The story of my left eye – so far: Part III
[Part I can be found here.
Part II can be found here.]
“It’s very possible we won’t be able to remove your cataract,” the renowned cataract surgeon at Mass Eye and Ear repeated, and went on for many minutes in that same vein. This was no standard disclaimer of the type that all surgeons mention, in which unforeseen and unusual bad outcomes can happen but are highly unlikely. This was his emphasis, and he kept repeating how difficult my case was.
I felt very alone in that room. Was I hearing him right? I wished I had someone in there with me, or was at least recording what he was saying, because it was so shocking I was starting to wonder if I was perceiving it correctly. I asked him whether he could tell me my chances of success – give me some sort of percentage of likely success.
“No, I cannot possibly do that,” he answered.
This was unique in my experience. I’d had other tricky surgery consults for my back and arm injuries, and doctors had always answered that question. So I asked him again, saying that maybe he could just give me a rough idea.
He refused again. He could not and would not do it.
He barely spoke about the usual things like what kind of lens I might get implanted. It sounded to me as though he had given up before he even began. This was especially awful because I was under the distinct impression that he was someone who supposedly saw tough cases and plenty of them. If he couldn’t fix it, who could?
I felt lost and almost terrified. I had not expected this.
I asked him another question: could the synechiae (adhesions) have occurred because of my iridotomy? “Absolutely, ” he answered.
That at least seemed like the right answer to me, although it contradicted what the previous doctor had told me.
This Mass Eye surgeon added that if the cataract surgery failed, than I would need more eye surgery or perhaps several more eye surgeries of a more complex nature. But don’t worry, he would refer me to other surgeons for that, and Mass Eye had plenty of good eye surgeons.
Here we were, talking about the repair surgery for a surgery that hadn’t even happened yet.
I didn’t know what else to do, so I made an appointment for cataract surgery with him in about two months. At the very end he tried to reassure me by saying that at Mass Eye they usually were successful. After hearing for about twenty minutes how unsuccessful he expected my surgery to be, I didn’t feel the least bit confident.
I wanted to give myself a little time to think. But as time passed, the fear I had of that surgery never abated. In fact, the fear became worse as the surgery date – the first week of March – approached. I couldn’t picture letting this surgeon perform the surgery, but although I did searches for doctors specializing in complex cataract surgery, I couldn’t figure out where to go to find someone to trust. Mass Eye and Ear was supposed to set the standard for eye surgery in New England, and if they didn’t think they could fix it I felt lost and depressed and didn’t know where to turn.
I spoke to my brother and he mentioned he had an eye surgeon friend who might be willing to talk to me and give advice. She was very nice, but told me that most eye doctors didn’t see much of this condition, and that my local eye doctor who’d said he saw one or two a year was fairly typical. She’d try to find out who might be more experienced, and asked me if I was willing to travel to other parts of New England. I said I certainly was, and that I’d be more than willing to travel to New York. I probably should have said I’d be willing to travel anywhere, but I figured that New England and New York – the places she knew best – ought to have enough eye surgeons for her to be able to find one for me. But she didn’t seem to be able to find what I was looking for.
About a week before the scheduled surgery I called the Mass Eye doctor and we talked again. I had to make sure I had heard him right and that I wasn’t letting my imagination and fear run wild. He reiterated the entire message and even explained further. He said again that my case was unusual and especially difficult. My left eye hadn’t dilated at all in his office, and now instead of adhesions in about a quarter of my iris’ circumference – which had been the case six months earlier – now my lens and iris were stuck together for 180 degrees of the lens’ circumference. There also was some sort of extra membrane there.
I asked him whether I was the most difficult synechiae case he’d ever seen. He said “I won’t answer that.” Was that an answer of a sort?
And why on earth had the adhesions, which had involved about a quarter of the circumference of my eye for the previous seven years or so, suddenly doubled in size and scope in six months? I didn’t even bother to ask him that one; I was pretty sure there was no answer to be had.
At the end of the conversation, I told him that to be honest I was thinking of canceling the surgery. He said that I’d better cancel soon if I was going to cancel at all, so that they could schedule someone else for that time. I said I’d let him know within the next twenty-four hours.
You can imagine what those twenty-four hours were like. For the rest of the day and that night I felt sick to my stomach. I couldn’t see myself having the surgery with him – I really didn’t want him to go near me – but my vision in that eye was so poor and only slightly correctable with eyeglasses, and I felt I had to do something about it. But I had no idea where to go.
