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Your Tips on How to Get Off to the Best Start with a New Specialist

Posted by @colleenyoung, Fri, Nov 2 12:09pm

I’m looking for your best tips.
Starting a relationship with a new specialist can be daunting. You want to get off to a good start and ensure that you establish mutual respect and are able to develop trust. You want to know you’re in good hands. What is their expertise and experience? What research are they doing? Will they listen and consider your input?

How do you get off to the best start with a new provider? What suggestions would you tell a friend who is going to see a new doctor?

REPLY

@colleenyoung ….I would if l were starting with a new doctor….be on time or early to appt…bring my insurance cards….bring copies of relevant tests and CD's and current meds even if l had requested they would be sent ahead….have a list of questions. I would also give the front desk a list of name of doctor (s) and addresses l want their report to be sent to. tdrell

Great idea to prepare information on how to prepare. I hope you ask some appointment coordinators, nurses and doctors for their input also.

I try to be as prepared for any questions the doctor might ask and have a list of questions for the doctor. The more prepared I am, the more efficient the appointment will be. I would rather have too much information with me then not enough.

Think back to other doctors' appointments, what questions did the nurse or doctor ask. Be prepared to answer those questions again.

I have been a patient of Mayo my entire life, and all my information is online, I still bring the following list to my appointment just in case. Even though information is online, it does take time for a doctor to find. If he wants to look up details, it is nice to have dates of previous tests, etc…

My suggestions:

1. Make sure your appointment is with right specialist. At Mayo the appointment coordinators should be able to help. Just because a friend saw a certain doctor, he/she might not be correct specialist for your condition.
2. Have your referring doctor send all medical records (preferable electronically). In addition, bring a copy with you just in case something gets misplaced. Again, preferable on a disk.
3. In addition, I always have the following with documents with me:
○ List of all medications I take, who prescribed, why I take that medication, how long I have taken that medication.
○ If there are other medications I have taken in recently that I no longer take, it is nice to have that information also. Maybe your previous doctor recommended something and it did not work. You want your new doctor to know this information.
○ Your list should include all prescribed and over the counter medication.
○ You might want to bring all the bottles with you so there is no question about dosages.
○ List of all allergies
○ List of all surgeries, date and location.
○ List of all medical conditions, when diagnosed and are you still being treated for this condition. A specialist is not there to treat all your problems, but something may be related to your current problem.
4. Write down your understanding of current problem and list of symptoms. Be specific.
a. When did symptoms start
b. How are you treating the symptoms
c. Does anything make them worse or better.
d. What tests have been done for current problem, date, location, results
5. Write down your questions related to current problem in order of importance. At end of appointment, look through your list and see if they have been answered.
6. Take notes, the doctor's summary will be available online after your appointment. If he tells you something and you do not know how to spell it, ask him to write it down.

If your appointment is at Mayo, and you use the internet register for the Mayo Portal. It is great reference to double check appointment information, fill out forms, check results and see doctor notes. Even if you fill out form online, also bring information to appointment. And if use a smart phone, download app.

Hope this helps.
Laurie

The very first thing I would tell a friend is to be completely honest with your doctor. There should be absolutely nothing to hide related to your health. After all, their intention is to help patients. It doesn't always work out that way, but without honesty by both patient and doctor, the exercise is a waste of time and money.

The other advice given by others is right on the money. Arrive early, be prepared with prior medical record and any questions. To me, it's all respect for the doctor's time. We only get a limited amount of their time/attention. Using that time as efficiently as possible is in the patient's best interest.

@roch

Great idea to prepare information on how to prepare. I hope you ask some appointment coordinators, nurses and doctors for their input also.

I try to be as prepared for any questions the doctor might ask and have a list of questions for the doctor. The more prepared I am, the more efficient the appointment will be. I would rather have too much information with me then not enough.

Think back to other doctors' appointments, what questions did the nurse or doctor ask. Be prepared to answer those questions again.

