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Pat W  
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 More options Feb 12, 5:31 pm
From: Pat W <rbpcw...@gmail.com>
Date: Sun, 12 Feb 2012 14:31:36 -0800 (PST)
Local: Sun, Feb 12 2012 5:31 pm
Subject: Looking for advice
Hi. Three weeks ago today I awakened to realize that I had a cloud in
front of my right eye - couldn't see my own eyes when I looked with
just my right eye. I saw a Retinalogist a few days later, was
diagnosed with CRVO with Macular Swelling, and had a Lucentis
injection in my eye.

I've always been like "The Energizer Bunny" or "The Little Engine that
Could" - meeting new problems and handling them well. But this one is
a real challenge, as all of you definitely do know!!

I'd really appreciate your advice. From my fast research since that
day, I understand that each of us has a diferent experience with this,
and our outcomes will vary. I've now found and joined this group, and
am finding previous posts to be very helpful

Could you give me some guidance in how to handle ordinary day-to-day
issues? For instance, to use the computer (which has been a big part
of my day) or watch TV (ditto) or read (double ditto) - does it help
to close the affected eye and look with only the good eye? Would an
eye patch help? (I bought one but cannot use the shaped kind with my
reading glasses for my other eye.)

I'd like to learn from your experience, as I join you in facing this
unexpected problem. Any suggestions, advice?

Pat


 
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De Bo  
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 More options Feb 12, 6:42 pm
From: De Bo <de_b...@hotmail.com>
Date: Sun, 12 Feb 2012 15:42:34 -0800 (PST)
Local: Sun, Feb 12 2012 6:42 pm
Subject: Re: Looking for advice
Thanks Pat,

I just read your post and { unfourtuneatly } welcome to the group !
I can't tell what to do but I was told "Do NOT Wear an Eye Patch..!!!
but also do not strain your bad eye for TV ,Reading or looking at
anything bright for long periods of time. Sorry this had to happen
 to you as I am sorry for all of us in this group.  Hang in there my
friend..
Things do get better ...!  Read the Do's and Dont's and Smile, OK?

Your Pal,
De Bo ;-)

On Feb 12, 4:31 pm, Pat W <rbpcw...@gmail.com> wrote:


 
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Pat W  
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 More options Feb 12, 7:14 pm
From: Pat W <rbpcw...@gmail.com>
Date: Sun, 12 Feb 2012 16:14:05 -0800 (PST)
Local: Sun, Feb 12 2012 7:14 pm
Subject: Re: Looking for advice
Thanks, De Bo.

I'll admit - this is tough. I appreciate your encouragement  and
support! I am sorry for everyone, too.

I wondered about the Eye Patch, whether it could cause that eye to go
completely blind. And that would be even worse! I won't ever consider
the eye patch idea again. (But the world certainly does look weird
right now when I look with both eyes.)

Thank you! I did read and enjoy your Do's and Dont's. And I'll keep on
smiling. . . :)

Pat W

On Feb 12, 4:42 pm, De Bo <de_b...@hotmail.com> wrote:


 
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Wormie  
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 More options Feb 12, 7:43 pm
From: Wormie <peachyw...@gmail.com>
Date: Sun, 12 Feb 2012 16:43:12 -0800 (PST)
Local: Sun, Feb 12 2012 7:43 pm
Subject: Re: Looking for advice
Before my first shot I did wear an eye patch to read, watch tv and
work on the computer.  I had to wear one at work to be productive.
I did ask my eye disease specialist and my RV about it, and they both
said that wearing an eye patch was fine and that it would not damage
my good eye.
I found the patch allowed me to do a lot that I otherwise was not able
to do.

It did look and feel very silly with my reading glasses.  The doctor
suggested that when I needed to wear the reading glasses, I could
stick a tissue behind the lens to act as a patch.  It looks silly, but
it worked fine.

Since my shot I am finally able to read without the patch (can't read
with the bad eye, but it no longer interferes with my ability to read
with both eyes).

I'm not sure why other doctors advise not to use a patch, but mine was
a lifesaver and was approved by both my docs.

