I deal each day with the pain and disability created when I was told by a retina specialist whom (at the time) I respected and had no reason to doubt - that my eye condition — macular degeneration — was because I was on Prolia. This caused me, fearing for my eyesight, to skip a Prolia shot, resulting in three terribly painful vertebral fractures!!!
In fact, as I learned too late from what turned out to be a more reliable authority, that the eye condition was related to osteoporosis and not to Prolia!
Let's just say:
When you're dumb as a sack full of hammers,
You should only treat eyes from a spud,
But (pardon my verbal bad manners),
That rule washed away in a flood!
News -
Wednesday, December 14, 2022
QUESTION FOR A RETINA DOCTOR: A POEM WRITTEN DECEMBER 11, 2022:
I asked the doctor why he stuck that needle in my eye!
“It’s plain to see!” he told 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 would I lose?”
At last I made the awful choice: my bones would have to go.
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 from osteoporosis, NOT Prolia; but I was too late wise!
Joan Levin ###
WORDS IN A FLOOD-- A POEM -- December 8, 2022
Arrogant, ignorant words in a flood!
Could it be from a brain that is only a spud?
So sharp with the needle, so dull with the words,
That I’m dragging my years like a sack full of turds!
I’ve said it once, twice and I’ll say it again -
live with such pointless and unneeded pain!
Some days I just wish that I weren’t alive,
But venting this anger helps me to survive!
Wherever he is with his careless old tongue,
I hope he’s not harming folks - aging or young!
My many nice plans for retirement gigs,
Including some travel and fun with the kids,
Are consigned to the trash heap of “never to be,”
For his arrogant thoughtlessness did that to me!
Joan Levin ###
December 8, 2022 A POEM
Dedicated to Dr. Timothy Flood
What can I say about Timothy Flood?
I'd say as an eye doctor he was a dud!
Folks go to their doctors for healthful advice,
But his was as healthful as maggot-laced rice!
I asked why my eyes had this condition.
“Because you’re on Prolia!” was his position.
So I skipped my next Prolia, this is no joke!
I was scared for my eyes, but instead my back broke!
The right answer came from an alternate source,
n ophthalmologist at NIH Eye Institute, of course!
She could not believe that any physician,
Let alone an eye doctor, would take Flood’s position!
“Was this really a doctor?” was all she could say.
“A retinal specialist,” I replied, in dismay.
Now all of the plans I had made for these years,
Have gone up in smoke, forever I fear!
And I will be spending the long years ahead,
Pretty much chained to my room and my bed!
As for Timothy Flood, I don’t give a damned jingle —
But I sure hope that quack will retire his shingle!
And that's quite enough about Timothy Flood.
Like Lincoln's assassin, his name should be Mudd!
December 17, 2022
Thursday, December 8, 2022
A RIDDLE IN RHYME
Who would I like to see burning in Hell,
Or living a life with the pain I know well?
The guy whose degrees may make him look smart,
But who likely can’t tell a poop from a fart?
Whose betraying advice was the worst kind of crud?
(Although his name was not Samuel Mudd!)
rrogant, posturing dandy, that's him!
But the damage he did me was grisly and grim!###
Wednesday, December 7, 2022
MORE BAD MEDICAL ADVICE!
Here’s the dilemma of Timothy Flood,
A genius with needles, for advice he’s a dud!
I asked him why I needed shots in the eye.
“Because you’re on Prolia” was his reply!
It sounded so simple, but it wasn’t true —
And that’s why I must now explain it to you!
Here’s where I sadly was terribly dumb —
And it should have prepared me for worse things to come!
It’s when Dr. Flood said “You’re a lawyer” (that’s true)
And wanted assurance that I wouldn’t sue!
Now why in the world was he looking for that?
Just by this statement I should have smelled RAT!
Plus Prolia never should have been the main focus;
My eyes were affected by osteoporosis!
I learned that much later when when another doc said,
The problem wasn’t Prolia, but osteoporosis instead!
But I hadn’t known that, and this is no joke —
I was frightened, skipped Prolia, and vertebrae broke!
I haven’t the language to tell of the pain,
Each day I bear it again and again!
If a court could award me a writ of repleven,
To bring back my broken bones, I’d be in heaven. ###
Thursday, December 1, 2022
HOW DUMB CAN A DOCTOR BE AND STILL BE A DOCTOR?
Dumb as a sack of hammers?
Dumb as a box of rocks?
Dumb as any old doorknob?
Or maybe just dumb as an ox?
~~~~~~~
What I want to know is just how that darned fool,
Made it through college and medical school,
Let alone having a chance to apply,
His dumber than dumbness to anyone's eye! ###
Wednesday, November 30, 2022
THE TELLTALE QUESTION:
Why wasn't I paying better attention when Dr. Timothy Flood, the retinal specialist, looked rather disturbed when I first met him and he asked what kind of work I did and I told him I was a retired lawyer?
Had he been on the receiving end of some legal actions? Did his wandering mouth get him in trouble by harming others as it harmed me? I'll never know!
Did he not realize the effects his words could have, as when I asked him why I had this retina condition, and his immediate (and erroneous) answer was: "because you are on Prolia!"
Unfortunately, at that time, I actually believed this highly trained medical expert knew what he was talking about!!! But it was this careless -- and actually -- ignorant remark, by an expert who must have known better -- that led to the pain and disability I live with to this day!!!!!
Did he not know or did he not care that the correct answer (as discussed further in these posts) would have been: "because you have osteoporosis!" ????
Couldn't he have squeezed that big long word "osteoporosis" out of his hyper-educated little mouth?
Did he really not know that having osteoporosis was NOT the same as being on Prolia?
What did he think I was going to do with this information?
I will likely never know the answers to any of these questions. But to my everlasting pain and sorrow, I believed him and followed what I believed was his implicit advice! To this day I live with the pain and disability created by this erroneous statement!
Until he acknowledges this error (which, given his arrogance, I doubt that he ever will) I do not believe he should be treating or advising patients in any capacity. ###
Tuesday, November 29, 2022
DEAR RETINA DOCTORS -- PLEASE WATCH YOUR WORDS!
Dear Retina Doctors:
I have great respect for the retina doctors. 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 came quickly 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. Later 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 I so enjoyed in retirement? Impossible. Even standing 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 is now hazardous, so I've let my car and driver's license go. I try to be active as pain permits, and do exercises prescribed by a physical therapist. But muscle cannot replace bone.
And the travel and other activities which I had eagerly planned for my retirement years? 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 (This one page handout for doctors was originally in Ariel Narrow Bold, 14 point)
A FEW MORE WORDS TO DR. DELUGE!
I recall that Dr. Timothy Flood -- my former retina doctor -- was rather “fartutzt” (a wonderful Yiddish word meaning “done up,” or disturbed) when he asked me what kind of work I did, and I told him I was a retired lawyer.
I should have paid better attention to his nervous reaction! I don't know what he was thinking but he definitely looked disturbed!
Today, thinking back to the entire scenario, in which he carelessly purveyed the misleading information that I had the retinal condition he was treating was because I was "on Prolia" I cannot help wondering if he has made similarly inaccurate comments to other patients, who, like me, may have relied on his expertise to their sorrow!
Believing at the time that he knew what he was talking about, I acted on his comment. If, as he implied, Prolia could threaten my eyesight, I skipped some Prolia shots. This, in turn, left me at risk for the three painful and disabling vertebral fractures I subsequently suffered.
