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Dire Painful Condition, Doctors Unwilling

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OK, I'm in TN if that matters. I'm getting "treatment" in Vanderbilt for an as of yet unknown CNS chronic pain condition along with Constant Painful migraines, along with other irregularities. This has been a near 10 year process with little to no help and my condition continues to worsen. The past 2 years the pain is so bad I have close to 15-20 non epileptic seizures per month caused by pain.

Now, I am very displeased with my neurologist, any help received from her came from me reading studies, pointing them out to her and her saying ok. Mind you she's one of the "best" in her field, and very high up at vanderbilt. I am seeing her tomorrow and am very anxious as I don't want her to just drop me as a patient because I insult her. I want to ask to see someone who actually specializes in migraines and a different neuro thats in the same sub specialty as her and she's said no before. Also, for some reason it's like she doesn't even try to look into my case. ALL the tests that came back helpful were MY IDEAS, all the drugs that provided any relief were MY IDEAS. I haven't heard an original idea from her other than eat better and get out more when I am a shower is a very painful experience. I also fit the diagnosis for Chronic Pain Syndrome, but she refuses to even give me preliminary diagnoses and because of this I have great difficulty on my disability claim. And worst of all I can get no pain medicine anywhere including Emergency Rooms with a BP of like 260/190 and HR over 200 because she wrote on my chart no pain meds. Apparently it's not en vougue to treat neurological pain with narcotics because of addiction risk or whatever, but I've been prescribed 3 medications that made me suicidal 3 seperate times and other drugs with lesser side effects, still with no help.

The thing is she is a musculoskelatel neurologist, she doesn't specialize in migraines, but when I ask to see a migraine specialist she says no. And because of how vanderbilt works it's not like I can just get a referral, it has to be her referral. I'm afraid that she'll just say ok bye and stop prescribing the meds that I need and I'll have to wait another year to even have a chance to get back into vanderbilt. And also due to the lack of a DX she won't provide I can't get into mayo or hopkins. Hell, the lack of a DX prevents me from getting into pain management...

One time when I was at vanderbilt, in the ER there were some labs that had to be drawn, which isn't an easy thing for me because I've been to the ER so many times and been IV dosed so many steroids that I have no veins suitable for IV access save for my jugular. So we ask her to order the labs. At this time she's in the building, knows when we will be discharged etc, We hear her on the phone with the nurse. and she just doesn't order the labs that we need. Than when we ask why she didn't order the labs she said she was buy. Her and I were in that hospital for over 6 hours together... Also, she didn't even call the nurse to check up on me or come see me or anything.


It's very taxing on my body to drive 5 hours to see her to get this treatment. What are my legal options, or more importantly, what can she do to me? She's the head of her department and hasn't helped me with any of my problems for over 2 years now. It's like she's possessive over me like a trophy so when they figure out what I have she can say I have one of those. We asked her to transfer to a different neurologist with her same specialties, she says no, we ask for a different referral, she says no, you don't need that. Just for a sense of scope, It's looking like I have at least two rare diseases, both of which occur in less than 1 in 120,000 people. I just want to find a better doctor, but I'm afraid she'll kick me out of vanderbilt, stop writing my scripts or just write mean things in my file if I disobey. Hell because of her I can't even get disability... I'm just afraid and could really use advice on what to do next.
 


Taxing Matters

Overtaxed Member
Your problem isn't really a legal one. You cannot successfully sue the doctor or the facility to get the referral you want or the pain meds you want. You don't have a right under the law to either a referral or to specific prescription drugs.

Doctors are today much less willing to prescribe narcotic pain medication than they were a decade ago because the opioid addiction "crisis" in this country. In the early 2000s doctors would hand out opioid pain meds like candy when there was a pain complaint, spurred on by drug manufacturers claiming they are wonder pain drugs with little chance of addiction when prescribed for pain. But as they flooded their patients with these drugs over time the extent of the potential addiction became known and we found out that, big surprise, the big drug manufacturers selling these drugs over hyped the benefits and downplayed the risks to boost sales. Now the pendulum has swung very much in the other direction where doctors are, IMO, overly reluctant to prescribe them when there is significant pain. That's not surprising, its human nature that when one excess is found out that the response is over correction the other way. It's compounded by the fact that the DEA has made the rules for doctors in prescribing these drugs a lot stricter, and doctors fear loss of their DEA license if the DEA questions how they prescribe these drugs. So some doctors now won't even touch prescribing them. My own experience has been that, at least in my area, the prevailing practice today is that no narcotic pain medication will be prescribed for a complaint of pain when the cause of the pain cannot be identified. Your doctors have not yet discovered what is causing your pain, and that may be why they will not give you the narcotic pain medication.

