Navigating conflicting medical opinions to be your own advocate.

Posted by jolinda @jolinda, Aug 26, 2019

I was desperately ill when I sat down with my local specialist and described my plan for a surgery that didn't exist. He wanted the best for me but he cautioned that pursuing my idea might end "very badly". I was so scared. After a lot of research I found Mayo Clinic and I couldn't have asked for a better outcome. Now that he has seen my results my local Dr. even refers other patients for the same procedure. If you are visiting Mayo Clinic know it is a place of hope and healing. This is a link to my story:

Have you ever had conflicting opinions or a diagnosis you disagreed with? Please share your story.

Interested in more discussions like this? Go to the Visiting Mayo Clinic Support Group.

@gingerw

@contentandwell Ah, shucks, thanks. I learned the hard way to stand up for myself, in all matters. Being informed, not taking "no" for an answer if our gut is telling us something else, has won me supporters, alienated many. I am glad you are here!
Ginger

Jump to this post

@gingerw. I’m glad you are here too and I am going to try to be more assertive in the future. My husband actually thinks I already am too assertive when it comes to doctors and says he would hate to be one of my doctors! For that reason we don’t go to the same PCP. I may switch to his though.

My most recent disappointment with my PCP, who is considered to be very good by other doctors, is that after I fractured my femur I contacted his office to see if I was due for a bone density scan. It turns out I have not had one in six years and the last one showed osteopenia. I’ve been told by a couple of people that if you have osteopenia you should be having a scan every two years. I myself should have been on top of this I guess, but no one ever told me that those results showed that I should do that. In my opinion he dropped the ball.
JK

REPLY
@contentandwell

@gingerw. I’m glad you are here too and I am going to try to be more assertive in the future. My husband actually thinks I already am too assertive when it comes to doctors and says he would hate to be one of my doctors! For that reason we don’t go to the same PCP. I may switch to his though.

My most recent disappointment with my PCP, who is considered to be very good by other doctors, is that after I fractured my femur I contacted his office to see if I was due for a bone density scan. It turns out I have not had one in six years and the last one showed osteopenia. I’ve been told by a couple of people that if you have osteopenia you should be having a scan every two years. I myself should have been on top of this I guess, but no one ever told me that those results showed that I should do that. In my opinion he dropped the ball.
JK

Jump to this post

@contentandwell I have also had osteopenian and my Dr send me every 2 years and you should go if you haven't had one for awhile. We need to keep on top of our test and when they should be done . I have a D.O for my Dr.she is very good. My last report said I don't have osteoporosis but my Left hip bones are getting thinner so I found a product called bone growth its a powder you mix with juice or liquid but you have to mix well I blend mine . I'm hoping next time I take the test it will have improved. Get your test so important

REPLY
@jolinda

Jennifer,

To be clear I think it was preparation meeting opportunity in my case. I eliminated everywhere that said, "no", and Mayo was my last shot at it possibly happening. The surgeon I had was brilliant and it was his techniques, courage and empathy for my case that made it possible. Without a living donor to give me a kidney none of this would have happened. I'm blessed to have had such a gifted surgeon and such a generous donor. My part mostly entailed being sick and stubborn! 🙂

Your story turned our so well. What advice would you give to someone who is coming to Mayo who is hurting and scared, someone who was told they couldn't be helped somewhere else?

Jump to this post

My advice to the patient who is hurting, scared and looking for help

Be the best patient you can be to prepare yourself for the opportunity that can come your way when you are seeking medical help. Be the patient that the doctor wants to help. This is a bit like a job interview and the patient decides on who they will trust with their medical care. Doctors also make choices. Patients need to do everything they can to improve their health and want to get well. Don't give the doctor your diagnosis unless it has been diagnosed by another doctor. You are there to talk about your symptoms and let them do the detective work. No one wants to be told how to do their job. Do ask what your doctor thinks about your symptoms and what it could indicate. Don't use specific medical terminology unless you are an established patient with your doctor. A new patient may be perceived as diagnosing themselves and creating a challenge of opinions for the new physician who is trying to do his job.

My advice is :

1) Gather your support team.

Reach out to anyone you know who has overcome medical adversity who you can look up to and learn from. I also talked to my friends about my fears, and the health insurance we had had a program for counseling by nurses about health topics and I talked about fear of surgery and preparing with them. They would call and check on me. Other options are reaching out on Connect to other patients and watching Ted Talks about overcoming fear or talking to a counselor.

2) Identify the problems and learn from them.

Write down a history of the events in your life that have a connection to your fears that you face now and look for a pattern. You were not born with these fears, and if you work through them, you can overcome them. Get all your medical records, reports and imaging. Look up everything on them so you can understand what they say. You may discover that the doctor doesn't understand your symptoms or is going down the wrong path. They look for a differential diagnosis of other conditions that your symptoms could indicate. It is their job to try to make sense of overlapping symptoms. Perhaps you have been dismissed, and another medical person could help you understand the problems, for example a different doctor, nurse, insurance counseling program or physical therapist. Look up current research and treatments for your condition including different surgical procedures and the risks.

3) Trust yourself.