Now I cannot help wondering if incidents like this have left him on the receiving end of some legal actions!
I'm only grateful that another ophthalmologist/eye surgeon, and a personal friend, who after expressing shock that any eye doctor would make such a comment, assured me that the macular degeneration for which Dr. Flood was treating me at the time was associated with osteoporosis itself, and not with Prolia. Otherwise even more damage may have occurred!
But while I was grateful for this correct information (which apparently Dr. Flood did not have despite his many years of training), I still live with the daily pain and disability I attribute to trusting Dr. Timothy Flood!
But have no fear, Dr. Flood! I have no intention of suing you. Why? Because NO amount a court might award me in this he-said-she-said situation could begin to compensate for the pain, immobility, and most of all the loss of the travel and other good times with friends and family that I was so eagerly anticipating in retirement.
And bringing such a legal action (as much has you may deserve it, Dr. Flood) could complicate my medical care in the future!
So rest easy, Dr. Timothy Flood! You can keep your money and go on with your life just as if this never happened. How delightful for you that you needn't give a thought about the ruination your carelessly inaccurate words made in the life of a patient who trusted you! ###
Monday, November 28, 2022
WILL SHE SUE?
Will this cranky old lady sue the doctor whose dangerously erroneous statement created this painful situation? Several friends have asked me this.
Rest easy, doctor! You had the great good luck to demolish the active life of a retired lawyer!
During the many hours I spent in pain, flat on my back, because of your unbelievably erroneous statement that was supposed pass for medical advice, I thought about this.
The irony here, Dr. Deluge, is that YOU threatened to sue ME if I told anyone about this debacle!
My conclusions:
1. In general, cases like this (he said/she said) are hard to prove, and here, preponderance of evidence is required. There were no other witnesses to this doctors dangerously stupid statement and no writings; only my notes and recollection of what I was told: that my eye condition was "because I was on Prolia."
2. Legal action could create all sorts of problems with my medical care in the future.
3. Because I worked hard in physical therapy to at least regain some ability to walk (albeit with pain) and to manage some of my activities of daily living, damages award would likely be reduced accordingly.
4. No amount of money could compensate me for what I have suffered and what I have lost because of the stupid, thoughtless and dangerous statements made by the doctor in question. My ability to drive a car, visit friends and family, travel as I had so looked forward to in retirement -- these might all be worth something in damages, but money would never give me back what I have lost!
5. It would be highly unlikely to change the future behavior of this likely well-insured and egotistical doctor in any event. He probably has great insurance to cover this and would just go on with his life as usual.
###
FROM DR. FLOOD'S ILLINOIS RETINA WEB PAGE
From Dr. Flood's Illinois Retina Web Page:
“Taking care of patients who have retinal problems and helping to relieve their anxiety over the health of their eyes is very rewarding. Research is also important to me. To be able to take the knowledge you have gained through a clinical trial and change the way physicians treat patients is very exciting. Here at Illinois Retina, we’re helping people, having fun doing it and creating new knowledge at the same time.”
https://www.illinoisretina.com/providers/timothy-flood-md-facs/
~~~~~~~~~~~~~
Nice statement, Dr. Flood, but how about just giving your patients correct answers to their perfectly sensible questions? And not answers that will cripple them for life! ###
Saturday, November 26, 2022
HANDOUT FOR RETINA DOCTORS, ONE PAGE, NOVEMBER 29, 2022
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!
###
End of Handout
November 25, 2022
At my blog: http://www.joansbackbonedisaster.com/
Friday, November 25, 2022
Dear Retina Doctors -- Please Watch Your Words!
I have great respect for the doctors here at Illinois Retina. 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 the next Prolia shot!!!
The horrible result came quickly with an excruciating backache. I cabbed to the nearest ER where X-rays showed THREE recen 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 addictive narcotics, which frightened me.
Pain made driving hazardous so I sadly gave up my car. And the active life and travel I was so enjoying in retirement? Now impossible.
Pain made driving hazardous so I sadly gave up my car. And the active 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 on time, my vertebrae would 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 where 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 11/29/22.
###
Thursday, November 24, 2022
GETTING WISE ABOUT THE EYES: A SAD ACCOUNT OF CARELESS MEDICAL MISNFORMATION! A POEM!
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 the doctor said those words? I have no explanation.
(Just in case you're wondering, this condition of the eyes,
Is because of osteoporosis; but I was too late wise!)
November 25, 2022
Dedicated to Dr. Timothy Flood, whose disastrously inaccurate information not only left me disabled and in pain but which also inspired this verse! I understand he may now be retired, and not a moment too soon!
https://www.illinoisretina.com/providers/timothy-flood-md-facs/
Wednesday,
November 23, 2022
THOUGHTS NEAR A HOLIDAY
Why do well-meaning people tell me not to be angry? Does it upset them?
How can I keep still when similar things could happen to others?
And why would a doctor give such dangerously misleading answers to a legitimate question well within the scope of his training.
I'll never know, but hopefully my experience will help others avoid similar debacles.
###
WHY DID THOSE BONES BREAK?
As noted in these posts, I have been diagnosed with macular degeneration. The retina doctor who diagnosed this told me that this condition was because I was "on Prolia." This was a disastrous answer, as will be discussed elsewhere.
But at the time, believing this erroneous information from the retinal doctor, and fearing to lose my vision, I delayed my next Prolia shot, resulting in multiple vertical fractures: two thoracic and one lumbar.
But as I later learned, the macular degeneration was not because I was on Prolia. Rather, it was because I had osteoporosis. Had I known this earlier I would certainly have continued with the Prolia shots that were protecting my bones.
But when this retinal specialist told me that Prolia was endangering my eyesight, I believed him, and therefore failed to get my Prolia shot on time -- resulting in those fractures, as the osteoporosis doctor sadly confirmed.
http://www.joansbackbonedisaster.com/2022/10/the-painful-consequences-of-flawed.html
This may seem like an unimportant bit of information, but it lies at heart of the multiple vertebral fractures I sustained that will likely affect me for the rest of my life!
This is why I am exploring the relationships between osteoporosis, Prolia and macular degeneration and publishing my experience and what I learn in this blog.
###
Saturday, November 19, 2022
TO THE RETINA DOCTORS: WORDS CAN DESTROY! (Shorter)
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
###
(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.)
A BIT OF SHAKESPEARE FOR THE DOCTOR WHO LAUGHED AT ME WHEN THIS HAPPENED!
This one is for Dr. V., the Prolia endocrinologist, who burst out laughing when my back broke (following the s****y medical advice I was given by Dr. Deluge, the retina doctor, who carelessly told me I had macular degeneration because I "was on Prolia.")
He jests at scars that never felt a wound
Romeo and Juliet: Balcony Scene Glossary (2.2)
http://www.shakespeare-online.com/plays/balconyscene/jests.html
Glad to give you a moment's merriment, doctor!
###
Friday, November 18, 2022
TO SUE OR NOT TO SUE
I keep asking myself (and repeating myself here):
Would I sue the retina doctor who gave me such a dangerously inaccurate response to a very reasonable question:
"Why do I have this retina condition?"
My answer: No, I probably would not sue.
I'm still enough of a lawyer to know that at my age, and at least still able to walk and take care of my basic needs, albeit in pain, and even though I have likely lost much enjoyable activity for the rest of my life, including events with family and friends, and the travel I so looked forward to, what happened to me would not likely be worth much as I'd like in the eyes of a court or jury.