I have been a patient of Mayo my entire life, and all my information is online, I still bring the following list to my appointment just in case. Even though information is online, it does take time for a doctor to find. If he wants to look up details, it is nice to have dates of previous tests, etc…

My suggestions:

1. Make sure your appointment is with right specialist. At Mayo the appointment coordinators should be able to help. Just because a friend saw a certain doctor, he/she might not be correct specialist for your condition.
2. Have your referring doctor send all medical records (preferable electronically). In addition, bring a copy with you just in case something gets misplaced. Again, preferable on a disk.
3. In addition, I always have the following with documents with me:
○ List of all medications I take, who prescribed, why I take that medication, how long I have taken that medication.
○ If there are other medications I have taken in recently that I no longer take, it is nice to have that information also. Maybe your previous doctor recommended something and it did not work. You want your new doctor to know this information.
○ Your list should include all prescribed and over the counter medication.
○ You might want to bring all the bottles with you so there is no question about dosages.
○ List of all allergies
○ List of all surgeries, date and location.
○ List of all medical conditions, when diagnosed and are you still being treated for this condition. A specialist is not there to treat all your problems, but something may be related to your current problem.
4. Write down your understanding of current problem and list of symptoms. Be specific.
a. When did symptoms start
b. How are you treating the symptoms
c. Does anything make them worse or better.
d. What tests have been done for current problem, date, location, results
5. Write down your questions related to current problem in order of importance. At end of appointment, look through your list and see if they have been answered.
6. Take notes, the doctor's summary will be available online after your appointment. If he tells you something and you do not know how to spell it, ask him to write it down.

If your appointment is at Mayo, and you use the internet register for the Mayo Portal. It is great reference to double check appointment information, fill out forms, check results and see doctor notes. Even if you fill out form online, also bring information to appointment. And if use a smart phone, download app.

Hope this helps.
Laurie

Jump to this post

Laurie@roch @colleenyoung Excellent, comprehensive response, Laurie. The only thing which I would add is, if your are not a Mayo patient, and if your doctors are from different networks, always keep a copy of every test and a chronological (ongoing) list of doctor visits, prescriptions each prescribed and for what, test result anomalies, vaccinations, surgeries, etc. — all medical events — for your reference when preparing to see any physician. Along with the items you mentioned, I write and read a brief history of what I believe led to my current status on any condition which brings me into a doctor's office. It helps the doctor see a bigger picture, and keeps him/her from having to reinvent the wheel, putting you through a raft of unnecessary tests. Also, and I can't emphasize this enough, stop taking all supplements a few days before you have any blood or urine tests (as various supplements can alter the assay of particular components being tested)… and, no, doctors rarely think to mention that to you.

Example of my last point: I was prescribed Biotin to regrow my hair and nails, following chemo. A few months later, a neurologist ordered a thyroid test which indicated hyperthyroidism. I went to see my GP who responded by ordering an ultrasound and referring me to an endocrinologist. As I found it hard to believe that I was hyperthyroid, I did some research on the web and found that, before 2016, endocrinologists mistakenly have been treating patients on Biotin for hyperthyroidism and Graves' Disease for decades, not realizing that Biotin messes with the test results. I retested without Biotin in my system for a week and had normal thyroid test results, thank goodness. Lesson learned.

@roch

Great idea to prepare information on how to prepare. I hope you ask some appointment coordinators, nurses and doctors for their input also.

I try to be as prepared for any questions the doctor might ask and have a list of questions for the doctor. The more prepared I am, the more efficient the appointment will be. I would rather have too much information with me then not enough.

Think back to other doctors' appointments, what questions did the nurse or doctor ask. Be prepared to answer those questions again.

I have been a patient of Mayo my entire life, and all my information is online, I still bring the following list to my appointment just in case. Even though information is online, it does take time for a doctor to find. If he wants to look up details, it is nice to have dates of previous tests, etc…

My suggestions:

