When stricken with a challenging medical condition, most people seeking the opinion of a referred-to medical specialist, such as a Neurologist, assume each will reach the same conclusions, conduct the same exams, and apply the same thoroughness and attention to detail in treating the patient with dignity, compassion and respect. Au contraire, as my recent experience proves with respect to Consultations with Two (2) Neurologists my Mom and I recently interacted with to treat my Mom’s condition of “Left Homonymous Hermianopsia” (“LHH”) which was correctly diagnosed by a Neuro-Optometrist while my 78-year-old Mom recuperated in a Rehabilitation Facility (“Facility”) from Double Knee Replacement Surgery. In laymen terms, LHH is the loss of half of the field of vision on the same side in both eyes. Therefore, in both of my Mom’s eyes, the left side is seriously compromised and this causes “blind spots” and/or she doesn’t always see or recognize things which quickly approach her like a close relative coming over to kiss her hello. Apparently, it occurs as a result of a stroke or a traumatic brain injury from a fall and it also includes tormenting, but seemingly very specific, cognitive difficulties with respect to the judgment of “spatial” relationships. As a result, my Mom’s “depth perception” is not calibrated correctly and this affects her ability to perform many daily tasks such as driving, cooking (and in her day she was a GREAT Cook!!) and even walking 10-feet from the car to a favorite local store I always drive her to in order to complete simple household errands.
The day-to-day effects of “Left Homonymous Hermianopsia”
I live with my Mom so I have known for 2 years or so that something was “off” about her as her depth perception at times seemed odd and she suffered occasional “spatial incidents.” Those spatial incidents included suddenly falling down when the gradient of a concrete walkway increased by only an inch, going to the car’s rear door when I would pick up her at the supermarket when she should have opened the front passenger door, and being unable to sign her name on, or often even near, a designated line. Then there is the short-term memory loss which starts out as forgetting where keys are left and soon includes the inability to work the TV Remote Control. Mind you, my Mom has remained competent throughout this time and I still enjoy talking to her more than anyone else on the planet. But, at unpredictable times, it has been frustrating to have an engaging and profound conversation with her about politics one minute, only to witness her complain the next minute about a beautiful functioning Dresser being broken because she was unable to “slide” a dresser drawer into it perpendicularly instead of horizontally. Accordingly, if you spent 10 minutes with my Mom, you’d think she is a firecracker for her age with a quick wit to match but any additional time with her would surely reveal this tantalizing problem with “spatial relativity.”
Diagnosing “Left Homonymous Hermianopsia” in my Mom
All along I thought her depth perception problems logically had to be attributed to her vision so during her recent knee surgery and subsequent physical rehabilitation when several nurses at the hospital and then at the Facility asked me if I knew my Mom had vision problems, I asked the Facility’s eye specialist to exam her. Apparently, within only a few minutes, he was able to diagnose a rather large “Cut” in her Left Field of Vision and suggested a Brain MRI to confirm his suspicion of LHH based upon additional anecdotal information he had acquired from me, other members of my family and the staff at the Facility. I then contacted my Mom’s long-time Ophthalmologist to obtain all of her medical records and he told me we needed to see a Neuro-Optometrist to confirm a diagnosis such as LHH. Coincidentally, the Facility’s eye doctor was also a Neuro-Optometrist. Therefore, the family treatment plan was to compare the new Brain MRI to another from approximately a year ago (as we tried to look into this depth perception problem then but the MRI was basically normal “for her age”) at this Neuro-Optometrist’s office shortly after her discharge from the Facility. We did all that and the diagnosis was confirmed by this Neuro-Optometrist with his adamant referral to a neurologist as to “Why” this happened and “How” it could be treated. We never witnessed my Mom having a Stroke, but it is possible she had one. We had seen or been around her when she fell, but no particular fall seemed worthy of an emergency room visit, which we were told was generally the benchmark for such a fall to cause LHH. We left this Neuro-Optometrist’s office feeling good about at least having a Treatment Plan to help my Mom and consulting with a Neurologist was obviously the focus of that Plan.
