Letter to the Doctor who Did My First Brain Surgery

Dear Doctor,

We are just two months short of two years since my surgery with you. That day, June 20th, 2022, was the day when my life would change forever. Not a single day has passed in these two years where I haven't grappled with what transpired and why it unfolded as it did.

Remember the first appointment I ever had with you? When I asked you to refer me for a second opinion? Your answer was that I am going to get that anyway because you will show my case to your esteemed colleagues and discuss it. You said that my case is complicated and not a standard Chiari Malformation.

I was not really satisfied with that answer. That is why I had my family doctor send out referrals to two more neurosurgeons who ultimately rejected to provide me with a second opinion.

The first rejection said that the doctor has a two year waiting list and is not providing second opinions. His secretary also messed with my head by telling me that you are the head of the department and I am in good hands with you. The second referral sent out by my family doctor was also rejected and the reply read that generally surgery is indicated in circumstances like mine but the doctor cannot see me as they also have a wait list.

You offered to operate fast, in two months. You seemed confident, you insisted on your offer to treat me. You led me to believe that there were greater benefits in stopping the progression of disease fast as opposed to waiting or not doing anything. I trusted you.

But you let me down. Not only did you have no explanation for why I ended up in ICU after your surgery, until November 2022 (six months after my surgery) when you finally reluctantly confessed during our appointment that post-operative complications were due to neurological damage during surgery. But also, more importantly, you missed my brain tumour on the March 2022 MRI scan. I would have never done surgery with you had I known I had rare brain cancer too. When my mom asked you why you missed the brain tumour, your answer was dumbfounding to me. It lacked accountability. It lacked sympathy. It lacked compassion. It was, "well the radiologist gets paid to look at scans, I don't get paid to look at scans...". It made me wonder where your basic human decency was. I don't think my snap reaction would be to say... that... under any circumstances.

As I rehashed everything in my head, I kept on wondering why you didn't just take a pause and think about supporting my application for Out-of-Country funding so that I could get the expert team I actually needed after your disaster surgery? I don't have to be a doctor to know that you had no idea what to do.

In November 2022 you told me that I don't need any more treatment from you other than the brain cancer part by another neurosurgeon. You said my December MRI results will show either that my syrinx stayed the same and your decompression surgery didn't work, or it got smaller and your decompression did work. Literally, a month later, my MRI results are that your surgery made my syrinx worse, the compression in my brain worse and you were trying to book me for surgery in January? How many epic failures do you need to see before you are convinced that I am better off getting treatment from someone else? When do you realize that the person who predicted this MRI result before it came in, actually knows, from experience, what would happen.

I don't blame you for the surgery you did on June 20th, 2022. As much as I should, I think you did not know what you were getting yourself into and you did your best not to cause neurological damage. But I blame you for everything you did after that. I blame you for everything you said after that. All the pain you brought to me and my family with your ignorance and delusions of grandiosity, that I blame you for. You could have helped me. You could have saved me. But instead, you choose to lie, manipulate and get defensive. You got scared. Shame on you. You have a whole country of doctors with the same employer to back you up. I am one person and I am the one who had to stand up against you.

As I pen this letter, I am reminded of the profound power imbalances inherent in the doctor-patient dynamic. Despite facing overwhelming odds, I refuse to be silenced or sidelined. Your actions may have cast a shadow over my journey, but they will not define its outcome.

Sincerely,

Khrystyna Naydan

#chiari #braincancer #trustyourdoctor #khrystynanaydan #neurosurgery #memoirtrustyourdoctor