Retinal Vein Occlusion

Wilson2009

Distinguished member
Joined
May 4, 2017
Messages
223
Reason
PALS
Diagnosis
01/2017
Country
US
State
KS
City
Lenexa
About a month ago I noticed that the vision in my right eye had been reduced significantly. While parts of the field of vision were clear, the majority of the field was cloudy with the inability to distinguish any detail. Yesterday, the OD at the VA determined that I had RVO in the right eye (More info here). They are sending me to a Retinal specialist who will begin administering injections into the eye that I may need every few months for the rest of my life. I know, I know. I will finally get that 'poke in the eye with a sharp stick'. According to the OD, this is not a full-blown RVO as I have some clear vision in the eye. Rather it is a partial or 'Hemi' leak. No idea when this actually started as unless I cover my left eye, I do not notice the vision being degraded in my right eye.

Anyway, I have two questions based on what I have read about RVO on Dr. Google and what the OD explained are the classic causes of RVO.

1. Has anyone heard of a PALS developing RVO post-ALS diagnosis?

2. Has any PALS who has received Radicava had any eye issues that were caused by RVO? I ask because of the significant bruising that occurred during the last three of my 22 full cycles of Radicava. I am probably grasping at straws trying to figure out why this occurred without presenting with any of the classic causes of RVO. While I stopped 18 months ago, I sometimes feel that it is the gift that keeps on giving.
 

mpnatx

Distinguished member
Joined
Aug 5, 2014
Messages
367
Reason
PALS
Diagnosis
11/2014
Country
US
State
Texas
City
Austin
Sorry to hear about your RVO. About five months ago, I had a sudden change in vision. My right eye became blurry with distortion and a dark spot in central vision. I was immediately referred to a Retina Specialist. Another specialist! He diagnosed me with age related wet macular degeneration. Blood leakage. Sounds like the opposite of RVO.

The specialist began monthly eye injections of Eyelea. Four so far. It sounds horrific and scary. But It's quick and fairly painless. My vision has slightly improved, however the injections are ongoing to prevent further damage and recurrence.
I have not taken Radicava.
Best of luck to you!
 

Wilson2009

Distinguished member
Joined
May 4, 2017
Messages
223
Reason
PALS
Diagnosis
01/2017
Country
US
State
KS
City
Lenexa
I sam the retina specialist yesterday. The official diagnosis is Macular Edema following Retinal Vein Occlusion (RVO). First treatment was administered yesterday and I have to return once a month for at least six months.

Marty, I am getting Eyelea as well. The comparison pictures between my good eye and the bad one was kind of scary. Keeping my fingers crossed that the shots will bring back most of my vision in the right eye.
 

mpnatx

Distinguished member
Joined
Aug 5, 2014
Messages
367
Reason
PALS
Diagnosis
11/2014
Country
US
State
Texas
City
Austin
Glad you saw the RS. I began seeing improvement after two or three treatments. They'll take pics each time to track progress.
Went for my fourth last week and he said we can skip this month! You're eye may be a little sore for a day or two, but shouldn't be too bad. More like discomfort. Did he recommend or give you eye drops? Helps with irritation you may have.
Good luck!
Marty
 

KimT

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Joined
Nov 18, 2014
Messages
4,080
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Dave, A lady (86) in my building had your condition and also had the injections. She noticed very good improvement after the second and third injections. A year has passed and her vision has not deteriorated from its improvements.
 

Wilson2009

Distinguished member
Joined
May 4, 2017
Messages
223
Reason
PALS
Diagnosis
01/2017
Country
US
State
KS
City
Lenexa
Marty, they gave me drops to use before I left. Had to use them a few times on Wednesday, but only once yesterday. It was more discomfort than pain or soreness. They really put your eye through a workout to get all the pictures they need.

Thanks for the info, Kim.
 
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