The Comfort of a Formal Diagnosis
As explained in previous Blog Posts of mine, “Diagnosis Journeys” can be arduous, expensive and emotionally challenging. Knowing this and how my Mom must have been struggling the past two (2) years or so, it was comforting to have a formal diagnosis and then even my Mom came on board and began admitting her silent struggles whereas up until this point she was reluctant to seek a diagnosis for fear of something much worse being discovered. More specifically, she had been married to my Dad for over Fifty (50) years and he passed away in 2008 from a confluence of serious heartbreaking medical conditions which culminated in Sleep Apnea-induced Dementia such that the combination of heart and lung problems from two (2) bouts with Lymphoma, Chemotherapy and Radiation had done such damage that the Dementia destroyed his quality of life. His systemic physical and psychological pain was simply too much for any man to withstand especially when he was unable to love his healthy loving wife and best friend of over 60 years in a manner consistent with the way he felt about her. My Dad was one tough customer and I thank him for passing onto me his resiliency trait but there was no consolation for my Mom and that’s why she was reluctant to learn what “Father Time” had possibly done to her mind and/or body.
Looking for the “Right” Neurologist
While LHH sounds rather tame in terms of medical conditions to live with, I can tell you from living with my Mom that someone must be around her during most of her waking hours to make sure her condition doesn’t cause unexpected physical harm to her. This may not be true with other LHH patients but when she’s 100% healthy, I like to refer to my Mom as being “frequently wrong, but never in doubt” and it is this determination and confidence which worries us about leaving her alone. It is also one of the many reasons why I love her so much. So, we began looking for the “right” Neurologist for her. But how does one do that these days with so much more additional information available via the Internet such that one need not necessarily rely upon Word-of-Mouth recommendations? Moreover, the Neuro-Optometrist who correctly diagnosed my Mom had suggested a few neurologists in his absolutely thorough treatment of her. Those things being said and also living in Northern New Jersey with relatively easy access to New York City doctors, there is always the temptation to find “the best” and those doctors are usually located in major cities such as New York City.
Having much experience myself with a variety of serious medical problems for the past 30 years due to my battles with the chronic, autoimmune and incurable Severe Crohn’s Disease, I decided to contact one of the smartest, most professional, kind and compassionate doctors I knew and asked her whom she would send her mom to if she were stricken with this condition. Thanks to this pulmonologist, we quickly got the name and contact information of that neurologist and took the soonest available appointment which was approximately 3-4 weeks away. For the sake of making this Blog Post about the underlying problem and not about a specific neurologist, let’s refer to this female doctor as “Neurologist #2.” But the day-to-day stress of managing the LHH was intense and taking a toll on everyone so other family members had similarly qualified a few different neurologists located in the Metropolitan New York/New Jersey area so I began looking them up on the different Physician Rating websites.
We figured my Mom would need two (2) neurological opinions anyway so it made sense to pursue a second neurologist. Sure enough, one of the doctors recommended by a family member had GREAT ratings on these Physician Rating websites and they were also similar to the ratings of Neurologist #2 who we were seeing in a few weeks. That seemed to signify the end of our neurologist search so we called this other neurologist (“Neurologist #1”) and he had an appointment available only a few days away. We took that appointment figuring it would at least provide some psychological comfort and we would learn more about my Mom’s condition prior to our appointment with Neurologist # 2 whom we figured would become her Treating Neurologist based upon her affiliation with a very prestigious institution and by virtue of the manner in which we were referred to her (that is, by my excellent and compassionate pulmonologist).
The Appalling Neurologist #1 Experience Begins
Excited to get some answers, we got to the doctor’s offices early. They say you don’t get a second chance to make a first impression and he failed that test when my Mom, still recovering from her Double Knee Replacement Surgery and relying on a cane or a wheelchair, when necessary, had to navigate a STEEP uphill parking lot with just her cane and leaning on my shoulder because it had no close handicapped parking and no accommodating wheelchair access was available, as it usually was at the doctors’ offices my Mom frequented. Please also note that I am slowly recovering from Hip Replacement Surgery so my Mom’s reliance on me to traverse this “hill” was almost too much for ME to bear. I thought this steep uphill patient parking lot was odd especially since as a highly touted neurologist, much of his patient population had to be older people or disabled patients who desperately needed these physical accommodations. However, not wanting to “judge a book by its cover,” we proceeded into his “office” which was a cheaply converted house with MINIMAL patient amenities. The walls were old, the floors seemed ignored for years and the doctor’s office was more appropriate for a civil employee at a local, quiet municipality. But, the man was highly praised on-line as a neurologist so I kept encouraging my Mom to be positive.
