Brain Injury and Self-Advocacy Succeeds Again by Amanda Nachman

Brain Injury and Self-Advocacy Succeeds Again 

by Amanda Nachman

In almost everything I have written, I have referred to the importance of advocacy.  Whether it is yourself, or someone advocating for you, time has shown me over and over again why it is so important.  I recently completed my book, Who Am I Again?  At the end of my book, I noted that I was working with a major clinic in southeastern Minnesota where I began with hope, lost it, and now thanks to self-advocacy, I am filled with hope for results there once again.  Here is my story…

 Really?!

 My husband and I were very optimistic about our trip down to Rochester, MN.  We had what is known  as a false sense of security.  Why shouldn’t we have felt confident?  We were going to the best.  I had been referred down there to see a neurologist for my brain injury, and a neurosurgeon for my back.  My first appointment was scheduled at the spine clinic.  We did not meet with a neurosurgeon, but with a resident, and a spine doctor who does not perform surgery.  After a lengthy appointment with the resident, and a very brief appointment with the resident, I was referred to neurology, not for my MTBI, but for my leg weakness.  I had an EMG (Electromyogram) the next day, and was scheduled to meet with a neurologist a couple of weeks later.  We could, however, stick around and go on stand-by to try and get in that day.  When we approached the counter to be sure I would meet with a neurologist who specialized in brain injuries, we were told that all of their neurologists were qualified to work with people who had brain injuries.  We found this puzzling since we knew that neurologists usually specialize in specific areas.  As a former schoolteacher, I would never claim to be an expert at elementary school Spanish, just because I know how to teach elementary school.  That was how ridiculous our next appointment was.

 What?!

 We did not get in to see the neurologist that day, but were scheduled to see one the next day.  Against our better judgment, we went through with the appointment, even though this neurologists’ area of study is infectious diseases related to neurology.  Under our cloud of illusion, we thought he would refer us to someone who specialized in my injured areas.  We were wrong.
I will not go in to all of the details of my appointment with the highly arrogant, dismissive doctor, or the phone call that followed from my spine doctor, but I will share with you what I had to do once again, to get the appropriate care that I needed.
Although my MRI is not normal, and my EMG is not normal, and my symptoms from my brain injury are not gone, he told me there was nothing wrong.  The spine doctor told me there was nothing she could do, but refer me to physical therapy to learn how to improve my walk.  Are you kidding me?!

  Where Self-Advocacy Matters

 I knew/know that they were not correct, but if I didn’t say anything, I would never get the help I needed. We requested that the neurologist get a second opinion on my MRI.  Upon having it read by someone experienced, they confirmed the problem areas that the prior physicians had documented all along, so he requested further testing.  He was wrong.
Upon receiving a call from the spine doctor’s nurse, she reported that according to the lab report, my EMG was not normal, but showed mild paroneal neuropathy.  He had been wrong once again. This whole experience prompted a call to patient affairs where we discussed the behaviors of the doctors, and they informed me that he was not given orders to examine me for my brain injury, and that it was not appropriate that he had.  What we hadn’t known prior to this phone call, was that my initial referral to see a brain injury specialist had been overlooked by the clinic.  It would have not been addressed had I not brought it up.  I called my doctor right away who had her clinic re-send the referral.  I also received an apology from the spine clinic doctor for being dismissive. However, we were told we would have to follow-up with the arrogant doctor because he had ordered the new MRI; which we learned is not FDA approved, but it is what they use.
This time we were prepared for him, and we spoke directly to the doctor about his dismissive and inappropriate behavior.  I told him I came there to give him a chance to apologize, and he did.  He also admitted that his specialty was not backs or brain injuries, that he is just a general neurologist.  He told us that he would be happy to refer us to specialists in these areas.  Why hadn’t he just said that from the very beginning?  I said that he didn’t need to refer me because I had already taken care of it.  When I spoke to patient affairs again, and the wonderful nurse at the spine clinic down there, we made arrangements for me to see a neurospine doctor, and an MD who specializes in working with patients who have had brain injuries.
I spoke up for myself, I made many phone calls, and found a dedicated nurse to help advocate for me.  I will finally get to work with a doctor experienced in MTBI’s, and my hope has been restored that I will get a resolution and someday be out of pain.  Advocacy works!

3 responses to “Brain Injury and Self-Advocacy Succeeds Again by Amanda Nachman”

  1. Marilyn Lash says:

    Being your own best advocate is indeed a very tough job. The dilemma often is that just when self-advocacy is so important is also the time that individuals are under great stress, often in pain, and struggling to navigate the complex medical system. Then you add in the fact that “patients” traditionally have a dependent role wherein challenging and questioning specialists is not expected nor encouraged. I congratulate you for your persistence and courage to assert your needs.

  2. Amanda says:

    Thank you Janet. I am making advocacy my mission due to my experience. I appreciate your feedback!

  3. Janet Cromer says:

    Hi Amanda,
    Kudos to you for advocating for yourself through such arrogant and wasteful visits. You point out common problems in our health care system, and I shudder to think what happens to people who do not have an advocate. I hope the new referrals lead you to effective treatment.

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