-L.
Guest
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 Posted: Sat Nov 22, 2008 9:30 am Post subject: Visudyne PDT used for SRN, no ARMD, subretinal neovascular m |
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I am posting an update on my case to document it for other patients,
since Google will not allow me to reply to my previous posts. The
orginal posts are pasted below. You can Google search them in the
archive.
November 2008.
It>s been just over 4 years since I was diagnosed. My eye has been
stable and I am actually regaining some vision in my blurry/blind
spot. I am able to see some shape and some color in the area. I
still have flashing but it comes and goes and is a lot less
noticeable. I wonder if the retina is repairing itself.
My overall visual acuity is getting worse - I just turned 45 so I
don>t know if it>s age or something else. My corrected vision in the
affected eye is still relatively good.
Visudyne is no longer the treatment of choice for this condition. I
worry about the long-term effects of the drug since no tox was ever
done on it.
If anyone needs a retina specialist in the Portland, OR area, I highly
recommend Dr. Michael Lee at Retina Northwest. The care I received
there was much superior to my experiences at Casey.
I am still available at this email address, though I check it
infrequently.
Be well. :)
***************************
January 2007
As of today my lesion is still scarred over, no bleeding. My last
(2nd) PDT surgery was in April of 2005. I still have a significant
blind spot with black and white flashing - my understanding is that it
is permanent. My far vision seems to be stable but near vision is
getting worse (I am becoming farsighted in addition to my
nearsightedness). I now have to remove my glasses to read and
probably
qualify for bifocals but I don>t want to go there, yet. ;) My next
appointment for a retinal exam is in February, with my regular
opthamologist. I will continue to update my case periodically for
anyone who may be interested in this condition or may have a similar
condition.
Feel free to email me with questions at the address below.
-L.
***paste***
L.
Newsgroups: sci.med.vision
From: "L." <gentle...@peacemail.com>
Date: 19 Jun 2006 00:06:32 -0700
Local: Sun, Jun 18 2006 11:06 pm
Subject: Visudyne therapy, SRN, no macular degeneration, young patient
Hi, I am just posting an update to an older post I made about my
condition. The original post is pasted below and can be found via a
Google search. I am now 14 months post-Visudyne PDT treatment (my
second one) and my lesion is still sealed and seems to be stable. My
vision has actually improved, although I still have flashing and have
a
significant grey area with a blind spot, as described below. My
center
of vision in my affected eye is somewhat skewed. I do not have any
negative side effects from the drug that I know of. I have an
appointment next month to confirm my eye>s stability, and then I am
released to my regular opthamologist. I am still interested in
hearing
from other young patients who suffer from similar conditions.
Thank you,
-Lyn
***paste***
Hi all,
I>m just making notations for the archive incase there are others out
in cyberworld who have the same condition. I am 41 years old, female
and was diagnosed with subretinal neovascular membrane of the left
eye,
also called choroidal neovascularization, in Oct of 2004. I have no
underlying causative conditions such as advanced age, macular
degeneration, diabetes, glaucoma, extreme myopia or any other
underlying condition suspected to contribute to this - so it is
classified as "idiopathic". So far I have been contacted by one other
person under 40 (she is 30) who has this same condition - and I would
be interested in talking to any others who also have it. My email
address is below.
My lesion was large when it was discovered. My only symptom was a
flashing in the upper left quadrant of my left eye which I had for a
few months before seeking treatment (I thought it was from migraine
headaches). The lesion was sub-fovial when discovered and three
different surgeons/retina specialists were consulted - two in
Portland,
Oregon (one at Casey (OHSU) and one at Retina NW) and one at John
Hopkins. The two in Portland suggested Visudyne PDT, Hopkins
suggested
traditional argon laser surgery. Since I am young, I opted for
Visudyne PDT. The first surgery sealed the lesion pretty well. Five
months later, slight leakage was discovered which progressed over the
next 6 weeks. So I had a second laser surgery in late April. I have
not yet received the results from that surgery.
My symptoms to date have been stable flashing spots, some with dark
centers, and an area of distortion that has a grey center which
contains a significant blind spot. The blind spot developed post-PDT,
and may or may not resolve as fluid is absorbed from under the retina.
The distortion now affects my fovea, and covers most of the left half
of my field of vision in my left eye. The grey area is egg-shaped and
is also centered in the left half of the field of vision. The blind
spot is centered in the grey area but affects the fovea.
My only other medical condition is polycystic ovary syndrome without
insulin resistance. I am overweight but not classified as "obese", I
have normal blood pressure and all of my blood chemistries are normal.
The only value that is high is triglycerides, which run normally high
in my family. None of my other relatives have this condition,
although
two of my aunts developed ARMD after the age of 65.
I would be interested in being contacted by anyone under 50 who has a
similar condition. We are trying to compare notes, as the use of
Visudyne PDT is not well understood in non-geriatric patients, and
there is some risk associated with the drug since no carcinogenic
studies have been done. I also have some systemic reaction to the
drug
- vomiting, nausea and diarrhea which is uncommon. Feel free to email
me at the address in the header or at idontmind (at) hotmail (dot) com
if you would like to share information.
Thanks,
-L. |
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