Skip to content
BACK to Stories

Trying to survive and navigate the health insurance landmine

Published on March 21, 2017 in Share Your Story

I had my first MRI on June 3, 2016 and my meningioma was discovered and it was growing in between both halves of my brain and the pressure was causing minor symptoms at first until finally I started getting more and more symptoms. I was refereed to a neurologist in April 2016 and had to wait about a month to get into see him. When I did I stumped him because I was a healthy 35 year old with these symptoms so he ordered 2 MRI one of the brain and one of the neck both with and without contrast he wante rule out Multiple Sclerosis (MS) and the other to look at my neck. I went in for my MRI after several other appointment and as I was leaving I received a phone call from my neurologist office to see if I could come into the office later that same day, so at that point I knew something was discovered. I had no idea what. I went in and he asked my how my day was going he was my third doctors appointment that day and I told him that and his response was I need to send you to another one. At that point I didn’t know what to think and that is when he pulled up my MRI images and showed my the tumor that was discovered and that there were two scenarios. The first is surgery to remove or the second is go in take a piece for biopsy and then start radiation treatment. Receiving this information on a Friday before you head into the weekend is not something I was expecting to hear. So I didn’t sleep or eat much that weekend.
my neurologist immediately referred me to a neurosurgeon for consultation. I was being wheeled into surgery 3 days later. At my after surgery follow up we were told that he think he got it all but could be 100% sure and we were also given the test results of the grade of the tumor and on a scale one to three mine tested in middle ( 3 being cancerous) meaning it was atypical and fast growing and there was a chance of recurrence we then discussed the next steps and what was going to be my course of action for follow up to watch for recurrence. I was sent for a consultation with a radiation doctor who determined that i didn’t need that service. What was determined between the neurosurgeon and neurologist is follow up MRI to check for tumor recurrence at 3 months, 6 months and then once a year.

My 3 month came back clear in Sept. 2016 and I am now scheduled to have my 6 month follow up however, because we are in a new deductible year with my health insurance and I have not met my deductible under my plan I am required to pay for this testing out of pocket even though it is medically necessary for my diagnosis and I believe it is should be considered preventive care just like a mammogram. Now I am trying to get the insurance company to agree with me under my covered plan and that has not been easy, but something you should know I don’t give up that easily.

Doctors should be the ones telling the insurance companies when someone like myself has this type of diagnosis that this type of follow up is routine and preventive and needs to be approved and covered. I see why people go bankrupt on medical bills since you have to fight the insurance companies to get the care you need covered. I am still paying on my medical bills from my surgery and it looks like if my insurance doesn’t consider this as preventive care I will be paying out of pocket on my MRI as well. we need to do more to hold insurance companies accountable for making almost impossible to get the follow up care we need covered.

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.

Stay Informed & Connected