Neurologist #1 – “So why are you here?”
After exchanging pleasantries sitting across from the doctor in his medical office/exam room yet devoid of any medical equipment such as an x-ray illuminator, impressive medical textbooks or even a patient exam table, I politely explained my Mom’s diagnosis of LHH and simultaneously handed the doctor the CD results of the two (2) aforementioned MRIs as well as their respective written ONE (1) PAGE diagnosis reports along with the detailed written analysis and diagnosis from the Neuro-Optometrist. After giving this CRUCIAL information no more than a cursory “acceptance” acknowledgement, the doctor placed the information “package” on his desk as if I had given him yesterday’s newspaper and looked at my Mom and I and said something substantially to the effect of: “So why are you here?”
I was surprised by his question given that we were explicitly told to see a neurologist and I was also annoyed at his dismissive attitude which indicated we were somehow bothering him by our mere presence in his office/exam room. After all, I thought, he accepted the appointment knowing my Mom’s diagnosis and I assume he was going to accept payment from Medicare for the services rendered during the appointment so you’d think he’d at least exert some effort to earn his money? My skepticism aside, I could also feel the “hope” slowly leak from my Mom’s face as if this extremely cold interaction was indicative of the beginning of the end of her active life and charming personality as she knew it to be but I ignored my instinct to physically “school” this doctor on the proper way to treat patients and I quickly and succinctly explained the essence of the information I had given him. He listened but each time my Mom interrupted me to elaborate on her own story to better demonstrate her symptoms, he literally gave her “the look” as if to say, “It’s bad enough I have to deal with your son talking at me, lady [a/k/a “his PATIENT”], so why don’t you keep your mouth shut so we all can get out of here sooner?”
Neurologist #1 – Treatment Plan: “Same Time, Next Year”
When I was done speaking, he told us that all we could do was schedule an MRI in a YEAR and then come back to see him so he can ascertain whether or not the LHH had gotten worse. He did not say what he would do if that happened; he just flippantly suggested we do this despite my Mom and I telling him about her day-to-day challenges with this condition and how a doctor specializing in diagnosing this condition had been adamant that we see a neurologist to understand why the condition occurred and how it could best be treated to at least improve my Mom’s quality of life. That’s when I started feeling more than a little patronized by this doctor who should have retired to play golf if he had no interest in HELPING or LISTENING TO HIS PATIENTS. I remarked that I found it strange he took our appointment knowing my Mom had LHH but asked us why we were there and also told us the ONLY TREATMENT was to have annual Brain MRIs and then pay to see him again for what amounted to, no medical advice. I was thinking I could have had the same experience visiting my friend Eric, and he’s an attorney, or my friend Rich, who runs an Office Painting business. Call me crazy, but such a qualified referral from a Neuro-Optometrist who had been DEAD-ON in diagnosing my Mom with a very complicated condition warranted a more substantial Treatment Plan from a neurologist than the mere scheduling of an annual encore performance of NOTHING.
Sensing my FURY with his complete CONDESCENDING BULLSHIT, Neurologist #1 reluctantly started explaining the science behind LHH and that my Mom must have had a Stroke in order to be in this condition. We explained that we witnessed no such event nor did she fall so severely so as to cause such a traumatic brain injury. Without inquiring into my Mom’s lifestyle or history of falls, and thus based on nothing but a coin flip in his mind, he maintained she “had a stroke.” I asked if there were any additional diagnostic tests to prove that, and more importantly, I respectfully inquired if there were any tests or medications to help prevent her from having another stroke, if she had one in the first place? With not one muscle changing in his face, he just said, “No.” I responded, “Is there ANYTHING to be done to determine her present state of mind?” He looked at me as if I had just ruined his tee time and went on to administer the most unscientific spur-of-the-moment Dementia Test I had ever heard of or witnessed and I was somewhat familiar with them from my days of practicing law and representing “alleged mentally incompetents.”