1. Make sure your appointment is with right specialist. At Mayo the appointment coordinators should be able to help. Just because a friend saw a certain doctor, he/she might not be correct specialist for your condition.
2. Have your referring doctor send all medical records (preferable electronically). In addition, bring a copy with you just in case something gets misplaced. Again, preferable on a disk.
3. In addition, I always have the following with documents with me:
○ List of all medications I take, who prescribed, why I take that medication, how long I have taken that medication.
○ If there are other medications I have taken in recently that I no longer take, it is nice to have that information also. Maybe your previous doctor recommended something and it did not work. You want your new doctor to know this information.
○ Your list should include all prescribed and over the counter medication.
○ You might want to bring all the bottles with you so there is no question about dosages.
○ List of all allergies
○ List of all surgeries, date and location.
○ List of all medical conditions, when diagnosed and are you still being treated for this condition. A specialist is not there to treat all your problems, but something may be related to your current problem.
4. Write down your understanding of current problem and list of symptoms. Be specific.
a. When did symptoms start
b. How are you treating the symptoms
c. Does anything make them worse or better.
d. What tests have been done for current problem, date, location, results
5. Write down your questions related to current problem in order of importance. At end of appointment, look through your list and see if they have been answered.
6. Take notes, the doctor's summary will be available online after your appointment. If he tells you something and you do not know how to spell it, ask him to write it down.

If your appointment is at Mayo, and you use the internet register for the Mayo Portal. It is great reference to double check appointment information, fill out forms, check results and see doctor notes. Even if you fill out form online, also bring information to appointment. And if use a smart phone, download app.

Hope this helps.
Laurie

Jump to this post

Have another item to add under #3 Medications. Be ready to answer any questions about alcohol usage, cannabis, and use of other street drugs. The doctor needs to know this because it can interfere with your other medications and tests the doctor may order.

@elizm

Laurie@roch @colleenyoung Excellent, comprehensive response, Laurie. The only thing which I would add is, if your are not a Mayo patient, and if your doctors are from different networks, always keep a copy of every test and a chronological (ongoing) list of doctor visits, prescriptions each prescribed and for what, test result anomalies, vaccinations, surgeries, etc. — all medical events — for your reference when preparing to see any physician. Along with the items you mentioned, I write and read a brief history of what I believe led to my current status on any condition which brings me into a doctor's office. It helps the doctor see a bigger picture, and keeps him/her from having to reinvent the wheel, putting you through a raft of unnecessary tests. Also, and I can't emphasize this enough, stop taking all supplements a few days before you have any blood or urine tests (as various supplements can alter the assay of particular components being tested)… and, no, doctors rarely think to mention that to you.

Example of my last point: I was prescribed Biotin to regrow my hair and nails, following chemo. A few months later, a neurologist ordered a thyroid test which indicated hyperthyroidism. I went to see my GP who responded by ordering an ultrasound and referring me to an endocrinologist. As I found it hard to believe that I was hyperthyroid, I did some research on the web and found that, before 2016, endocrinologists mistakenly have been treating patients on Biotin for hyperthyroidism and Graves' Disease for decades, not realizing that Biotin messes with the test results. I retested without Biotin in my system for a week and had normal thyroid test results, thank goodness. Lesson learned.

Jump to this post

Wow!! I’ve never been asked to stop supplements before blood tests. Thanks for info!

@elizm

Laurie@roch @colleenyoung Excellent, comprehensive response, Laurie. The only thing which I would add is, if your are not a Mayo patient, and if your doctors are from different networks, always keep a copy of every test and a chronological (ongoing) list of doctor visits, prescriptions each prescribed and for what, test result anomalies, vaccinations, surgeries, etc. — all medical events — for your reference when preparing to see any physician. Along with the items you mentioned, I write and read a brief history of what I believe led to my current status on any condition which brings me into a doctor's office. It helps the doctor see a bigger picture, and keeps him/her from having to reinvent the wheel, putting you through a raft of unnecessary tests. Also, and I can't emphasize this enough, stop taking all supplements a few days before you have any blood or urine tests (as various supplements can alter the assay of particular components being tested)… and, no, doctors rarely think to mention that to you.

Example of my last point: I was prescribed Biotin to regrow my hair and nails, following chemo. A few months later, a neurologist ordered a thyroid test which indicated hyperthyroidism. I went to see my GP who responded by ordering an ultrasound and referring me to an endocrinologist. As I found it hard to believe that I was hyperthyroid, I did some research on the web and found that, before 2016, endocrinologists mistakenly have been treating patients on Biotin for hyperthyroidism and Graves' Disease for decades, not realizing that Biotin messes with the test results. I retested without Biotin in my system for a week and had normal thyroid test results, thank goodness. Lesson learned.

