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LikeMinded

Letters of remonstration...

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Let's face it. Almost everybody here on CB knows about the clueless, and sometimes outright negligent, physicians who treated me back when I was living in Georgia (and at least one here in Indiana, where I live now).

Suing multiple doctors is difficult (esp. for negligence), and all three doctors whom I bear a grudge against are just a few years out of residency and I feel that although they need to feel for my plight, that getting sued would destroy their careers. There is one doctor in particular whose career I do not want to see destroyed (my late-20s aged internal med doc in Georgia, who was the most wonderful person ever - also a second-generation Indian-American - but was very scatterbrained, clueless, and never tried any medicinal therapy on me, I feel I don't want to put her through the paces of a lawsuit).

Plus the lawyer's fees, of course, ugh.

However, I do think they do need to be written to, to both inform them of my current standing in life (no longer anywhere near as sick, applying for jobs and getting confirmations from two companies that my resume passed initial screening/experience check and that I could be a candidate for interview)... and to tell them exactly where they screwed up.

My first "beef" is with a neurologist in Georgia. I had an unexpected attack of vertical double vision (very few diseases can cause this!), and was just a block from work at the time, so I closed one eye and parked my car, and then walked (still with just one eye open) the 1000 feet to the hospital ER. I stepped into the ER and the nurse confirmed that my two eyes were vertically out of alignment (this is psychologically impossible to fake or somatosize). They admitted me to the ER floor ward, where the head physician took one look at me and said I was having an attack on a cranial nerve. He went to get a neurologist to see my case.

Problem? This Ndoc, only in her 30s, is already a nationally-known specialist in clinically researching hemorrhagic and occlusive stroke diseases in the brain. Because she knew I had Marfan's syndrome and issues with blood clotting, she walked in (requisite fourth year medical student in tow!), I assume, thinking I was suffering a hemorrhagic stroke. Also, by the time she walked in, my eyes were coming back to normal alignment and were just a little shaky, vibrating up and down. She and the student did a neurological evaluation (and, I assume, felt I wasn't following the symptoms hemorrhagic stroke), and the woman that was her fourth-year student kept asking questioning her on whether I had something like MS or chronic infectious encephalitis.

The Ndoc visibly brushed her off at any suggestion of me being really sick. My fevers were just starting to pattern into full daytime fevers, and the hospital checked me in as having a temp of 99.2F, well within the normal range (though kind of high for late morning!). Turns out that this Ndoc, as per her own confession to me right then and there in the ER, was a total hypochondriac in med school and a few times thought she had the same symptoms I was having, and that her CTs and MRIs universally came out negative (I assume the films never found her brain to begin with; they should have done scans of the abdomen and upper legs to show that her mind was up her ass). She then continued to patronize me as being "smart" (fortunately, I suppose, that condition resolved soon after and didn't rear its ugly head until recently), and told me to "come back in" if it (it being the double vision) ever happened again. She also got me an "emergency" appointment with my regular pdoc so that I could see him the following Monday.

The Pdoc, the following Monday, did something that was probably unwise and printed out that ER record so that I could have a copy of it. On the record, he pointed out that the Ndoc felt all my symptoms, including the shaky eyes (nystagmus) were "effortful" and that I was trying to get attention to a physical disease I didn't have. The Greek letter "psi" is the symbol for psychology/psychiatry, and that woman had the symbol written so many times on my record that you would think she was trying to write up fliers for a sorority rush event. If I were to pick a single doc to put a lawsuit on, it'd be her, despite her young age.