Neurologist #1 – Dementia or “Left Homonymous Hermianopsia?” – Flip a F’n Coin
Again, the doctor did not move from behind his desk nor did he refer to any paperwork when he started asking my Mom fairly simply questions to test her memory retention skills. He asked her to remember 3 simple words in a specific order and continued asking her “time and place” questions. She did well with her answers and she also was able to recall the three (3) words without any problems but then he drew a simple rectangle on a piece of paper and placed it in front of her and asked her to replicate it. Since my Mom was an artist at one point in her life and could paint beautiful landscapes and portraits from scratch, in my mind, this was a significant test. She drew a 1-2 inch straight line and kept going over it with the pen thinking she was creating a rectangle when all she was doing was drawing a very BOLD 1-2 inch line. Based on our detailed conversations with the Neuro-Optometrist who diagnosed her with LHH, this was evidence of how severe her LHH problem was with respect to spatial issues such as drawing a rectangle and making sure the overall shape was correct and the opposing lines were generally parallel with one another. Despite my Mom’s obvious poor performance on this spatial part of the spontaneous test, the doctor was un-phased and then said something to the effect of, “Okay, so we are done here, right? You’ll contact my office in a year or so and we’ll do another MRI of your Brain.” He then began to get up from his chair.
THE WORST DOCTOR CONSULTATION I HAD SEEN IN 30 YEARS
My Mom thought she had just witnessed the movie trailers with a film feature sure to follow but the doctor got up to leave giving off the impression of finality similar to end credits as they begin to roll down the screen. She started to verbalize more specific examples of her experiences with LHH and he turned around and looked at her like he had heard enough as if she had been a loser on a TV Game Show who wouldn’t leave the contestant’s chair when asked to do so. For a few seconds, I felt very sad as I could feel my Mom’s world coming apart at the seams but my outrage took over at this doctor’s disgusting behavior toward his patient, my Mom, and how that repulsive behavior could unfairly affect my Mom even though all she had really witnessed and experienced was THE WORST DOCTOR CONSULTATION I HAD SEEN IN 30 YEARS with my chronic, incurable and severe disease which has caused me twenty-plus (20+) surgeries and two hundred (200) or so hospitalizations.
As the doctor left the room and my Mom and I were left to pick up the medical information we had brought to help facilitate the doctor’s understanding of my Mom’s situation, I quickly changed my focus to my Mom and concentrated on making sure she forgot about this douchebag as soon as possible knowing there was nothing I could do to make this doctor act like a professional physician. I apologize for my choice of spicy language but there are no other words to accurately convey what occurred with Neurologist #1 or to describe him in his professional capacity. We left the office but as I carefully traversed down the parking lot hill with my recently replaced left hip to pick my Mom up at the top, near the entrance to the office, I was getting angry that this doctor was going to be paid by Medicare for what had just taken place when he should have been reported to the New Jersey State Board of Medical Examiners for both his inept Treatment Plan and the condescending manner in which he had treated his patient.
After helping my Mom get back safely into our car, I went back into the converted home office and saw Neurologist #1, already dressed to leave, joking around behind the counter with his Office Manager. They looked at me as if I had come back to find lost eyeglasses and I said firmly, “My Mom’s diagnosis is, what it is, but all you did in that excuse for a Consultation was remove all Hope my Mom and I had built up in anticipation of this meeting with you. Your Treatment Plan makes no sense and if someone treated your mother in the same patronizing manner as you treated mine, you’d be incensed. How you received positive reviews on Physician Rating websites is beyond me.” I then turned around and returned to the car and comforted my Mom. Thankfully my Mom is perceptive enough to realize what she had just experienced so we proceeded to “turn the page” and waited for her appointment with Neurologist #2.
