Dear Mary,
My name is Dave, and I'm involved with an organisation here in Ireland
called Fighting Blindness. I've just read your e-mail to the group and I've
been doing a bit of searching around to get some information for you. For
now I'm replying using my wife's e-mail hence the difference in name on the
e-mail *smile*!

I'm not a retinal specialist - just a plain ol' food scientist but I
understand a bit about the conditions.

I found some information on a website ( www.optometry.co.uk ) which is very
encouraging. According to them Temporal Peripapillary Atrophy (PPA) or a
temporal crescent of PPA is present in about 80% of the normal population.
So it is not something to be alarmed at when you see it on your chart.
There are sample charts on the net that I came across and in most it was
just stated as "Temporal Peripapillary Atrophy" with no other information.
However, it can be associated with macular detachments or glaucoma.
According to the website the frequency and area of PPA increases due to both
conditions. The fact that your retinal specialist didn't see any new
retinal tears is encouraging as he/she is saying that there hasn't been any
change since you were seen last. Can I ask - did you go for a regular
check-up or was it due to a perceived further loss of vision? If it was
just a regular check up then I don't think you need to worry for now.

When Noreen goes for check-ups, I normally tag along - 4 ears are always
better than 2 when it comes to understanding medical advice/explanations!!
And while one is trying to follow what's being said the other can be
thinking of any other questions that may need answering!

It is very frustrating when you are hit by a stream of medical jargon and
complex words! Most doctors don't realise that we get lost easily. And
it's difficult from our side to keep saying "can you explain it again?"

I hope what little information I have found is useful. Please let me know.
I have a very good relationship with a specialist/researcher here in Ireland
who I'm sure would give you a bit of time if you need more information.

Kindest regards,

Dave
______________
Dave Waldron
d.waldron@...

Chairperson
Fighting Blindness Ireland
www.fightingblindness.ie



----- Original Message -----
From: pope mary <mary_mom_of_zachary6132001@...>
To: <retinayouth@...>
Sent: 22 November 2003 02:54
Subject: Re: [retinayouth] Digest Number 409


Hey Markus,
Thats ok , Thanks for trying though!

Mary from Michigan

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There is 1 message in this issue.

Topics in this digest:

1. AW: Digest Number 407
From: Markus Georg


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Thu, 20 Nov 2003 23:47:21 +0100
From: Markus Georg
Subject: AW: Digest Number 407

Hi Mary,
I have asked to persons in our society. The explanation I have got was not
sufficient and not worth to translate it from German into English. They did
not have a clue, even if they normally know everything. Might be something
rare, strange or unimportant.
Sorry, that I cannot help you.
Best regards,
Markus


-----Ursprüngliche Nachricht-----
Von: pope mary [SMTP:mary_mom_of_zachary6132001@...]
Gesendet am: Montag, 17. November 2003 18:43
An: retinayouth@...
Betreff: Re: [retinayouth] Digest Number 407


Hi Markus, and everyone esle

Thank you for replying , I finally just boke down and called my Retinal
Specialist and the Nurse that was there tried to expain to me what Temporal
Peripapillary Atrophy is but The defination of it was confusing, I do know
that its will not effect my vision in that eye , Markus if you coould ask
your friend about it I would be very grateful!

I live in Kalamazoo Michigan

TTYL, Mary
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There is 1 message in this issue.

Topics in this digest:

1. AW: Digest Number 405
From: Markus Georg


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Sun, 16 Nov 2003 20:48:28 +0100
From: Markus Georg
Subject: AW: Digest Number 405

Hi Mary,
Wecome do our group. Nice to hear something from you.
Where do you live in Michigan ? I lived three months in Southfield, Detroit
last year.

Sorry, but I have never ever heard something of Temporal Peripapillary
Atrophy. But I could ask a friend of mine.
Bad story that your doctor did not tell you that something is wrong.
Why you just don´t give him a call and ask him about this ?

Forgive me this (maybe stupid) question, but what is the difference between
"low vision doctor" and "retinal specialist" ?
In Germany I go once a year to the eye doctor and every second year to the
university in Tübingen who are the experts in retinal diseases in my
neighbourhood. Is this the same in the USA ?

CU,
Markus

-----Ursprüngliche Nachricht-----
Von: pope mary [SMTP:mary_mom_of_zachary6132001@...]
Gesendet am: Freitag, 14. November 2003 00:20
An: retinayouth@...
Betreff: Re: [retinayouth] Digest Number 405




.

HI this is Mary Iam 29 yrs old and Live Michigan

I just wanted to say Hi and that I am sorry that I dont post more on this
group!

I have question for the group: I went to the Retinal Specialist on 10/20/03
because my Low vision doctor reffered me back to my Retinal Specialist,
anyways I was told that my vision is stable for now and that he didnt see
any evidence of any new retina tears or breaks in either of my eyes.

Later on that week I went and requested a copy of my retinal exam that was
done and when I took a look at the report I found out that I now have
something called Temporal Peripapillary Atrophy in my right eye ( I only use
my right eye) Does anyone know what this is ? I would appreicate it if
someone could explain this to me ?



Sincerely, Mary Stay at Home Mom to Zachary Ryan age 29 mos old from
Michigan




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