The last story is a bit more recent, as in it happened less than a year ago, and that it happened where I live right now, near a city known for good medical care. This particular doctor (an infectious disease doctor), like my IMdoc, was about 30 and also to boot, yet another second-generation Indian-American. We even developed quite a bit of rapport and he ran all the tests he could think of on me. When they all came out negative (note that he did not order a few other bacterial screens and ignored the fact that in chronic infectious illness, the immune system can be lowered to the point that few anti-bacteria directed antibodies can be found), he pretty much was giving up. My parents, meanwhile, were getting a little tired of this beating around the bush, and somewhat unexpectedly came with me to an appointment with the IDdoc. Big Mistake. Two weeks later, I learned he dropped my case, much to the chagrin of his nurse, who had taken a professional liking to me when I was being investigated by the IDdoc.

The other aggravating factor with the IDdoc included the fact that he hailed not far from where my college alma mater is, and many of his schoolmates ended up going to my alma mater and then its med school - which note, has a severe superiority complex over the 6-year BA/MD school where my own IDdoc went. Turns out, after over a year of sickness, that the infection was unexpectedly put into remission by "accident" when my GP was (and is) treating me for sinus problems late last year.

In conclusion, I want to hear some opinions over suing doctors. However, mark my words, suing or not, these doctors are going to get letters of remonstration (if not outright criticism, constructive and otherwise).

Monetarily, my family and I wasted at least $30k in healthcare expenses directly due to the improper "treatment" of my illness. (At one point, my mother loved reminding me of this, but I think that phase has gone away). I won't bring up the idea of "lost wages", as those wouldn't do much more than double the aforementioned figure. Nor will I bring up "pain and suffering", as I don't think that losing 2-3 years of the prime of your life has any pricetag on it. (My parents, OTOH, did undergo pain and suffering-NOS due to my illness, and I am telling them to not even attempt suing).

So yeah..

--Sick and twisted LikeMinded, formerly the FOUS.

Edited by LikeMinded

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Ok, I've been with you all the way thru this guy....and sorry I'm not reading the second half; too long.

What is to be gained by suing doctors?

Short of willful misconduct or gross imcompetence I think that doctors honestly try to provide the care and skilled knowlege needed.

Unfortunately, medicine is both a science AND and art. In almost no other field is the responsibility so vast, the ability to control the subject so little, and the expectation often so unreasonably high.

You MUST admit that yours has been one of the most complex of cases given your extensive medical history. You experience the near simultaneous onset of several difficult problems exacerbated by family issues and the onset of your MI. Surely this would have been challenging enough for Dr. House. Unfortunately among the dozens of doctors you have seen, there was not a single coordinated care committee. Not to mention the spacious glass walled private rooms. ;)

As the neuropsychologist told me after my brain injury, "Don't focus on what has happened and your limitations. Look forward, find coping methods and enjoy doing the things you are able". Good advice for many situations. I have to remind myself from time to time.

If you want to contribute to bettering mankind, than write a brief letter to your previous doctors outlining your present diagnosis, treatment and prognosis. And.....a thank you for their effort is always appreciated. Truly.

Best Regards, a.m.

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AirMarshall, I do think you are largely correct. The lack of a coordinated care committee, especially when I was in care of a single hospital back down in Georgia, seriously was detrimental to my "care" and that my trying to take out anything on an individual and slightly clueless overspecialized Ndoc that saw me during a single ER visit is futile.

The second part that you didn't get to reading... yeah... it involved an infectious disease doctor... he'd asked me if I'd been on antibiotics before (this was in May 2007), and when I said "no", took that as logic that the condition must not have been amenable to antibiotics. Please don't ask me where this logic came from. No gross negligence on his part, just gross, unencumbered stupidity that cost me and my family tens of thousands of dollars (and that's the direct figure, lost wages and "pain and suffering" be sodded!).

Also, I spent 2-3 years of life as a walking ghost. When you're in your twenties, this is not a fun thing.

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i personally think they should be sent letters outlining the mistakes they made, if for no other reason than providing a learning experience. perhaps pointing out how their treatment cost you several years of your life will shake their complacency a bit. any health care provider who isn't interested in learning from their mistakes, no matter how honestly or innocently made, should not be practicing. there's a reason it's called the practice of medicine: it involves lifelong learning.