You may contact the officials at the healthcare system you use that are above your doctor to ask for a change to a different doctor. No guarantee how that will come out or what effect that would have on your present doctor's treatment of you. You may seek out treatment at a doctor outside that healthcare system. Unless your insurance locks you into just the one system it may be worth looking at alternative options. Of course, no telling whether those doctors would be any more willing to give you what you want.
 
The problem isn’t the pain meds, it’s the secondary issue. My problem is that the blood tests aren’t being ordered in a timely matter, she doesn’t have a decent understanding of my case. Like I said I have only jugular access to my veins and I was in the er while she was in the same building and on the phone with my nurse who was ready to draw the blood, bud for dumb reasons didn’t order it til the next day when I was forced to check out due to lack of beds.

What I want to know is how much she can hurt me. I want a doctor who actually tries to figure out what I have, but in my case all helpful meds I found by reading studies. I discovered one of the illnesses I test positive for, the only new meds she prescribed that weren’t suggested by me made me suicidal or non functional or exacerbated my symptoms even though I warned that this would happen.

It’s lile she wants to keep my case like a trophy, she won’t let me see the other neurologist in her department, or a different migraine specialist (beck she’s high up and the other docs also work at Vanderbilt). I drive 500 miles to get care and what I get is a doc that’s supposed to be the best but hasn’t even thought to try something not on webmd.

I’m afraid to confront her as I need the scripts she writes to survive, if she drops me it’ll hurt me bad. I’m also afraid she’ll vindictively write something untrue in my chart.

TO BE CLEAR OPIATES ARENT WHAT MY NO1 GOAL IS, reductive care and testing is to try and arrive at a dx. I am unable to work the past five years and she won’t give me a preliminary dx like Chronic Pain Syndrome (which a previous doc gave me). Thus preventing me from getting disability.

What I want to know is how bad can she legally hurt me, dropping me as a patient this kicking me out of Vanderbilt making me go through the admission again, slander my file, etc. And what can I do about it. How should I behave on my appt, can I afford to confront her on my problems?
 

quincy

Senior Member
You mention "we" a lot in your first post. Who is "we?"

You have the right to seek medical care elsewhere. And, if you do not like your current neurologist and do not believe your neurologist is treating your pain adequately, that is probably the best option you have.

I do not see any clear malpractice in what you relate, however. I only see, based strictly on what you have said, a disagreement between you and your neurologist on how your pain should be treated.
 

commentator

Senior Member
The situation you describe is quite valid. As our wonderful brilliant super conservative anti-Obamacare legislators have refused the benefits of expanded Medicaid, all the smaller rural hospitals in Tennessee are closing. More and more people are being funneled into a system that is becoming more and more over-extended. The big 'un you mention is really cracking under the strain. It is extremely difficult to get in to see a doctor in their system. Once you get a doctor, that doctor is extremely unlikely to send you to another doctor within their system, even if you beg for such a referral.

I do not really understand it, but that's certainly been our experience in the last few years. We were told that it takes up to a year to obtain a referral for certain kinds of specialized care in the Vandy system. Your doctor does NOT want to have to hand you off. But, really, you know that "how bad can she hurt me?" is a stupid thing to ask anybody. Legally, you can't sue a doctor because you don't like the way they are treating you. You vote with your feet. As someone else has pointed out, you always have the right to seek medical care elsewhere. you can go to Saint Thomas. You can go to one of the stupid convenient care clinics that are everywhere and let them pay for their expensive equipment by doing the same tests over and over on you. You can go to your local hospital's emergency room. Unless you live in downtown Nashville, there are still a few of those out there other than Vanderbilt.

However, as you well know, going to an emergency room with extreme pain as your chief complaint is like a bright neon sign for the classic pain pill seeker. You do know that Tennessee is the number two state in the nation working hard to be number one for pain pill/opiod abuse, don't you? As someone pointed out above, once they've overdone it in one direction, the inevitable result is that the medical community will over compensate in the opposite direction.

