Re: Eye question - long answer

[Guest guest]

hi Mike, i've had problems with sarcoid in my eyes for 20 years.  sarcoid can manifest itself in the eye in a number of ways!  i will tell you a little about my experience as it relates to the things you mentioned in your email, but please don't regard it as the only possible scenario. 

 

first, when you say the center of your vision, there are two regions of the retina you need to know about - the exact, precise, center of your vision is the fovea, where most of your rods & cones are.  and, as a result, it's where most of the blood capillaries are in the layer just beneath the retina.  the amount of the outside world that you see with your fovea is an area about the diameter of a shirt button, or maybe a pencil diameter, held at arm's length, if that makes any sense.  it's pretty small but it's your sharpest vision.  the donut-shaped region around your fovea is your macula, and the area of the outside world that your macula sees is about the diameter of a silver dollar held at arm's length.  lots of rod & cones here too, and lots of capillaries underneath.  blind spots that appear here will appear to be just to the side of the exact precise center of your vision, but will still be annoyingly close.

 

one thing that sarcoid can do is form granulomas in the tissue layer just under that layer of capillaries, either under the fovea, the macula, or elsewhere in the periphery.  when that happens, the retina or macula or fovea gets stretched, like the skin of your hand might get stretched over a blister, which slows down the blood flow thru the capillaries at first (causing a blurry spot) but it can get worse & start to damage the retina (causing a blind spot).  i've always been told that the best treatment for this is to get on immunosupressant medication right away, to keep the granulomas from getting big enough to cause a blind spot.

 

another thing it can do is simply cause general swelling of the entire tissue layer under the fovea and macula, which is usually what happens to me, which can cause blurry spots and blind spots much in the same manner as i mentioned above.  occasionally in my past, the swelling has caused a rupture of some of the capillaries, which unfortunately is worse, since it can deprive a larger portion of the retina of oxygen long enough to damage it.  ophthalmologists refer to this as a 'wet' condition since they can usually see the slight amount of bleeding involved.  if this were happening to you, you would be able to see it as well.  it looks very similar to the way a camera flash bulb temporarily blinds a small spot on your retina.  when someone takes your picture with a flash, you can see it especially well when you blink rapidly for a second.  the same thing happens when you blink rapidly with a 'wet' capillary breakage.  in this condition, my ophthalmologists have always said that a laser treatment might be needed to stop the bleeding, if it doesn't heal on its own.

 

retinal detachment usually starts at the very outside edges of your vision.  you'd notice it by seeing numerous white flashes at the very edges of your vision when you quicly dart your eyes back & forth.  if you do that & see flashes, then STOP doing it!  you don't want to make any detachment worse.  in this case, yes, they use lasers to zap the retina back in place, essentially glue-ing it back to the tissue beneath it.  doing this causes small blind spots where the laser hits, but usually so small they're not all that noticeable.

 

your condition may easily turn out to be 100% different from my experience.  i have to be honest with you, i've had all of the things mentioned above except the detached retina, and have lost very small portions of my sight each time this stuff happens.  over 20 years it's accumulated to some pretty significant loss of vision, and i have this condition in both eyes.   on the other hand, i have a cousin who had a little granuloma appear in his eye one day, in his macula, annoyingly close to his center of vision.  it caused a small permanent blind spot, and he called me for weeks asking what could he do about it, and how will he ever learn to live with it... a few months later, he was laughing about it.  he still has that little blind spot, but he never even notices it anymore.  the brain learns how to adapt, how to fill in the missing pieces, and it does a really good job of it.  these days, my cousin tells me he usually forgets he has a blind spot until someone reminds him.  as for me, i still have no problem reading or watching tv.  i do have a little trouble recognizing faces at a distance, though.