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With all due respect to the helpful hints presented here by reddog and AM, I think I will be taking the middle road.

These doctors did commit minor mistakes (in the big scope of their own careers, that is), but I think they need to learn from them, since I don't want to see such mistakes happen often.

And of course, on my side of things, I am realizing I wasn't as pushy a patient as I should have been. I'm as pushy as it gets as it is, and I didn't want to totally ruin professional relationships with all of my doctors. Although it seems intuitive for am IM or IDdoc to give empirical (trial/error) antibiotics in response to a fever, neither of mine did. Those were egregious mistakes on their part (well, this is as per my oncologist and GP up here), and I wouldn't have been fixed had I not gotten a sinus infection and went to the GP.

(Of course, the GP is in no position to really criticize any of my doctors, it was by pure accident that the antibiotic fixed me -- at the time I started taking it, I was convinced that my mystery illness was a virus and the sinus infection was bacterial. Seems the other way around - sinus infection still here, much of other illness gone.)

Edited by LikeMinded

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I think I sort of have to update ourselves here, since going through the facts and history, my opinions have changed some, and unfortunately for AM, my opinions are now somewhat more hostile to the doctors. Writing lovey-dovey letters thanking them for caring for me would be largely inappropriate if they did not include some bits of constructive criticism. Most of my docs deserve it, and I want them to know what went wrong so they don't do it in the future.

To get to the root of it, I think my anger stems from the heavy financial losses sustained by my family and the fact that they (even if by accident) take their anger out on me. That's in the realm of our family tdoc and is being taken care of.

Let me summarize, in a more brief and comprehensible manner, the doctors I saw and their "little mistakes":

1) Internal medicine physician (Georgia, 2006-2007): Did not attempt empirical antibiotic treatment on fever of unknown origin despite recording and listing diagnosis as such. Did, however, ask me if I'd ever had antibiotics. Oops, minor logical failure. Ordered MRI, came out negative (I meant without lesions; there was a brain, just not much of a functioning one). I do want to write her to let her know how I'm doing, and now she's a GP practicing in another state, and I do want her to know how patients like me should be treated.

2) Neurologist (Georgia, 2006): Read that MRI, informed me nothing was wrong, and refused to see or even communicate with me after that. I will not be writing her; that'd be useless.

3) ENT (Georgia, 2006): Correctly diagnosed and removed benign tumor for throat and attributed heavy acid reflux to stomach paralysis. Gave me a course of corticosteroids for an ear issue (and we were secretly hoping it'd calm the nerves), but instead it gave me an attack of double vision. Should probably write him to let him know how things are going.

4) ER Neurologist (Georgia, 2006): Had noted that I was on the corticosteroid just 2 days prior when I (stumblingly) walked into the ER with double vision. It says so on the record. She actually wrote down that I was on methylprednisolone, and subsequently wrote up that sorority rush poster of a record. One would think that neurological symptoms exacerbated by an immunosuppressant could warrant a trial of antimicrobial drugs. "Think" is the key word here. Strangely, this doctor went AWOL about 3 days ago (!) and I need to track her down if I wish to write her.

5) Psychiatrist and neuropsychologist (Georgia, 06-07): Psychiatrist was puzzled; neuropsychologist quipped "well, I can't think of anything besides somatoform disorder...". By this time, my fevers were constant all afternoon. I am unsure as to how somatoform disorder is a diagnosis of exclusion and can include constant mid-grade fever.

6) Infectious disease doctor (Indiana, 2007) who now refuses to see my case: Performed a bunch of tests and concluded I wasn't worth treating, as they came out negative. Never mind the logic of culture-negative infections and immunosuppression of chronic disease hiding antibody test reactions. Or a panel of bacterial DNA PCRs that should have been done. Or perhaps just a course of 10 days' antibiotics, just for shits and giggles to see, oh, that I might get better (God forbid!!). This guy borders on civil suit territory in my mind sometimes.