My husband, who is a mature white guy, doesn't fit any of the classic druggie criteria was told to go "take a walk in the mall" to take his mind off bladder spasms that had him sweating and screaming on the floor. Unfortunately, that's the reality of our times. If this had been sixty years ago, he'd have been toughing it out the same way anyhow.

As for emergency pain relief, once you get the notoriety of being a "frequent flyer" with pain of any kind that needs heavy meds, like migraines or kidney stones, expect to have one heck of a lot of trouble being seen as a mature, reasonable individual who is just having seizures due to pain (not opoid withdrawal, which you do know is more likely to induce seizures than pain is, don't you?) And it doesn't have to be the doctor who tells them you're a junkie pain pill hunter. The staff in most emergency facilities remember people, don't doubt it. Back pain, migraines, kidney stones, they start rolling their eyes. You cannot expect otherwise and your doctor specifically did not cause this reaction.

Frankly, in the offices and in the emergency rooms, they hear all kinds of garbage from all kinds of people whose chief motivation is that they want pain pills. Migraines are specially interesting because unlike a lot of things, they can't easily do x-rays and see if there's a legitimate cause. From the sound of things, you might be one of those people who needs to be on regular daily meds for your Migraines, or have botox injections, etc. I suspect real strongly that you would be able to find another doctor somewhere in the area who would see you and treat you. Give up Vanderbilt. It is obvious they have got you stereotyped there, they are not doing you any good, and you are not happy with them. You're a free agent.
 
Thanks for all your responses, First, when I say "we" I mea my sister who takes care of me, sorry for the confusion.

I know that I can "vote with my feet" and seek care elsewhere, but the problem is that it takes 6++ months to get in to see a new neurologist. Not just that, I've seen lots of neurologists and they all do the same thing, they give me gabapentin or lyrica std high dose, valium for sleep/seizures, anti nausea meds, etc; than they tell me they've used their bag of tricks and should see one at vanderbilt. The big problem is that If I leave the care of the one I'm seeing, to get back into vanderbilt it will take 6-8 months and I don't get to chose which doctor I see and chances are it'll be the same one.

I do have appts at 2 different neurologists at UT and Emory, but they're 8 and 7 months out :(.

I very much doubt I'm marked as a "frequent flyer" in the ER since I bring my whole medical history with me, Also when I go the pain is usually so ,bad my BP is like 235/170 with HR of 200+ (remember the pain condition isn't just migraines, it's stabbing and crushing all throughout my body), But with no Dx all they can do is NSAIDs, anti-emetics, ketamine, and 2mg dilaudid ativan, and with no dx they can't admit me so I just end up back there in a few days since when I'm in a spell I can't hold down fluids even with zofran and phenergan.

I guess you're right to give up on Vanderbilt, but it's a hard choice because everyone says they're the best neuro in my area ( I've had 3 useless neuros in my area before) and I really want to know what's doing this to me. My big problem is that to get disability I need to have a dx and nobody will give me one. I'm running out of money with ER visits and such. Also pain clinics wont take me without a dx. And Mayo won't take me without a Dx. (even with a 47 and 38 degree bends in my spine and arthritis like an old man everywhere, (I'm 24) nobody will give me a dx.

@commentator I've already had botox and it made things worse for 4 months. I also have private insurance, not medicaid,
From what I hear I don't have many options I'm not already doing, I don't think I'm stereotyped because she definitely believes me, but is just either lazy or overloaded, it's hard enough to find someone who doesn't stereotype you. When I say how bad can she hurt me, what I mean is can she just drop me as a patient and stop prescribing my meds just because I bring up my issue. . and she doesn't like me for it? Also can she write things like "drug seeker" or something in my medical file just to spite me. I'm just very anxious to bring up my grievances if she will do any of the things listed above just out of spite. Is there some database that she could write things in? I'm just afraid that she'll do things out of spite because for whatever reason she really wants to keep mee as her patient, She's said that she doesn't want me to see other neurologists... I just want to know what all she could do in her power if she had malicious or spiteful intent. She has made threats against me if I see another neurologist... It just makes me very anxious, I'm just afraid of losing what little medication I do have.
 
