Tips On How To Work With A Conventional Dr. Without Conflict?

[PowertothePeatple]

My daughter has a medical problem which is causing us to have to see many specialists and order a lot of tests. I am not able to go just to a Peat friendly Doctor. I am always questioning them and trying to understand exactly what is going on. I want to participate in our medical care. I also am trying to protect my daughter from exposure to excessive x-rays and contrasts dyes. I do my research and come up with alternatives I know are medically acceptable but... Dr.s hate me. I don't think I am being rude but just even asking questions seems to make them very angry.

We have been to many Doctors and they all want to order repeat tests. It takes so long to get into see each Dr. that by the time we do they say to scans are old and need to be redone. I think I am one of the only people who has ever questioned them or at least it seems that way. My daughter needs another MRI. I don't believe contrast dye is necessary but how do I convince a Dr? It is not a life threatening situation and therefore I feel non-toxic diagnostics are the obvious choice. I would appreciate any tips people might have.

 

[jitsmonkey]

Sadly you are at war and your doctor is the enemy.
you are dealing with people who are the clergy of their religion
and the depth of ignorance they possess regarding what they think they know vs what they actually
know is beyond mindboggling.
Doubly sadly he/she is the gatekeeper to the services you desire.
Its is critical that at no point you think the doctors have your child's best interest at heart.
The relationship is not adversarial because of you the relationship is adversarial because its war.
I've had many opportunities to advocate for friends and family and as much as I'd like to tell
you its something else... its not.
You simply keep demanding, keep questioning, do not allow yourself to be bullied and fight like hell
to make sure you get what you want for your daughter.
Some people skills can help this to a degree but at the end of the day war is ugly.
Its also important to remember that the doctor is likely completely unaware of this
they are in all likelihood well meaning people with zero malice
but their blindness to their simultaneous ignorance and allegiance to the religion they represent
mandates it be an adversarial engagement. By religion I simply mean if you look up the definition
of what an organized religion is, the practice of modern medicine fits that definition to a T.
From experience... Fight like hell is the only advice I can offer you.

 

[Blossom]

Most doctors are in a difficult situation because they are completely constrained to doing things a certain way out of fear of lawsuits and losing their medical license if they do not conform to specific standards of practice. On top of that they have very little extra time to deal with anything that interrupts the flow of how long appointments are anticipated to take for certain issues. They truly get it from all sides even worse than most middle management jobs and have to witness daily how much of the system is completely failing around them. It's very sad but I truly believe it's largely because of insurance companies dictating reimbursement which seems to be shrinking by the day. The humanity has been taken out of most medical situations. None of that is any one individual's fault it's just the current state of affairs.
It might help if you make clear from the outset that your primary concern is that your daughter get adequate care with the least amount of unnecessary and potentially harmful interventions and that your questions and concerns have nothing to do with doubting or questioning their expertise.
You could also see if there are any independent patient advocates for hire in your area that could help you navigate the complex situation you are facing.
Best wishes, I know this is a trying time and I hope your daughter is okay.

 

[Dolomite]

Blossom is right about doctors seeming to have to follow a format for diagnoses. Insurance companies and Medicare have some strict guidelines, too. Also, doctors seem to not want to change course or really listen to patients who have been to other doctors. They seem to be suspicious of someone who didn’t get cured by the first doctor. If I were in your position I would try not to know too much and to make my questions as simple as possible and to be really thankful for all their answers even if you have to fake it. Gatekeepers don’t like to be one upped.

 

[Blossom]

All medical workers on the front lines so to speak are feeling the heat right now. The climate has changed dramatically in the last twenty years. Gone are the days where doctors enjoyed carte blanche respect and elevated status. People in general are more knowledgeable about health and demand more information. They are taking more responsibility for their own and their families health and looking for a team approach. These are all good things but I think many health care workers need to learn give a level of customer service they were never taught in school. Doctors are taught to be authoritarian because in the medical world they need to be an authority.
We have a very broken system and it’s difficult for people to be respectful in a system that’s let them down and failed them -often repeatedly.
I think both the workers and the patients feel frustrated right now and all we can do is try to relate to one another respectfully while advocating for what is the best care possible.