The tension mounted and I felt more and more ill. Talk about gut feelings! Around 1 AM, I did a search on my computer – the same one I’d done before I’d ever seen this doctor – for “synechiae and cataract surgery,” and this article popped up. I’d read it before, but that was before my appointment, when I’d still thought that Mass Eye and Ear would solve my problems and I wasn’t really looking for another doctor.
Now I read it again. The title was, “Synechiae can be managed during cataract surgery.” After having heard so much about how mine probably couldn’t be managed, I felt an immediate sense of relief on just reading that title. It was so calm and so positive. Can be managed.
And then it occurred to me to find the location of the doctor who’d written it. After all, he apparently had enough of an interest in the problem of synechiae and cataracts to have written on the topic. I discovered that his office was in Los Angeles, and that fact instantly gave me a good feeling as well. My ex-husband’s family lived there and I know LA very well. In fact, I’d had my arm surgery in LA when no one on the east coast had been willing to take a chance on me. My son had had his shoulder surgery there, and my husband his knee surgery.
The doctor’s name was Uday Devgan, and his website had hundreds of stories from satisfied patients and from other eye doctors. I realize these things can be bogus, but they were so detailed and so heartfelt that I felt buoyed up. Here’s just one example:
At 67 years of age, I had cataract surgery in Rancho Mirage, California. The surgeon botched one of my eyes, resulting in the loss of practically all eyesight in that eye. I consulted SEVEN ophthalmologists to learn the answers to three simple questions: 1) what was the problem, 2) how did it develop, and 3) what could I do about it.
NONE of these doctors could answer any of these questions, and I didn’t want to sue anyone. I just wanted to fix my eyesight. Most of the responses were shoulder shrugs, and a few were downright insulting, for example, one supposedly famous doctor said, “It’s academic at this point.”…
Finally, the last of the seven docs said, “I’m a pretty good surgeon, but I’m not good enough for your problem. If I had your problem, there is only one doctor I’d go to in Southern California. His name is Uday Devgan. Don’t let anyone else touch your eye.”
We beat a path to Dr. Devgan’s door. Low and behold, not only did he have the most and more up to date equipment than any surgeon we had visited, but within five minutes, he had answered ALL my questions. My cataract surgeon had made too large of an incision in my eye that was too close to the center, causing extreme astigmatism.
Dr. Devgan did three important things for me. First, he explained the entire problem and how he could resolve it. Second, his manner and the expertise that shined through gave me hope. And finally, after a year of healing from my botched cataract surgery, Dr. Devgan performed a PRK laser operation on my harmed eye that reshaped it and gave me 20/20 vision two months later in that eye.
I decided then and there at about 3:00 AM, that I would call Dr. Devgan’s office the next morning.
[To be continued….]
Suspense! So very glad you found someone who could handle your case effectively.
This has the makings of a real thriller.
Poignant.
Chilling.
And it’s also educational.
Learn neat stuff as you ride that rollercoaster…
I’d make a pitch.
Do you have an agent?
Even though I know the ending she’s still got me hanging on the edge of my seat!
The Mass Eye surgeon’s demeanor is very inconsistent with medical specialists I have dealt with. First, like pilots, most of them tend to avoid negative emotions and are always calm. Second, they always seem comfortable sharing risk estimates; “A 20% of x, a 70% chance of y.”
Very odd behavior and unhelpful. The last thing someone suffering needs.
Rancho Mirage. Inland Empire, Palm Springs area. That’s a little surprising.
I read your linked article about your arm neuropathy pain from years ago. Along with you, we pay extra for insurance which gives us the maximum choice of providers. We were in an HMO when our children were small. One of them was not treated properly for a condition until we moved and got new doctors two years later. The results of waiting caused life-long problems for our daughter. No more HMOs, ever, for us.
Tommy Jay, Devgan’s office is in Los Angeles. It was the patient’s first surgeon whose surgery failed that was located in Rancho Mirage.
Ah. Silly me.
A very interesting account. Your researching and writing skills at their best.
What’s more interesting to me is that during this stressful and perplexing time, you were still posting high quality material for your readers. Blogging as therapy? Or an inner drive to produce at all costs? Yes, you took a bit of break for the surgery, but it was barely noticeable. You are amazing.
Haven’t commented on this topic yet but reading every one.
Hanging on every thread
I was going to wait until the end of Neo’s story, but I felt pressed for time.
Neo’s blog, and the people who respond to it, are mostly old. To be blunt, we’re dying off.
I’m a few years younger than Neo, but despite my bad habits, I’ve had many years of good health, then a few years ago, about the time that my primary care physician retired, my body started to fail. He had nothing encouraging to say.
So many things wrong, so little that can be done.
I have as an MD often noticed the farther people travel for medical relief, the better they feel about their decision (before any treatment) and the alleged skill of the distant MD. I think it is bizarre. It is part of our computer/internet era.