Jump to this post

@elizm my endo also told me to stop biotin a few days before the TSH test. It does not effect your thyroid, only the test.
JK

These are all great. I include caffeine use and vitamins. Maybe since the folks I see are because of a TBI, I bring a plate of gingered cinnamon crinkles – always puts the staff in a positive mood.

Nice!!!

These are all great tips in how to prepare for a visit. I'd like to dig a bit deeper. How do you develop rapport with a new doctor?

Coincidentally, I came across this article today.
Getting Your Doctor to Really See You https://thedoctorweighsin.com/getting-your-doctor-to-really-see-you/

It provides strategies about how you can, as a patient, get your doctor to engage with you as a person. It is divided into 3 parts:
– Individual flair can ignite conversation
– Appeal to the physician as both scientist and healer
– Let technology pave the path

How do you present yourself to your doctor to establish the kind of relationship you want?

@colleenyoung

These are all great tips in how to prepare for a visit. I'd like to dig a bit deeper. How do you develop rapport with a new doctor?

Coincidentally, I came across this article today.
Getting Your Doctor to Really See You https://thedoctorweighsin.com/getting-your-doctor-to-really-see-you/

It provides strategies about how you can, as a patient, get your doctor to engage with you as a person. It is divided into 3 parts:
– Individual flair can ignite conversation
– Appeal to the physician as both scientist and healer
– Let technology pave the path

How do you present yourself to your doctor to establish the kind of relationship you want?

Jump to this post

@colleenyoung that's a good article. I saw 5 spine surgeons prior to coming to Mayo who would not help me. It was too easy for them to dismiss me and bring up a differential diagnosis of a possible disease instead of the symptoms caused by an old spine injury. Why? Because I had unusual symptoms and I also had overlapping symptoms from thoracic outlet syndrome causing nerve compression in my chest. They only expected me to have arm pain from the level of my disc problem, and I had pain everywhere. I had mapped that out on a dermatome map of the body and how it changed over time. This is a map of the specific areas that all the spine nerve roots supply from where it exits the spine. That worked against me when a surgeon suggested I might have an inflammatory problem like MS because of pain points in every single dermatome segment. I knew that I could change where the pain was in my body by changing the position of my neck, but he just dismissed my comment. He didn't want to take a chance on me and possibly lower his ratings of success because he didn't know how to connect my symptoms with my imaging. Insurance companies use these statistics to rate providers, and patients review doctors online. He is the respected co director of spine surgery at a university medical center and medical school.

I found medical literature with cases similar to mine, and none of my other doctors at that institution would point out this mistake to the director of spine surgery who was the surgeon who saw me. I didn't think he would listen to me if I sent him the literature. I actually found the literature because I read papers from a Mayo surgeon, and I looked up a term I didn't understand. That found the case study, so I wrote a personal letter to this Mayo neurosurgeon and sent that case study with my letter saying that I have similar symptoms along with my imaging, and I had requested that he review my imaging. A month later, I was given an appointment with this surgeon, and he offered to help me.

I thought I would have to plead for help, and I brought one of my paintings with me when I met the surgeon so he would understand what I did for a living and why I needed his help. That was the beginning of a great relationship, and he like my painting. I would bring my new paintings with me to followup appointments during my recovery, and he always wanted to see them. I had worked previously in research for a neuroanatomy professor, and I did the processing of tissues for the microscope, and I had also done some scientific drawings that were published in neuroscience journals. I brought a copy of this study to an appointment, and watched my surgeon's face light up when I showed it to him. He wanted to read the research study about the development of the visual system and how nerves are mapped from the eyes to the vision centers in the brain. It's also because of my prior experience that I looked to research and doctors associated with research as a better place for me to find the help I needed. As people, we are intrigued by new information, and it gets attention, and if you show a brain surgeon a study about the development of the brain, you're feeding his interest.

