Samira Rajabi was diagnosed with a vestibular schwannoma, also known as an acoustic neuroma in 2012. She has had ten surgeries to deal with her tumor and its various side effects. She writes a blog about her life, surgeries, recovery and experiences at LivingWithHerbert.com. She is currently a post-doctoral fellow at the Center for Advanced Research in Global Communication at the University of Pennsylvania, where she studies media studies. In her spare time she plays with her two pups and spends time with her husband exploring Philadelphia.
Health care shouldn't be a fight, but it is. I tell my story of fighting for an MRI in a hope that I illuminate the cracks in our system in a hope we can make change, so no one falls through those cracks.
I have a tumor in my brain. I've known about it since 2012 when I lost my balance and fell on my way to one of my graduate school classes one day. After a battery of tests to figure out what was going on with my balance, I discovered I had an acoustic neuroma or vestibular schwannoma. I was told that it was big compared to most others, and I was younger than the average patient with this type of tumor. I had the tumor partially resected in December of 2012. My surgery was long, and the recovery was difficult. After my surgery, I got a spinal fluid leak because of the combination of the location of my tumor, the type of surgery and my anatomy. In the summer of 2013, I went back to the operating room for my second brain surgery. If one brain surgery felt big, two almost felt like an achievement in endurance.
Just a year and a half after the second brain surgery to fix the leak, an MRI found that the tumor had grown. I had more surgery to remove what was left of the tumor in January of 2015. That surgery left a host of complications, including the return of my dreaded spinal fluid leak.
Since 2015, I have had eight more craniotomies, bringing my total number of brain surgeries to 10. The spot on the MRI where my tumor was continues to light up on scans, and the measurements of the tumor vary, so it is important to keep an eye on it. I do so with bi-annual MRIs — or at least I used to.
Currently, though I pay for the best insurance my job makes available for me through a big company, I am unable to get my MRI approved. When insurance wouldn't pay for bi-annual MRIs, my doctor and I agreed that I would likely be OK doing the scans on a yearly basis.
My last MRI was in August of 2017. In August of this year, my doctor requested the MRI, and I scheduled it. The days leading up to an MRI are not some of my favorite. The stress of recurrence combined with the sense of dread of spending several hours of my day in a hospital, never mind the logistics of changing my schedule and my partner's schedule around to accommodate the MRI, means I don't sleep very well leading up to my scans. Between the day that I scheduled the MRI to the day it was supposed to be, my anxiety and heart rate slowly rose. The day before the scan, I got a call from the hospital, I felt as though my heart dropped straight through to my ankles. Even though I hadn't even had the scan, I lamented whatever news the voice on the other side of the phone held.
"Mrs. Rajabi, did you get the message from your doctor about your MRI?" said the voice.
"I'm sorry, ma'am, I didn't, the MRI isn't until tomorrow." I said.
"Oh honey, I'm so sorry no one told you, insurance won't pay for your MRI, your claim has been denied."
My heart sank further. I asked what I could do and what I should do. I was told the doctor was already doing a peer-to-peer review, that this must be a mistake and another MRI was scheduled for two weeks from that day. I pulled out my headphones and sat quietly in my cubicle trying to do a meditation off my favorite meditation app, Buddhify. I couldn't focus, but I spent the next two weeks trying to find some zen.
Once again, the day before my MRI, I got a call from the hospital rep, she was sorry, she told me, but she couldn't let me come in, the claim had been denied for a second time. I reached out to my doctor's office and the insurance company. The insurance company offered me little information, but my doctor said that it should be approved in a few days. We scheduled and then cancelled another MRI for the following week.
It is now November. It has now been 15 months since my last MRI. As I sit here at my desk and type this, I try not to think about the fact that my tumor could be slowly filling the space between what used to be my inner ear and my brainstem, a space whose structures have now been overtaken by fat grafts and bone cement. I try not to read into every drip out of my nose (the most telling sign of a CSF leak) and I try to convince myself that, "maybe it is just allergies."
I tell myself my fears are irrational so that I can push them away and not worry about an MRI it appears I cannot get. I tell myself I am being paranoid about my tumor. I gaslight myself because of an insurance company's refusal to give me an MRI, claiming I do not need one for five to 10 years, despite multiple doctors informing me that my scans should be done at least yearly. I allow their refusal to give me the care I need make me feel crazy for worrying.
But I am not crazy. It is not irrational for a person who has had a tumor, recurrence and still has the remnants of said tumor to worry it could grow. It is not irrational to ask the company who gets a giant cut of my paycheck every month to give me the care I deserve. And It is not irrational to want to be taken seriously in my concerns.
My doctor is again helping me contest the denial; if this claim does not go through, the insurance company has informed me, I can take them to court. I cannot pay for an MRI out of pocket, nor should I have to. In fact, I shouldn't be here now, writing about this. Getting my care when I have insurance, have a documented condition that needs monitoring, and have a doctor ordering a test, should not take this much leg work. Not for me, not for anyone.
I refuse to let the American health care system make me feel crazy anymore. Instead, I am channeling the frustration I feel into a kind of productive rage. I recently started reading a great book by Soraya Chemaly called, Rage Becomes Her. In the book, Chemaly argues that, "anger is an assertion of rights and worth. It is communication, equality, and knowledge. It is intimacy, acceptance, fearlessness, embodiment, revolt, and reconciliation….In anger, whether you like it or not, there is truth….Anger is the demand of accountability, It is evaluation, judgment, and refutation." I plan on letting my rage speak for me and fighting until I get my care. I will hold my insurance company accountable.
I am lucky that my condition is not so urgent that I can go through the arduous process of getting my care covered. Not everyone with tumors or cancers or other conditions has that luxury. I know that, and sadly, I am willing to bet the insurance companies know that too. I want to hold these companies accountable, to fight back so that not just I receive my care, but so those who don't have the luxury of time or the resources to fight get their care too.
To all those who struggle to advocate themselves with a broken medical system, I see you, I am with you, and I walk alongside you. In anger there is truth — so let's let the truth speak for us. Let's fight back, together.
I intend to get my MRI.