys
BRVO April 2, 2011 at age 53
4 Avastin shots, 1 focal grid laser (56 burns)
Oklahoma, USA
On Feb 11, 9:44 pm, Donald B <bir...@comcast.net> wrote:
> As a new contributor to this support group let me first say thankyou
> for being here. I have been reading all the posts for the last several
> weeks and found comfort through your shared knowledge of CRVO and your
> individual experience with the challenges I am now faced with as a new
> CRVO patient.
> I am sixty four years old, in good health except for some slightly
> high blood pressure I'm being treated for. I do treadmill workouts and
> other forms of exercise, make wise choices in my diet for the most
> part and supplement where I think I need it. After annual physicals
> and blood work all my numbers are right where they should be and I
> have never been treated for any acute physical problems. But, on
> Sunday Jan. 15th I began to notice a slight blurring in my left eye.
> It was a small area that was more of a nuisance than anything else. A
> couple days later my vision got a little worse and I thought I had an
> infection possibly caused by dust and dirt from the remodeling I was
> doing on our house. By Fri.it wasn't any better so I made an
> appointment with my OD for Monday and that's when I got the bad news.
> He immediately made another appointment with an RS for the next day. I
> was told I had a mild case of CRVO and that it was non-eschemic and to
> come in for another checkup in 3 weeks or sooner if it got worse. It
> did, so two weeks later I was back in the office getting the angio
> workup, acuity test and OCT. My vision in the effected eye is down to
> counting fingers and being able to identify shapes and objects; like
> looking in a foggy mirror. I had my folder ready with questions and
> concerns and information I gathered from the posts in this group and
> other internet sites. You all made a big difference in the confidence
> I carried into the exam room. At that point I was told edema was the
> cause of swelling in the retina resulting in more vision problems.
> After a lengthy discussion on various treatments and medications we
> opted for an immediate injection of Lucentis. The entire process was
> painless but there was considerable discomfort that night. After some
> Advil and sleep the eye irritation was gone by morning. It's only been
> 5 days since my treatment but I expected to see a little improvement
> by now. I don't think my vision has gotten worse so maybe it's
> stabilizing. I know every case is uniqe as is the treatment for CRVO
> and vision accuity can get better or worse with time, but if someone
> could again relate their experience using Lucentis for treatment it
> would help. The RS said this is not a sprint but a marathon in terms
> of any recovery I may have and to hang in there as many of you have
> said. From your discussions I know there is nothing specific that can
> be pointed to as the cause of this condition. But that's what scares
> me. I'm afraid that anything I do or eat may damage my bad eye even
> further or cause the same thing to happen in my good eye. This whole
> thing is very disappointing and confusing to say the least but it's
> encouraging to read about successes some of you have had through the
> treatment path you and your RS have chosen. Maybe in time there will
> be new discoveries for treating and managing CRVO's. That's what I'm
> praying for so God Bless and thanks for listening. Donald.
> As and after thought I forgot to mention that I had all the blood work
> for vasculitis etc. etc. and it all came back negative as expected
> from what I have read here.
Hi Kay, thanks for your reply. As for the blood work question I will
do my best to list what was tested in the ANA ( anti-nuclear-
antibodies ) screen, then you can ask your Internest or RS what they
mean or what is gathered in each froup. I hope this helps.
> Hi Donald
> Sorry to hear you have CRVO, I know exactly what you are going through, as I was recently diagnosed recently with BRVO.
> I was wondering what blood tests you had done to uncover vasculitis?
> I've had a lot of tests as well All negative but just want to ensure I've had that tested.
> Thanks
> Kay
> Sent from my iPhone
> On 12 Feb 2012, at 03:44, Donald B <bir...@comcast.net> wrote:
> > As a new contributor to this support group let me first say thankyou
> > for being here. I have been reading all the posts for the last several
> > weeks and found comfort through your shared knowledge of CRVO and your
> > individual experience with the challenges I am now faced with as a new
> > CRVO patient.
> > I am sixty four years old, in good health except for some slightly
> > high blood pressure I'm being treated for. I do treadmill workouts and
> > other forms of exercise, make wise choices in my diet for the most
> > part and supplement where I think I need it. After annual physicals
> > and blood work all my numbers are right where they should be and I
> > have never been treated for any acute physical problems. But, on
> > Sunday Jan. 15th I began to notice a slight blurring in my left eye.
> > It was a small area that was more of a nuisance than anything else. A
> > couple days later my vision got a little worse and I thought I had an
> > infection possibly caused by dust and dirt from the remodeling I was
> > doing on our house. By Fri.it wasn't any better so I made an
> > appointment with my OD for Monday and that's when I got the bad news.
> > He immediately made another appointment with an RS for the next day. I
> > was told I had a mild case of CRVO and that it was non-eschemic and to
> > come in for another checkup in 3 weeks or sooner if it got worse. It
> > did, so two weeks later I was back in the office getting the angio
> > workup, acuity test and OCT. My vision in the effected eye is down to
> > counting fingers and being able to identify shapes and objects; like
> > looking in a foggy mirror. I had my folder ready with questions and
> > concerns and information I gathered from the posts in this group and
> > other internet sites. You all made a big difference in the confidence
> > I carried into the exam room. At that point I was told edema was the
> > cause of swelling in the retina resulting in more vision problems.
> > After a lengthy discussion on various treatments and medications we
> > opted for an immediate injection of Lucentis. The entire process was
> > painless but there was considerable discomfort that night. After some
> > Advil and sleep the eye irritation was gone by morning. It's only been
> > 5 days since my treatment but I expected to see a little improvement
> > by now. I don't think my vision has gotten worse so maybe it's
> > stabilizing. I know every case is uniqe as is the treatment for CRVO
> > and vision accuity can get better or worse with time, but if someone
> > could again relate their experience using Lucentis for treatment it
> > would help. The RS said this is not a sprint but a marathon in terms
> > of any recovery I may have and to hang in there as many of you have
> > said. From your discussions I know there is nothing specific that can
> > be pointed to as the cause of this condition. But that's what scares
> > me. I'm afraid that anything I do or eat may damage my bad eye even
> > further or cause the same thing to happen in my good eye. This whole
> > thing is very disappointing and confusing to say the least but it's
> > encouraging to read about successes some of you have had through the
> > treatment path you and your RS have chosen. Maybe in time there will
> > be new discoveries for treating and managing CRVO's. That's what I'm
> > praying for so God Bless and thanks for listening. Donald.
> > As and after thought I forgot to mention that I had all the blood work
> > for vasculitis etc. etc. and it all came back negative as expected
> > from what I have read here.
> > --
> > You received this message because you are subscribed to the Google
> > Groups "Central Retinal Vein Occlusion Support" group.
> > To post to this group, send email to crvo-support@googlegroups.com
> > To unsubscribe from this group, send email to
> > crvo-support+unsubscribe@googlegroups.com
> > For more options, visit this group at
> >http://groups.google.com/group/crvo-support?hl=en > > Remember: This discussion group is not managed by physicians. You should always consult your physician without delay before making medical decisions.- Hide quoted text -
Thanks for your reply Carol. I have taken note of the many posts you
have contributed to this group and have gained piece of mind and
knowledge from them. Four years is a long marathon for someone with
CRVO and to hang in there that long is a testimonie to your
willingness to help others. Good work and thanks for the video
reference. Still non-eschemic
On Feb 12, 6:40 am, "Carol (London)" <caroljwell...@gmail.com> wrote:
> Even nearly four years after my CRVO, Donald, I'm still grateful when
> someone makes the effort that you have to provide so many details of
> your immediate post-occlusion experience.