Also I would likely run the risk that no other doctor in this town would ever want to touch me again.
But mainly I'd probably forego legal action because no amount of money a court or jury might award could not remove the pain I live with each day or return to me my ability to enjoy travel or even informal get togethers with friends and family without pain.
What would have been a correct answer to my very reasonable question as to why I had this eye condition? I believe one good answer would have been "Because you have osteoporosis." So I wonder: was a five syllable word just too much for this specialist's highly schooled brain?
Apparently so! Because instead of this brief and correct answer, Dr. Timothy Flood carelessly tossed out the most dangerously incorrect answer imaginable: "Because you are on Prolia!" And that was the end of that!
Perhaps he really thought this was the connection -- although there would not be reliable information to support him. But I'll never know.
But at the time, like a like a dumb-dope, I thought this fancy specialist knew what he was talking about! I still do not know why I set aside my natural distrust of doctors at the time. But I sure trusted the wrong one here!
It never occurred to me that he would give such a horribly wrong answer that would leave me in pain, perhaps for the rest of my life.
It never occurred to me that I would wind up with poorly healed vertebrae and resulting pain to the extent that the travel and other activities I had looked forward to in retirement would be off the table.
It never occurred to me that a specialist doctor with so much advanced training could so casually purvey such dangerous information.
Bottom line: No amount of money could repay what I have lost, including years of enjoyable activity as I approach the end of my life.
I should probably give him an alias here. Why? Because a doctor so casually giving a patient a dangerously erroneous answer to a very legitimate question might be first in line to bring a defamation action against the patient they had so badly harmed with such a carelessly inaccurate answer to a question. And of course there would be the embarrassment of revealing to the world that I was dumb enough to believe him in the first place!
Back to the present: this is the season when in years past I would start planning a nice mid-winter getaway to someplace warm and sunny.
Travel? Now? I can't even drive a car! Even walking a few blocks is painful, let alone handling luggage, dealing with airports or the rest of it.
But for now let's just say that at least in my experience Dr. Timothy Flood was to the practice of medicine what Donald J. Trump was to the United States presidency: except the latter didn't leave me looking forward to a lifetime of disability and pain!
###
MY LETTER OF NOVEMBER 29, 2022, TO THE RETINA DOCTORS Draft
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.
(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! )
Thursday, November 17, 2022
RETINA DOCTORS: PLEASE WATCH YOUR WORDS!
I had great respect for the retinal specialists at Illinois Retinal Associates. Sadly, my respect and trust were my undoing. I had asked the retina doctor formerly treating me whom (y'makh shemo), I will just call Dr. Deluge (who by now may hopefully be retired so that he cannot hurt anyone else) why I had this eye condition, macular degeneration.
His answer to me was: “Because you are on Prolia!”
Prolia! The shot I received every six months for osteoporosis!
Based on this doctor's groundless words, I delayed a Prolia shot.
I knew I risked my bones, but if I had to chose bones or my vision,
I would have to choose my vision.
Why in the world did Dr. Deluge not give me the CORRECT information: that the retinal condition was associated with OSTEOPOROSIS and not the drug to TREAT that condition?
Was it ignorance? Or just plain old carelessness? I will never know.
But, whatever the reason for this astoundingly inaccurate remark,
I live each day with the permanent and painful damage resulting from these words, so thoughtlessly and carelessly spoken!
Shortly after that Prolia shot was due I had an excruciating backache.
I cabbed to the nearest ER where X-rays showed THREE vertebral fractures. They taped my back, but their pain pills didn’t make a dent in the pain. And the University of Chicago Pain clinic only offered addictive narcotics, which frightened me.
Pain made driving so hazardous that I sadly gave up my car.
And the travel I had so eagerly looked forward to in retirement? Now impossible.
Why did this happen? 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.
Immediately I realized that had the retina doctor given me the correct answer: “because you have osteoporosis” none of this would likely have happened. I would have gotten that Prolia shot on time, my vertebrae would not have fractured, and my life would be normal.
I cannot imagine why that retina doctor could not squeeze a correct answer out of his hyper-educated mouth!
I cannot believe he did not know! Did he simply not care?
I’m back on Prolia, but the painful damage is forever. The Prolia doctor was shocked when I told her what happened. The fractures have healed, but x-rays resemble a child’s broken Tinker-Toy!
Pain has now decreased to the point that I can avoid habituating drugs, but it is always there when I am sitting or standing.
I let my car go as the pain made driving hazardous. I try to be as active as pain permits, and I do the exercises prescribed by a physical therapist.
But the travel and other activities to which I had so eagerly looked forward retirement? Impossible. And all because of a few misleading words from a respected eye specialist whom I had the misfortune (or perhaps stupidity) to trust! I write this in hopes that this will not happen to anyone else! 11/29/22
Monday, November 14, 2022
OSTEOPOROSIS, PROLIA AND THE RETINA: LEARNING THE HARD AND PAINFUL WAY
OSTEOPOROSIS, PROLIA AND THE RETINA: WHAT I LEARNED -- THE HARD WAY!
Background: Early in 2018 I sustained three painful vertebral fractures, two thoracic and one lumbar.
For some time I'd been treated for an eye condition called "wet macular degeneration" treated by injections into the eye of a medicine called "Eylea."
Having even a skilled and trusted retina specialist stick a needle into the eye is frightening. So understandably I wanted to know more about it and asked the retinal specialist why I had this retina condition.
His immediate answer: "Because you are on Prolia."
Prolia! The shot I received twice a year for osteoporosis!
I knew that fractures could occur if I did not get this shot on time, but the prospect of losing my eyesight if I stayed ON Prolia was even more frightening.
So based on the retina doctor's response, I delayed my upcoming Prolia shot, hoping to “wean” myself from this drug that I now believed threatened my eyesight.
Weeks after date of my “skipped” Prolia shot, I had a terrible backache -- worse than anything I had ever had in my life. The pain so bad I got a cab to the Northwestern ER where x-rays revealed three fractures: one lumbar, 2 thoracic. They sent me home with an Rx for pain pills that hardly made a dent in the terrific pain.
Only later, after this damage was done, did I learn that the macular degeneration was associated with the osteoporosis itself, and NOT with Prolia!
Why that retina doctor couldn't have simply said: "The macular degeneration is related to your osteoporosis," I will never know.
Now in November, 2022, after years of physical therapy and prescribed exercise to gain some mobility and build core muscles (which cannot adequately replace fractured vertebrae), I can get around a bit, albeit unsteadily and in pain.
I’m sad and angry to miss the travel I’d anticipated in retirement. But there was no way I could manage this with my shattered vertebrae.
And, because driving was dangerously painful, the car and driver’s license went too.
Likewise holiday get-togethers with family (all COVID-19 immunized and with masks as needed) will be painful if I can manage them at all.
And all because of the flood of disinformation I received from an eye specialist who certainly should have known better!
I should add: During this painful time I asked an old friend, LRD, a pediatric ophthalmologist with many years of clinical surgical and research experience at major medical centers and at the National Institutes of Health National Eye Institute, what she knew about the drug Prolia (denosumab) and macular degeneration.
She kindly reached out to respected colleagues at these flagship agencies and returned with the news that there was nothing reliable suggesting a causal relationship between Prolia and macular degeneration. References she found from credible sources noted links between macular degeneration and osteoporosis itself.
It might be well for eye doctors to consider that while macular degeneration may be related to osteoporosis, this condition is not likely because of Prolia.