I don’t want to go to MD Anderson for the sake of the institution’s name and be assigned to a young, mumbling Asian doc because his number came up in their computer. There are a lot of those there!
I’d just as soon stay home for care, which I did for my complex CABG, 9 years ago. The results would not have been better in a megalopolis hundreds of miles away, but the logistic barriers would have been horrible.
Why is it better in LA than in Boston at Mass Eye and Ear? Because it is 3000 miles away and you’ve done your computer search? “Expertise shining through”– give me a break!
And there is a good reason(s) the Mass Eye and Ear doc is highly regarded despite not citing percentage outcomes. I could not do that on demand either.
I am anxiously awaiting the next installment!
Cicero:
I had no intention of going further than Boston. If you actually read these accounts and paid attention to what I was saying, I had good expectations for a Boston surgery but it became very clear that the Boston doctor was expecting failure. I had a rare and unusual situation and it became clear that I needed someone who wasn’t expecting and preparing for failure, someone who was more expert and experienced in treating my condition.
If you don’t comprehend at this point then there’s not much more I can say to get you to understand the picture.
Cicero:
And what’s with this “on demand” business? I asked a reasonable question and got no answer. I didn’t DEMAND anything. I have consulted with other surgeons many times during years of nerve injuries and always got answers to that question; in fact, they usually volunteered the information without my asking. I asked several surgeons, who I know, whether this doctor’s refusal was unusual and they said it was very unusual.
I didn’t write about this part, but when I spoke to the Mass Eye doctor on the phone that time, he said some things that indicated that he had never seen a case like mine.
You are welcome to choose to have a more local surgery under those conditions, but I choose not to do so.
I had my cataract surgery done at the Wilmer Eye Institute and my doctor was an assistant professor of ophthalmology at Johns Hopkins. I was fairly sure they knew their business. Even so, they gave me a list of everything that could go wrong and made me sign it. Worst case, you could go blind.
Ray:
Every doctor gives you that prior to surgery. I fully expect that and I signed it for both iridotomies.
What the Boston doctor was talking about was completely different.
Is Cicero truly an MD? Their (hate to use woke pronouns, but seems apt in this case) comprehension skills are quite lacking, or didn’t actually read what Neo posted.
Neo, I am amazed that you were going through all of this and still managed to keep blogging without missing a beat (keeping up with the news and writing about it does involve staring at a computer screen, after all). Thank God you found Dr. Devgan. Look forward to the next chapter, and a happy ending!
Good luck Neo, but something doesn’t make sense to me. Eye surgery of the kind you need is going to be made with the latest and most sophisticated medical equipment, tools to immobilize your head and eyes, optics to view the interior of your eye and guide the surgeon, and the actual high precision tools that will perform the surgery. Does the doctor in CA have newer and better tools than available at Mass Eye and Ear? Does he have more experience than the surgeons at MEE? Is his diagnosis different from what you are hearing in Boston? What differentiates him from our local doctors?
Neo,
Feeling compassion for your travails, and admiration of your skillful cliffhangers!
Paul in Boston:
Yes. He even has taught at Mass Eye and Ear at times. He is also affiliated with the Jules Stein eye clinic in LA, which is rated as high or higher than Boston Eye.
Same diagnosis. No one disagreed on that.
CV:
OCD maybe, or the need for distraction.
Paul in Boston:
I will add that a similar thing happened to me in Boston about 25 year ago. The head of arm surgery at Mass General refused to operate after first saying he would. I had a complicated case which I’ve written about in other posts. I had been in severe pain for 9 years and had tried everything else. I then went to the top elbow surgeon in the US, who happened to be based in LA . Great guy, too. He did the surgery after explaining the risks at length. It was successful. Dr. Frank Jobe, now deceased, to whom I owe a great deal.
He also diagnosed and fixed my son’s shoulder years later, after Boston doctors had misdiagnosed him.
Neo: I am, like others here, perched on the very edge of my seat, hoping for a happy outcome told to us in your customary high-quality prose. Let me also echo others here in thanking you for being able (compelled?!?) to run your blog in the midst of this horror show. And I will also echo others in applauding your perseverance in conducting a relentless course of research into what might fix what ails you. The discovery of the CA doc was serendipity resting on a foundation of diligent digging. Well done, and I look forward to learning more.
Thanks and may all go well.
What
JJ on April 28, 2022 at 2:44 pm
CV on April 28, 2022 at 5:21 pm
and
Owen on April 28, 2022 at 6:31 pm
said.
Wow, neo!! Maybe I missed it–I never saw an inkling of the frustration and anxiety you must have endured.