> I can't help with direct knowledge of Lucentis treatment, but to ease
> some of that inevitable worry about the good eye, I'll point you in
> the direction of Ken's video on the subject: #13 onhttps://sites.google.com/site/crvoquickstart/video-library. It's
> reassuring to know that most CRVO patients never need to deal with the
> greatest fear we all have.
> I hope Lucentis starts kicking in to combat your edema. Is the CRVO
> eye still considered non-ischemic?
> From a point further along the marathon
> Carol (London/Jakarta)
> [soon also to be 64]
> On Feb 12, 10:44 am, Donald B <bir...@comcast.net> wrote:
> > As a new contributor to this support group let me first say thankyou
> > for being here. I have been reading all the posts for the last several
> > weeks and found comfort through your shared knowledge of CRVO and your
> > individual experience with the challenges I am now faced with as a new
> > CRVO patient.
> > I am sixty four years old, in good health except for some slightly
> > high blood pressure I'm being treated for. I do treadmill workouts and
> > other forms of exercise, make wise choices in my diet for the most
> > part and supplement where I think I need it. After annual physicals
> > and blood work all my numbers are right where they should be and I
> > have never been treated for any acute physical problems. But, on
> > Sunday Jan. 15th I began to notice a slight blurring in my left eye.
> > It was a small area that was more of a nuisance than anything else. A
> > couple days later my vision got a little worse and I thought I had an
> > infection possibly caused by dust and dirt from the remodeling I was
> > doing on our house. By Fri.it wasn't any better so I made an
> > appointment with my OD for Monday and that's when I got the bad news.
> > He immediately made another appointment with an RS for the next day. I
> > was told I had a mild case of CRVO and that it was non-eschemic and to
> > come in for another checkup in 3 weeks or sooner if it got worse. It
> > did, so two weeks later I was back in the office getting the angio
> > workup, acuity test and OCT. My vision in the effected eye is down to
> > counting fingers and being able to identify shapes and objects; like
> > looking in a foggy mirror. I had my folder ready with questions and
> > concerns and information I gathered from the posts in this group and
> > other internet sites. You all made a big difference in the confidence
> > I carried into the exam room. At that point I was told edema was the
> > cause of swelling in the retina resulting in more vision problems.
> > After a lengthy discussion on various treatments and medications we
> > opted for an immediate injection of Lucentis. The entire process was
> > painless but there was considerable discomfort that night. After some
> > Advil and sleep the eye irritation was gone by morning. It's only been
> > 5 days since my treatment but I expected to see a little improvement
> > by now. I don't think my vision has gotten worse so maybe it's
> > stabilizing. I know every case is uniqe as is the treatment for CRVO
> > and vision accuity can get better or worse with time, but if someone
> > could again relate their experience using Lucentis for treatment it
> > would help. The RS said this is not a sprint but a marathon in terms
> > of any recovery I may have and to hang in there as many of you have
> > said. From your discussions I know there is nothing specific that can
> > be pointed to as the cause of this condition. But that's what scares
> > me. I'm afraid that anything I do or eat may damage my bad eye even
> > further or cause the same thing to happen in my good eye. This whole
> > thing is very disappointing and confusing to say the least but it's
> > encouraging to read about successes some of you have had through the
> > treatment path you and your RS have chosen. Maybe in time there will
> > be new discoveries for treating and managing CRVO's. That's what I'm
> > praying for so God Bless and thanks for listening. Donald.
> > As and after thought I forgot to mention that I had all the blood work
> > for vasculitis etc. etc. and it all came back negative as expected
> > from what I have read here.- Hide quoted text -
> I understand your fear, and agree that this group has been the best
> resource for educating myself and being prepared to see the RS.
> I had my first steroid injection a week and a half ago, and am still
> seeing some improvement.
> I hope that your injection is effective and that the effects are long
> lasting!
> Delia
> Indiana, USA
> On Feb 12, 6:40 am, "Carol (London)" <caroljwell...@gmail.com> wrote:
> > Even nearly four years after my CRVO, Donald, I'm still grateful when
> > someone makes the effort that you have to provide so many details of
> > your immediate post-occlusion experience.
> > I can't help with direct knowledge of Lucentis treatment, but to ease
> > some of that inevitable worry about the good eye, I'll point you in
> > the direction of Ken's video on the subject: #13 onhttps://sites.google.com/site/crvoquickstart/video-library. It's
> > reassuring to know that most CRVO patients never need to deal with the
> > greatest fear we all have.
> > I hope Lucentis starts kicking in to combat your edema. Is the CRVO
> > eye still considered non-ischemic?
> > From a point further along the marathon
> > Carol (London/Jakarta)
> > [soon also to be 64]
> > On Feb 12, 10:44 am, Donald B <bir...@comcast.net> wrote:
> > > As a new contributor to this support group let me first say thankyou
> > > for being here. I have been reading all the posts for the last several
> > > weeks and found comfort through your shared knowledge of CRVO and your
> > > individual experience with the challenges I am now faced with as a new
> > > CRVO patient.
> > > I am sixty four years old, in good health except for some slightly
> > > high blood pressure I'm being treated for. I do treadmill workouts and
> > > other forms of exercise, make wise choices in my diet for the most
> > > part and supplement where I think I need it. After annual physicals
> > > and blood work all my numbers are right where they should be and I
> > > have never been treated for any acute physical problems. But, on
> > > Sunday Jan. 15th I began to notice a slight blurring in my left eye.
> > > It was a small area that was more of a nuisance than anything else. A
> > > couple days later my vision got a little worse and I thought I had an
> > > infection possibly caused by dust and dirt from the remodeling I was
> > > doing on our house. By Fri.it wasn't any better so I made an
> > > appointment with my OD for Monday and that's when I got the bad news.
> > > He immediately made another appointment with an RS for the next day. I
> > > was told I had a mild case of CRVO and that it was non-eschemic and to
> > > come in for another checkup in 3 weeks or sooner if it got worse. It
> > > did, so two weeks later I was back in the office getting the angio
> > > workup, acuity test and OCT. My vision in the effected eye is down to
> > > counting fingers and being able to identify shapes and objects; like
> > > looking in a foggy mirror. I had my folder ready with questions and
> > > concerns and information I gathered from the posts in this group and
> > > other internet sites. You all made a big difference in the confidence
> > > I carried into the exam room. At that point I was told edema was the
> > > cause of swelling in the retina resulting in more vision problems.
> > > After a lengthy discussion on various treatments and medications we
> > > opted for an immediate injection of Lucentis. The entire process was
> > > painless but there was considerable discomfort that night. After some
> > > Advil and sleep the eye irritation was gone by morning. It's only been
> > > 5 days since my treatment but I expected to see a little improvement
> > > by now. I don't think my vision has gotten worse so maybe it's
> > > stabilizing. I know every case is uniqe as is the treatment for CRVO
> > > and vision accuity can get better or worse with time, but if someone
> > > could again relate their experience using Lucentis for treatment it
> > > would help. The RS said this is not a sprint but a marathon in terms
> > > of any recovery I may have and to hang in there as many of you have
> > > said. From your discussions I know there is nothing specific that can
> > > be pointed to as the cause of this condition. But that's what scares
> > > me. I'm afraid that anything I do or eat may damage my bad eye even
> > > further or cause the same thing to happen in my good eye. This whole
> > > thing is very disappointing and confusing to say the least but it's
> > > encouraging to read about successes some of you have had through the
> > > treatment path you and your RS have chosen. Maybe in time there will
> > > be new discoveries for treating and managing CRVO's. That's what I'm
> > > praying for so God Bless and thanks for listening. Donald.