Joan Levin, jdlevin@bright.net
Written November 12, 2022
Fom my blog, JoansBackboneDisaster. November, 2022
http://www.joansbackbonedisaster.com/
http://www.joansbackbonedisaster.com/2022/11/osteoporosis-prolia-and-retina-what-i.html
aturday, November 12, 2022
A LONELY SUSHI DINNER
Saturday November 12 2022
Back hurting a lot today from the painful vertebral fractures resulting a few years ago when the Retina Doctor told me macular degeneration was because I was on Prolia! (And not because I had osteoporosis which would have been the correct answer.)
More about the resulting delay of a Prolia shot and the fractured vertebrae resulting elsewhere in this blog.
I ordered an Uber dinner from Kamehachi Sushi this evening. It was good but I felt so lonely eating it.
But no way could I have spent an evening sitting up in a restaurant with friends. Just too much pain flooding my body.
All so totally avoidable!
###
WHAT WOULD HAVE HAPPENED TO ME IF I HAD SO TOTALLY SCREWED UP?
AM I ANGRY? LET ME PUT IT THIS WAY: DURING MY YEARS AS A LAWYER IF I HAD GIVEN A CLIENT AS DANGEROUSLY INACCURATE INFORMATION AS THE "RETINAL SPECIALIST" HEREIN GAVE ME (THAT MY MACULAR DEGENERATION WAS BECAUSE I WAS "ON PROLIA") I'D LIKELY BE FACING DISBARMENT PROCEEDINGS RIGHT NOW! ###
November 12, 2022
Friday, November 11, 2022
RETINA SPECIALISTS: PLEASE WATCH YOUR WORDS!!!
I have huge respect for the retina doctors. Their skill and knowledge are truly awesome. Unfortunately my respect — and my trust — were my undoing.
Treatment for macular degeneration — involving a needle in the eye — is scary. So, not surprisingly, a few years ago, I asked why I had this condition. The answer from the retina doctor (y'makh sh'mo) was direct and clear: “Because you are on Prolia!”
Did Prolia cause my macular degeneration? Must I choose between my eyes or my bones? Losing my vision was a horrible thought. So hoping to protect my eyes, about four years ago I risked my bones and delayed a Prolia shot.
The results were swift and painful. Shortly after that Prolia shot was due I developed a terrible backache. I must have looked awful for I saw the look in our doorman’s eyes as he got me a cab to the nearest ER.
X-rays revealed THREE vertebral fractures! I left with my back taped and an Rx for pain pills. Despite the pain pills, I was in pain beyond belief. Every step was painful and I lived on whatever I could get delivered from a nearby deli.
There was no way I could take a walk, and driving was not possible — the pain was too distracting. Likewise, the active travel I had so eagerly looked forward to in retirement was also off the table, to my sorrow.
The university pain management clinic I consulted had nothing to return even a semblance of the mobility I had hoped for in retirement.
Why did this happen? An old friend, an ophthalmologist, now retired from the National Eye Institute, in Bethesda, MD, confirmed links between osteoporosis and macular degeneration, but NOT between Prolia and macular degeneration.
I’m back on Prolia, but the damage remains. The fractures healed but vertebral x-rays resemble a child’s broken Tinker-Toy! The pain is less severe, but always there when sitting or standing. Hopes of active senior years and the travel to which I looked forward during my working life, are gone. And all because of misleading words from a respected specialist who must have known better. I write this in hopes it will not happen to anyone else!
###
HAVING FUN WHILE CREATING NEW KNOWLEDGE?
The online statement from the practice of the retina doctor in question here:
https://www.illinoisretina.com/providers/timothy-flood-md-facs/
"Taking care of patients who have retinal problems and helping them to relieve their anxiety over the health of their eyes is very rewarding. Research is also important to me. To be able to take the knowledge you have gained through a clinical trial and change the way physicians treat patients is very exciting. Here at Illinois Retina we're helping people, having fun doing it and creating new knowledge at the same time."
Question: Was it fun to tell me that my retinal condition was "because I was on Prolia" (a drug for osteoporosis) rather than because I had osteoporosis (which I later learned was the truth).
Was it fun to purvey this misinformation with the predictable result that I would believe that this drug for osteoporosis threatened my eyesight, with the further predictable result that my efforts to get off of it, in order to save my eyes, would leave me with multiple vertebral fractures and in pain, perhaps for the rest of my life, unable to travel, drive a car, or even visit with friends and family without pain?
Fun?
I still cannot understand why this doctor could not have told me that my retinal condition was related to the osteoporosis itself, and not to the medication (Prolia) I needed to keep my bones from breaking!
I sincerely hope this "creates new knowledge" for all eye doctors, so that their patients will not risk having their active lives so painfully cut off as I have!
###
PLACEBOS, FROM THE NATIONAL GEOGRAPHIC
Sunday, November 13, 2022
https://www.nationalgeographic.com/magazine/article/healing-science-belief-placebo?rid=A926C9E93F8D798D1364E606C3406E42&cmpid=org=ngp::mc=crm-email::src=ngp::cmp=editorial::add=Health_20221113
https://www.nationalgeographic.com/magazine/article/healing-science-belief-placebo?rid=A926C9E93F8D798D1364E606C3406E42&cmpid=org=ngp::mc=crm-email::src=ngp::cmp=editorial::add=Health_20221113
Unfortunately my pain and anger are still at a level that I have a hard time applying this information.
November 10, 2022
Wednesday, November 9, 2022
OSTEOPOROSIS, PROLIA AND THE RETINA; WHAT I AM LEARNING
Early in 2018 I sustained three painful vertebral fractures, two thoracic and one lumbar. Based on a retinal doctor’s remark that I had macular degeneration “because you are on Prolia,” I had delayed my Prolia shot, hoping to “wean” myself from this drug that I now believed -- based on what this eye specialist had told me -- threatened my eyesight.
Only later, after the damage was done, leaving me with a flood of pain, did I learn that the macular degeneration was associated with osteoporosis, not with Prolia!
Why that retina doctor couldn't have simply said: "Your macular degeneration is related to your osteoporosis," I will never know.
Predictably, I suffered three painful vertebral fractures, two thoracic and one lumbar. Now, after years of physical therapy and exercise to gain some mobility and build core muscles (which can never adequately replace vertebral bones), I can get around a little — albeit unsteadily and in pain.
I’m sad and angry to miss travel I’d anticipated in retirement. And as driving was dangerously painful the car and driver’s license went too. Likewise holiday get-togethers with family (all COVID-19 immunized and with masks as needed) will be painful if I can manage them at all.
I should add: I asked an old friend, a retired ophthalmologist who had serve for years as a research director at the National Institutes of Health National Eye Institute what she knew about the drug Prolia (denosumab) and macular degeneration.
She kindly reached out to colleagues at this flagship research agency and returned with the news that there was nothing reliable suggesting a causal relationship between Prolia and macular degeneration. The references she found from credible sources noted connections between macular degeneration and osteoporosis itself.
For this reason, I believe it might be safer for anyone involved with eye conditions to understand that while macular degeneration may be related to osteoporosis, it is not likely because of Prolia.
Written November 5, 2022 ###
Tuesday, November 8, 2022
IT'S MY BACKBONE; I'LL CRY IF I WANT TO!
Whatever date this is posted at, I am writing this on Tuesday evening, November 8, 2022.
This morning was my regularly scheduled Prolia shot at Northwestern Medicine.
