Dear Retina Doctors:
I have great respect for the retina doctors here. But my respect — and my trust —- left me with great pain, permanent disability, and a sadly premature end to my active life!
When 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 arrived with an excruciating backache. I cabbed to the nearest ER where X-rays showed THREE NEW VERTEBRAL FRACTURES! They taped my back, but their pain pills could not 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 life and travel I so enjoyed in retirement? Now impossible. Even standing upright was painful.
I reached out to an old friend, an ophthalmologist, now retired from the National Eye Institute at National Institutes of Health 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 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 now hazardous, so I let my car and driver's license go. I try to be active as pain permits, and I do exercises prescribed by a physical therapist. But muscle cannot replace bone.
And the travel and other activities I had so eagerly looked forward to in retirement? Now impossible -- all because of a few 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
(Ariel Narrow 13 point bold for a one page document)
November 25, 2022
I also included this poem which may be elsewhere in this blog:
I asked the doc why I must have that needle in my eye,
“It’s plain to see!” he said to me, “and here’s the reason why!”
“You have an eye condition: macular degeneration.”
“Why do I have this?” I replied. “What is the explanation?”
No pause or hesitation for that doctor’s quick reply:
“Because you are on Prolia, and that’s the reason why!”
“Oh my gosh” I thought at once, “Now I will have to choose!”
“My vision or my backbone; Oh, which one could I lose?”
Awake for hours, I made the choice: my bones would have to go.
I didn’t get my Prolia shot, the rest, I guess, you know!
Soon after, in a flood of pain, three vertebrae were shot!
Life as I knew it ended, right there on the spot!
No more driving, no more travel, just a lot of pain!
My active life cut with a knife — and sent right down the drain!
Not long afterwards I learned I’d got bad information.
And why that doctor said those words? I have no explanation.
All too late I learned that this condition of the eyes,
Is because of osteoporosis; but I was too late wise!
###
November 25, 2022
At my blog: http://www.joansbackbonedisaster.com/