How to be your own best medical advocate.

You have to be your own best medical advocate, not just when faced with a health challenge, but also with preventative care! Your body is YOUR BODY and its the only one you get! Thus, you are the expert on your body! You live in it...you know it better than anyone! So how do you become your own best medical advocate? You change from being a passive patient to being an active patient, and here's how:

1) Educate yourself as much as you can about your particular health concern. The world wide web is there for you with a wealth of information. Be discerning, however, because there are a lot of people talking a lot about stuff they know nothing about. Once you've read everything you can, stand up for what you learn. Sometimes you come to know more about a particular condition than the doctor who is seeing you. For instance, my primary care doctor knows nothing about pineal cysts. He takes the word of the neurologist to whom he referred me. However, I now know more about pineal cysts than the neurologist does. I've done my homework...extensively! When I shared my knowledge with my primary care, I helped educate him. There's nothing wrong with that. He can't possibly know everything about everything. But the next time one of his patients has a pineal cyst, he will know more than he did because of me!

2) You have to be sure that the advice you are being given is good advice and that it is the right advice for you. If it doesn't feel right, it probably isn't right for you. Just because a doctor advises that you take a certain drug or receive a certain treatment, or that what you have means nothing...or something...it doesn't mean that you have to do what that doctor tells you to do. You don't HAVE to do anything, except...

 

3) You have to question...everything! News Flash: Doctors don't know everything! They only know what they know. They don't know what they don't know and they can't possibly know everything. And everything they know is not always right or true. That is why...

4) You have to seek multiple opinions. It is your duty as a patient dealing with a serious illness to get multiple opinions before settling on a treatment plan. There are almost always other treatment options available, but if you don't ask, you won't be told. The doctor you see may not know of other options or may not offer any other options. It doesn't mean there aren't any other options. Seek and ye shall find! At least if you seek and don't find, you'll know that you sought. 

5) Consider alternative options. Western medicine is not the only option when facing a health challenge. There is Eastern medicine and there are complementary practitioners who can offer help instead of, or in addition to Western medicine. Be open to other practitioners. For instance, I am getting acupuncture to help with the symptoms from my cyst. It won't cure the cyst, but it is helping to offer some relief so I can function as best as I can while I search for a cure. 

I'm sure there are more suggestions, but this is all that comes to me at this time in such clarity. Is all of this exhausting? You bet it is. And it is really hard to do when you feel crappy. So sometimes I have to take a day off just to not deal with it. It helps to rest and take a break. It can, and does, become all consuming when you are working for your health!

Disclaimer: It may sound as if I have no respect for doctors and am full of mistrust. Nothing could be farther from the truth. Doctors have saved my life and have given quality of life back to me. I would be living my life in a wheelchair if it were not for doctors. But...I've also seen some not so good doctors who have very limited scope in what they know and what they do and what they advise. In order to broaden the scope, we must seek the knowledge and opinions of more than one doctor.

Just today I received a call from my primary care doctor's office saying my insurance company had approved a referral to a neurosurgeon. As soon as I had the name of the neurosurgeon, I Googled him. Of course I did! I'm my own best medical advocate and I want to know who the doctor is and what he does and how well others think he does it. And when I went to his website, I discovered that he is a "spine" neurosurgeon, not a "brain" neurosurgeon. Seeing him would be a waste of his time and mine (and my money and insurance). It's an inappropriate referral. So, I called my primary care doctor's office back and told them this information. I don't know where the error occurred, but I caught the error because...yep, my own best advocate!

Meanwhile, I have successfully accomplished finding my own specialist...a brain neurosurgeon who offers treatment for symptomatic pineal cysts. He has reviewed my records and offered me a consultation. I have scheduled that consultation in June at the Misher Neuroscience Institute, Memorial Hermann, University of Texas Health Science Center in Houston. I will go where the specialist is located. Fortunately for me, he is an in-network provider with my insurance!

I am still looking for other opinions in Denver, but have yet to locate a specialist. I will keep trying because I need other opinions. In order to make the best decision regarding treatment (or no treatment, as the case may be), I need the information. 

We have rights! We have a right to be informed (but we probably have to inform ourselves to be fully informed), we have a right to choose (but we have to know what our choices are), and we have a right to be heard (but we might have to be the one demanding better communication). I have become an active patient and I participate in my own health care. I will get better outcomes because of it! This much I know!