I kind of think of this a job interview for both parties. As a patient, I need to stand out as someone that needs help and can be helped successfully, and as someone who will cooperate and follow directions. I am also interviewing a doctor to see if I can trust them, and if their area of interest closely matches my needs, and my impression of the capabilities of the doctor. I know I'm not really qualified to make that call, but the doctor needs to explain enough about my case so I trust his qualifications and answer my questions.

If a surgeon thinks a patient will not appreciate their help, they are less likely to help the patient. I watched a video online and heard the same surgeon "director" who missed my diagnosis recommend to other neurosurgeons at a conference, that the time to say no to surgery is if the patient has mental issues. He said you can do the best surgery in the world and they won't appreciate it. I was a little shocked and I wondered if that had been part of why he didn't help me. I wondered if he didn't believe my symptoms were real. His nurse had repeatedly discredited what I reported to her, and she had refused to make some followup appointments for me. My neurologist at that institution had even stepped in and scheduled both an MRI and a followup with another surgeon who was a partner. His notes stated that he didn't know why I had the symptoms, and a month later, he took a job at a different hospital. At the last visit to the "director," he commented that he hoped the "partner" didn't just read and copy his notes about my case, and I could tell he was distracted and a bit irritated, and that comment should not have been made to a patient. I didn't let on that I knew and my neurologist had explained as she was just trying to help me get help. She told me where I could find the partner if I wanted to see him again.

I think one of the mistakes I made was to talk about things with correct medical terminology. The internet is a great place to find information, and then the patient can argue with the doctor about the diagnosis. I really was telling the truth, but because the doctor didn't understand my symptoms, it may have discredited me. I think it would also be pretty embarrassing for a patient to get the diagnosis right and the head of spine surgery misses it completely. The doctor has spent years in training and it's their job to diagnose, and the director had made a comment like that the first time I met him. When I met my surgeon at Mayo and the neurologist, I tried to describe things without using medical terms because I didn't know how that would be received. It may not have mattered, and my Mayo surgeon told me he wanted to explain my imaging to me even though I'd probably heard that before, so he did acknowledge that I had knowledge about my condition. He also told me I was the first patient that came to him because of his paper that I found. I guess that's novel too.

@jenniferhunter

@colleenyoung that's a good article. I saw 5 spine surgeons prior to coming to Mayo who would not help me. It was too easy for them to dismiss me and bring up a differential diagnosis of a possible disease instead of the symptoms caused by an old spine injury. Why? Because I had unusual symptoms and I also had overlapping symptoms from thoracic outlet syndrome causing nerve compression in my chest. They only expected me to have arm pain from the level of my disc problem, and I had pain everywhere. I had mapped that out on a dermatome map of the body and how it changed over time. This is a map of the specific areas that all the spine nerve roots supply from where it exits the spine. That worked against me when a surgeon suggested I might have an inflammatory problem like MS because of pain points in every single dermatome segment. I knew that I could change where the pain was in my body by changing the position of my neck, but he just dismissed my comment. He didn't want to take a chance on me and possibly lower his ratings of success because he didn't know how to connect my symptoms with my imaging. Insurance companies use these statistics to rate providers, and patients review doctors online. He is the respected co director of spine surgery at a university medical center and medical school.

I found medical literature with cases similar to mine, and none of my other doctors at that institution would point out this mistake to the director of spine surgery who was the surgeon who saw me. I didn't think he would listen to me if I sent him the literature. I actually found the literature because I read papers from a Mayo surgeon, and I looked up a term I didn't understand. That found the case study, so I wrote a personal letter to this Mayo neurosurgeon and sent that case study with my letter saying that I have similar symptoms along with my imaging, and I had requested that he review my imaging. A month later, I was given an appointment with this surgeon, and he offered to help me.

I thought I would have to plead for help, and I brought one of my paintings with me when I met the surgeon so he would understand what I did for a living and why I needed his help. That was the beginning of a great relationship, and he like my painting. I would bring my new paintings with me to followup appointments during my recovery, and he always wanted to see them. I had worked previously in research for a neuroanatomy professor, and I did the processing of tissues for the microscope, and I had also done some scientific drawings that were published in neuroscience journals. I brought a copy of this study to an appointment, and watched my surgeon's face light up when I showed it to him. He wanted to read the research study about the development of the visual system and how nerves are mapped from the eyes to the vision centers in the brain. It's also because of my prior experience that I looked to research and doctors associated with research as a better place for me to find the help I needed. As people, we are intrigued by new information, and it gets attention, and if you show a brain surgeon a study about the development of the brain, you're feeding his interest.