Good luck!!!

Delia
Indiana, USA

On Feb 12, 7:14 pm, Pat W <rbpcw...@gmail.com> wrote:


 
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Pat W  
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 More options Feb 12, 10:49 pm
From: Pat W <rbpcw...@gmail.com>
Date: Sun, 12 Feb 2012 19:49:41 -0800 (PST)
Local: Sun, Feb 12 2012 10:49 pm
Subject: Re: Looking for advice
Thanks,  Delia.

It's great to find out different approaches by different doctors. And
thanks, again, De Bo.

 And it's obvious that this is a group of caring,helpful people - new
friends. It's nice to not feel so alone with this problem.

I'd welcome any ideas on ways to adjust to this vision change.

Pat W

On Feb 12, 5:43 pm, Wormie <peachyw...@gmail.com> wrote:


 
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Carol (London)  
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 More options Feb 13, 1:49 am
From: "Carol (London)" <caroljwell...@gmail.com>
Date: Sun, 12 Feb 2012 22:49:54 -0800 (PST)
Local: Mon, Feb 13 2012 1:49 am
Subject: Re: Looking for advice
You've raised an issue, Pat, that leads you straight into the quagmire
of conflicting advice we CRVO patients find on far too many subjects.
A patch? One RS says yes, another no. Aspirin? Same thing. Should you
risk laser damage to peripheral vision in order to stop leaking
vessels? Depends on whom you ask.

That's why this support group is so helpful. One of us asks a question
and the answers reflect the opinions of many specialists. Then you can
take that information back to your RS to make an informed decision.

Anyway . . . the usual bittersweet welcome to this forum. We're
delighted to have you but sorry you need to be here.

Carol (London/Jakarta)

On Feb 13, 10:49 am, Pat W <rbpcw...@gmail.com> wrote:


 
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Marlys L  
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 More options Feb 14, 3:12 pm
From: Marlys L <chick...@gmail.com>
Date: Tue, 14 Feb 2012 12:12:50 -0800 (PST)
Local: Tues, Feb 14 2012 3:12 pm
Subject: Re: Looking for advice
Hi Pat and I'm so sorry you had to join our gang.  :-(  But we are
glad to meet you and to tell you our experiences.

My RS does not tell me to do or not do anything.  Anything I ask, he
just says it won't matter.  So I've not been told not to wear an eye
patch or read or anything else (he doesn't believe aspirin or other
anti-inflammatories matter, either).  A few weeks into my BRVO, I
could no longer read or see faces with both eyes open.  I got some big
magnifying sheets to put over pages to read as I'm a professor and I
have to read a lot.  When at home, I'd cover one eye (put a sock
behind the lens of my glasses for my bad eye, ha ha) so I could read
but at work, I just did what I could with very poor vision.  After
Avastin, I am able to read without the magnifier.  For the computer, I
do two things.  I have some computer glasses which are like reading
glasses but full size and for the distance from a computer screen.
Also I increase the size of everything on my screen by pressing
control and the plus key simultaneously.  Sometimes I have to blow the
size up a lot to be able to read it and it does affect how things look
on the screen but I am not willing to strain to try to read the small
fonts.  I also learned that documents in Adobe Acrobat can even be
read aloud by the program so you can just follow along or listen.  I
also looked into a lot of products used by blind people (just google
something like low vision aids) and that's were I got the magnifying
sheets, for example.  I also brought some products to learn braille
because I worry so much about losing the other eye (I'm one of those
people who wants to plan for any outcome - of course, I'd never heard
of this one, ha).

Faces were a terrible problem for me for the first couple of months
until I got my first shot.  Since I teach, I really need to see the
students' faces to assess how they are doing and to call on people in
class.  It was pretty much impossible for a while.  I told the
students - if you think I'm winking at you, I'm not, I'm just having a
problem with my vision, I'll let you know if I'm winking at you.
Fortunately, the shots give me back most of the face so I am able to
manage.  Actually, the way I can tell I'm needing a shot is by how
much of my face I can see in the mirror with my bad eye.