> > > As and after thought I forgot to mention that I had all the blood work
> > > for vasculitis etc. etc. and it all came back negative as expected
> > > from what I have read here.- Hide quoted text -
Thanks for your reply and advise, Marlys. I do the same thing; give
thanks for my good eye and everything else I have been blessed with
( like this group ) and then the plea for guidance to heal the
affected eye and keep the good eye. I'm also updating my folder with
personal observations concerning my CRVO, clinical numbers as they
come in and any new information offered here and other web sites.
Donald B, Dearborn Mi.
On Feb 12, 11:13 am, Marlys L <chick...@gmail.com> wrote:
> Hi Donald. I'm glad you found the group and sad you had to. I think
> we probably all worry incessantly about our 'other' eye. While there
> are some suspected causes of RVO (high blood pressure, high
> cholesterol, clotting problems), lots of us on this group don't have
> these risk factors. I think for anyone who does, controlling these
> things is something that you can do but that, other than these, we can
> only hope the other eye stays well. I try to stay grateful for my
> good eye so that I thank God for it every day. I can't quite stop
> myself from adding a little plea that it stays that way.
> I've had 4 Avastin injections (5th coming up in 3 days - I count down
> as one would to any ominous thing!), no Lucentis. My first shot
> helped within hours - but my vision prior to the shot (2 months after
> my BRVO) had gotten very bad before the shot with a big gray 'cloud'
> covering the lower 2/3 or so of my vision. My vision did not get that
> bad prior to my other shots and my improvement also was more subtle
> from those shots.
> You sound healthy and active and I think you are doing great in
> working to stay that way. Personally, I feel that anything I can do
> to reduce my stress may help to reduce the chances of RVO in my good
> eye so that's what I try to do. Others feel that hydration is
> particularly important for them so they work at that. I think we all
> just have to do the best we can and we also can't blame ourselves -
> most of us never even heard of this odd and horrible thing before it
> happened to us, so we certainly couldn't be expected to know what NOT
> to do (especially since science can't even explain why it happened to
> us). I encourage you to keep track of all your numbers (visual acuity
> and central retinal thickness and eye pressures) as it helps you take
> control of the condition. While your RS sounds good, it's always you
> who will care the most about your condition and your care.
> Best wishes,
> Marlys
> BRVO April 2, 2011 at age 53
> 4 Avastin shots, 1 focal grid laser (56 burns)
> Oklahoma, USA
> On Feb 11, 9:44 pm, Donald B <bir...@comcast.net> wrote:
> > As a new contributor to this support group let me first say thankyou
> > for being here. I have been reading all the posts for the last several
> > weeks and found comfort through your shared knowledge of CRVO and your
> > individual experience with the challenges I am now faced with as a new
> > CRVO patient.
> > I am sixty four years old, in good health except for some slightly
> > high blood pressure I'm being treated for. I do treadmill workouts and
> > other forms of exercise, make wise choices in my diet for the most
> > part and supplement where I think I need it. After annual physicals
> > and blood work all my numbers are right where they should be and I
> > have never been treated for any acute physical problems. But, on
> > Sunday Jan. 15th I began to notice a slight blurring in my left eye.
> > It was a small area that was more of a nuisance than anything else. A
> > couple days later my vision got a little worse and I thought I had an
> > infection possibly caused by dust and dirt from the remodeling I was
> > doing on our house. By Fri.it wasn't any better so I made an
> > appointment with my OD for Monday and that's when I got the bad news.
> > He immediately made another appointment with an RS for the next day. I
> > was told I had a mild case of CRVO and that it was non-eschemic and to
> > come in for another checkup in 3 weeks or sooner if it got worse. It
> > did, so two weeks later I was back in the office getting the angio
> > workup, acuity test and OCT. My vision in the effected eye is down to
> > counting fingers and being able to identify shapes and objects; like
> > looking in a foggy mirror. I had my folder ready with questions and
> > concerns and information I gathered from the posts in this group and
> > other internet sites. You all made a big difference in the confidence
> > I carried into the exam room. At that point I was told edema was the
> > cause of swelling in the retina resulting in more vision problems.
> > After a lengthy discussion on various treatments and medications we
> > opted for an immediate injection of Lucentis. The entire process was
> > painless but there was considerable discomfort that night. After some
> > Advil and sleep the eye irritation was gone by morning. It's only been
> > 5 days since my treatment but I expected to see a little improvement
> > by now. I don't think my vision has gotten worse so maybe it's
> > stabilizing. I know every case is uniqe as is the treatment for CRVO
> > and vision accuity can get better or worse with time, but if someone
> > could again relate their experience using Lucentis for treatment it
> > would help. The RS said this is not a sprint but a marathon in terms
> > of any recovery I may have and to hang in there as many of you have
> > said. From your discussions I know there is nothing specific that can
> > be pointed to as the cause of this condition. But that's what scares
> > me. I'm afraid that anything I do or eat may damage my bad eye even
> > further or cause the same thing to happen in my good eye. This whole
> > thing is very disappointing and confusing to say the least but it's
> > encouraging to read about successes some of you have had through the
> > treatment path you and your RS have chosen. Maybe in time there will
> > be new discoveries for treating and managing CRVO's. That's what I'm
> > praying for so God Bless and thanks for listening. Donald.
> > As and after thought I forgot to mention that I had all the blood work
> > for vasculitis etc. etc. and it all came back negative as expected
> > from what I have read here.- Hide quoted text -
> Hi Kay, thanks for your reply. As for the blood work question I will > do my best to list what was tested in the ANA ( anti-nuclear- > antibodies ) screen, then you can ask your Internest or RS what they > mean or what is gathered in each froup. I hope this helps.
> On Feb 12, 5:47 am, Ardpatrick <ardpatrickl...@gmail.com> wrote: >> Hi Donald >> Sorry to hear you have CRVO, I know exactly what you are going through, as I was recently diagnosed recently with BRVO.
>> I was wondering what blood tests you had done to uncover vasculitis?
>> I've had a lot of tests as well All negative but just want to ensure I've had that tested.
>> Thanks
>> Kay
>> Sent from my iPhone
>> On 12 Feb 2012, at 03:44, Donald B <bir...@comcast.net> wrote:
>>> As a new contributor to this support group let me first say thankyou >>> for being here. I have been reading all the posts for the last several >>> weeks and found comfort through your shared knowledge of CRVO and your >>> individual experience with the challenges I am now faced with as a new >>> CRVO patient.