Neurologist #2 – Finally, a THOROUGH and Compassionate Professional
While we were not set to meet with Neurologist #2 for 2-3 weeks, when I made the appointment I had asked the Office Manager to call us for an earlier appointment if another patient cancelled. Almost like a sign from above, we received that phone call 3 days after the above “Consultation” with Neurologist #1 and were scheduled to meet with Neurologist #2 the next day, Saturday. Wait, a doctor who works on Saturdays? As I said above, you don’t get a second chance at making a first impression but this time that first impression was of a dedicated and compassionate doctor who tried to be available when she was most needed by her patients. I again gathered together all of the diagnostic information referred to above and brought it to the Consultation. We parked in a handicapped parking spot (my Mom has a Handicapped Placard) and since the entrance to the doctor’s office was a bit of a walk, we easily got a wheelchair for my Mom and wheeled her to the office via the wheelchair ramp. For this Consultation, I did not need a Walking Stick just to get out of the parking lot.
Neurologist #2 to Neurologist #1 – “From the Sublime to the Ridiculous.”
After filling out various medical and insurance forms while this doctor reviewed the same exact diagnostic information I had given to Neurologist #1 only to watch him cast it aside to ask us what we were doing at his office, Neurologist #2 gently came into the Exam Room and introduced herself to my Mom. She immediately demonstrated her specific knowledge of my Mom’s condition and then sat down and listened to me, my sister and my Mom succinctly describe her LHH condition. She asked questions to verify different facts and then she proceeded to conduct a thorough “sensory” exam of my Mom by literally evaluating her nerves’ reactions from head to toe. Whenever she came across what appeared to be an abnormal reaction, she noted it in my Mom’s chart but then a few minutes later retested that part of her body to make sure of any abnormalities. Neurologist #2 was gentle with my Mom in both the way she touched and listened to her. Compared to my Mom’s experience with Neurologist #1, this experience was sublime and the other ridiculous. Now I know the true meaning of the phrase: “From the sublime to the ridiculous.”
Neurologist #2 – The Exam AND Consultation
At the appropriate time, the doctor was kind enough to entertain questions from each of us and her answers revealed her intentions to perform a COMPLETE WORKUP of my Mom to determine the cause of the LHH and simultaneously start Occupational Therapy to help my Mom combat the day-to-day challenges caused by the condition just in case that is her only recourse or a part of the ultimate Treatment Plan. In response to our concerns about the culprit being a Stroke and us wanting to prevent future such occurrences since we never witnessed it, the doctor immediately, politely and compassionately “ordered” my Mom to take a Baby Aspirin every day. She then explained the various diagnostic tests she wanted my Mom to have and asked me to make sure she hadn’t already gone for these tests within the past year since Medicare would not pay for the test under those circumstances. Those tests are an Echocardiogram and a “Vasc Carotid Duplex, Full.” The doctor also tested my Mom’s blood for various minerals, B12 and B6 and made sure we were going for a more comprehensive blood test regarding her cholesterol and sugars for which she would have to fast. My Mom’s Internist had prescribed such a blood test and I had indicated we intended to go for it on Monday.
Immediate Post-Exam Follow-Up with Neurologist #2 / #1 – Nothing
We must have spent more than 30 minutes conferring with Neurologist #2 then left with a laundry list of tests, procedures and occupational therapy prescriptions to follow-up on whereas the Consultation with Neurologist #1 consisted of a 15-minute conversation and the only follow-up required was calling back in a year to schedule another Brain MRI. I almost forgot, we also left the office of Neurologist #2 with HOPE and SMILES. More specifically, as we checked out of the office of Neurologist #2, I stopped by the Office Manager’s desk and she handed me several documents. One was the prescription for Occupational Therapy and another was a 4-page “Clinical Summary” of my Mom’s exam which specifically enumerated both the “Health Issues Reviewed” during the Exam and the currently proposed “Treatment Plan” which included the list of the aforementioned prescribed tests and activities. When we left the office of Neurologist #1, all we had to do was remember to contact him IN A YEAR TO SCHEDULE ANOTHER BRAIN MRI. He did not prescribe Baby Aspirin to help prevent another Stroke, if, in fact, one had occurred; nor did he express any interest in examining my Mom’s nerves, heart or Carotid Artery. Neurologist #2 also scheduled a follow-up exam for approximately one (1) month later at which time she planned to conduct the Cognitive Test which, according to the Office Manager, is standardized and based on written questions and observations used by the doctor each time she conducts such an evaluation. Neurologist #1 “made up” his Cognitive Test of my Mom on the spot.