Best of luck, Pat.
-Marlys
BRVO April 2, 2011 at age 53
4 Avastin shots (scheduled for #5 tomorrow), 1 focal grid laser (56
burns)
Oklahoma, USA

On Feb 12, 4:31 pm, Pat W <rbpcw...@gmail.com> wrote:


 
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Carol (London)  
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 More options Feb 15, 4:53 am
From: "Carol (London)" <caroljwell...@gmail.com>
Date: Wed, 15 Feb 2012 01:53:39 -0800 (PST)
Local: Wed, Feb 15 2012 4:53 am
Subject: Re: Looking for advice
Marlys's tip for enlarging type on the computer screen is incredibly
handy. You can toggle regularly between that and control - to adjust
the size of texts you're trying to read. Here's a note I put up last
spring on installing a permanent + and - on Firefox:

"Then, in the latest version of Firefox, he [my husband] went to View/
Toolbars/
Customize and dragged the "zoom" icon that appeared up to the upper
right of toolbar. I now have + and - buttons that I can click on at
will. So easy and so useful."

Carol (London/Jakarta)

On Feb 15, 3:12 am, Marlys L <chick...@gmail.com> wrote:


 
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Carol (London)  
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 More options Feb 15, 8:21 am
From: "Carol (London)" <caroljwell...@gmail.com>
Date: Wed, 15 Feb 2012 05:21:32 -0800 (PST)
Local: Wed, Feb 15 2012 8:21 am
Subject: Re: Looking for advice
Synchronicity, Marlys. You mentioned braille earlier today and my
husband just sent me this link. An extraordinary device. Be sure to
watch the short demonstration video.

http://www.guardian.co.uk/society/2012/feb/14/technology-brings-brail...

Carol (London/Jakarta)

On Feb 15, 3:12 am, Marlys L <chick...@gmail.com> wrote:


 
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Pat W  
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 More options Feb 15, 8:44 pm
From: Pat W <rbpcw...@gmail.com>
Date: Wed, 15 Feb 2012 17:44:13 -0800 (PST)
Local: Wed, Feb 15 2012 8:44 pm
Subject: Re: Looking for advice
All of your ideas and suggestions are wonderful.

And best of all is the sense of camaraderie within this group! I never
knew that his problem exists - and now I really feel that we are all
in this together.

The miles may be distant, but it's very clear that there is a caring
closeness among the members.

Thank you all!

Pat
(In Arizona)

On Feb 15, 6:21 am, "Carol (London)" <caroljwell...@gmail.com> wrote:


 
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Janet Clayton  
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 More options Feb 19, 4:22 am
From: Janet Clayton <janetclay...@me.com>
Date: Sun, 19 Feb 2012 01:22:02 -0800 (PST)
Local: Sun, Feb 19 2012 4:22 am
Subject: Re: Looking for advice
Well, it is nine days since my first Avastin injection and all is
going well.  My eyesight has improved, fewer grey spots, eye not as
irritated.  Still getting light flashes moving from dark to light or
vice versa but they disappear very quickly.  Colour has returned
pretty well fully.   Just had a CT scan... results all clear. So the
cause of the thing is not a tumour and I am not in imminent danger, it
seems, of a stroke.

Thanks everyone for all your help and support.... I really look
forward to the daily contributions.  I'm on the lookout now for big
sunglasses!

Janet  Sydney 60

On Feb 13, 9:31 am, Pat W <rbpcw...@gmail.com> wrote:


 
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De Bo  
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 More options Feb 19, 4:51 pm
From: De Bo <de_b...@hotmail.com>
Date: Sun, 19 Feb 2012 13:51:42 -0800 (PST)
Local: Sun, Feb 19 2012 4:51 pm
Subject: Re: Looking for advice
Hey Janet  -Sydney-

Just wondering as to what degree of vision you are at?
Did you see the You-Tube Video?  If Not, Here is the link below....

http://www.youtube.com/watch?v=aw-L9H8Ju3A

Thanks,
 De Bo in Fla.