>>> I am sixty four years old, in good health except for some slightly >>> high blood pressure I'm being treated for. I do treadmill workouts and >>> other forms of exercise, make wise choices in my diet for the most >>> part and supplement where I think I need it. After annual physicals >>> and blood work all my numbers are right where they should be and I >>> have never been treated for any acute physical problems. But, on >>> Sunday Jan. 15th I began to notice a slight blurring in my left eye. >>> It was a small area that was more of a nuisance than anything else. A >>> couple days later my vision got a little worse and I thought I had an >>> infection possibly caused by dust and dirt from the remodeling I was >>> doing on our house. By Fri.it wasn't any better so I made an >>> appointment with my OD for Monday and that's when I got the bad news. >>> He immediately made another appointment with an RS for the next day. I >>> was told I had a mild case of CRVO and that it was non-eschemic and to >>> come in for another checkup in 3 weeks or sooner if it got worse. It >>> did, so two weeks later I was back in the office getting the angio >>> workup, acuity test and OCT. My vision in the effected eye is down to >>> counting fingers and being able to identify shapes and objects; like >>> looking in a foggy mirror. I had my folder ready with questions and >>> concerns and information I gathered from the posts in this group and >>> other internet sites. You all made a big difference in the confidence >>> I carried into the exam room. At that point I was told edema was the >>> cause of swelling in the retina resulting in more vision problems. >>> After a lengthy discussion on various treatments and medications we >>> opted for an immediate injection of Lucentis. The entire process was >>> painless but there was considerable discomfort that night. After some >>> Advil and sleep the eye irritation was gone by morning. It's only been >>> 5 days since my treatment but I expected to see a little improvement >>> by now. I don't think my vision has gotten worse so maybe it's >>> stabilizing. I know every case is uniqe as is the treatment for CRVO >>> and vision accuity can get better or worse with time, but if someone >>> could again relate their experience using Lucentis for treatment it >>> would help. The RS said this is not a sprint but a marathon in terms >>> of any recovery I may have and to hang in there as many of you have >>> said. From your discussions I know there is nothing specific that can >>> be pointed to as the cause of this condition. But that's what scares >>> me. I'm afraid that anything I do or eat may damage my bad eye even >>> further or cause the same thing to happen in my good eye. This whole >>> thing is very disappointing and confusing to say the least but it's >>> encouraging to read about successes some of you have had through the >>> treatment path you and your RS have chosen. Maybe in time there will >>> be new discoveries for treating and managing CRVO's. That's what I'm >>> praying for so God Bless and thanks for listening. Donald.
>>> As and after thought I forgot to mention that I had all the blood work >>> for vasculitis etc. etc. and it all came back negative as expected >>> from what I have read here.
>>> -- >>> You received this message because you are subscribed to the Google >>> Groups "Central Retinal Vein Occlusion Support" group. >>> To post to this group, send email to crvo-support@googlegroups.com >>> To unsubscribe from this group, send email to >>> crvo-support+unsubscribe@googlegroups.com >>> For more options, visit this group at >>> http://groups.google.com/group/crvo-support?hl=en >>> Remember: This discussion group is not managed by physicians. You should always consult your physician without delay before making medical decisions.- Hide quoted text -
>> - Show quoted text -
> -- > You received this message because you are subscribed to the Google > Groups "Central Retinal Vein Occlusion Support" group. > To post to this group, send email to crvo-support@googlegroups.com > To unsubscribe from this group, send email to > crvo-support+unsubscribe@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/crvo-support?hl=en > Remember: This discussion group is not managed by physicians. You should always consult your physician without delay before making medical decisions.
Hi all, This CRVO thing is weird. Had my first Avastin shot on Friday, Not too much trouble. Relatively painless. Eye irritated in the afternoon but all OK by following morning. Trying to keep my eye shut all day was the biggest problem. I've had a really busy weekend and not much time to concentrate on aftereffects. I would say that to date there are perhaps fewer grey translucent spots but more flickering lights - nothing really discernible.
I also had about two seconds to talk to the doctor...yes to aspirin. Mentioned that I had digestive problems and was due to have an endoscopy. Told me to take coated aspirin and put off the endoscopy if possible. At least I think that it what he said.... when I asked a confirmatory question (I was in the operating room) he was already gone!!!! Now about to talk to my GP to negotiate between the retina specialist and the gastric specialist about what I can do.
I will be back to see the Retina Specialist in four weeks but the lack of info is frustrating. I changed to this specialist from the first I saw because a number of people said he was the best in Sydney. The first specialist spent ages (too long I think!) explaining everything. The problem is she was not a retinal specialist and did not have the full equipment available.
Oh well, while my eye is still relatively good, I thank my lucky stars. I know that this may well deteriorate at any time, and I am prepared for it.
Donald, the reason I am now taking Aspirin is to protect my other eye. I have no prior history, except that in the last six months my cholesterol has spiked. So I am now on Lipitor. My GP suggests that it should go down quickly with the right diet and lipitor given that I have no previous history of high cholesterol. But I somehow feel a bit more confident with a bit of Aspirin in the blood.
I am obsessively reading about anti-inflammatory diets, low cholesterol diets etc. In combination with a diet to reduce gastric reflux, I am currently very boring at the dinner table.
This will be a life changing event for me. I am sure it will be for the best.
> Hi Donald. I'm glad you found the group and sad you had to. I think > we probably all worry incessantly about our 'other' eye. While there > are some suspected causes of RVO (high blood pressure, high > cholesterol, clotting problems), lots of us on this group don't have > these risk factors. I think for anyone who does, controlling these > things is something that you can do but that, other than these, we can > only hope the other eye stays well. I try to stay grateful for my > good eye so that I thank God for it every day. I can't quite stop > myself from adding a little plea that it stays that way.
> I've had 4 Avastin injections (5th coming up in 3 days - I count down > as one would to any ominous thing!), no Lucentis. My first shot > helped within hours - but my vision prior to the shot (2 months after > my BRVO) had gotten very bad before the shot with a big gray 'cloud' > covering the lower 2/3 or so of my vision. My vision did not get that > bad prior to my other shots and my improvement also was more subtle > from those shots.
> You sound healthy and active and I think you are doing great in > working to stay that way. Personally, I feel that anything I can do > to reduce my stress may help to reduce the chances of RVO in my good > eye so that's what I try to do. Others feel that hydration is > particularly important for them so they work at that. I think we all > just have to do the best we can and we also can't blame ourselves - > most of us never even heard of this odd and horrible thing before it > happened to us, so we certainly couldn't be expected to know what NOT > to do (especially since science can't even explain why it happened to > us). I encourage you to keep track of all your numbers (visual acuity > and central retinal thickness and eye pressures) as it helps you take > control of the condition. While your RS sounds good, it's always you > who will care the most about your condition and your care.
> Best wishes, > Marlys > BRVO April 2, 2011 at age 53 > 4 Avastin shots, 1 focal grid laser (56 burns) > Oklahoma, USA
> On Feb 11, 9:44 pm, Donald B <bir...@comcast.net> wrote: >> As a new contributor to this support group let me first say thankyou >> for being here. I have been reading all the posts for the last several >> weeks and found comfort through your shared knowledge of CRVO and your >> individual experience with the challenges I am now faced with as a new >> CRVO patient.
