Visudyne therapy, SRN, no macular degeneration, young patient

Discussion in 'Optometry Archives' started by -L., May 24, 2005.

  1. -L.

    -L. Guest

    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.

    -L., May 24, 2005
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