While the pain from the broken vertebrae has diminished somewhat, I very much appreciated my son's support getting me there and home!
But my anger still burns when I think of how totally unnecessary these years of pain have been, and all that I have missed, because of the careless words of the retina specialist, whom I shall call "Dr. Timothy Deluge," who told me that my eye condition (macular degeneration) was "because I was on Prolia."
Couldn't he get the word "osteoporosis" out of his medically-trained, specialist-honed mouth? Were there just too many syllables for his valuable time? Or did he really not know the difference between "having osteoporosis" and being "on Prolia?"
My attempt to stop Prolia because of this inexcusably erroneous information resulted in at least three vertebral fractures, leaving me in tremendous pain for years.
I am still unable to enjoy the travel and other activities I so looked forward to in retirement. Even driving a car was so dangerously painful I let that go as well!
Every reliable authority I consulted after this debacle told me that while there was a link between osteoporosis and macular degeneration, there was nothing reliable suggesting that the most widely used pharmaceutical for osteoporosis, Prolia, would have adverse effects on the eyes.
Leslie Gore singing It's my Party and I'll Cry if I Want To reflects how I feel!
https://youtu.be/m6KhXo13_H0
And read about it here!
https://en.wikipedia.org/wiki/It%27s_My_Party
Here is the parody I wrote about this in 2018 when this first happened! It's based on Leslie Gore's 1963 classic!
HAVING FUN WHILE CREATING NEW KNOWLEDGE?
The online statement from the practice of the retina doctor in question here:
https://www.illinoisretina.com/providers/timothy-flood-md-facs/
"Taking care of patients who have retinal problems and helping them to relieve their anxiety over the health of their eyes is very rewarding. Research is also important to me. To be able to take the knowledge you have gained through a clinical trial and change the way physicians treat patients is very exciting. Here at Illinois Retina we're helping people, having fun doing it and creating new knowledge at the same time."
Question from Your Editor:
Thank you, Dr. Timothy Flood! Was it fun to tell me that my retinal condition was "because I was on Prolia" (a drug for osteoporosis) rather than because I had osteoporosis (which I later learned was the truth).
Was it fun to purvey this misinformation with the predictable result that I would believe that this drug for osteoporosis threatened my eyesight, with the further predictable result that my efforts to get off of it, in order to save my eyes, would leave me with multiple vertebral fractures and in pain, perhaps for the rest of my life, unable to travel, drive a car, or even visit with friends and family without pain? Fun?
I still cannot understand why this doctor could not have told me that my retinal condition was related to the osteoporosis itself, and not to the medication (Prolia) I needed to keep my bones from breaking!
I sincerely hope this "creates new knowledge" for all eye doctors, so that their patients will not risk having their active lives so painfully cut off as I have!
###
PLACEBOS, FROM THE NATIONAL GEOGRAPHIC
Sunday, November 13, 2022
https://www.nationalgeographic.com/magazine/article/healing-science-belief-placebo?rid=A926C9E93F8D798D1364E606C3406E42&cmpid=org=ngp::mc=crm-email::src=ngp::cmp=editorial::add=Health_20221113
Unfortunately my pain and anger are still at a level that I have a hard time applying this information.
Wednesday, November 9, 2022
OSTEOPOROSIS, PROLIA AND THE RETINA; WHAT I AM LEARNING
Early in 2018 I sustained three painful vertebral fractures, two thoracic and one lumbar. Based on a retinal doctor’s remark that I had macular degeneration “because you are on Prolia,” I had delayed my Prolia shot, hoping to “wean” myself from this drug that I now believed -- based on what this eye specialist had told me -- threatened my eyesight.
Only later, after the damage was done, leaving me with a flood of pain, did I learn that the macular degeneration was associated with osteoporosis, not with Prolia!
Why that retina doctor couldn't have simply said: "Your macular degeneration is related to your osteoporosis," I will never know.
Predictably, I suffered three painful vertebral fractures, two thoracic and one lumbar. Now, after years of physical therapy and exercise to gain some mobility and build core muscles (which can never adequately replace vertebral bones), I can get around a little — albeit unsteadily and in pain.
I’m sad and angry to miss travel I’d anticipated in retirement. And as driving was dangerously painful the car and driver’s license went too. Likewise holiday get-togethers with family (all COVID-19 immunized and with masks as needed) will be painful if I can manage them at all.
I should add: I asked an old friend, a retired ophthalmologist who had serve for years as a research director at the National Institutes of Health National Eye Institute what she knew about the drug Prolia (denosumab) and macular degeneration.
She kindly reached out to colleagues at this flagship research agency and returned with the news that there was nothing reliable suggesting a causal relationship between Prolia and macular degeneration. The references she found from credible sources noted connections between macular degeneration and osteoporosis itself.
For this reason, I believe it might be safer for anyone involved with eye conditions to understand that while macular degeneration may be related to osteoporosis, it is not likely because of Prolia.
Written November 5, 2022
###
Tuesday, November 8, 2022
IT'S MY BACKBONE; I'LL CRY IF I WANT TO!
Whatever date this is posted at, I am writing this on Tuesday evening, November 8, 2022.
This morning was my regularly scheduled Prolia shot at Northwestern Medicine.
While the pain from the broken vertebrae has diminished somewhat, I very much appreciated my son's support getting me there and home!
But my anger still burns when I think of how totally unnecessary these years of pain have been, and all that I have missed, because of the careless words of the retina specialist, whom I shall call "Dr. Timothy Deluge," who told me that my eye condition (macular degeneration) was "because I was on Prolia."
Couldn't he get the word "osteoporosis" out of his medically-trained, specialist-honed mouth? Were there just too many syllables for his valuable time? Or did he really not know the difference between "having osteoporosis" and being "on Prolia?"
My attempt to stop Prolia because of this inexcusably erroneous information resulted in at least three vertebral fractures, leaving me in tremendous pain for years.
I am still unable to enjoy the travel and other activities I so looked forward to in retirement. Even driving a car was so dangerously painful I let that go as well!
Every reliable authority I consulted after this debacle told me that while there was a link between osteoporosis and macular degeneration, there was nothing reliable suggesting that the most widely used pharmaceutical for osteoporosis, Prolia, would have adverse effects on the eyes.
Leslie Gore singing It's my Party and I'll Cry if I Want To reflects how I feel!
https://youtu.be/m6KhXo13_H0
And read about it here!
https://en.wikipedia.org/wiki/It%27s_My_Party
On the following page is the parody I wrote about this in 2018 when this first happened! It's based on Leslie Gore's 1963 classic!
Nobody knows where my backbone has gone,
It was once strong and fine
Then my insides collapsed with a groan
And I’ve lost a lot of my spine!
It’s my backbone I’ll cry if I want to, cry if I want to, cry if I want to, You would cry too if it happened to you!
My ribs are crushing my iliac crest,
My belly is way out to here,
Can't stand or sit, I just need to rest,
And the pain is making me swear!
Why in the hell did I miss that damned shot?
That’s where this mess got its start!
All this has left me tied up in a knot,
My life is falling apart!
It’s my backbone I’ll cry if I want to,
Cry if I want to, cry if I want to,
You would cry too if it happened to you!
###
Tuesday, October 25, 2022
THE PAINFUL CONSEQUENCES OF FLAWED MEDICAL INFORMATION
It has taken me a long time to figure this out. But now that I have, I want to make sure no one else in similar circumstances winds up as I did - in pain 24/7, unable to drive, travel as I used to, or enjoy many of the activities I so looked forward to in retirement -- because of medical misinformation.