>> I am sixty four years old, in good health except for some slightly >> high blood pressure I'm being treated for. I do treadmill workouts and >> other forms of exercise, make wise choices in my diet for the most >> part and supplement where I think I need it. After annual physicals >> and blood work all my numbers are right where they should be and I >> have never been treated for any acute physical problems. But, on >> Sunday Jan. 15th I began to notice a slight blurring in my left eye. >> It was a small area that was more of a nuisance than anything else. A >> couple days later my vision got a little worse and I thought I had an >> infection possibly caused by dust and dirt from the remodeling I was >> doing on our house. By Fri.it wasn't any better so I made an >> appointment with my OD for Monday and that's when I got the bad news. >> He immediately made another appointment with an RS for the next day. I >> was told I had a mild case of CRVO and that it was non-eschemic and to >> come in for another checkup in 3 weeks or sooner if it got worse. It >> did, so two weeks later I was back in the office getting the angio >> workup, acuity test and OCT. My vision in the effected eye is down to >> counting fingers and being able to identify shapes and objects; like >> looking in a foggy mirror. I had my folder ready with questions and >> concerns and information I gathered from the posts in this group and >> other internet sites. You all made a big difference in the confidence >> I carried into the exam room. At that point I was told edema was the >> cause of swelling in the retina resulting in more vision problems. >> After a lengthy discussion on various treatments and medications we >> opted for an immediate injection of Lucentis. The entire process was >> painless but there was considerable discomfort that night. After some >> Advil and sleep the eye irritation was gone by morning. It's only been >> 5 days since my treatment but I expected to see a little improvement >> by now. I don't think my vision has gotten worse so maybe it's >> stabilizing. I know every case is uniqe as is the treatment for CRVO >> and vision accuity can get better or worse with time, but if someone >> could again relate their experience using Lucentis for treatment it >> would help. The RS said this is not a sprint but a marathon in terms >> of any recovery I may have and to hang in there as many of you have >> said. From your discussions I know there is nothing specific that can >> be pointed to as the cause of this condition. But that's what scares >> me. I'm afraid that anything I do or eat may damage my bad eye even >> further or cause the same thing to happen in my good eye. This whole >> thing is very disappointing and confusing to say the least but it's >> encouraging to read about successes some of you have had through the >> treatment path you and your RS have chosen. Maybe in time there will >> be new discoveries for treating and managing CRVO's. That's what I'm >> praying for so God Bless and thanks for listening. Donald.
>> As and after thought I forgot to mention that I had all the blood work >> for vasculitis etc. etc. and it all came back negative as expected >> from what I have read here.
> -- > You received this message because you are subscribed to the Google > Groups "Central Retinal Vein Occlusion Support" group. > To post to this group, send email to crvo-support@googlegroups.com > To unsubscribe from this group, send email to > crvo-support+unsubscribe@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/crvo-support?hl=en > Remember: This discussion group is not managed by physicians. You should always consult your physician without delay before making medical decisions.
I'm glad your Avastin shot went well. You should notice further
improvement over the next week to your CRVO eye.
The healthy low cholesterol diet is the way to go.
Kind regards,
Judy ( Melbourne )
On Feb 13, 11:08 am, Janet Clayton <janetclay...@me.com> wrote:
> Hi all,
> This CRVO thing is weird. Had my first Avastin shot on Friday, Not too much trouble. Relatively painless. Eye irritated in the afternoon but all OK by following morning. Trying to keep my eye shut all day was the biggest problem. I've had a really busy weekend and not much time to concentrate on aftereffects. I would say that to date there are perhaps fewer grey translucent spots but more flickering lights - nothing really discernible.
> I also had about two seconds to talk to the doctor...yes to aspirin. Mentioned that I had digestive problems and was due to have an endoscopy. Told me to take coated aspirin and put off the endoscopy if possible. At least I think that it what he said.... when I asked a confirmatory question (I was in the operating room) he was already gone!!!! Now about to talk to my GP to negotiate between the retina specialist and the gastric specialist about what I can do.
> I will be back to see the Retina Specialist in four weeks but the lack of info is frustrating. I changed to this specialist from the first I saw because a number of people said he was the best in Sydney. The first specialist spent ages (too long I think!) explaining everything. The problem is she was not a retinal specialist and did not have the full equipment available.
> Oh well, while my eye is still relatively good, I thank my lucky stars. I know that this may well deteriorate at any time, and I am prepared for it.
> Donald, the reason I am now taking Aspirin is to protect my other eye. I have no prior history, except that in the last six months my cholesterol has spiked. So I am now on Lipitor. My GP suggests that it should go down quickly with the right diet and lipitor given that I have no previous history of high cholesterol. But I somehow feel a bit more confident with a bit of Aspirin in the blood.
> I am obsessively reading about anti-inflammatory diets, low cholesterol diets etc. In combination with a diet to reduce gastric reflux, I am currently very boring at the dinner table.
> This will be a life changing event for me. I am sure it will be for the best.
> Kind regards,
> Janet (Sydney) 60
> On 13/02/2012, at 3:13 AM, Marlys L wrote:
> > Hi Donald. I'm glad you found the group and sad you had to. I think
> > we probably all worry incessantly about our 'other' eye. While there
> > are some suspected causes of RVO (high blood pressure, high
> > cholesterol, clotting problems), lots of us on this group don't have
> > these risk factors. I think for anyone who does, controlling these
> > things is something that you can do but that, other than these, we can
> > only hope the other eye stays well. I try to stay grateful for my
> > good eye so that I thank God for it every day. I can't quite stop
> > myself from adding a little plea that it stays that way.
> > I've had 4 Avastin injections (5th coming up in 3 days - I count down
> > as one would to any ominous thing!), no Lucentis. My first shot
> > helped within hours - but my vision prior to the shot (2 months after
> > my BRVO) had gotten very bad before the shot with a big gray 'cloud'
> > covering the lower 2/3 or so of my vision. My vision did not get that
> > bad prior to my other shots and my improvement also was more subtle
> > from those shots.
> > You sound healthy and active and I think you are doing great in
> > working to stay that way. Personally, I feel that anything I can do
> > to reduce my stress may help to reduce the chances of RVO in my good
> > eye so that's what I try to do. Others feel that hydration is
> > particularly important for them so they work at that. I think we all
> > just have to do the best we can and we also can't blame ourselves -
> > most of us never even heard of this odd and horrible thing before it
> > happened to us, so we certainly couldn't be expected to know what NOT
> > to do (especially since science can't even explain why it happened to
> > us). I encourage you to keep track of all your numbers (visual acuity
> > and central retinal thickness and eye pressures) as it helps you take
> > control of the condition. While your RS sounds good, it's always you
> > who will care the most about your condition and your care.
> > Best wishes,
> > Marlys
> > BRVO April 2, 2011 at age 53
> > 4 Avastin shots, 1 focal grid laser (56 burns)
> > Oklahoma, USA
> > On Feb 11, 9:44 pm, Donald B <bir...@comcast.net> wrote:
> >> As a new contributor to this support group let me first say thankyou
> >> for being here. I have been reading all the posts for the last several
> >> weeks and found comfort through your shared knowledge of CRVO and your
> >> individual experience with the challenges I am now faced with as a new
> >> CRVO patient.
> >> I am sixty four years old, in good health except for some slightly
> >> high blood pressure I'm being treated for. I do treadmill workouts and
> >> other forms of exercise, make wise choices in my diet for the most
> >> part and supplement where I think I need it. After annual physicals
> >> and blood work all my numbers are right where they should be and I
> >> have never been treated for any acute physical problems. But, on
> >> Sunday Jan. 15th I began to notice a slight blurring in my left eye.
> >> It was a small area that was more of a nuisance than anything else. A
> >> couple days later my vision got a little worse and I thought I had an
> >> infection possibly caused by dust and dirt from the remodeling I was
> >> doing on our house. By Fri.it wasn't any better so I made an
> >> appointment with my OD for Monday and that's when I got the bad news.