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cbg

I'm a Northern Girl
The bottom line here though is, this is not a legal question. Medicine is not an exact science. It would be impossible to pass a law requiring that a diagnosis be found within x amount of time. No doctor is required to keep you as a patient, although rules do exist as to the process of dropping you. If she honestly believes you are a drug seeker, she can put that in your chart. But no, there is no central database where she can write things about you and HIPAA laws would prevent that anyway.
 
@cbg thank you. I nknow she knows I'm not a drug seeker so it's good to know that. I assume it's illegal to knowingly lie about a patient in the chart? Second question, What HIPPA laws prevent her from just outright dropping me? Thanks for getting down to the core of what my question really is.

It's nice to find a forum where I get treated nicely and people honestly try to give good answers. Thank all of you for your kindness and respect.
 

quincy

Senior Member
@cbg thank you. I nknow she knows I'm not a drug seeker so it's good to know that. I assume it's illegal to knowingly lie about a patient in the chart? Second question, What HIPPA laws prevent her from just outright dropping me? Thanks for getting down to the core of what my question really is.

It's nice to find a forum where I get treated nicely and people honestly try to give good answers. Thank all of you for your kindness and respect.
Nothing prevents a physician from dropping you as a patient, if you have another physician available to treat you, and continued care is considered medically necessary. A physician CAN discontinue medications the physician feels are not medically necessary.
 

commentator

Senior Member
I can honestly tell you that often "fresh eyes" are a very good thing to put on a case, even if your doctor is one of the best of the best of the best. You seem to have thought yourself into a situation where, for every suggested solution or something to do, you can say "yes, but......" and think of a reason not to do it. This makes it very hard for anyone else to help you, including a doctor. And when nothing is working, and you are a constant litany of complaints and requests for specific treatments and new drug interventions, you are persistently asking for a diagnosis that will qualify you for disability and they do not wish to give you one for some reason or another, they are not going to enjoy working with you. And you are one of many patients to her. You can concentrate lots of your thought life on her, but I doubt if she stays up nights thinking about you.

I really doubt if this doctor has actually "made threats against you" if you drop her. Even if there were things she could threaten you with, where in the sam hill is the benefit to her to do this? Why would she want to keep you as her patient when the relationship has so obviously failed to be helpful to either of you? Yes it is hard to get one specialist to give you a referral to another specialist particularly in the system you are working with. But do it, wait for them, accept that Vanderbilt isn't going to be your cup of tea. You have to audition for an appointment at the Mayo Clinic. But who knows, you have to start somewhere. This doctor isn't going to be it. . Even if you have to wait, you need to get in to see the other doctors you have appointments with.

Even when you are carrying your records to the ER, you still are going to sound like a medication seeker to them. It sounds as though your whole life is tied up with your condition and your pain and the treatment thereof. I suggest you do some counseling to help you deal with your frustrations, your lack of any other life. You are very young and you're simply not having any other fun or any other life, from the sound of this. Get help for yourself in both physical changes such as new doctors, possible new treatments, and by speaking to someone who can perhaps help you deal with it all.

I think you have a very unrealistic idea about what your neurologist thinks of you, how much her level of involvement with you is, and how much she could if she were willing to take her time, risk her reputation, behave in a possibly unethical manner, etc. do to hurt you. As it has been pointed out, HIPAA regulations stop her from talking trash about you, but she can drop you and can put things on your records that she believes to be true. I have known of several cases where someone has been formally told they were dropped from a doctor's practice. It is altogether fitting and proper, they are allowed to do this. As for what she might say about you in your medical charts. If they are so negative they'd hurt you, don't let them be true.
 
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cbg

I'm a Northern Girl
HIPAA laws do not prevent her from dropping you. You asked if there was a database where she could write things about you; I answered no there was not, and even if there was such a data base, HIPAA laws would prevent her from writing about you in it.
 

ajkroy

Member
OP, have you been to a pain clinic yet? They specialize in treating all types of chronic pain, usually with nerve blocks instead of drugs (they also often manage to funnel out the drug-seekers that way).
 