I had been dealing with osteoporosis for quite some time, and had been on Prolia for this condition for several years.
But during this time I learned I had an eye problem.
My vision is not bad. I wear glasses for reading and I get periodic eye exams with an ophthalmologist. At one of these eye examinations the doctor told me I had a retinal condition: macular degeneration, and referred me to a retinal specialist.
The retinal specialist I was seeing at the time confirmed that I had dry macular degeneration in one eye and wet macular degeneration in the other -- a condition that could leave me blind!
The dry macular degeneration could be addressed with the AREDS vitamins available OTC at any drugstore.
The wet macular degeneration, however, had to be treated with periodic shots in the eye. Here, your arms and legs are strapped into a chair while the doctor sticks a needle in your eye with a drug - Eylea. I found this scary and unpleasant!
Naturally I asked this retinal specialist why I had this condition. The answer: "Because you are on Prolia!"
I believed he was giving me the reason I had this eye condition, and that I should act on it, but doing so unleashed a flood of painful and debilitating consequences.
This began with delaying Prolia shots, further threatening (or even damaging) my bones.
It turned out, as I later learned to my sorrow, that the retinal condition was NOT because I was on Prolia as this first retinal doctor had told me. It was because I had osteoporosis!
But at the time, sad to say, I had believed (based on what the earlier retina doctor had erroneously told me) that I had to make a choice between bones and eyes ---- and I opted for my eyes.
This is why I tried to get myself off Prolia. I thought if I could extend the time between shots that that fractures would be less likely.
Another retinal specialist later assured me that it was not the Prolia that had caused the macular degeneration. It was the osteoporosis itself!
But the damage had been done. By failing to get Prolia on time I sustained multiple vertebral fractures leaving me in great pain and greatly disabled.
Activities I looked forward to in retirement - travel, enjoyable times with friends and family, driving a car, and even going for a walk -- are now either impossible or very painful.
I force myself to walk as much as possible even when it is painful, and a physical therapist gave me some core exercises which I do as well.
But muscle is not a great substitute for bone! And I will live with the painful fractures sustained by acting upon this flawed medical information for the rest of my life!
And the frosting on this horrible cake? The first retina doctor (who initially had not wanted to treat me because I was a lawyer and who wanted me to sign a release that I would not sue him — which of course I refused to do — now threatened to sue me if I told anyone about all of this!
Rest assured - he’s history as far as I’m concerned. I see another retina doctor now who says the retina condition is related to osteoporosis and not to Prolia — but the painful and irreversible damage — initiated by the first retinal doctor — has been done!
###
Tuesday, October 18, 2022
WERE DRUGS FOR MY BONES HARMING MY EYES? OR WAS IT THE OSTEOPOROSIS?
As noted elsewhere on these pages:
(http://www.joansbackbonedisaster.com/2021/08/whipsawed-between-two-specialists.html). Because of what turned out to be a flood of dangerously inaccurate information that I was given by an eye specialist, I was concerned about the relationship between osteoporosis drugs (especially Prolia, which I am on) and the macular degeneration, an eye condition now being treated by a retinal specialist.
A brief search turned up articles about relationships between Prolia and macular degeneration, and other osteoporosis drugs (bisphosphonates) in this context as well.
https://www.ncbi.nlm.nih.gov/pubmed/32026309
and an article about an upcoming NIH study
Prolia and Macular degeneration - a phase IV clinical study of FDA data
https://www.ehealthme.com/ds/prolia/macular-degeneration/
This article looks at relationships between Pfizer BioNTech COVID Vaccine and Macular Degeneration:
https://www.ehealthme.com/vs/pfizer-biontech-covid-vaccine/macular-degeneration/
Mainly I learned that macular degeneration is related to osteoporosis itself, rather than to drugs (such as Prolia) used to treat osteoporosis (as this retinal specialist had told me).
But I still searched the medical literature as well as I could to see if Prolia itself was threatening my eyesight. There was not much information specifically raising this point. I could not find much.
https://iovs.arvojournals.org/article.aspx?articleid=2698607
This article also appears in another journal, Investigative Ophthalmology & Visual Science, for August 2018.
Here are the conclusions:
"Conclusions: Our findings suggest that osteoporosis plays a role in AMD development in postmenopausal women.”
Having read this, on Thursday, August 5, 2021 I called Amgen's Prolia hotline: 1-800-772-6436, and asked if they had any information about Prolia and macular degeneration, or retina, or anything related. And said they had nothing. (Sometimes they say they have information but they'll send it to your doctor, but in this case the agent said she could find nothing, Based on prior experience with this hotline perhaps I can believe her.)
I'll keep questioning, and will report on these pages if I learn more.
Also see:
https://connect.mayoclinic.org/discussion/osteoporosis-prolia-and-macular-degeneration/
I have commented at the above website as joan26
Also see:
Association Between Osteoporosis and Age-Related Macular Degeneration: The Korea National Health and Nutrition Examination Survey
Tae Keun Yoo 1, Soo Han Kim 2, Jiyong Kwak 1, Hong Kyu Kim 3, Tyler Hyungtaek Rim 1
https://pubmed.ncbi.nlm.nih.gov/30372730/
Back to my own situation (which I also discuss elsewhere in this blog), I suffer to this day from the dangerously erroneous information I received from a doctor -- a retinal specialist -- who told me that my eye condition was "because you are on Prolia." This misinformation, so carelessly delivered, created a flood of serious and painful difficulties for me.
Based on this misinformation from someone who should have known better, and hoping to wean myself off this drug that I believed was threatening my eyesight, I delayed the next Prolia shot, and, as a direct consequence, suffered three painful vertebral fractures, two thoracic, one lumbar.
Vertebral fractures cannot be set. I was given a tight corset to wear and spent the next several months mostly in bed (also not healthy) because standing and walking were so painful. I also got rid of my car as it was dangerously painful to drive.
Today, years later, I am still in a good deal of pain. The fractures have healed, albeit in a crooked way, but the pain is such that I can no longer safely drive a car. I am just grateful that I can sit up now and walk a little without unbearable pain.
The travel and events with friends and family that I had looked forward to are sharply limited because of the pain from these totally unnecessary fractures.
I still don't understand why the retinal specialist who erroneously told me that my macular degeneration was because I was "on Prolia" couldn't have simply answered my question about my macular degeneration by saying: "Because you have osteoporosis."
But this careless and inaccurate remark triggered a flood of events that left me in a lot of pain, rendering normal activity (driving a car, traveling, etc.) impossible.
I only hope others in this retinal doctor's practice are not giving patients this dangerously inaccurate information!
###
Wednesday, October 12, 2022
MACULAR DEGENERATION OF THE RETINA: FROM OSTEOPOROSIS DRUGS OR FROM OSTEOPOROSIS ITSELF?
In other posts I have mentioned macular degeneration of the retina which I have in both eyes.
Doctors have told me that this condition relates to osteoporosis.
Unfortunately, before I met these doctors who told me that the retina condition was related to osteoporosis itself, I acted on what the retina doctor who was then treating me told me.
He said I had this potential serious eye condition because I was on Prolia.
This (as I later learned to my sorrow) was totally incorrect information. But he was the expert and I believed him, and delayed my next Prolia shot, believing I could "wean" myself from this drug.