Fear of the unknown is a strong adversary. Learn all you can about your medical situation. Ask lots of questions. You, the patient, and your doctor should work as a team together for your benefit. If it doesn't feel like that, perhaps you have hired the wrong doctor. Your outcome depends on good communications between you and all the medical personnel. The doctor forms an opinion based on the details you provide along with their testing and imaging, and if crucial information is left out, it can change the outcome and decisions that are made. It may be hard to make a decision as a patient, and this is the reason that second or third opinions or more are needed sometimes. For surgeries, there may be different ways to solve the problem, and different opinions and solutions to compare. It's all about choices and choosing the treatment that is right for you that has been informed by a trained professional. Get as many specialist opinions as you need.

4) Believe.

Why me? It may seem unfair to have a challenging medical problem. Instead, ask yourself, what can I do to help myself? What decisions can I make now that will change my future? What should I do to distract myself from worries and fears? What if I make the wrong decision?

If there is a voice inside you telling you not to speak up, ask yourself where did this voice come from? and who told you to keep quiet? Things in our past and upbringing can influence us more than we realize, and we must consciously choose our future for ourselves.
If you have taken control of your health and asked enough questions, you should be on the path to answers for these questions. Reach out for help and emotional support.

Patients have a lot of power in the success of their outcomes if they are fully onboard and believe that they will have a positive outcome and future. Be vigilant. Advocate for yourself. Look up current research because medicine is always changing. Realize that medical problems can sneak up and you and be related to other issues you have that may increase your risks. Often issues can be managed. Understand the risks of medical treatment and drugs. If something doesn't seem right, ask about it, and if the answer isn't satisfactory, ask someone else. Keep asking until you find answers. Doctors are people, and people can make mistakes.

REPLY
@contentandwell

@gingerw. I’m glad you are here too and I am going to try to be more assertive in the future. My husband actually thinks I already am too assertive when it comes to doctors and says he would hate to be one of my doctors! For that reason we don’t go to the same PCP. I may switch to his though.

My most recent disappointment with my PCP, who is considered to be very good by other doctors, is that after I fractured my femur I contacted his office to see if I was due for a bone density scan. It turns out I have not had one in six years and the last one showed osteopenia. I’ve been told by a couple of people that if you have osteopenia you should be having a scan every two years. I myself should have been on top of this I guess, but no one ever told me that those results showed that I should do that. In my opinion he dropped the ball.
JK

Jump to this post

@contentandwell I believe some of my drs wished I was less aggressive. They are the ones who believe M.D. stands for Master Deity. When I was in the courtroom, I often dealt with medical professionals, or sometimes well-known names in different fields. They watched me treat each person with the same respect, good guy or bad guy [who am I to judge?]. Those who demanded I give them special consideration were often surprised when I said my job is to be neutral, everyone gets treated the same.
Ginger

REPLY
@lioness

@contentandwell I have also had osteopenian and my Dr send me every 2 years and you should go if you haven't had one for awhile. We need to keep on top of our test and when they should be done . I have a D.O for my Dr.she is very good. My last report said I don't have osteoporosis but my Left hip bones are getting thinner so I found a product called bone growth its a powder you mix with juice or liquid but you have to mix well I blend mine . I'm hoping next time I take the test it will have improved. Get your test so important

Jump to this post

@lioness. My bone density scan is scheduled in two weeks. I have to call to make sure it won’t require me to lie on my left side because with this fracture that would be impossible.

@gingerw. Thankfully I do not have any doctors who are that arrogant, but many do not give much credit to the patient for knowing anything. That’s one of the things I really liked about the orthopedic doctor who did my last TKR. He showed respect for my opinions. I think my PCP has learned to too which is part of the reason I hate the thought of changing doctors. It took me a long time to break him in! ☺️
JK

REPLY
@contentandwell

@lioness. My bone density scan is scheduled in two weeks. I have to call to make sure it won’t require me to lie on my left side because with this fracture that would be impossible.

@gingerw. Thankfully I do not have any doctors who are that arrogant, but many do not give much credit to the patient for knowing anything. That’s one of the things I really liked about the orthopedic doctor who did my last TKR. He showed respect for my opinions. I think my PCP has learned to too which is part of the reason I hate the thought of changing doctors. It took me a long time to break him in! ☺️
JK

Jump to this post

@contentandwell Call to make sure but I was flat on my back when they did mine ,hopefully that will be yours too.

REPLY
@lioness

@contentandwell Call to make sure but I was flat on my back when they did mine ,hopefully that will be yours too.

Jump to this post

@lioness and @contentandwell Yep, me too, I was flat on my back only, which was an issue seeing I have back problems laying flat.
Ginger

REPLY
@gingerw

@lioness and @contentandwell Yep, me too, I was flat on my back only, which was an issue seeing I have back problems laying flat.
Ginger

Jump to this post

@gingerw. I need a small cushion if I have to be on my back on a surface that is not well cushioned. One of my vertebras protrudes from when I broke it. I laugh that it looks as I have a nose sticking out of my back!
JK

REPLY

Today I woke up with a fibro flare and my nerves are involved I'm sure you who have these know how I feel so I wont be posting today anything .

REPLY
@lioness

Today I woke up with a fibro flare and my nerves are involved I'm sure you who have these know how I feel so I wont be posting today anything .

Jump to this post

@lioness. Take it easy, and I hope you feel better tomorrow.
JK

REPLY
Please sign in or register to post a reply.