I kind of think of this a job interview for both parties. As a patient, I need to stand out as someone that needs help and can be helped successfully, and as someone who will cooperate and follow directions. I am also interviewing a doctor to see if I can trust them, and if their area of interest closely matches my needs, and my impression of the capabilities of the doctor. I know I'm not really qualified to make that call, but the doctor needs to explain enough about my case so I trust his qualifications and answer my questions.

If a surgeon thinks a patient will not appreciate their help, they are less likely to help the patient. I watched a video online and heard the same surgeon "director" who missed my diagnosis recommend to other neurosurgeons at a conference, that the time to say no to surgery is if the patient has mental issues. He said you can do the best surgery in the world and they won't appreciate it. I was a little shocked and I wondered if that had been part of why he didn't help me. I wondered if he didn't believe my symptoms were real. His nurse had repeatedly discredited what I reported to her, and she had refused to make some followup appointments for me. My neurologist at that institution had even stepped in and scheduled both an MRI and a followup with another surgeon who was a partner. His notes stated that he didn't know why I had the symptoms, and a month later, he took a job at a different hospital. At the last visit to the "director," he commented that he hoped the "partner" didn't just read and copy his notes about my case, and I could tell he was distracted and a bit irritated, and that comment should not have been made to a patient. I didn't let on that I knew and my neurologist had explained as she was just trying to help me get help. She told me where I could find the partner if I wanted to see him again.

I think one of the mistakes I made was to talk about things with correct medical terminology. The internet is a great place to find information, and then the patient can argue with the doctor about the diagnosis. I really was telling the truth, but because the doctor didn't understand my symptoms, it may have discredited me. I think it would also be pretty embarrassing for a patient to get the diagnosis right and the head of spine surgery misses it completely. The doctor has spent years in training and it's their job to diagnose, and the director had made a comment like that the first time I met him. When I met my surgeon at Mayo and the neurologist, I tried to describe things without using medical terms because I didn't know how that would be received. It may not have mattered, and my Mayo surgeon told me he wanted to explain my imaging to me even though I'd probably heard that before, so he did acknowledge that I had knowledge about my condition. He also told me I was the first patient that came to him because of his paper that I found. I guess that's novel too.

Jump to this post

You have made some important points, @jenniferhunter. You are right about the medical profession being made up of scientifically minded individuals who relate well to facts, research and organized information and thinking.

As you have indicated, doctors are also people who want to be acknowledged for their feelings as well. The more you can connect with your doctor both on a scientific level and a personal level the better your relationship will be.

You have proven how important diligence is in your relationship with the medical staff. I so appreciate what you had to say!

@jenniferhunter

@colleenyoung that's a good article. I saw 5 spine surgeons prior to coming to Mayo who would not help me. It was too easy for them to dismiss me and bring up a differential diagnosis of a possible disease instead of the symptoms caused by an old spine injury. Why? Because I had unusual symptoms and I also had overlapping symptoms from thoracic outlet syndrome causing nerve compression in my chest. They only expected me to have arm pain from the level of my disc problem, and I had pain everywhere. I had mapped that out on a dermatome map of the body and how it changed over time. This is a map of the specific areas that all the spine nerve roots supply from where it exits the spine. That worked against me when a surgeon suggested I might have an inflammatory problem like MS because of pain points in every single dermatome segment. I knew that I could change where the pain was in my body by changing the position of my neck, but he just dismissed my comment. He didn't want to take a chance on me and possibly lower his ratings of success because he didn't know how to connect my symptoms with my imaging. Insurance companies use these statistics to rate providers, and patients review doctors online. He is the respected co director of spine surgery at a university medical center and medical school.