As a result, I sustained a flood of medical disasters leaving me disabled and in extreme pain. These include three terribly painful vertebral fractures that leave me deformed and in great pain to this day!
I should add that I later found articles associating macular degeneration with osteoporosis but none citing Prolia as the cause.
Here is an example in a journal from Korea:
Here is the citation for FULL TEXT:
https://iovs.arvojournals.org/article.aspx?articleid=2698607
This article also appears in another journal, Investigative Ophthalmology & Visual Science, for August 2018.
https://doi.org/10.1167/iovs.18-24059
Here are the conclusions:
"Conclusions: Our findings suggest that osteoporosis plays a role in AMD development in postmenopausal women."
in other words, these authors pointed more to the underlying condition, osteoporosis, rather than the drug prescribed to treat that condition.
Based upon this, on Thursday, August 5, 2021, I called Amgen's Prolia hotline: 1-800-772-6436, and asked if they had any information about Prolia and macular degeneration, or retina, or anything related. And said they had nothing. (Sometimes they say they have information but they'll send it to your doctor, but in this case the agent said she could find nothing and I based on prior experience I would tend to believe her.)
I'll keep questioning, and will report if I learn more.
But it is already quite clear to me that the flood of pain from the fractures I sustained by avoiding Prolia -- thinking that I had to make a choice between being lame or blind - were totally unnecessary and would never have occurred if that doctor had simply said that the eye issues were related to osteoporosis, rather than blaming the treatment (Prolia) for that condition.
I still do not know if the retina doctor really didn't know this, or if he was just careless with his words. But the damage is done and I will likely live with this flood of pain and deformity for the rest of my life.
###
Monday, October 10, 2022
MY EYESIGHT AT RISK: A WORK IN PROGRESS
As if being lame from the sudden withdrawal of the osteoporosis drug Prolia discussed in other posts, I am learning more about how my eyesight may be at risk!
I have been diagnosed with a retinal disease, macular degeneration, in BOTH eyes. In one eye the less serious dry macular degeneration, treated nutritionally, and in the left eye, the more advanced wet macular degeneration, now being treated with injections by a retinal specialist.
A retinal specialist told me that the osteoporosis drug Prolia was the culprit here, while Amgen maintained the macular degeneration was more likely associated with osteoporosis itself.
This put me in mind of the verse from Rabbi Ben Ezra by Alexander Pope:
Now, who shall arbitrate?
Ten men love what I hate,
Shun what I follow, slight what I receive;
Ten, who in ears and eyes
Match me: we all surmise,
They this thing, and I that: whom shall my soul believe?
I found myself in the same situation!
I generally tend to distrust remarks from drug companies, but it turns out that it was, in fact, the inaccurate and misleading remark by the retinal specialist that unleashed this flood of events -- including three vertebral fractures -- leaving me with much pain and disability to this day!
~~~~~~~~
I will report more as I learn more. But here here are some links — some posted earlier.
1) Prolia and Vision -- Must I Choose between Lame or Blind?
http://www.joansbackbonedisaster.com/2021/05/lame-and-blind-revisited-eyes-have-it.html
This is about the relationship between Prolia (and other osteoporosis drugs as well as osteoporosis itself) and macular degeneration.
2) Will I Have Vision or Bones in 2021.
http://www.joansbackbonedisaster.com/2020/03/will-i-have-any-vision-in-2020.html
This expands on the same frightening theme!
More as I learn more!
~~~~~
P.S. Note added August 2021: Please note that BONE specialists say the retinal situation is not because of the Prolia, and that the osteoporosis itself is responsible for the retinal issues.
And it turns out that the comment regarding Prolia made by the retinal specialist that unleashed this flood of pain and disability was totally inaccurate. But I suffer from this misinformation to this day. I'll keep reporting as I learn more!
###
Tuesday, October 25, 2022
THE PAINFUL CONSEQUENCES OF FLAWED MEDICAL INFORMATION
It took a while to figure this out. But now that I have, I want to make sure no one else in similar circumstances winds up as I did - in pain 24/7, unable to drive, travel as I used to, or enjoy many of the activities I so looked forward to in retirement -- because of medical misinformation.
I had been dealing with osteoporosis for quite some time, and had been on Prolia for this condition for several years.
But during this time I learned I had an eye problem.
My vision is not bad. I wear glasses for reading and I get periodic eye exams with an ophthalmologist. At one of these eye examinations the doctor told me I had a retinal condition: macular degeneration, and referred me to a retinal specialist.
The retinal specialist confirmed that I had dry macular degeneration in one eye and wet macular degeneration in the other -- a condition that could leave me blind!
The dry macular degeneration could be addressed with the AREDS vitamins available OTC at any drugstore.
The wet macular degeneration, however, had to be treated with periodic shots in the eye. Here, your arms and legs are strapped into a chair while the doctor sticks a needle in your eye with a drug - Eylea. I found this scary and unpleasant!
Naturally I asked the doctor why I had this condition. The answer: "Because you are on Prolia!"
I believed he was giving me the reason I had this eye condition, and that I should act on it, but doing so unleashed a flood of painful and debilitating consequences.
It turned out, as I later learned to my sorrow, that the retinal condition was NOT because I was on Prolia as this retinal doctor had told me. It was because I had osteoporosis!
But at the time, I believed (based on what this first retina doctor had told me) that I had to make a choice between bones and eyes ---- and I opted for my eyes. (And this first retinal specialist later threatened to sue me — a whole other matter.)
But this is, initially, why tried to get myself off Prolia. I thought if I could extend the time between shots that that fractures would be less likely. But instead, my efforts to get off Prolia (then believing what the first retina specialist had erroneously told me, that Prolia was the cause of the retinal condition) only made more trouble for me!
Another retinal specialist later assured me that it was not the Prolia that had caused the macular degeneration. It was the osteoporosis itself!
But the damage had been done. By failing to get Prolia on time I sustained multiple vertebral fractures leaving me in great pain and greatly disabled.
And, I should add, the first retinal doctor (who had given me the erroneous information) threatened to sue me!
But worse than all of this, activities I looked forward to in retirement — travel, enjoyable times with friends and family, driving a car, and even going for a walk -- are now either impossible or very painful because of my failure to get these Prolia shots, based on that inaccurate information!
I force myself to walk as much as possible even when it is painful, and a physical therapist gave me some core exercises which I do as well.
But muscle is not a great substitute for bone! And I will live with the painful fractures sustained by acting upon this flawed medical information from a vaunted “specialist” for the rest of my life!
###
Tuesday, October 18, 2022
WERE DRUGS FOR MY BONES HARMING MY EYES? OR WAS IT THE OSTEOPOROSIS?
As noted elsewhere on these pages:
(http://www.joansbackbonedisaster.com/2021/08/whipsawed-between-two-specialists.html). Because of what turned out to be a flood of dangerously inaccurate information that I was given by an eye specialist, I was concerned about the relationship between osteoporosis drugs (especially Prolia, which I am on) and the macular degeneration, an eye condition now being treated by a retinal specialist.
A brief search turned up articles about relationships between Prolia and macular degeneration, and other osteoporosis drugs (bisphosphonates) in this context as well.
https://www.ncbi.nlm.nih.gov/pubmed/32026309
and an article about an upcoming NIH study
Prolia and Macular degeneration - a phase IV clinical study of FDA data
https://www.ehealthme.com/ds/prolia/macular-degeneration/
This article looks at relationships between Pfizer BioNTech COVID Vaccine and Macular Degeneration:
https://www.ehealthme.com/vs/pfizer-biontech-covid-vaccine/macular-degeneration/
Mainly I learned that macular degeneration is related to osteoporosis itself, rather than to drugs (such as Prolia) used to treat osteoporosis (as this retinal specialist had told me).
