my cancer

What they don’t tell you

its-okay

Nancy, who writes an amazing blog Nancy’s Point titled a recent post “When Doctors Seem Dismissive,” while Dr. Leana Wen contributed a post titled “6 tips for getting your doctor to listen to you.” I found it interesting that both posts were published shortly after I met with my new neurologist on Tuesday. Partially because I left my previous neuro for being dismissive (I Only Do Brains) and not listening to my concerns. After two more seizures, Dr. Brains upped my meds and sent me on my way to return in three months. It’s okay!

This has been a continual theme with my doctors I left the hospital after my first major seizure. The only instructions I got were to continue my WBR therapy and come back if I had another seizure, but otherwise I should just rest. When I finished radiation therapy it was the same thing, look out for seizures, rest, and they’d see me in two months for an MRI to see how the treatment was working. It’s okay!

Two months later, I had another MRI and my radiation onco was thrilled with the first look at the films because it looked like the lesions were gone. High Five! He said if there was anything left, the radiation would keep working. Then he ushered us out to the lobby to schedule an appointment in three months. Followed up with Dr. I only do brains who said he only cared if I had another seizure and I should come back in three months. When I had my second and third seizures, he upped my medication and spent the rest of the appointment musing about whether they really were seizures? Sleep apnea? I finally said “You tell me! My doctorate’s in art history not neuroscience!” He said when I come back in three months we’ll try some tests. It’s okay?

On Tuesday I finally saw the new neurologist. After discussing my history and testing my strength and reflexes, he explained what had been happening to me. All the little aphasias and blank moments, the shaking episodes and periodic weakness were all mini seizures caused the the remaining lesions in my brain. Yes, that’s what I said, remaining lesions. He showed me the radiologist’s final report on the last MRI and there were quite a few little lesions remaining, a number of which are close to Braca’s Area of my brain. (The red area in the picture)
brocas_area
This is likely the reason for my problems with words and speech, which I learned were tiny seizures and have been happening almost every day. To try to get them under control, he upped my anti-seizure meds (again) and wants to see me in …..three months.

At least now I know that what I’ve been experiencing has a cause, but I’ll never let anyone just pat me on the head and say it’s okay.

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12 thoughts on “What they don’t tell you

  1. Being treated so dismissively was deplorable, not to mention, just plain wrong. I’m so glad you made the switch. And thanks for the kind words and link.

  2. Doctors not doing their jobs should not be paid. Would anyone pay for service to a car, that once completed, the car still exhibited the same problems? Why are we ok challenging the mechanic, when replacing a car is much easier than replacing (my) life, but we hand doctors all this power and don’t deny payment when they provide such shoddy service?
    Why is this medical industry (in the US at least) so f’ed up?

    • I think the problem is with the authority dynamic behind doctor/patient interaction. We ask for their care and they endow or deny it from on high. I never insist on my students calling me Dr. Warwick in my classes (they usually call me Acacia), but I’ve never met a physician who gave me the option of calling them by their first names. Ever.

  3. dear acacia,

    in this day and age when we keep hearing that quality care means “partnering up” with our doctors, your experience with dr. (no) brains is deplorable. to find out the news about “remaining lesions” must have felt devastating – but thank goodness you are in better hands now. i am so sorry for all that you have been through and can only imagine how it’s affected your sense of trust.

    i will keep you close to my heart, and hope that the meds being upped will give you relief from the seizure activity.

    love, XOXO,

    karen, TC

    • Dear Karen,
      So far, so good as far as the seizure meds are going. Finding out that there were lesions left is scary, but its also validation for the aphasia and “blank” mini-seizures. Before, I was wondering if I was a hypochondriac or something.

  4. Realizing your doc is an asshole is empowering (yet very frustrating). I’ve had a few “come to Jesus” conversations with my docs in which I remind them that I have neither time, energy, or resources to deal with their assholery. After one such conversation, the nurse said that in 20 years she had never heard a patient talk to the doctor that way. One of the most sobering lessons I’ve learned along the cancer journey is that the white coat does not equal omnipotence.

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