 

[tankasnowgod]

I don't know if this will help, but I just recently watched this video from Dr. Thomas Levy regarding Vitamin C therapy and the Law. Apparently, he is both a Cardiologist and an Attorney. I don't know your specific situation, but he probably has some ideas that you can apply to your specific circumstance.

 

[Dolomite]

In my area there are only three doctors, one family medicine and two dermatologists, who are not affiliated will a hospital medical group. They might have some control over their offices but they are not truly independent.

 

[Herbie]

They are the authority, the educated, the intelligent, the privileged.

Everyone else is dumb, subservient, under privledged, un educated.

Know your place, know the reality of the lamestream.

Information generally does not flow from the bottom up.

 

[jitsmonkey]

Watch the movie John Q.
you won't need the weapons nor the violence
but you'll see the mindset necessary
to protect your daughters life.

 

[Queequeg]

You are absolutely correct to stay away from the MRI contrast dyes. There was a long thread on the site about them where a radiologist and tech both said they are dangerous. According to them it is usually not necessary.

With that said maybe the RPF collective can help out with more ideas for your daughters condition if you wouldnt mind letting us know what you're up against. Also an email to Ray may be appropriate.

 

[Lee Simeon]

All medical workers on the front lines so to speak are feeling the heat right now. The climate has changed dramatically in the last twenty years. Gone are the days where doctors enjoyed carte blanche respect and elevated status. People in general are more knowledgeable about health and demand more information. They are taking more responsibility for their own and their families health and looking for a team approach. These are all good things but I think many health care workers need to learn give a level of customer service they were never taught in school. Doctors are taught to be authoritarian because in the medical world they need to be an authority.
We have a very broken system and it’s difficult for people to be respectful in a system that’s let them down and failed them -often repeatedly.
I think both the workers and the patients feel frustrated right now and all we can do is try to relate to one another respectfully while advocating for what is the best care possible.

This was extremely well put!

 

[PowertothePeatple]

You are absolutely correct to stay away from the MRI contrast dyes. There was a long thread on the site about them where a radiologist and tech both said they are dangerous. According to them it is usually not necessary.

With that said maybe the RPF collective can help out with more ideas for your daughters condition if you wouldnt mind letting us know what you're up against. Also an email to Ray may be appropriate.

My daughter woke up after an airplane flight with a swelling in front of her ear around 2 inches big with a slight bluish color. But no one so far has been able to tell us what it is. We have seen an oncologist, ENT, Dermatologist, Plastic Surgeon, and Hematologist(family history of hemophilia). It is on her face so everyone seems terrified to tackle it and keep sending us to the next specialist. So far the best guesses are a hematoma, a lymphatic malformation, or possibly a atypical case of cauliflower ear. When we took a fine needle biopsy only blood came out and then the Doctor got nervous and sent us to someone else. So far we have ruled out parotid tumor and cancer. She had an MRI without contrast and the cyst showed up brightly on the MRI(meaning it is a fluid). But now they want to use contrast.

Normally I try to heal everything at home if I can but this may require surgery and as of yet is undiagnosed. So that is the dilemma how to get her diagnosed without doing permanent damage.

 

[PowertothePeatple]

I don't know if this will help, but I just recently watched this video from Dr. Thomas Levy regarding Vitamin C therapy and the Law. Apparently, he is both a Cardiologist and an Attorney. I don't know your specific situation, but he probably has some ideas that you can apply to your specific circumstance.

