Being Your Own Advocate

So I had to call the neurologist’s office to ask for the MRI results. When I called, they said he’d get back to me. So I waited. Then the office called so I thought it was the Dr. but they said they hadn’t gotten any paperwork from the radiologist so I gave them the place, the date, the time etc. and the woman assured me the Dr. would call me later with the results.

He did call me with the results about 2 hours later which was good and bad.

Dr.: Hi, I got your MRI results back. All is fine.

Me: That’s great. So there’s nothing there to show that there’s a problem with my brain waves?

Dr.: No.

Me: So I don’t have to worry or have another EEG?

He sounds confused. Dr.: No, it’s fine. Just let my office know if you faint again.

Me: How’s the cyst?

Dr.: Cyst? What cyst?

Me: The one on my right side? Has it gotten bigger? Smaller? Stayed the same?

Dr.: There’s nothing in the report about you having a cyst.

Me: How can that be? It’s shown in every MRI since I was 22. You mean it’s not there anymore? It’s gone? Disappeared? (at this point I’m incredulous, but thinking maybe something miraculous has happened)

Dr.: Let me look at the photos. (I can hear him clicking) Oh there it is. No, I see it. The cyst is still there. Hold on, let me compare it to the last MRI in 2013. (Clicking) They seem to be the same size. No change.

Me: No change? Same size? So why isn’t it on the report that there’s a cyst in my brain? Whoever read the MRI should have noted that. I don’t understand.

Dr.: Don’t worry. I saw it’s fine. No change.

He hurries me off the phone as I sit there with my chin on the floor in astonishment. So I call back and speak to a friend who works in his office and explain it to her. She’s appalled because it should be on the report. She calls the radiologist and asks for a new report with the added cyst information on it.

And so, I have to ask, why do I have to do the job of someone else? And how do I trust anyone to read these reports if this is an example of what happens…has the medical field gone down the drain? How do you miss a big cyst? I just don’t understand. And it’s not like there’s any record of it so that they’d just not write about it.

And you wonder why I’m worried….here’s one example of why….

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19 Responses to Being Your Own Advocate

  1. You poor dear. Yes, we have to be our own best friend in all areas: medical, legal, and relationships of all sorts. It’s a testament to your inner strength that you can be assertive and advocate for yourself. Sending love.

    Liked by 1 person

  2. The V Pub says:

    The state of affairs for medical care is appalling. COVID made it worse.


  3. LA says:

    I know. It sucks to always advocate for ourselves. Thinking of you

    Liked by 1 person

  4. Beth W. says:

    I think things got worse since they were required to have everything on those damn tablets instead of looking at physical charts. I am allergic to aspirin, but ever since they stopped looking at the actual charts, it seems like every time they go in they ask about allergies and seem surprised when I mention my allergy. My coworker went in for hip surgery and has a severe reaction to penicillin. Going through the pre-surgery checklist they were telling her that they would be giving her penicillin after surgery and she told them that she was allergic and the tech seemed surprised and said it wasn’t listed. It is really scary for those who are older or mentally unable to be their own advocate and don’t have a support person to be there for them. There are probably many deaths or incorrect treatments for those people. 😦 I am very glad to hear that the MRI turned out fine. Now hopefully the cardiologist will give you a more hopeful outcome. Continuing to pray and send all my positive thoughts your way! ❀


    • janieleeds says:

      Thank you Beth! I appreciate ether prayers and positive thoughts…I’m sorry that it seems that allergies get lost in the cracks now with technology. How scary, but I’m glad you are able to remember and tell them. Yes, for the elderly, it is frightening…I agree! πŸ’•


  5. E.A. Wickham says:

    At least you have the courage to be your own advocate. My son had severe asthma as a toddler and was always sick. At age five he had an MRI and the tech operating the equipment pointed to a cyst in his brain behind his eye. I didn’t sleep until his appointment with his asthma allergy doctor a few days later. The doctor never mentioned the cyst. Instead he showed us a blocked sinus due to a massive infection that required surgery. I asked about the cyst and the doctor said it was nothing. That to surgically remove it was dangerous but the cyst should never affect my son. The doctor was furious with the tech to be pointing things out to me!


  6. YellowCable says:

    I understand how you felt with how the report was handled. I am glad at the end that nothing has changed. I think that is a good news.


  7. bone&silver says:

    OMG that’s terrible care! Pay attention to the details Dr, for goodness sake. I’m sorry for the extra stress this must have caused you, esp at this time. And massive cheers for your self-advocacy indeed. Sending hugs, G ❀️


  8. hbsuefred says:

    My daughter is almost through med school and has chosen family practice as her field. I’m pretty sure she will pay more attention to those details than most, at least I hope so. Overall, I agree with you that medicine has reached the point, for good or ill, where we can or have to be our own advocate. There is some small medical benefit to be derived from the internet if only in the fact that we can do our own research around many aspects of medical care and treatments. On the ill side, though maybe not too, too bad, is that we are now almost forced to keep track of our entire medical history. As you did, that helps us keep track and enables us to ask questions with some degree of intelligence or at least from a reference point. Again, given that my kid will soon be a doctor, I often point out that we in the general public sometimes expect doctors to be godlike but they’re only human like us. I like to learn and have the time and currently good health to look stuff up. That’s why I looked up the pinial cyst my sister has, discovered through an MRI, as opposed to the perineal cyst which is what she wrote in her message. Talk about having to pay attention to details!


    • janieleeds says:

      Thank goodness your sister has you to help her along the way! It’s hard to do it all on your own as I well know. And congrats to your daughter on being a doctor! How wonderful! That’s great news!!
      I don’t believe the are God-like after all I’ve been through and it’s not to say that I don’t look up to them, but I do it knowing that we are all human and make mistakes but that they know more than me. πŸ™‚ Thank you for sharing!!


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