I found medical literature with cases similar to mine, and none of my other doctors at that institution would point out this mistake to the director of spine surgery who was the surgeon who saw me. I didn't think he would listen to me if I sent him the literature. I actually found the literature because I read papers from a Mayo surgeon, and I looked up a term I didn't understand. That found the case study, so I wrote a personal letter to this Mayo neurosurgeon and sent that case study with my letter saying that I have similar symptoms along with my imaging, and I had requested that he review my imaging. A month later, I was given an appointment with this surgeon, and he offered to help me.

I thought I would have to plead for help, and I brought one of my paintings with me when I met the surgeon so he would understand what I did for a living and why I needed his help. That was the beginning of a great relationship, and he like my painting. I would bring my new paintings with me to followup appointments during my recovery, and he always wanted to see them. I had worked previously in research for a neuroanatomy professor, and I did the processing of tissues for the microscope, and I had also done some scientific drawings that were published in neuroscience journals. I brought a copy of this study to an appointment, and watched my surgeon's face light up when I showed it to him. He wanted to read the research study about the development of the visual system and how nerves are mapped from the eyes to the vision centers in the brain. It's also because of my prior experience that I looked to research and doctors associated with research as a better place for me to find the help I needed. As people, we are intrigued by new information, and it gets attention, and if you show a brain surgeon a study about the development of the brain, you're feeding his interest.

I kind of think of this a job interview for both parties. As a patient, I need to stand out as someone that needs help and can be helped successfully, and as someone who will cooperate and follow directions. I am also interviewing a doctor to see if I can trust them, and if their area of interest closely matches my needs, and my impression of the capabilities of the doctor. I know I'm not really qualified to make that call, but the doctor needs to explain enough about my case so I trust his qualifications and answer my questions.

If a surgeon thinks a patient will not appreciate their help, they are less likely to help the patient. I watched a video online and heard the same surgeon "director" who missed my diagnosis recommend to other neurosurgeons at a conference, that the time to say no to surgery is if the patient has mental issues. He said you can do the best surgery in the world and they won't appreciate it. I was a little shocked and I wondered if that had been part of why he didn't help me. I wondered if he didn't believe my symptoms were real. His nurse had repeatedly discredited what I reported to her, and she had refused to make some followup appointments for me. My neurologist at that institution had even stepped in and scheduled both an MRI and a followup with another surgeon who was a partner. His notes stated that he didn't know why I had the symptoms, and a month later, he took a job at a different hospital. At the last visit to the "director," he commented that he hoped the "partner" didn't just read and copy his notes about my case, and I could tell he was distracted and a bit irritated, and that comment should not have been made to a patient. I didn't let on that I knew and my neurologist had explained as she was just trying to help me get help. She told me where I could find the partner if I wanted to see him again.

I think one of the mistakes I made was to talk about things with correct medical terminology. The internet is a great place to find information, and then the patient can argue with the doctor about the diagnosis. I really was telling the truth, but because the doctor didn't understand my symptoms, it may have discredited me. I think it would also be pretty embarrassing for a patient to get the diagnosis right and the head of spine surgery misses it completely. The doctor has spent years in training and it's their job to diagnose, and the director had made a comment like that the first time I met him. When I met my surgeon at Mayo and the neurologist, I tried to describe things without using medical terms because I didn't know how that would be received. It may not have mattered, and my Mayo surgeon told me he wanted to explain my imaging to me even though I'd probably heard that before, so he did acknowledge that I had knowledge about my condition. He also told me I was the first patient that came to him because of his paper that I found. I guess that's novel too.

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@jenniferhunter @colleenyoung
Brava, Jennifer! I can sooo relate to your (frustrating, disconcerting) journey. Over the years, I decided that medical professionals are not gods and need to be regarded like any other professional — that there are good and bad apples, political ones (climbing the department ladder), compassionate (but not necessarily knowledgeable) ones, diagnostically intuitive (and not necessarily congenial) ones, ones who are driven by hidden agendas (viewing patients as potential research subjects or guinea pigs for practicing a new surgical technique, and not as individuals), ones who are potentially burned-out and marking time, ones who are arrogant by nature, ones who may love but don't like women, ones who didn't sleep well the night before, on and on. If you're lucky (and luck has a lot to do with it), you will come across someone who meets at least some of your wants on a personal level, and needs on a professional level. The Law of Large Numbers tells us one must be tenacious in our pursuit of a resolution.