Thanks. This seems like a good video. I glanced through it and will have to watch it more thoroughly. My dilemma is that I have the right to refuse their protocol (which I frequently do) but then they have the right to drop me as a patient. But then the next Doctor is exactly the same. I can tell that many of these Doctors are intelligent and could be helpful but they refuse to collaborate with me i.e think outside the box. For sure, all my charts are labeled "Difficult" :)

 

[tankasnowgod]

My daughter woke up after an airplane flight with a swelling in front of her ear around 2 inches big with a slight bluish color. But no one so far has been able to tell us what it is. We have seen an oncologist, ENT, Dermatologist, Plastic Surgeon, and Hematologist(family history of hemophilia). It is on her face so everyone seems terrified to tackle it and keep sending us to the next specialist. So far the best guesses are a hematoma, a lymphatic malformation, or possibly a atypical case of cauliflower ear. When we took a fine needle biopsy only blood came out and then the Doctor got nervous and sent us to someone else. So far we have ruled out parotid tumor and cancer. She had an MRI without contrast and the cyst showed up brightly on the MRI(meaning it is a fluid). But now they want to use contrast.

Normally I try to heal everything at home if I can but this may require surgery and as of yet is undiagnosed. So that is the dilemma how to get her diagnosed without doing permanent damage.

If you didn't watch the Thomas Levy video I posted, you may want to skip ahead to the 10 minute mark, as that's where he starts talking about Legal issues.

To sum up, he suggests that you get everything in writing. For example, a doctor says he wants another test with contrast dye, get it in writing. Get his written explanation for why he now wants to use contrast dye (even better if you bring studies or evidence in that shows they are dangerous), why he is willing to take that additional risk, and why the MRI's you already have aren't adequate.

EDIT- I was posting this at the exact time you were replying, fyi.

 

[PowertothePeatple]

Sadly you are at war and your doctor is the enemy.
you are dealing with people who are the clergy of their religion
and the depth of ignorance they possess regarding what they think they know vs what they actually
know is beyond mindboggling.
Doubly sadly he/she is the gatekeeper to the services you desire.
Its is critical that at no point you think the doctors have your child's best interest at heart.
The relationship is not adversarial because of you the relationship is adversarial because its war.
I've had many opportunities to advocate for friends and family and as much as I'd like to tell
you its something else... its not.
You simply keep demanding, keep questioning, do not allow yourself to be bullied and fight like hell
to make sure you get what you want for your daughter.
Some people skills can help this to a degree but at the end of the day war is ugly.
Its also important to remember that the doctor is likely completely unaware of this
they are in all likelihood well meaning people with zero malice
but their blindness to their simultaneous ignorance and allegiance to the religion they represent
mandates it be an adversarial engagement. By religion I simply mean if you look up the definition
of what an organized religion is, the practice of modern medicine fits that definition to a T.
From experience... Fight like hell is the only advice I can offer you.

I definitely feel this way sometimes. I can battle for awhile then I get tired and have to take a break. Sometimes I give in just because I am so tired of fighting.

 

[PowertothePeatple]

If you didn't watch the Thomas Levy video I posted, you may want to skip ahead to the 10 minute mark, as that's where he starts talking about Legal issues.

To sum up, he suggests that you get everything in writing. For example, a doctor says he wants another test with contrast dye, get it in writing. Get his written explanation for why he now wants to use contrast dye (even better if you bring studies or evidence in that shows they are dangerous), why he is willing to take that additional risk, and why the MRI's you already have aren't adequate.

EDIT- I was posting this at the exact time you were replying, fyi.

Thanks that is a good idea and I will try it.

 

[Queequeg]

My daughter woke up after an airplane flight with a swelling in front of her ear around 2 inches big with a slight bluish color. But no one so far has been able to tell us what it is. We have seen an oncologist, ENT, Dermatologist, Plastic Surgeon, and Hematologist(family history of hemophilia). It is on her face so everyone seems terrified to tackle it and keep sending us to the next specialist. So far the best guesses are a hematoma, a lymphatic malformation, or possibly a atypical case of cauliflower ear. When we took a fine needle biopsy only blood came out and then the Doctor got nervous and sent us to someone else. So far we have ruled out parotid tumor and cancer. She had an MRI without contrast and the cyst showed up brightly on the MRI(meaning it is a fluid). But now they want to use contrast.

Normally I try to heal everything at home if I can but this may require surgery and as of yet is undiagnosed. So that is the dilemma how to get her diagnosed without doing permanent damage.