> >> He immediately made another appointment with an RS for the next day. I
> >> was told I had a mild case of CRVO and that it was non-eschemic and to
> >> come in for another checkup in 3 weeks or sooner if it got worse. It
> >> did, so two weeks later I was back in the office getting the angio
> >> workup, acuity test and OCT. My vision in the effected eye is down to
> >> counting fingers and being able to identify shapes and objects; like
> >> looking in a foggy mirror. I had my folder ready with questions and
> >> concerns and information I gathered from the posts in this group and
> >> other internet sites. You all made a big difference in the confidence
> >> I carried into the exam room. At that point I was told edema was the
> >> cause of swelling in the retina resulting in more vision problems.
> >> After a lengthy discussion on various treatments and medications we
> >> opted for an immediate injection of Lucentis. The entire process was
> >> painless but there was considerable discomfort that night. After some
> >> Advil and sleep the eye irritation was gone by morning. It's only been
> >> 5 days since my treatment but I expected to see a little improvement
> >> by now. I don't think my vision has gotten worse so maybe it's
> >> stabilizing. I know every case is uniqe as is the treatment for CRVO
> >> and vision accuity can get better or worse with time, but if someone
> >> could again relate their experience using Lucentis for treatment it
> >> would help. The RS said this is not a sprint but a marathon in terms
> >> of any recovery I may have and to hang in there as many of you have
> >> said. From your discussions I know there is nothing specific that can
> >> be pointed to as the cause of this condition. But that's what scares
> >> me. I'm afraid that anything I do or eat may damage my bad eye even
> >> further or cause the same thing to happen in my good eye. This whole
> >> thing is very disappointing and confusing to say the least but it's
> >> encouraging to read about successes some of you have had through the
> >> treatment path you and your RS have chosen. Maybe in time there will
> >> be new discoveries for treating and managing CRVO's. That's what I'm
> >> praying for so God Bless and thanks for listening. Donald.
> >> As and after thought I forgot to mention that I had all the blood work
> >> for vasculitis etc. etc. and it all came back negative as expected
> >> from what I have read here.
> > --
> > You received this message because you are subscribed to the Google
> > Groups "Central Retinal Vein Occlusion Support" group.
> > To post to this group, send email to crvo-support@googlegroups.com
> > To unsubscribe from this group, send email to
> > crvo-support+unsubscribe@googlegroups.com
> > For more options, visit this group at
> >http://groups.google.com/group/crvo-support?hl=en > > Remember: This discussion group is not managed by physicians. You should always consult your physician without delay before making medical decisions.
> Hi all,
> This CRVO thing is weird. Had my first Avastin shot on Friday, Not too much trouble. Relatively painless. Eye irritated in the afternoon but all OK by following morning. Trying to keep my eye shut all day was the biggest problem. I've had a really busy weekend and not much time to concentrate on aftereffects. I would say that to date there are perhaps fewer grey translucent spots but more flickering lights - nothing really discernible.
> I also had about two seconds to talk to the doctor...yes to aspirin. Mentioned that I had digestive problems and was due to have an endoscopy. Told me to take coated aspirin and put off the endoscopy if possible. At least I think that it what he said.... when I asked a confirmatory question (I was in the operating room) he was already gone!!!! Now about to talk to my GP to negotiate between the retina specialist and the gastric specialist about what I can do.
> I will be back to see the Retina Specialist in four weeks but the lack of info is frustrating. I changed to this specialist from the first I saw because a number of people said he was the best in Sydney. The first specialist spent ages (too long I think!) explaining everything. The problem is she was not a retinal specialist and did not have the full equipment available.
> Oh well, while my eye is still relatively good, I thank my lucky stars. I know that this may well deteriorate at any time, and I am prepared for it.
> Donald, the reason I am now taking Aspirin is to protect my other eye. I have no prior history, except that in the last six months my cholesterol has spiked. So I am now on Lipitor. My GP suggests that it should go down quickly with the right diet and lipitor given that I have no previous history of high cholesterol. But I somehow feel a bit more confident with a bit of Aspirin in the blood.
> I am obsessively reading about anti-inflammatory diets, low cholesterol diets etc. In combination with a diet to reduce gastric reflux, I am currently very boring at the dinner table.
> This will be a life changing event for me. I am sure it will be for the best.
> Kind regards,
> Janet (Sydney) 60
> On 13/02/2012, at 3:13 AM, Marlys L wrote:
> > Hi Donald. I'm glad you found the group and sad you had to. I think
> > we probably all worry incessantly about our 'other' eye. While there
> > are some suspected causes of RVO (high blood pressure, high
> > cholesterol, clotting problems), lots of us on this group don't have
> > these risk factors. I think for anyone who does, controlling these
> > things is something that you can do but that, other than these, we can
> > only hope the other eye stays well. I try to stay grateful for my
> > good eye so that I thank God for it every day. I can't quite stop
> > myself from adding a little plea that it stays that way.
> > I've had 4 Avastin injections (5th coming up in 3 days - I count down
> > as one would to any ominous thing!), no Lucentis. My first shot
> > helped within hours - but my vision prior to the shot (2 months after
> > my BRVO) had gotten very bad before the shot with a big gray 'cloud'
> > covering the lower 2/3 or so of my vision. My vision did not get that
> > bad prior to my other shots and my improvement also was more subtle
> > from those shots.
> > You sound healthy and active and I think you are doing great in
> > working to stay that way. Personally, I feel that anything I can do
> > to reduce my stress may help to reduce the chances of RVO in my good
> > eye so that's what I try to do. Others feel that hydration is
> > particularly important for them so they work at that. I think we all
> > just have to do the best we can and we also can't blame ourselves -
> > most of us never even heard of this odd and horrible thing before it
> > happened to us, so we certainly couldn't be expected to know what NOT
> > to do (especially since science can't even explain why it happened to
> > us). I encourage you to keep track of all your numbers (visual acuity
> > and central retinal thickness and eye pressures) as it helps you take
> > control of the condition. While your RS sounds good, it's always you
> > who will care the most about your condition and your care.
> > Best wishes,
> > Marlys
> > BRVO April 2, 2011 at age 53
> > 4 Avastin shots, 1 focal grid laser (56 burns)
> > Oklahoma, USA
> > On Feb 11, 9:44 pm, Donald B <bir...@comcast.net> wrote:
> >> As a new contributor to this support group let me first say thankyou
> >> for being here. I have been reading all the posts for the last several
> >> weeks and found comfort through your shared knowledge of CRVO and your
> >> individual experience with the challenges I am now faced with as a new
> >> CRVO patient.
> >> I am sixty four years old, in good health except for some slightly
> >> high blood pressure I'm being treated for. I do treadmill workouts and
> >> other forms of exercise, make wise choices in my diet for the most
> >> part and supplement where I think I need it. After annual physicals
> >> and blood work all my numbers are right where they should be and I
> >> have never been treated for any acute physical problems. But, on
> >> Sunday Jan. 15th I began to notice a slight blurring in my left eye.
> >> It was a small area that was more of a nuisance than anything else. A
> >> couple days later my vision got a little worse and I thought I had an
> >> infection possibly caused by dust and dirt from the remodeling I was
> >> doing on our house. By Fri.it wasn't any better so I made an
> >> appointment with my OD for Monday and that's when I got the bad news.