My God, what a struggle! Happily, you listened to your inner ‘little voice’ which led to your reading the article by Dr. Devgan.
It amazes me that with all your medical problems you’ve been able to keep up not just a blog but IMO, one in keeping with the highest of standards. Thank you once again for providing this service.
Neo mentions another eminent LA surgeon: “I then went to the top elbow surgeon in the US, who happened to be based in LA . Great guy, too. . . . Dr. Frank Jobe, now deceased, to whom I owe a great deal.”
Jobe’s name sounded familiar to me, so I looked him up– sure enough, he was the surgeon who devised a procedure called ulnar collateral ligament reconstruction for baseball players, aka Tommy John surgery. According to How They Play, 534 MLB players have had Tommy John surgery since 1974, and that’s not counting high school and college baseball players.
https://howtheyplay.com/team-sports/How-Many-MLB-Players-Have-Had-Tommy-John-Elbow-Reconstruction
Didn’t mean to detract from the story of Neo’s left eye, but as she is a baseball fan, I’m sure she was pleased to be treated by a surgeon who rubbed elbows with baseball stars.
You already now this, but you absolutely did the right thing. I had some surgery a few years ago. It’s a common procedure but it’s associated with a life-shortening, progressive disease. I spent about 3 months researching and sifting through literature and getting both 2nd and 3rd and 4th opinions. I settled on a surgeon in a large Texas city that has done thousands of the specific operation, and has had the same surgical team for over 5 years, to a person. The procedure uses complicated machinery for the surgery, so top-notch team work is essential.
It was a success and the risk of progression is abating with time, and will hopefully continue to return with negative tests. I could’ve had the surgery locally, plenty of people do, or in a more proximal big city that has excellent medical expertise (Houston). I later found out this surgeon takes the referrals for difficult cases from hospitals all around the country.
It’s worth the time and effort to learn what you are suffering from and to investigate the alternatives until you find one that places you in the best place for the surgery, the most optimal chance of success. Personalized Medical Advocacy in this country is very sadly lacking, and I’m appalled that it continues to be an unfilled niche. When you have a legal problem, you seek council. That cannot be done with medical problems because of the way our health care system is structured – the doctors and facilities are all sitting on the opposite bench.
PA Cat:
Yes, Dr. Jobe was famous for the Tommy John surgery, which I knew about. But my husband had had a successful knee surgery with him in the 70s, a new procedure as well. I was very impressed with him and his work, and he was also a kind person. When I struck out – as it were – with having elbow surgery in Boston, I went to Jobe because I knew elbows were his specialty. He’d stopped doing knees years earlier. I had ulnar surgery with him, but not the Tommy John type. For various reasons, my case was unusual and challenging.
Aggie:
Glad to hear you had a good result.
Neo–
Jobe does indeed sound like a kind man as well as a top-flight surgeon; he and Tommy John became close friends, and other baseball players who had the surgery spoke of his kindness to them. It doesn’t surprise me that Cooperstown honored Jobe during the Hall of Fame induction weekend in 2013, the year before he died:
https://www.latimes.com/sports/sportsnow/la-sp-sn-frank-jobe-baseball-hall-of-fame-20140307-story.html
I would say you hit a home run when you had ulnar surgery with Frank Jobe.
Funny you should mention an eye specialist in LA…
A friend of mine in NY had eye issues. He went to a few opthalmologists — two or three, possibly for — NYC, none of which could give him any insight. He was at a dinner party where a guest from Southern California was visiting, who was actually a pediatric ophthalmologist. Just out of frustration, my friend asked the good doctor about his eye issues. The doctor listened to him, asked him a few questions (about where he used to live for one), did a quick look at his eyes and recommended another opthalmologist. And told my friend to suggest to the new opthalmologist to check him for ocular histoplasmosis.
My friend made an appointment with the opthalmologist that the SoCal doctor recommended, and told him what the SoCal doctor had suggested. He was examined and the new opthalmologist concurred.
I’m not sure why it took several opthalmologist until a guy (admittedly not just ‘some guy,’ but an eye specialist) at a party figured stuff out.
And my understanding of ocular histoplasmosis is it isn’t really that challenging a diagnosis.
Part of it may have been the adage “When you hear hoofbeats, think ‘horses,’ not ‘zebras.'” And ocular histoplasmosis was a “zebra” as far as opthalmologists in NYC were concerned. When the LA doc asked my friend where he had lived, one of the places we where there was a high rate of histoplasmosis.