I can honestly tell you that often "fresh eyes" are a very good thing to put on a case, even if your doctor is one of the best of the best of the best. You seem to have thought yourself into a situation where, for every suggested solution or something to do, you can say "yes, but......" and think of a reason not to do it. This makes it very hard for anyone else to help you, including a doctor. And when nothing is working, and you are a constant litany of complaints and requests for specific treatments and new drug interventions, you are persistently asking for a diagnosis that will qualify you for disability and they do not wish to give you one for some reason or another, they are not going to enjoy working with you. And you are one of many patients to her. You can concentrate lots of your thought life on her, but I doubt if she stays up nights thinking about you.

I really doubt if this doctor has actually "made threats against you" if you drop her. Even if there were things she could threaten you with, where in the sam hill is the benefit to her to do this? Why would she want to keep you as her patient when the relationship has so obviously failed to be helpful to either of you? Yes it is hard to get one specialist to give you a referral to another specialist particularly in the system you are working with. But do it, wait for them, accept that Vanderbilt isn't going to be your cup of tea. You have to audition for an appointment at the Mayo Clinic. But who knows, you have to start somewhere. This doctor isn't going to be it. . Even if you have to wait, you need to get in to see the other doctors you have appointments with.

Even when you are carrying your records to the ER, you still are going to sound like a medication seeker to them. It sounds as though your whole life is tied up with your condition and your pain and the treatment thereof. I suggest you do some counseling to help you deal with your frustrations, your lack of any other life. You are very young and you're simply not having any other fun or any other life, from the sound of this. Get help for yourself in both physical changes such as new doctors, possible new treatments, and by speaking to someone who can perhaps help you deal with it all.

I think you have a very unrealistic idea about what your neurologist thinks of you, how much her level of involvement with you is, and how much she could if she were willing to take her time, risk her reputation, behave in a possibly unethical manner, etc. do to hurt you. As it has been pointed out, HIPAA regulations stop her from talking trash about you, but she can drop you and can put things on your records that she believes to be true. I have known of several cases where someone has been formally told they were dropped from a doctor's practice. It is altogether fitting and proper, they are allowed to do this. As for what she might say about you in your medical charts. If they are so negative they'd hurt you, don't let them be true.
When I go to the ER I specifically ask for no opiates as the dosages available just hurt me more than help. I just ask for fluids and IV anti emetics and anti-convulsants. I have humored many doctors with the meds they prescribe, I've tried all but one of the meds they suggested for at least 60 days, one medicine made me have 3 suicide attempts, (remember I go up to 5 days without sleep and that effects the ways the meds act), another med made me believe very strange things. I stayed on the med that caused the suicide attempts for 7 months, even after the first and second attempt, I tried. I give them a fair shot. I even let them shoot me up with 5g of solu medrol in the ER, just to humor them, even though It caused increased pain. Whenever they claim I'm not cooperative, I say that I will give an honest try to their ideas which is usually 3 months or more. I persevere through some of the worst side effects in hope of reduced pain. When i couldn't give blood because I'd been to the ER so many times I now let them draw from my jugulars. The fact is that in over 10+ years of suffering i have tried many medications, and they either don't work, don't work with nasty side effects, or barely work, but with worse side effects. I've gone through 5 lumbar punctures from 4 neurologists and an ER doc.

Multiple neurologists have fought to keep my case. I've been told many times that I likely have at least 3 very rare or possibly undiscovered diseases by multiple doctors, this is why I feel she wants to keep me as a trophy.

Please don't stereotype me as an unwilling patient. I can barely crawl out of bed to the bathroom, (I vomit over 6 times a day on avg) a shower is a very anxious and painful experience and it's frustrating.

To whoever said they doubt she threatened me, she said that she would make sure I couldn't get into another hospital of Vandy's standing like mayo or the like and would write a poor reference for my disability case. This is why I'm afraid. When I piss her off she seems to withhold refills, by just a few days, but enough to notice. All of my RXs from her are set up where they have to authorize the refill. The neuros i've seen on the QT basically said that they wouldn't do anything more than she's doing.

Is it legal to record my appointment or make a log of this behavior? I just don't want to be screwed. I don't want a lawsuit, I just want my meds on a prompt schedule, and decent treatment. Sad thing is, this is the best treatment I've gotten in years so I'm afraid to leave if she'll make it difficult for me to get into a similar institution. Thanks for your help again.
 

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