This is not the first time that I have experienced such medical dismissiveness. I realize that this medical gaslighting did not start happening until I became an older woman. See this past post. (And yes, I do acknowledge that I seem to often have medical emergencies. What can I say? I live with an auto immune illness that wreaks havoc on my body).
I remember when my mother had lung cancer and she kept getting misdiagnosed as having allergies or suffering the effects of a chest impact from a mild car accident. I kept taking her to emergency rooms and physicians for chest pain. Once when we were leaving an ER without any medication or referral, my mother turned to me and said "they just see me as an old immigrant woman; that is why they don't take me serious". She was right; and by the time they made the cancer diagnosis, it was beyond hope and she had suffered tremendous pain needlessly for nine months. Learning from this, I guess doctors just see me as an older, brown, overweight woman. All categories that get dismissed in our society.
Like most women, I have found it difficult to stand up to "professionals"- people in professions that our culture tell us are experts. We were taught that respect=smiling acceptance. We were taught not to rock the boat. This definitely applies to physicians. But this latest episode of medical dismissiveness nearly cost me my life, so I am definitely going to speak out.
I have been pondering what action I would take regarding the first neurologist I saw. His final diagnosis was that I simply had neuropathy in my upper and lower extremities and all my other concerns could be explained as the result of having RA. Never mind that my rheumatologist had been the one to say my lack of balance was not RA related and he referred me to this neurologist. I remember that I brought a friend to that appointment and even he was shocked at how casual this neurologist was in my appointment. It was even in his posture: the doctor sat slouched, one leg extended and one hand propped up his head. It seemed as if he was tired and maybe even bored with our discussion.
So I have decided that I will write that doctor and tell him about my recent emergency hospitalization and surgery. I want him to hear that 11 days after he dismissed me I ended up almost paralyzed. I am posting here the letter I am sending him. I do this for two reasons. The first is purely personal. Speaking up and telling a doctor that he was wrong is hard for me so I am doing so publicly as an act of empowerment. Secondly, I hope this inspires someone who may be experiencing the same to speak up for themselves.
Dear Dr X,
I first came to you on June 26, 2024 for balance impairment and possible carpal tunnel consult. You ordered upper and lower extremity testing and consults with a hand specialist and a brain neurologist specialist. I came back to go over the results, July 25, 2024 but it turned out the MRI done on my brain was not inclusive of the one you needed so you ordered another brain MRI and I did not come back for all my results until August 15, 2024.
I remember telling you how my hands were not functional. My fingers were numb and I had burning in my thumb and second finger. I felt crushing pain and rigidity up my forearms. My walking was very problematic and and I was falling fairly regularly. I had to use a walker. Your conclusion was that I had carpal tunnel causing my hand problems and the effects of rheumatoid arthritis was causing the rest. You did mention that perhaps I might consider getting spinal MRIs in the fall/ winter.
I was stunned by your conclusion as I knew something was terribly wrong with me, and it was not just from my RA, which I had been living with for years and felt I knew well the symptoms. Also, my rheumatologist had referred me to you in the first place because he said my loss of balance was not related to my RA. I did not feel carpal tunnel explained the muscle crushing pain and rigidity up my arm. When I asked you why I was falling, you replied "maybe you have an inner ear infection; perhaps you'll want to consult an ENT”. I was very disappointed and felt you were not taking me seriously.
I want to tell you what has happened to me since our last visit in the hope that it will lead you to reevaluate what I feel were dismissals of my symptoms and concerns.
I left your office dejected. I felt I was on a runaway train that was going to crash and nobody was helping me. My physical decline was happening so quickly that I feared what my condition would be by January 2025. I sought a second neurological opinion.
August 26, 2024, 11 days after my final consultation with you, I had a consultation with another neurologist. Upon an extensive physical examination, she summarized in her notes ”On neurological exam, patient has impaired proprioception and vibration on bilateral feet and hands, positive romberg and Lhermitte sign positive. Given the symptoms, gait abnormality could be multifactorial due to sensory neuropathy and spinal spondylosis due to RA. Will obtain MRI cervical and thoracic to rule out any structural/demyelinating causes.”
I had my cervical and lumbar MRIs on September 16, 2024 and my thoracic MRI on September 17, 2024. On September 18, 2024, I received a message from the ordering neurologist “Hi Deborah, the MRI of your spine shows compression of your spinal cord. I recommend you go to the ED for urgent evaluation by neurosurgery.”
This ER visit on September 18, 2024 resulted in emergency hospitalization and spinal surgery. The neurologists and neurosurgeons all said it was a miracle that I came in that night; that if I had jerked my neck in anyway, I would've been paralyzed. They said my symptoms showed severe myelopathy and questioned why I had not sought help earlier!
I ended up having spinal surgery: ACDF of C3 and C4, corpectomy of C4 and ACDF of C4 and C5. The neurosurgeon says my spinal cord has been harmed, and I am left not knowing if any of my impairments will be reversed.
As I mentioned earlier, I am writing you this letter to highlight what I hope was a rare lapse in
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