Well Im not qualified to answer but I am surprised they cant figure out what it is, especially after a biopsy. Sounds like they are trying to look for some vasculature within the cyst. In the thread below one of the Doctors recommended an ultrasound as an alternative to the contrast. That was subsequently done and showed the cyst was benign.
Is MRI Contrast Agent Worth Risk

here is a good post from fiver, a radiologist explaining the contrast issue

Hello,
Radiologist here. The reason for the gadolinium in your case is to determine if your kidney lesion is vascular (enhancing). It sounds like it is not a simple cyst, because simple cysts are hyperintense on T2. It could be a complex cyst (no vascular component, not enhancing), meaning that there is more than just water inside (blood, protein), or it could be a tumor (solid tissue with vascularity). An MRI picture with gadolinium can be digitally "subtracted" from the picture without gadolinium, in order to tell if the whole lesion or any part of the lesion is vascular. If there is no enhancing component, you can rest assured that it is not cancer.

That said, you are correct that there is concern over residual gadolinium in the body. The gadolinium contrast agents that leave the least amount of gadolinium behind are Dotarem, Gadavist, and Prohance, and I would certainly tell you to request one of those. Since the lesion is so small, you could track its size with non-gadolinium MRIs to see if it grows over time. How long has it been since the lesion was initially found? Another alternative is ultrasound, but that depends on where the lesion is (how deep from the skin) in terms of how well it can be characterized (complex cyst vs tumor) that way. Ultrasound can also be used to track the size of the lesion over time, instead of the more expensive MRI. CT can also tell if it is vascular or not, but that involves iodinated contrast and radiation.

Finally, there is one kind of kidney tumor that has fat in it and that is usually a benign tumor. If they detect fat in the tumor by MRI (gadolinium is not needed for this), they do not need to give you gadolinium. You could ask the techs to have the radiologist check the images for fat in the tumor after the first part of the study, to see if you need the gadolinium or not. Good luck to you and let us know how it goes.

perhaps @DrJ, @Ras, or @Fiver can weigh in.

 

[jitsmonkey]

I definitely feel this way sometimes. I can battle for awhile then I get tired and have to take a break. Sometimes I give in just because I am so tired of fighting.

I completely understand.
Sadly its an extremely hostile environment and while the other comments are trying to be helpful
I think they clearly underestimate the real threat posed.
Constant vigilance is the only way to maximize your daughters chances of getting what she needs and being harmed minimally.
As I said I don't think most doctors harbor malice but they in fact make a daily choice
to show up an behave as they do, while they are not the cause of the system they operate in they certainly are not blameless victims.
I apologize for being so harsh/alarmist but I have too much experience with these people both personally and professionally
to be anything else. Seeking health care from the religion of modern medicine is a dangerous and sometimes necessary proposition.
I sincerely feel for you and your daughter and I wish you the strength to get her what she needs.

 

[jitsmonkey]

They are the authority, the educated, the intelligent, the privileged.

Everyone else is dumb, subservient, under privledged, un educated.

Know your place, know the reality of the lamestream.

Information generally does not flow from the bottom up.

This.

 

[Hugh Johnson]

My daughter has a medical problem which is causing us to have to see many specialists and order a lot of tests. I am not able to go just to a Peat friendly Doctor. I am always questioning them and trying to understand exactly what is going on. I want to participate in our medical care. I also am trying to protect my daughter from exposure to excessive x-rays and contrasts dyes. I do my research and come up with alternatives I know are medically acceptable but... Dr.s hate me. I don't think I am being rude but just even asking questions seems to make them very angry.

We have been to many Doctors and they all want to order repeat tests. It takes so long to get into see each Dr. that by the time we do they say to scans are old and need to be redone. I think I am one of the only people who has ever questioned them or at least it seems that way. My daughter needs another MRI. I don't believe contrast dye is necessary but how do I convince a Dr? It is not a life threatening situation and therefore I feel non-toxic diagnostics are the obvious choice. I would appreciate any tips people might have.

When it comes to hostile parties, like doctors, violent criminals etc. you need to manipulate. Lie, lie and lie more. Do what you need to do, and manipulate them in any way you can to get what you need and to stay safe.