Neo, how interesting you went to Dr. Frank Jobe! My brother Mark was practicing rugby at UCLA and dislocated his elbow in a freak accident—a four-inch dislocation. A man who was visiting the university was watching practice and came running over and had Mark carried to the training room where they used huge scissors to cut the pads off and he set the elbow right there.
Mark was told the guy was the greatest sports orthopedic surgeon in the world, Dr. Frank Jobe. He saved my brother from years of misery with his quick actions and not caring that he was just visiting the practice field.
Mark was injured in the Spring, and he actually played rugby that Fall. (And it was world-class rugby—National Championships, rugby tours of Great Britain and Australia, etc.)
Jobe was wonderful. He was taking a big chance to help that afternoon.
I was excited to see his name here.
Cicero, Neo: Isn’t this just another side of the Covid argument? Do we leave the decisions up to the experts or do we non experts make the final evaluation of which expert advice to follow?
Eva Marie:
Not really in this case. Both doctors were supposedly experts. They agreed on the diagnosis and what needed to be done. The Boston doctor conveyed the idea that he wouldn’t be able to do it, however.
Minta Marie Morze:
Jobe was a rare person and a great doctor.
I wrote about him previously in some detail in this post.
I just realized I got the sport wrong in the story above. It was when my brother was practicing Spring football at UCLA, not rugby. Since he played both, I associated Spring with rugby. (And he was able to play football that Fall.) Jobe said it was the largest dislocation he’d ever seen.
Anyway, the story is right. The Doctor acted immediately and with tremendous skill. YAY!
Neo, you are good to share this experience.
Moral: do NOT assume those of you in Boston are getting “the best care”— the good people of Massachusetts lost that in the 80s, when they passed a bill limiting the money hospitals could charge to a multiple adjusted for inflation of an early 80s year.
Huge damper to innovation–like heart transplant programs at that time–and drove truly innovative physicians away. There was no way funding could be increased to help cover costs of new programs.
Also, do NOT assume being associated with a medical school makes for a good surgeon. The best surgeons are BUSY surgeons–volume matters. It is a manual skill as well as intellectual one. The more you do, the more variety you see, the better prepared you are to deal with problems/challenges/deviations.
By the time I was five years out of my training, I realized I had done more of the procedures in my field than the chief of my training program, thirty years my senior had, due to the busyness of my private hospital and the way we practiced allowing me to take care of six patients in a day, five days a week, as opposed to his two a day on the two or three days a week he was in the OR.
Risk takers/innovators often want to be their own bosses,
(and may not have a research interest or a teaching vocation–be more of a
“get ‘er done” kind of person. And do it my way!)
As “Lee Also” said (above): “Part of it may have been the adage “When you hear hoofbeats, think ‘horses,’ not ‘zebras.’” And ocular histoplasmosis was a “zebra” as far as opthalmologists in NYC were concerned.”
I’m convinced that zebras appear more frequently than many, perhaps most, medical professionals conclude. There is a reason medicine is called an art, not a science and that doctors “engage in the practice of medicine” rather than the “performance of established perfection.” Given the number of variables involved it could be no other way.
And, your experience demonstrates the importance of being deeply involved in one’s own care and not taking “maybe” for an answer.
I was in IT for 35 years and very early came to greatly appreciate what I termed the “troll in the basement,” that lone person who had expansive knowledge and understanding of that particular function on that particular system, or the not commonly known quirks on the component I was specifying in a design, well above and beyond what was in the documentation or what others knew, who could comprehensively explain not just the “how” but also the “why.” My bacon was saved numerous times by searching for that person, no matter how difficult it might be, asking the right questions and heeding their recommendation.
Medical treatment is no different. I worry sometimes about those who don’t have the research, analytical and comprehension resources (or the time) necessary to keep digging for the correct answer and, for whatever reasons, are required to accept what is presented. Medicine, like IT, aeronautics or other very technical fields, is insular and resistant to outside influence, especially from Those Who Are Not Members Of The Cult. That barrier can be broken through, as you demonstrate, but often it’s Real Work and sometimes more work that can be successfully accomplished.
God bless Neo, I am praying for you.
Minta@12:38: I played rugby in college. Ours was a club team, meaning one did not have to be a student to play. We had a physician on the squad. I spent part of an afternoon helping him reattach the ear of one of our players, on the sideline, as the match went on. If you see rugby players with headbands, it’s not for sweat. It’s to keep their ears on their head.
Let me tell you, it is some work to get a suture needle through the tissue at the base of the ear.
Elrod Penwhistle — I agree with you about zebras appearing more frequently than most health care professionals assume. I think that saying had morphed into medical professionals thinking, “If you hear hoofbeats, it can only be horses.” The practice of medicine is becoming a checklist.