The Story of Jeff Henigson2 minute read

Steven Kornweiss, MD diagnosis, medicine, patient education Leave a Comment

Jeff Henigson was diagnosed with brain cancer at the age of fifteen. He was told the cancer would kill him within a few years. Thirty-five years later, Jeff’s miraculous and fascinating survival story was published online. After his story became public, he was contacted by a neuropathologist.

Here is part of their conversation as reported in The Washington Post:

“I felt compelled to reach out because it is simply so unusual that you survived anaplastic astrocytoma.”

“So I’ve been told.” I’d seen dozens of neurologists over the years at some of the top medical institutions on both U.S. coasts. They had all said essentially the same thing. The average life expectancy for a brain tumor like mine was two to three years.

“And yet despite this being extraordinary, you nevertheless believe that this is what you have managed to survive?”

My head jerked back. “Excuse me?”

“I am asking you.”

I was close to hanging up. “What exactly are you asking me?” I said.

“I am sorry. I am perhaps not clear. English is not my first language.” He paused. “May I share a story with you?”

I sighed and rolled my eyes. “Tell me your story.”

I highly recommend reading the article in full.

When you’re done reading the article, you’re going to feel compelled to get your hands on your own medical records.

How to Get Your Own Records

If you go to a doctor, lab, hospital, or imaging center, you can and should request your records in full including all results, physician and nursing notes, and imaging on disc. You may have to physically find the health information management department, medical records department, or radiology library. Many hospitals will now be providing easy digital access to physician and nursing notes due to a new government mandated initiative called “open notes.” This should make it easier for you to review your physician’s notes without having to track down your records via faxes and snail mail.

Third-Party Medical Record Retrieval and Digitization Service

I’m testing a new service from a company called PicnicHealth. Their web service will collect, digitize, and tabulate all of your medical records, labs, and imaging. After you sign a release form, pay $300, and submit the names of the hospitals, labs, and doctors that you’ve visited in the past, PicnicHealth’s team will track down and digitize your records within 4-6 weeks. For $39/month, they’ll keep your records up to date.

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