I had great respect for the doctors at Illinois Retina. Unfortunately my respect — and my trust —- left me with enormous pain, permanent disability, and a very sad, painful and premature end to my active life!
I had asked the retina doctor then treating me, Dr. Timothy Flood, why I had macular degeneration. His answer astonished and frightened me.
He said: “Because you are on Prolia!”
Skipping a Prolia shot could mean broken bones!! But I was even more afraid of losing my eyesight. So based on his words, I skipped the next Prolia shot !!!.
The horrible results came quickly with an excruciating backache.
I cabbed to the nearest ER where X-rays showed THREE recent vertebral fractures.
They taped my back, but their pain pills did not make a dent in the pain. The University of Chicago Pain clinic offered only addictive narcotics, which frightened me.
This flood of pain made driving hazardous so I sadly gave up my car. And the travel I so looked forward to in retirement? Now impossible.
An old friend, an ophthalmologist now retired from the National Eye Institute at National Institutes of Heath in Bethesda, MD, confirmed links between OSTEOPOROSIS and MACULAR DEGENERATION, but NOT between PROLIA and MACULAR DEGENERATION!
Why didn’t that highly trained and experienced retina doctor know this?
Had that retina doctor said “because you have osteoporosis, I’d have gotten that Prolia shot on time, my vertebrae would likely have been ok, and I could have enjoyed the family activities and travel I’d planned for my retirement years.
But for some reason I will never understand, that highly trained specialist gave me a dangerously incorrect answer!
I’m back on Prolia now, but the damage is forever. The Prolia doctor was shocked and angry when I told her what happened!
My vertebral X-rays resemble a child’s broken Tinker-Toy! The pain has decreased to the point that I can now avoid habituating drugs, but it is always there when sitting or standing.
I am active as pain permits, with exercises prescribed by a physical therapist. But muscle cannot replace bone.
And the travel and other activities I had so eagerly anticipated in retirement? Now impossible because of five misleading words from a respected retinal specialist whom I had the great misfortune to trust! I write this in hopes that it will not happen to others!
jdlevin@bright.net, 11/29/2022
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(This is a shorter version of document actually dated to be posted November 29, 2022 that will likely be an appointment to the retina doctor, Dr. C. that day.)