7) Two neurologists (Midwest, 2007-2008): Told me disease was systemic and outside of their primary realm. I would assume they were right. I'm writing them just to let them know what we found out.

8) Cognitive neuropsychiatrist (Indiana, 2008): Was of the unwavering opinion that my disease was due entirely to my meds. Especially how my Ditropan (for excessive sweating) could magically create a prescient fever one full year before I even started taking it. I almost walked out on him at the appointment. The man is very well-respected in Alzheimer's disease research but I have a feeling that he doesn't know much about other dementias or neuropsychiatric issues. Some patronization might be appropriate here.

...or maybe I'll just follow the advice Abraham Lincoln gave to, I believe, the Union General Ulysses S. Grant during the US Civil War when Grant got very upset at one of the sergeants he was leading. President Lincoln told the general to write an angry and hostile letter addressed to the sergeant, and then instructed him to throw it in the fire of his home's coal stove heater.

Flame on.

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I've spent the last 2 years in and out of hospitals, doctors, home health aids, etc. with my mother and grandmother. 3+ times a week. It can be incredibly frustrating when you can't get answers. What's really frustrating is when the doctors don't talk to each other enough so no one really knows what's going on. I've dealt with some very good caregivers and some very bad ones. Most have been somewhere in the middle. It's been very difficult on everyone involved.

I really do agree with that. The doctors in Georgia (except for the ENT) all practiced within 1000 feet of each other, and one would think a "care team" was warranted in order to get my case over quickly and expediently in order to avoid burdening me, my family, or the medical system in general. I do feel a degree of guilt (not just for my family), but for wasting the medical system's time going through unnecessary tests after what seemed the obvious had been ignored.

But honestly, it sounds like your doctors were competent. I don't think they deserve your derision (which is very obvious) or your letters of castigation. From your descriptions, they don't sound negligent. They sound like people trying to do their jobs conscientiously. Playing Monday morning quaterback isn't fair to anyone.

I am not entirely sure "my doctors" were competent, although that would be a mistake of doing a blanket opinion (on both our behalves). There definitely were bright spots, and even heroic actions, taken in my medical care, and a lot of my physicians did try their best (even though as per AM, they sometimes treated my case as a piece of art in progress and not a scientific case).

Sometimes medicine isn't straightforward.

Although I am still extremely livid at the medical system, I think you just won this thread with that quip right there. One of my friends termed my disease "clusterfuckitis" and I added in a dx of neurological Rube Goldberg syndrome into it to boot. Where it begins and where it ends, nobody knows. Nonetheless, I think letters of some sort are warranted... if only to prevent this from happening again (to somebody else).

I think you should be glad that you're getting better and that you have an entire life ahead of you to live and be healthy.

I don't like to mention this (I used to have a history of dire hypochondriasis when I was much younger), but I have been informed recently by my lung doctor that I have at most 25 years of productive lifespan left ahead of me due to a long-ago operation that (due to lack of medical technology in 1984) was performed too late. I'm just going to leave it at the fact that my heart is actively enlarging, my EKG is starting to go haywire, my toes and toenails are turning various shades of deep blue, cherry red, and deep purple, it's getting harder and harder to breathe, and the wires that they used to suture my ribcage back together 24 years ago are apparently starting to fracture from the heavy lung effort. I was actually bluntly told I'd be lucky to make it to 50 in any productive fashion. There is the chance that both of my parents could potentially outlive me. By this logic, Mom (only 19 years my senior), probably will outlive me.

I guess just as my parents take their anger of my illness(es) out on me, I'm taking out my anger on my illness(es) and life in general on the medical system and how it seems to have failed me.

As they told me at a well-known clinic in Ohio, "looks like this is a multi-factorial case".

Unfortunately, one that unluckily ended up wasting tens of thousands of dollars.

