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This story is from the Anamnesis episode called Rx for Reality: Clinicians Confront Medical Gaslighting at 3:58 in the podcast. It's from Ilene S. Ruhoy, MD, PhD, a neurologist and medical director of the Chiari EDS Center at Mount Sinai South Nassau in New York. She is also in private practice in Seattle.
As I sit with a wired mask across my face, and bolted to the cold steel table beneath me, watching the arm of the CyberKnife system robotically move around my head, delivering beams of radiation, I try hard not to move.
And I try hard to make myself focus on something other than my anxiety, my fear, and my anger.
My anxiety over my future of playing Whack-a-Mole with these tumors, my fear surrounding the delayed and terrifying effects of repeated, albeit focal, radiation therapy and repeated craniotomies. And my anger, because if only someone had listened to me, or if only I had stood my ground, perhaps I would not be here.
I spent some of 2014 and much of 2015 trying to convince doctors that I knew something was wrong. I wasn't feeling well, having weird headaches, and strange sensory events. And it was getting worse. My body wasn't behaving as it used to, and my energy was sapped. I couldn't tolerate temperature changes, felt sensitive to light and to sound, and felt like I wanted to jump out of my skin.
All Exams Were 'Normal'
But my neurological examination was normal. My labs were normal. And I did not have any objective event, such as a seizure or a syncopal episode, for the neurologists I was seeing to take anything seriously. I had a history of migraines, albeit one to two times per year, so my headache complaint, despite the increase in frequency and severity, was attributed to that. I asked for an MRI but was told I was working too hard, I knew too much, and I was anxious.
I also saw an ENT who did not think an MRI was indicated, but did a CT scan of my sinuses, decided it was a chronic sinus infection, even though I had no sinus history or symptoms, prescribed me antibiotics, which just made me sicker. I discontinued the antibiotics and cried to an internist who promptly ordered an MRI. In the words of this internist: "When a neurologist asks for an MRI, you order an MRI."
After the MRI, I was told to go directly to the ER, do not pass go. I was not given any information as to the results of the scan. My husband met me in the ER, the ER physician came in with the images on the screen, and my breath caught, my legs went weak. The image revealed the 7-cm tumor in my left frontal lobe, parafalcine, with extensive edema, causing a midline shift and threatening uncal herniation.
The ER physician called neurosurgery and the neurosurgeon came down to discuss the urgent resection surgery now planned. On the exam done in the ER, the only deficit was papilledema. It occurred to me then that none of the doctors I had seen had looked me in the eyes.
One More Night at Home
Though I was to be admitted immediately, I asked to be allowed to return the next day. I had to speak to my then-11-year-old daughter. My neurosurgeon, thankfully, understood, and while he was not thrilled with the idea, he agreed one more night at home would likely be okay.
At 11, my daughter had limited understanding and limited perspective. I was terrified of not making it through surgery and being unable to tell her all that I had hoped to share. I decided to write a letter of all the lessons and sentiments I hoped to share with her throughout her life. If I did not make it home, my husband was given instructions to give her the letter to read.
Some excerpts from the long letter include:
You are a bright light with a lot to offer this world and nothing would make me prouder than for you to live as you are today. Kind, generous, authentic, happy, and compassionate. Life can be hard, but we show up. If we can show up for the easy parts, we can show up for the hard parts. Having you was by far the greatest joy of my life and for that, I am grateful. Never stop being curious. Almost everything is so much more interesting when you go beneath its surface.
The surgery was 7 hours long. Because it took so long to get the diagnosis, the tumor grew into my brain. The grade 3 meningioma had to be scraped from my brain, and the anterior portion of my sagittal sinus had to be removed.
After the surgery was over, I remember waking up to the sound of nurses screaming at me, "Ilene, where are you?" over and over again. I struggled to remember the name of the hospital while they continued to yell. All I could think of was the name of the hospital where I had done my training. But they kept shaking me and yelling at me to tell them where I was. Not a fun way to wake from brain surgery.
My recovery was long and brutal. I was not given strong-enough pain medications immediately post-op in the hospital. The extent of the pain was beyond what I imagined a human could endure. I was in such severe pain, that I could not help but feel like I just did not want to be alive anymore. It was a level of pain that affects you at your core, and changes all you feel grateful for. I did not feel my usual connection and love from my family. I just wanted to die.
My husband begged the staff to give me opiates, but the policies of the hospital prevented appropriate treatment of postoperative patients. After speaking to my neurosurgeon, my husband was able to convince him to give me medication. And when they did, I started to return to myself and found my will to live.
After 4 days, I was discharged home and thus began my recovery on my own terms. I had regular surveillance scans every 3 months, all with contrast, and probably as should have been expected, I had recurrence in 2017 and underwent CyberKnife.
A Lifelong Battle
My radiation oncologist counseled that because of the extent of the initial tumor, this was going to be a lifelong battle. In 2021, there were other small tumors along the meninges that were identified. They were small, so we decided to watch and wait. But by 2022, three of them were growing at a rate too fast for comfort and I was scheduled for a second round of CyberKnife radiation.
Now I am back to the present, suffering tremendous anxiety over what will happen next. I often worry about becoming a burden to my family and friends. I often worry that patients would not want a neurologist with brain tumors. While I lay here for my second round of radiation, I think "How is it that I, a neurologist, was somehow not believed or taken seriously? And if I, a neurologist, had this experience, what chance do non-physicians have when trying to seek care?"
Further, I know I am not the only physician with this story. I have spoken to many who have had similar disappointments in the healthcare system. When did we stop listening and believing the patient?
Check out the other stories from the Rx for Reality: Clinicians Confront Medical Gaslighting episode , including "Putting Together the Puzzle Pieces of Self-Compassion" and "Unmasking a Nurse's Journey Through Long COVID Gaslighting."
Want to share your story? Read the Anamnesis Storyteller Tip Sheet and send us an email at anamnesis@medpagetoday.com.