Scintillating Scotoma since open heart surgery.

[Lucyannie]

Hello, I'm a new member of this group, I came across it only
yesterday and was so happy to find other people with this weird
'sparkly eye' thing, that's been my name for it since it started, as I
have never been able to find any information relating to it anywhere
on the internet!
I am 57 yrs of age and I have been experiencing SC since I had heart
surgery during October 09, I had a replacement Aortic valve, it's a
mechanical one so I have to take Warfarin forever more.
I experience my SC about 2 or 3 times a week, it starts with a tiny
thing in the middle of my vision, it's an arc of very bright zigzags,
the arc then grows and it seems like when it reaches the very edge it
disappears, it generally takes 20 - 30 minutes from start to finish,
when it happens I can't read, drive or use my pc at work, I don't
experience any pain during or afterwards, I wear glasses for reading
and also for distances, eye tests don't show a thing.
I've read a lot of the postings in the group, it seems nobody really
knows why it happens, but I wonder if mine is a result of my surgery,
or maybe my medication, or maybe not connected with that at all?
Has anyone any advice or information?

[Jean]

Deborah, it would be good for you to sign up and get on this list (if you haven't already).  Each of us has a different story to tell about SS.  Much alike and yet different.  Everyone trying to find out what causes the episodes.  Many suggestions but usually, after a period of time, the trigger changes (if it ever really was a trigger and not just a coincidence).  I have had SS for about 20 yrs now.  Sometimes more often and then for awhile nothing.  (I am well over 60!)  Funny thing now is that a bit over a year ago I had a bad episode of A-Fib and was diagnosed with Atrial Fibrulation.  Have been on meds for rhythm control since that time now and doing fairly well.  Strange thing is that I have NOT had any episodes of SS since the A-Fib showed itself!  Did it cause a change and end to SS - or is it just a coincidance that I have not had any SS since that time?  Only time will tell.  This is the first time I have ever gone more then a couple months without SS so it would be easy to assume it's the heart change that stopped SS.  I also have four leaky valves and MVP (about13 yrs now).

Do go back and read some of the older notes people have written to give you a general idea how it goes with others.  If nothing else it will help you to be more accepting and patient with yourself when the episodes make an appearance.

Jean N.

scintillat...@googlegroups.com

On 12/22/2012 9:24 AM, debo...@aol.com wrote:

I'm so glad I found this!  I've had what you describe as the "sparkly eye thing" for several years.  It only happens 3 or 4 times a year until lately  I had open heart surgery last week, and since then I've had this scintillating scotoma aura multiple times every day!  I notice that you posted this over a year ago, so I wonder if things have chaneed with you.  I had the same surgery as you - Aortic Valve Replacement, replaced with cow valve.  Have you continued to have this experience?  Did you find out what caused it?  Did it get better, worse?  I'm just very curious.  My email address is debo...@aol.com if you don't mind emailing me.  I don't know if I can find my way back to this exact spot.  I would appreciate any information you can provide.  Thank you, Deborah Anderson, age 60

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[langanat...@aol.com]

Lucyannie,

My name is Julie and I am 50 yrs old.  I too had open heart surgery and developed ss approx 6mths into recovery.  Two years later thousands of dollars multiple doctors and tests and no answers.  I know that my surgery somehow is responsible for these ss.  Microembolae possible?  Now taking nortryptylline and it has cut back on frequency.  I hate to say it, but it makes me feel better to know others have had same experience!

On Friday, January 7, 2011 6:03:07 AM UTC-5, Lucyannie wrote:

[dale...@gmail.com]

Hi, just ran across your post.
I had aortic dissection repair surgery in Jan '09 and have, like you, been experiencing SC 2-3 times a week ever since. On occasion, I've had a couple in one day.
I'm guessing you, like me, were on bypass during your heart surgery. They told me that I suffered a stroke in the right frontal lobe as a result of the bypass, something they told me is not uncommon. As a result of the stroke, I lost fluidity in my eye movement, have a minor swallowing problem and occasionally slur my words, particularly when I'm tired.
I don't know how many of these symptoms you have, but I am assuming my SC is directly connected to my stroke. If you haven't been checked for a stroke, I would suggest it.

[bet...@gmail.com]

Hello,
I came across these posts searching for this same thing that has been happening to me since Open Heart Surgery for Aortic Aneurysm.  At first when it started, I did have headaches.  Now it seems I have just some pressure.

[jaypark...@gmail.com]

I had a Pulmonary Ablation and two days latter starting having SS.  My cardiologist had never heard of it so I contacted another cardiologist and he explained that sometimes when the left atrium is damaged or worked on.  My SS's only last 15-20 mins.  They only lasted 2 weeks.  I am not worried.  

[ashleyt...@gmail.com]

Hello. I'm 30 and have suffered from SS my whole life but noticed an increase in aura's after my open heart surgery on April 21st of this year. (I had my Mitral Valve repaired) I typically have an episode once or twice a month but immediately following surgery, had them 3+ times a day. I quickly linked the time of my attacks with the times I took my medication. After spacing out my different medications, I found that the frequency of the auras decreased. My cardiologist didn't seem worried but offered to try alternative medications. Hope this helps!

Take it easy✌🏼

[todd.ke...@advocatehealth.com]

Glad to find this! I had open heart surgery for mitral valve repair last month, also had a patent foramen ovale closed a well (incidentally found during operation). I used to have maybe one to two maximum SS episodes PER YEAR, now having them every other day since surgery!! Started in hospital, seems to be triggered while walking but not always. Glad to hear I am not alone! Hopeful they will go back to yearly soon...thanks for posting your stories.