Good thing I have a solid resume with various job experiences that seem to actually be attracting employers to me (as in, I've had a couple phone/e-mail interviews about serious career-track positions and am having my resume being "considered seriously" for a few extremely competitive positions).

Maybe I need to shut up and accept (blindly or otherwise) the idea that Things happen for a reason.

In any event, thank you Susan for the advice, it really was uplifting and educating to me.

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The thing about suing for malpractice is that:

1) There must be measurable, tangible and provable damages to sue for (loss of work etc, medical costs)

2) The doctor(s) not only have to be grossly negligent but also imprudent. It sounds as though these doctors missed some signs and maybe screwed up some judgment calls but you have to prove that they knowingly put your life/health in danger or that their actions were so below standard that they should have known they were risking your health.

The above criteria is almost impossible to prove unless you get infallible experts in each specialty to testify that the standards of care were grossly disregarded. There's other criteria but when I have consulted counsel in regards to malpractice issues, these were always the strongest points to consider. You could always consult a lawyer if you are serious about suing.

Letters...I think, if anything, expressing yourself in a letter to these doctors would be therapeutic as long as you make an effort to move on after writing these letters. If you have a tdoc, consult with him/her about the best way to go about it.

I agree with susanb...I hope you can find lasting peace and health, LikeMinded.

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Hi LM:

I have always admired your writing style - you are able to communicate very clearly.

IMO it seems like the infectious disease dr was the one who made the most or biggest mistakes. this is purely based on what you wrote.

Im glad that this part of your life is past and you are moving forward.

I am very sorry that whatever surgery you had back in 1984 cannot some how be "re-done" with 2009 technology.

db

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The latest replies in this thread have (100% honestly!) been enlightening to me. (And, Susan, I wasn't being sarcastic about that, just so you know -- I know how it is, my sarcasm detector malfunctions on a regular basis as well!).

N&P, thank you for the legal advice... it is indeed best heard from someone who's actually in the medical field (as opposed to say, my mother amidst one of her mixed state type fits screaming that the entire medical community needs to get sued). I assume there aren't any malpractice litigation lawyers here on CB, so your advice is truly useful. I do think that even attempting to sue (legal or civil) would be difficult.

DB -- Compliments on writing style accepted, if with a bit of a blush. I think I write well as I have had severe verbal difficulties (HFA+encephalitis+AD/HD+batshit-NOS), which drives me to compulsively read and re-read my own posts before and after posting them. My father pointed this out to me, as well, and complained about how his underlings at work didn't write too well since they never bothered to proofread their own writing.

I think that you are also right in that my IDdoc here in Indiana was "the one" who really did miss out on some clues. I will be writing him to inform him that this is a suspected infectious disease, and if he'd like to see me again now that the cause has been semi-found. I will try not to be too harsh on him (after all, he did sense some sort of danger in me and dropped my case last year!).

But in the end, the issue (on my part) was nothing but greed for money, a financial catharsis to the end of the family bank account... that is the only reason I ever thought of looking into civil suits or any other sort of reimbursement. My GIdoc had actually waived the fee for a procedure*** that I considered unnecessary (but consented to anyways), and the health system that most of my midwestern docs (sans IDdoc and GP) participates in has been fairly gentle with me in terms of financial assistance (although I do have to get on my knees begging them at times; this is similar to these letters I have been wishing to write). I suppose that the doctors did do what they could do.

Nonetheless, I will be (probably not on my knees, though) writing many of my current and former doctors to let them know exactly what happened. How they take the news is up to them.

*** <TMI>

The "procedure" was a full colonoscopy, the scope going clear up into my small intestine. Also, they were unable to anesthetize me since I'm so drug-resistant -- They'd given the maximum manufacturer suggested dosages of I believe, Versed and fentanyl and my blood oxygen was dropping from respiratory depression, even though I was conscious enough to have novice-level discussions about the small intestine with the physician performing the procedure.

</TMI>

Edited by LikeMinded

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