Some Doctors Suck & Some Doctors Don’t Care – just like in other Professions
Just like in ANY profession, some doctors are bad at their job and some simply don’t care. For traditional reasons and because of rote human nature, we don’t expect this in the practice of medicine but as the above proves, it does happen. Healthy people having to suddenly address a medical problem after many years having never gone to a doctor, or having never been hospitalized, typically don’t ever expect doctors to be lacking in humanity or humility, so for THEM, Physician Rating website grades provide valuable information from which to make choices of physicians. I pity them because as the above proves, GREAT physician website grades do not make an even good physician.
Word-of-Mouth Physician Referrals are more Reliable that Website Ratings
The fact that Neurologist #1 received GREAT reviews on several Physician Rating websites is exactly why I think such Doctor Rating websites are unreliable. There are too many unknown variables to render such Doctor Ratings accurate. Who knows, Neurologist #1 may have received terrible personal news immediately prior to my Mom and I walking into his office and/or he simply didn’t like me? Maybe Neurologist #1 had phony patients provide the aforementioned Ratings? I don’t know the answer to those questions but I do know that in my experience as somewhat of a “professional patient,” rating doctors on an objective scale is like devising a rating scale for male or female “attractiveness” or “good-looking-ness.” Different characteristics carry different weight to different patients just like a woman who is a “9” to me might be a “4” to someone else, and vice versa. Accordingly, please be wary of Physician Rating websites and try to use social media to network for “Word-of-Mouth” physician referrals because the elaboration of subjective discourse regarding a physician-patient “transaction” will enable you to determine whether or not that physician is appropriate for what you seek and/or need.
Be mindful of the Psychological effects of exposing Patients to Apathetic Doctors
As for the “extraordinary” work performed by Neurologist #2, it is actually commonplace amongst the many WONDERFUL Physicians who listen to their patients and actually care about them. It only seems “extraordinary” when compared to the listless, arrogant, patronizing and condescending work ethic of Neurologist #1. In that regard, please always keep in mind the psychological effects of exposure to apathetic professionals like Neurologist #1. It’s one thing to remain unemotional to ensure that a patient receives the best possible care but it is an entirely different matter when a neurologist is so indifferent he forgets to “prescribe” something as simple as Baby Aspirins when a patient with LHH presents with the propensity to have Strokes.
Pay attention to the “Little Things”
Please also pay attention to the little things like Neurologist #2 seeing patients on Saturdays or Neurologist #1 not caring about his patients’ safety by building a parking lot more suitable to mountain climbers than to patients with Double Knee or Left Hip Replacements. (By the way, it is my understanding Neurologist #2 routinely sees patients two (2) Saturdays every month and has been doing that for some time.)
The “right” Physician for a Patient isn’t necessarily the “best” Physician
Finally, the “right” physician for a patient is not always the “best” because in my Mom’s case, for example, I know she wants a doctor who will listen to her and who will be compassionate with her. For whatever reason, she also prefers a female because at her stage in life she thinks it is more probable she will obtain such care from a female physician. I know my Mom’s hypothesis is WRONG and that she can receive gentle, compassionate care from a male physician but this is what makes her comfortable and provides her with the “hope” she now needs to battle a very complicated medical condition.
I trust Names are not necessary in this Blog Post to appreciate the learning points of my recent experience with these Neurologists
This was an emotional Blog Post for me to write and I did not feel well while writing it but I think it is important to share what can be learned by comparing and contrasting my REAL experiences with these two (2) VERY DIFFERENT Neurologists. While I have not named Neurologist #1 in this Blog Post, I usually believe in comic Jay Mohr’s edict to “put your name on it” whenever making complaints but I don’t want to compromise my Mom’s care with Neurologist #2 by purposely “outing” Neurologist #1 when I could just as easily communicate the learning points from these experiences without divulging names. I hope readers can understand that.