On Feb 19, 3:22 am, Janet Clayton <janetclay...@me.com> wrote:


 
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Janet Clayton  
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 More options Feb 19, 10:36 pm
From: Janet Clayton <janetclay...@me.com>
Date: Mon, 20 Feb 2012 14:36:36 +1100
Local: Sun, Feb 19 2012 10:36 pm
Subject: Re: [CRVO] Looking for advice
My vision has never been as bad as any of the images in your video.   Probably about 12-15%% of my right eye has small grey clouds which are translucent... I can see through them.  Since the Avastin,  they are even more translucent.   My visual acuity tests are perfect because I can see around and through the shadows.   Because my left eye is dominant, I really do not notice it unless I close my eye.  In the mornings I have had a heavy grey cloud over my right eye.... I can still see through it.  It takes two to three minutes to dissipate.  Since the Avastin, I scarcely notice any difference in the morning.

The main continuing symptom is these light effects.   I wish I had the facility with photoshop to show you.  If I move from dark to light, or light to dark, or drop my head for a period, or over exert myself, in about half my right eye I get a sensation similar to if a camera flash blinds you.  They are moving spots, or waves, of bright liquid light with coloured edges that float in my eye.  If I close my eyes and focus on these lights, they drop away to the bottom or inside of my eye and disappear within a minute.

Before the Avastin, I was also getting  pinprick flashes of coloured light when I closed my eyes.... like the little lights you get with a peripheral vision test.  These have virtually gone.

Thanks so much, by the way, for the video.   I have used it many times to show people, underlining that my case is not as severe as any.

Kind regards,

Janet  Sydney 60

On 20/02/2012, at 8:51 AM, De Bo wrote:


 
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Janet Clayton  
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 More options Feb 19, 10:51 pm
From: Janet Clayton <janetclay...@me.com>
Date: Mon, 20 Feb 2012 14:51:46 +1100
Local: Sun, Feb 19 2012 10:51 pm
Subject: Re: [CRVO] Looking for advice
I should have added that sometimes the light effects are much gentler than those that I have described.  It is as if I am looking through a liquid at the bottom of the eye, which quickly drains away...

That's completely exhausted my descriptive powers!

Kind regards,

Janet Sydney 60
On 20/02/2012, at 2:36 PM, Janet Clayton wrote:


 
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De Bo  
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 More options Feb 19, 11:03 pm
From: De Bo <de_b...@hotmail.com>
Date: Sun, 19 Feb 2012 20:03:38 -0800 (PST)
Local: Sun, Feb 19 2012 11:03 pm
Subject: Re: Looking for advice
Thanks Janet for getting back to me.. Now I can only hope that soon I
will be able to progress to where you are in sight. I too am getting
the flashes and such but lately , not so much!  A little nervous about
the next set of shots coming the 29th of this month !   I will keep
you informed to my progress...

De Bo  in Fla.

On Feb 19, 9:36 pm, Janet Clayton <janetclay...@me.com> wrote:


 
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Marlys L  
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 More options Feb 21, 5:36 pm
From: Marlys L <chick...@gmail.com>
Date: Tue, 21 Feb 2012 14:36:32 -0800 (PST)
Local: Tues, Feb 21 2012 5:36 pm
Subject: Re: Looking for advice
These light effects are really interesting - must be very
disconcerting too.  Since my focal grid laser, I am able to see the
pattern of dots of light where the doctor burned - but only when I
quickly open and close my eyes just after waking.  Isn't that weird??
I think it's so strange how our eyes are so affected somehow by a
night's sleep.  I told the RS about the pattern of dots and he said it
will fade away after a while (my laser was Dec. 1 so 2.5 months ago)
but it doesn't bother me, I actually find it really fascinating to
see.  I always wish I could kind of hold it in my vision just long
enough to count the dots to see if it really is 56, ha ha.  Did I
mention I'm an accounting professor?  Who else would want to count
these dots?!
-Marlys
BRVO April 2, 2011 at age 53
4 Avastin shots, 1 focal grid laser (56 burns)
Oklahoma, USA

On Feb 19, 9:51 pm, Janet Clayton <janetclay...@me.com> wrote:


 
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