To the Retina Doctors: Please Watch your Words!!!
I have great respect for the doctors here. But my respect — and my trust —-
left me with great pain, permanent and a sadly premature end to my active life.
Not long after I was diagnosed with macular degeneration I had asked the retina doctor then treating me why I had this condition. His answer: "because you are on Prolia!"
I knew skipping a Prolia shot could mean broken bones!! But I was even more afraid of losing my eyesight. So I skipped my next Prolia shot!.
The horrible results came not long after that shot was due with a deluge of pain from an
excruciating backache. I cabbed to the nearest ER where X-rays showed THREE NEW VERTABRAL FRACTURES! They taped my back, but their pain pills could to stop the flood of pain. The University of Chicago Pain Clinic offered only narcotics, which frightened me.
Pain made driving hazardous so I sadly gave up my car. And the active lie and travel I so enjoyed in retirement? Now impossible.
I reached out to an old friend, an ophthalmologist now retired from the National Eye
Institute at National Institutes of Heath in Bethesda, MD. She confirmed links between
OSTEOPOROSIS and MACULAR DEGENERATION, but NOT between PROLIA and
MACULAR DEGENERATION!
Had the retina doctor simply said “because you have osteoporosis” I’d have gotten
my Prolia shots, my vertebrae would likely be ok, and my life would be reasonably
normal.
I’m back on Prolia now, but the damage is forever. The Prolia doctor was shocked when I told her what had happened. My vertebral X-rays resemble a child's broken Tinker-Toy! The pain has decreased to the point that I can avoid habituating drugs, but it is always there when sitting or standing.
Driving was distractingly panfuls I let my car and driver's license go. I try to be active as pain permits, and do exercises from a physical therapist. But muscle cannot replace bone.
And the active travel and other activities which I so eagerly planned for my retirement years? Now impossible -- all because of some misleading words from a respected retinal specialist whom I had the great misfortune to trust! I write this in hopes that this will not happen to anyone else! Joan Levin, jdlevin@bright.net, November 29, 2022.
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(This one page handout was in Ariel Narrow Bold, 14 point
I hope to give this to one of the retina doctors I now see.
I do not see Dr. Deluge any more. I will not let him near me! )