> >> He immediately made another appointment with an RS for the next day. I
> >> was told I had a mild case of CRVO and that it was non-eschemic and to
> >> come in for another checkup in 3 weeks or sooner if it got worse. It
> >> did, so two weeks later I was back in the office getting the angio
> >> workup, acuity test and OCT. My vision in the effected eye is down to
> >> counting fingers and being able to identify shapes and objects; like
> >> looking in a foggy mirror. I had my folder ready with questions and
> >> concerns and information I gathered from the posts in this group and
> >> other internet sites. You all made a big difference in the confidence
> >> I carried into the exam room. At that point I was told edema was the
> >> cause of swelling in the retina resulting in more vision problems.
> >> After a lengthy discussion on various treatments and medications we
> >> opted for an immediate injection of Lucentis. The entire process was
> >> painless but there was considerable discomfort that night. After some
> >> Advil and sleep the eye irritation was gone by morning. It's only been
> >> 5 days since my treatment but I expected to see a little improvement
> >> by now. I don't think my vision has gotten worse so maybe it's
> >> stabilizing. I know every case is uniqe as is the treatment for CRVO
> >> and vision accuity can get better or worse with time, but if someone
> >> could again relate their experience using Lucentis for treatment it
> >> would help. The RS said this is not a sprint but a marathon in terms
> >> of any recovery I may have and to hang in there as many of you have
> >> said. From your discussions I know there is nothing specific that can
> >> be pointed to as the cause of this condition. But that's what scares
> >> me. I'm afraid that anything I do or eat may damage my bad eye even
> >> further or cause the same thing to happen in my good eye. This whole
> >> thing is very disappointing and confusing to say the least but it's
> >> encouraging to read about successes some of you have had through the
> >> treatment path you and your RS have chosen. Maybe in time there will
> >> be new discoveries for treating and managing CRVO's. That's what I'm
> >> praying for so God Bless and thanks for listening. Donald.
> >> As and after thought I forgot to mention that I had all the blood work
> >> for vasculitis etc. etc. and it all came back negative as expected
> >> from what I have read here.
> > --
> > You received this message because you are subscribed to the Google
> > Groups "Central Retinal Vein Occlusion Support" group.
> > To post to this group, send email to crvo-support@googlegroups.com
> > To unsubscribe from this group, send email to
> > crvo-support+unsubscribe@googlegroups.com
> > For more options, visit this group at
> >http://groups.google.com/group/crvo-support?hl=en > > Remember: This discussion group is not managed by physicians. You should always consult your physician without delay before making medical decisions.
> I'm glad your Avastin shot went well. You should notice further > improvement over the next week to your CRVO eye. > The healthy low cholesterol diet is the way to go.
> Kind regards,
> Judy ( Melbourne )
> On Feb 13, 11:08 am, Janet Clayton <janetclay...@me.com> wrote: >> Hi all, >> This CRVO thing is weird. Had my first Avastin shot on Friday, Not too much trouble. Relatively painless. Eye irritated in the afternoon but all OK by following morning. Trying to keep my eye shut all day was the biggest problem. I've had a really busy weekend and not much time to concentrate on aftereffects. I would say that to date there are perhaps fewer grey translucent spots but more flickering lights - nothing really discernible.
>> I also had about two seconds to talk to the doctor...yes to aspirin. Mentioned that I had digestive problems and was due to have an endoscopy. Told me to take coated aspirin and put off the endoscopy if possible. At least I think that it what he said.... when I asked a confirmatory question (I was in the operating room) he was already gone!!!! Now about to talk to my GP to negotiate between the retina specialist and the gastric specialist about what I can do.
>> I will be back to see the Retina Specialist in four weeks but the lack of info is frustrating. I changed to this specialist from the first I saw because a number of people said he was the best in Sydney. The first specialist spent ages (too long I think!) explaining everything. The problem is she was not a retinal specialist and did not have the full equipment available.
>> Oh well, while my eye is still relatively good, I thank my lucky stars. I know that this may well deteriorate at any time, and I am prepared for it.
>> Donald, the reason I am now taking Aspirin is to protect my other eye. I have no prior history, except that in the last six months my cholesterol has spiked. So I am now on Lipitor. My GP suggests that it should go down quickly with the right diet and lipitor given that I have no previous history of high cholesterol. But I somehow feel a bit more confident with a bit of Aspirin in the blood.
>> I am obsessively reading about anti-inflammatory diets, low cholesterol diets etc. In combination with a diet to reduce gastric reflux, I am currently very boring at the dinner table.
>> This will be a life changing event for me. I am sure it will be for the best.
>> Kind regards,
>> Janet (Sydney) 60
>> On 13/02/2012, at 3:13 AM, Marlys L wrote:
>>> Hi Donald. I'm glad you found the group and sad you had to. I think >>> we probably all worry incessantly about our 'other' eye. While there >>> are some suspected causes of RVO (high blood pressure, high >>> cholesterol, clotting problems), lots of us on this group don't have >>> these risk factors. I think for anyone who does, controlling these >>> things is something that you can do but that, other than these, we can >>> only hope the other eye stays well. I try to stay grateful for my >>> good eye so that I thank God for it every day. I can't quite stop >>> myself from adding a little plea that it stays that way.
>>> I've had 4 Avastin injections (5th coming up in 3 days - I count down >>> as one would to any ominous thing!), no Lucentis. My first shot >>> helped within hours - but my vision prior to the shot (2 months after >>> my BRVO) had gotten very bad before the shot with a big gray 'cloud' >>> covering the lower 2/3 or so of my vision. My vision did not get that >>> bad prior to my other shots and my improvement also was more subtle >>> from those shots.
>>> You sound healthy and active and I think you are doing great in >>> working to stay that way. Personally, I feel that anything I can do >>> to reduce my stress may help to reduce the chances of RVO in my good >>> eye so that's what I try to do. Others feel that hydration is >>> particularly important for them so they work at that. I think we all >>> just have to do the best we can and we also can't blame ourselves - >>> most of us never even heard of this odd and horrible thing before it >>> happened to us, so we certainly couldn't be expected to know what NOT >>> to do (especially since science can't even explain why it happened to >>> us). I encourage you to keep track of all your numbers (visual acuity >>> and central retinal thickness and eye pressures) as it helps you take >>> control of the condition. While your RS sounds good, it's always you >>> who will care the most about your condition and your care.
>>> Best wishes, >>> Marlys >>> BRVO April 2, 2011 at age 53 >>> 4 Avastin shots, 1 focal grid laser (56 burns) >>> Oklahoma, USA
>>> On Feb 11, 9:44 pm, Donald B <bir...@comcast.net> wrote: >>>> As a new contributor to this support group let me first say thankyou >>>> for being here. I have been reading all the posts for the last several >>>> weeks and found comfort through your shared knowledge of CRVO and your >>>> individual experience with the challenges I am now faced with as a new >>>> CRVO patient.