 

just keep careful watch on the spot in your eye.  it' helps to have a piece of graph paper that you can look at, because it makes it easier to see the size and shape of the spot.  the name of the game here is to keep it from getting worse.  take your meds faithfully.  anti-oxidants and vitamin suppliments are a good idea, B complex and beta kerotene.  also, when you see your ophthalmologist, ask him what to do if you notice the spot getting bigger or, God forbid, another spot appears.  he may give you permission to increase your own dosage a little when you think you need it, & if he says it's okay, i'm sure he'll give you proper guidelines for that.  but make sure you & he work out a plan for this, because if it flares up on you, time is of the essence. 

 

God bless you, good luck, DON'T PANIC, and please let us know how it goes.  and whine all ya want, God knows i do, and they still haven't kicked me off this list!

 

chris

 

Mike, I'm trying to get in touch with Tracie, our eye authority until she left the group.  I'll let you know what she says about your situation.

Ramblin' RoseCo-owner/Moderator

  " I child-proofed my home and they STILL get in! "      (Bumper sticker)

  > To: Neurosarcoidosis > From: michealscott86@...

> Date: Tue, 19 Apr 2011 23:21:15 +0000> Subject: Eye question - retianl detachment or some-other> > I don't post often, and I don't mean to seem like a 'whiner', but...

> ...having ben Dx'd w\ NeuroSarc Dec 1995 , I was treated w\ high doses of {rednisone, Dilantin (seizures), and Cyclosporine. August 1996 i had a Retianl Viterectomy on my left eye to remove scarring (caused by the SarcMonster), then in April 2007 Cataract surgery (left eye). both times my vision was 'saved' , restored to (almost) perfect. This past week I have had a psuedo-blind spot appear in my central vision of my (guess where !!) left eye. I do have an appointment with my eye Dr Thursday so he can have a look @ my left eye, and hopefully refer me to an opthalmomlogist (as neccessary). From what I have read online, some surgical intervention may be possible to save the vision in my left eye, but...as much as I hate to say it....I'm worried.

> I am wondering if anyone has any experience or ideas may be able to share ?> I do not like to ask, as I know some folks have\have had issues of their own to deal with. Mant thanks in advance > Mike @ StCatharines, Ont

> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages

> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database

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[Guest guest]

Wow great info Thank you for sharing your knowledge with us. Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

hi Mike, i've had problems with sarcoid in my eyes for 20 years.  sarcoid can manifest itself in the eye in a number of ways!  i will tell you a little about my experience as it relates to the things you mentioned in your email, but please don't regard it as the only possible scenario. 

 

first, when you say the center of your vision, there are two regions of the retina you need to know about - the exact, precise, center of your vision is the fovea, where most of your rods & cones are.  and, as a result, it's where most of the blood capillaries are in the layer just beneath the retina.  the amount of the outside world that you see with your fovea is an area about the diameter of a shirt button, or maybe a pencil diameter, held at arm's length, if that makes any sense.  it's pretty small but it's your sharpest vision.  the donut-shaped region around your fovea is your macula, and the area of the outside world that your macula sees is about the diameter of a silver dollar held at arm's length.  lots of rod & cones here too, and lots of capillaries underneath.  blind spots that appear here will appear to be just to the side of the exact precise center of your vision, but will still be annoyingly close.

 

one thing that sarcoid can do is form granulomas in the tissue layer just under that layer of capillaries, either under the fovea, the macula, or elsewhere in the periphery.  when that happens, the retina or macula or fovea gets stretched, like the skin of your hand might get stretched over a blister, which slows down the blood flow thru the capillaries at first (causing a blurry spot) but it can get worse & start to damage the retina (causing a blind spot).  i've always been told that the best treatment for this is to get on immunosupressant medication right away, to keep the granulomas from getting big enough to cause a blind spot.

 

another thing it can do is simply cause general swelling of the entire tissue layer under the fovea and macula, which is usually what happens to me, which can cause blurry spots and blind spots much in the same manner as i mentioned above.  occasionally in my past, the swelling has caused a rupture of some of the capillaries, which unfortunately is worse, since it can deprive a larger portion of the retina of oxygen long enough to damage it.  ophthalmologists refer to this as a 'wet' condition since they can usually see the slight amount of bleeding involved.  if this were happening to you, you would be able to see it as well.  it looks very similar to the way a camera flash bulb temporarily blinds a small spot on your retina.  when someone takes your picture with a flash, you can see it especially well when you blink rapidly for a second.  the same thing happens when you blink rapidly with a 'wet' capillary breakage.  in this condition, my ophthalmologists have always said that a laser treatment might be needed to stop the bleeding, if it doesn't heal on its own.