But I still searched the medical literature as well as I could to see if Prolia itself was threatening my eyesight. There was not much information specifically raising this point. I could not find much.
https://iovs.arvojournals.org/article.aspx?articleid=2698607
This article also appears in another journal, Investigative Ophthalmology & Visual Science, for August 2018.
Here are the conclusions:
"Conclusions: Our findings suggest that osteoporosis plays a role in AMD development in postmenopausal women.”
Having read this, on Thursday, August 5, 2021 I called Amgen's Prolia hotline: 1-800-772-6436, and asked if they had any information about Prolia and macular degeneration, or retina, or anything related. And said they had nothing. (Sometimes they say they have information but they'll send it to your doctor, but in this case the agent said she could find nothing, Based on prior experience with this hotline perhaps I can believe her.)
I'll keep questioning, and will report on these pages if I learn more.
Also see:
https://connect.mayoclinic.org/discussion/osteoporosis-prolia-and-macular-degeneration/
I have commented at the above website as joan26
Also see:
Association Between Osteoporosis and Age-Related Macular Degeneration: The Korea National Health and Nutrition Examination Survey
Tae Keun Yoo 1, Soo Han Kim 2, Jiyong Kwak 1, Hong Kyu Kim 3, Tyler Hyungtaek Rim 1
https://pubmed.ncbi.nlm.nih.gov/30372730/
Back to my own situation (which I also discuss elsewhere in this blog), I suffer to this day from the dangerously erroneous information I received from a doctor -- a retinal specialist -- who told me that my eye condition was "because you are on Prolia." This misinformation, so carelessly delivered, created a flood of serious and painful difficulties for me.
Based on this misinformation from someone who should have known better, and hoping to wean myself off this drug that I believed was threatening my eyesight, I delayed the next Prolia shot, and, as a direct consequence, suffered three painful vertebral fractures, two thoracic, one lumbar.
Vertebral fractures cannot be set. I was given a tight corset to wear and spent the next several months mostly in bed (also not healthy) because standing and walking were so painful. I also got rid of my car as it was dangerously painful to drive.
Today, years later, I am still in a good deal of pain. The fractures have healed, albeit in a crooked way, but the pain is such that I can no longer safely drive a car. I am just grateful that I can sit up now and walk a little without unbearable pain.
The travel and events with friends and family that I had looked forward to are sharply limited because of the pain from these totally unnecessary fractures.
I still don't understand why the retinal specialist who erroneously told me that my macular degeneration was because I was "on Prolia" couldn't have simply answered my question about my macular degeneration by saying: "Because you have osteoporosis."
But this careless and inaccurate remark triggered a flood of events that left me in a lot of pain, rendering normal activity (driving a car, traveling, etc.) impossible.
I only hope others in this retinal doctor's practice are not giving patients this dangerously inaccurate information!
###
Wednesday, October 12, 2022
MACULAR DEGENERATION OF THE RETINA: FROM OSTEOPOROSIS DRUGS OR FROM OSTEOPOROSIS ITSELF?
In other posts I have mentioned macular degeneration of the retina which I have in both eyes.
Doctors have told me that this condition relates to osteoporosis.
Unfortunately, before I met these doctors who told me that the retina condition was related to osteoporosis itself, I acted on what the retina doctor who was then treating me told me.
He said I had this potential serious eye condition because I was on Prolia.
This (as I later learned to my sorrow) was totally incorrect information. But he was the expert and I believed him, and delayed my next Prolia shot, believing I could "wean" myself from this drug.
As a result, I sustained a flood of medical disasters leaving me disabled and in extreme pain. These include three terribly painful vertebral fractures that leave me deformed and in great pain to this day!
I should add that I later found articles associating macular degeneration with osteoporosis but none citing Prolia as the cause.
Here is an example in a journal from Korea:
Here is the citation for FULL TEXT:
https://iovs.arvojournals.org/article.aspx?articleid=2698607
This article also appears in another journal, Investigative Ophthalmology & Visual Science, for August 2018.
https://doi.org/10.1167/iovs.18-24059
Here are the conclusions:
"Conclusions: Our findings suggest that osteoporosis plays a role in AMD development in postmenopausal women."
in other words, these authors pointed more to the underlying condition, osteoporosis, rather than the drug prescribed to treat that condition.
Based upon this, on Thursday, August 5, 2021, I called Amgen's Prolia hotline: 1-800-772-6436, and asked if they had any information about Prolia and macular degeneration, or retina, or anything related. And said they had nothing. (Sometimes they say they have information but they'll send it to your doctor, but in this case the agent said she could find nothing and I based on prior experience I would tend to believe her.)
I'll keep questioning, and will report if I learn more.
But it is already quite clear to me that the flood of pain from the fractures I sustained by avoiding Prolia -- thinking that I had to make a choice between being lame or blind - were totally unnecessary and would never have occurred if that doctor had simply said that the eye issues were related to osteoporosis, rather than blaming the treatment (Prolia) for that condition.
I still do not know if the retina doctor really didn't know this, or if he was just careless with his words. But the damage is done and I will likely live with this flood of pain and deformity for the rest of my life. ###
Monday, October 10, 2022
MY EYESIGHT AT RISK: A WORK IN PROGRESS
As if being lame from the sudden withdrawal of the osteoporosis drug Prolia discussed in other posts, I am learning more about how my eyesight may be at risk!
I have been diagnosed with a retinal disease, macular degeneration, in BOTH eyes. In one eye the less serious dry macular degeneration, treated nutritionally, and in the left eye, the more advanced wet macular degeneration, now being treated with injections by a retinal specialist.
A retinal specialist told me that the osteoporosis drug Prolia was the culprit here, while Amgen maintained the macular degeneration was more likely associated with osteoporosis itself.
This put me in mind of the verse from Rabbi Ben Ezra by Alexander Pope:
Now, who shall arbitrate?
Ten men love what I hate,
Shun what I follow, slight what I receive;
Ten, who in ears and eyes
Match me: we all surmise,
They this thing, and I that: whom shall my soul believe?
I found myself in the same situation!
I generally tend to distrust remarks from drug companies, but it turns out that it was, in fact, the inaccurate and misleading remark by the retinal specialist that unleashed this flood of events -- including three vertebral fractures -- leaving me with much pain and disability to this day!
I will report more as I learn more. Here here are some links to what I've posted earlier.
1) Prolia and Vision -- Must I Choose between Lame or Blind?
http://www.joansbackbonedisaster.com/2021/05/lame-and-blind-revisited-eyes-have-it.html
This is about the relationship between Prolia (and other osteoporosis drugs as well as osteoporosis itself) and macular degeneration.
2) Will I Have Vision or Bones in 2021.
http://www.joansbackbonedisaster.com/2020/03/will-i-have-any-vision-in-2020.html
This expands on the same frightening theme!
More as I learn more!
~~~~~
P.S. Note added August 2021: Please note that BONE specialists say the retinal situation is not because of the Prolia, and that the osteoporosis itself is responsible for the retinal issues.
And it turns out that the comment regarding Prolia made by the retinal specialist that unleashed this flood of pain and disability was totally inaccurate. But I suffer from this misinformation to this day. I'll keep reporting as I learn more!
###