I think people may need to be careful with mentioning the internet… some doctors immediately become defensive and dismissive and focus on attacking "internet medicine," ignoring the implications of a study because many published studies are questionable, out-dated, not peer-reviewed, funded by sources with financial interests, etc. (Finding meta-analyses are more difficult for them to dismiss. Also, mentioning your source as being from a well-known institution (Mayo, Cleveland Clinic, UCSF Medical, Fred Hutchison Cancer Research Center, etc.) gets their attention; or noting that "you have come across a study" might sometimes works. Presumably, it could have been from another medical professional….)

Most patients are not going to have the talents or educations to engage directly with a doctor's interests. Keeping a sense of humor (even when in pain), however, is common ground for most people. (I'm told that, during a past surgery, my anesthesia had not fully kicked in when I had been placed on the narrow surgical table, and that I went into an entire comedy routine with the surgeon, the anesthesiologist, and OR nurses as to whether the table made my ass look too big, etc.) Post-surgery, the surgeon had a totally different demeanor with me. A good (self-deprecating) sense of humor bridges many personality gaps.

And lastly, there is a huge amount of medical information out there and it changes by the minute. Mere mortals (specialists) cannot be expected to keep up with it all. Professionals, in general, do not want to be perceived as lacking knowledge. Be a compassionate patient and appreciate that. If you've done your homework, you likely have a number of things in mind. Ask if the provider has considered such-and-such. The mention of something new to the discussion may ring a bell… make them personally curious to pursue it or a related angle… reorder their thinking… or not. At the conclusion of an unsatisfactory visit, one which does not appear to be going anywhere for you, do not hesitate to ask for that person's recommendation on what to do or who to see next. It may not help, but it can't hurt to have additional resources to add to your "next steps" list.

@colleenyoung

These are all great tips in how to prepare for a visit. I'd like to dig a bit deeper. How do you develop rapport with a new doctor?

Coincidentally, I came across this article today.
Getting Your Doctor to Really See You https://thedoctorweighsin.com/getting-your-doctor-to-really-see-you/

It provides strategies about how you can, as a patient, get your doctor to engage with you as a person. It is divided into 3 parts:
– Individual flair can ignite conversation
– Appeal to the physician as both scientist and healer
– Let technology pave the path

How do you present yourself to your doctor to establish the kind of relationship you want?

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@colleenyoung there’s some really good input here and from the previous responders.

On my first visit with my current PCP in 2014 we knew I was having problems but it took a very long time – too long- to finally get a diagnosis, and my neurologist was the first person who suspected there was a liver problem. .

On that first appointment I felt comfortable with my PCP and he even brought me into his office to show me a picture of his children that was on the wall. Obviously I had mentioned my two so that was a common theme. Being able to get a little personal with him surprised me because when I was researching to find a new doctor I had three candidates and two other doctors said he was very good but very impersonal. At this point I have concluded that he may be different with other doctors than he is with his patients.

The fact that he did not diagnose my cirrhosis bothered me for a very long time. It didn’t bother me immediately but when I discovered how many symptoms I had that were indicative of cirrhosis it did, and I think my rapport with him suffered due to these feelings.

Time has passed though and I think I am in a good place with him now. I think many patients are stiff with doctors, treating them like Gods, but I am pretty much myself, and even try to crack a joke or two occasionally.

I do feel that the current culture of doctors and hospitals, being that the doctors do not have private practices, makes doctors sort of “company men (or woman)” and that sometimes they forget that the patient should be their primary concern, not making unnecessary appointments to make more money for the hospital. I realize I often tend to be cynical but I know that the hospital here does encourage doctors to make appointments that are sometimes unnecessary.

I know, I am a bit off-topic here, but it is somewhat related..
JK

I think that it's a good idea to plan your visit by writing down questions, as you think of them, then making a list from the most important questions to the least important questions. Type the list, making two copies, one for you and one for the specialist. You get a limited amount of time, so don't bring up things that are irrelevant to the specific concerns you have for the specialist. Be brief, be blunt. By planning ahead, I can cram in a lot into a short visit. And these days, the visits are getting shorter and shorter.

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