 

retinal detachment usually starts at the very outside edges of your vision.  you'd notice it by seeing numerous white flashes at the very edges of your vision when you quicly dart your eyes back & forth.  if you do that & see flashes, then STOP doing it!  you don't want to make any detachment worse.  in this case, yes, they use lasers to zap the retina back in place, essentially glue-ing it back to the tissue beneath it.  doing this causes small blind spots where the laser hits, but usually so small they're not all that noticeable.

 

your condition may easily turn out to be 100% different from my experience.  i have to be honest with you, i've had all of the things mentioned above except the detached retina, and have lost very small portions of my sight each time this stuff happens.  over 20 years it's accumulated to some pretty significant loss of vision, and i have this condition in both eyes.   on the other hand, i have a cousin who had a little granuloma appear in his eye one day, in his macula, annoyingly close to his center of vision.  it caused a small permanent blind spot, and he called me for weeks asking what could he do about it, and how will he ever learn to live with it... a few months later, he was laughing about it.  he still has that little blind spot, but he never even notices it anymore.  the brain learns how to adapt, how to fill in the missing pieces, and it does a really good job of it.  these days, my cousin tells me he usually forgets he has a blind spot until someone reminds him.  as for me, i still have no problem reading or watching tv.  i do have a little trouble recognizing faces at a distance, though.

 

just keep careful watch on the spot in your eye.  it' helps to have a piece of graph paper that you can look at, because it makes it easier to see the size and shape of the spot.  the name of the game here is to keep it from getting worse.  take your meds faithfully.  anti-oxidants and vitamin suppliments are a good idea, B complex and beta kerotene.  also, when you see your ophthalmologist, ask him what to do if you notice the spot getting bigger or, God forbid, another spot appears.  he may give you permission to increase your own dosage a little when you think you need it, & if he says it's okay, i'm sure he'll give you proper guidelines for that.  but make sure you & he work out a plan for this, because if it flares up on you, time is of the essence. 

 

God bless you, good luck, DON'T PANIC, and please let us know how it goes.  and whine all ya want, God knows i do, and they still haven't kicked me off this list!

 

chris

 

Mike, I'm trying to get in touch with Tracie, our eye authority until she left the group.  I'll let you know what she says about your situation.

Ramblin' RoseCo-owner/Moderator

  " I child-proofed my home and they STILL get in! "      (Bumper sticker)

  > To: Neurosarcoidosis > From: michealscott86@...

> Date: Tue, 19 Apr 2011 23:21:15 +0000> Subject: Eye question - retianl detachment or some-other> > I don't post often, and I don't mean to seem like a 'whiner', but...

> ...having ben Dx'd w\ NeuroSarc Dec 1995 , I was treated w\ high doses of {rednisone, Dilantin (seizures), and Cyclosporine. August 1996 i had a Retianl Viterectomy on my left eye to remove scarring (caused by the SarcMonster), then in April 2007 Cataract surgery (left eye). both times my vision was 'saved' , restored to (almost) perfect. This past week I have had a psuedo-blind spot appear in my central vision of my (guess where !!) left eye. I do have an appointment with my eye Dr Thursday so he can have a look @ my left eye, and hopefully refer me to an opthalmomlogist (as neccessary). From what I have read online, some surgical intervention may be possible to save the vision in my left eye, but...as much as I hate to say it....I'm worried.

> I am wondering if anyone has any experience or ideas may be able to share ?> I do not like to ask, as I know some folks have\have had issues of their own to deal with. Mant thanks in advance > Mike @ StCatharines, Ont

> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages

> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database

> >