>>>> I am sixty four years old, in good health except for some slightly >>>> high blood pressure I'm being treated for. I do treadmill workouts and >>>> other forms of exercise, make wise choices in my diet for the most >>>> part and supplement where I think I need it. After annual physicals >>>> and blood work all my numbers are right where they should be and I >>>> have never been treated for any acute physical problems. But, on >>>> Sunday Jan. 15th I began to notice a slight blurring in my left eye. >>>> It was a small area that was more of a nuisance than anything else. A >>>> couple days later my vision got a little worse and I thought I had an >>>> infection possibly caused by dust and dirt from the remodeling I was >>>> doing on our house. By Fri.it wasn't any better so I made an >>>> appointment with my OD for Monday and that's when I got the bad news. >>>> He immediately made another appointment with an RS for the next day. I >>>> was told I had a mild case of CRVO and that it was non-eschemic and to >>>> come in for another checkup in 3 weeks or sooner if it got worse. It >>>> did, so two weeks later I was back in the office getting the angio >>>> workup, acuity test and OCT. My vision in the effected eye is down to >>>> counting fingers and being able to identify shapes and objects; like >>>> looking in a foggy mirror. I had my folder ready with questions and >>>> concerns and information I gathered from the posts in this group and >>>> other internet sites. You all made a big difference in the confidence >>>> I carried into the exam room. At that point I was told edema was the >>>> cause of swelling in the retina resulting in more vision problems. >>>> After a lengthy discussion on various treatments and medications we >>>> opted for an immediate injection of Lucentis. The entire process was >>>> painless but there was considerable discomfort that night. After some >>>> Advil and sleep the eye irritation was gone by morning. It's only been >>>> 5 days since my treatment but I expected to see a little improvement >>>> by now. I don't think my vision has gotten worse so maybe it's >>>> stabilizing. I know every case is uniqe as is the treatment for CRVO >>>> and vision accuity can get better or worse with time, but if someone >>>> could again relate their experience using Lucentis for treatment it >>>> would help. The RS said this is not a sprint but a marathon in terms >>>> of any recovery I may have and to hang in there as many of you have >>>> said. From your discussions I know there is nothing specific that can >>>> be pointed to as the cause of this condition. But that's what scares >>>> me. I'm afraid that anything I do or eat may damage my bad eye even >>>> further or cause the same thing to happen in my good eye. This whole >>>> thing is very disappointing and confusing to say the least but it's >>>> encouraging to read about successes some of you have had through the >>>> treatment path you and your RS have chosen. Maybe in time there will >>>> be new discoveries for treating and managing CRVO's. That's what I'm >>>> praying for so God Bless and thanks for listening. Donald.
>>>> As and after thought I forgot to mention that I had all the blood work >>>> for vasculitis etc. etc. and it all came back negative as expected >>>> from what I have read here.
>>> -- >>> You received this message because you are subscribed to the Google >>> Groups "Central Retinal Vein Occlusion Support" group. >>> To post to this group, send email to crvo-support@googlegroups.com >>> To unsubscribe from this group, send email to >>> crvo-support+unsubscribe@googlegroups.com >>> For more options, visit this group at >>> http://groups.google.com/group/crvo-support?hl=en >>> Remember: This discussion group is not managed by physicians. You should always consult your physician without delay before making medical decisions.
> -- > You received this message because you are subscribed to the Google > Groups "Central Retinal Vein Occlusion Support" group. > To post to this group, send email to crvo-support@googlegroups.com > To unsubscribe from this group, send email to > crvo-support+unsubscribe@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/crvo-support?hl=en > Remember: This discussion group is not managed by physicians. You should always consult your physician without delay before making medical decisions.
First of all, let me say I'm sorry this had to happen to you as I am
for all of us in this group.
Apparantly , A lot of us have no idea what caused this condition for
sure. I, on the other
hand, know exactly what went wrong. A severe chokeing and sneezing
attack put a really
bad strain on the right side of my head to the point that I felt like
my right eye was going
to pop out. I went for the exams the tests the shots and the whole bit
most of us did.
When my RS showed me the pictures of the inside of my eye, I was
stunned to see the
difference between the two eyes. You know the part in the eye that
looks like a little ' V ' and
has something to do with light refraction or reflection ? Well mine
looked like "Pikes Peak"
or Mt. St.Helen in comparision to the good eye. And the veins in my
bad eye looked like
the Amazon, Nile and Tiber Rivers, to compare. Well on my 3rd visit he
showed me the new pics
and the swelling went down considerably . In my video, I show what I
saw from day one to the worst
as it was. My RS said he can fix this but it will take 6 months to a
year before I get most of my
vision back to almost normal and maybe normal.
Now , I'm just wondering how many of us KNOW the CAUSE of thier CRVO ?
Am I the Unfortunate Lucky One who knows the reason as to what happend
and cause.
I am 62 and soon to be 63 in April. I was a body builder in the 60's
{with my cousin who
went on to take title of " Mr. New Jersey"} and I'm still in pretty
good health today.
Thanks to Steve Reeves "Hercules".. lol
Anyway Don, Wishing you all the best,
Your Friend,
Don De Bo in Florida
I love to write, just wish I can Spell.... LOL !
On Feb 11, 9:44 pm, Donald B <bir...@comcast.net> wrote:
> As a new contributor to this support group let me first say thankyou
> for being here. I have been reading all the posts for the last several
> weeks and found comfort through your shared knowledge of CRVO and your
> individual experience with the challenges I am now faced with as a new
> CRVO patient.
> I am sixty four years old, in good health except for some slightly
> high blood pressure I'm being treated for. I do treadmill workouts and
> other forms of exercise, make wise choices in my diet for the most
> part and supplement where I think I need it. After annual physicals
> and blood work all my numbers are right where they should be and I
> have never been treated for any acute physical problems. But, on
> Sunday Jan. 15th I began to notice a slight blurring in my left eye.
> It was a small area that was more of a nuisance than anything else. A
> couple days later my vision got a little worse and I thought I had an
> infection possibly caused by dust and dirt from the remodeling I was
> doing on our house. By Fri.it wasn't any better so I made an
> appointment with my OD for Monday and that's when I got the bad news.
> He immediately made another appointment with an RS for the next day. I
> was told I had a mild case of CRVO and that it was non-eschemic and to
> come in for another checkup in 3 weeks or sooner if it got worse. It
> did, so two weeks later I was back in the office getting the angio
> workup, acuity test and OCT. My vision in the effected eye is down to
> counting fingers and being able to identify shapes and objects; like
> looking in a foggy mirror. I had my folder ready with questions and
> concerns and information I gathered from the posts in this group and
> other internet sites. You all made a big difference in the confidence
> I carried into the exam room. At that point I was told edema was the
> cause of swelling in the retina resulting in more vision problems.
> After a lengthy discussion on various treatments and medications we
> opted for an immediate injection of Lucentis. The entire process was
> painless but there was considerable discomfort that night. After some
> Advil and sleep the eye irritation was gone by morning. It's only been
> 5 days since my treatment but I expected to see a little improvement
> by now. I don't think my vision has gotten worse so maybe it's
> stabilizing. I know every case is uniqe as is the treatment for CRVO
> and vision accuity can get better or worse with time, but if someone
> could again relate their experience using Lucentis for treatment it
> would help. The RS said this is not a sprint but a marathon in terms
> of any recovery I may have and to hang in there as many of you have
> said. From your discussions I know there is nothing specific that can
> be pointed to as the cause of this condition. But that's what scares
> me. I'm afraid that anything I do or eat may damage my bad eye even
> further or cause the same thing to happen in my good eye. This whole
> thing is very disappointing and confusing to say the least but it's
> encouraging to read about successes some of you have had through the
> treatment path you and your RS have chosen. Maybe in time there will
> be new discoveries for treating and managing CRVO's. That's what I'm
> praying for so God Bless and thanks for listening. Donald.
> As and after thought I forgot to mention that I had all the blood work
> for vasculitis etc. etc. and it all came back negative as expected
> from what I have read here.
