The Rise and Fall of Herbert

Samira Rajabi first senses the presence of “Herbert” when she is 16. As Rajabi matures, their relationship becomes a struggle, yet Herbert expands his role in her life. She tries to move on, but he is still there in the back of her head, a constant reminder of a relationship gone wrong. Rajabi attempts to make Herbert leave by force, but he won’t go. After 10 years of struggle, Rajabi is taking the last strides to assure Herbert won’t bother her again.

Herbert is not a person, but a brain tumor known as an Acoustic Neuroma (AN). Rajabi discovered Herbert in the fall of 2012.  At this point she had gone through years of headaches, hearing loss, and no depth perception. “They first diagnosed me with migraines,” Rajabi told me over a cup of coffee. “After a bit, my ears started to constantly feel filled with water, so they told me it could be swimmer’s ear.” Rajabi has felt the symptoms from Herbert for a long time, but it was so small it couldn’t be found on an MRI. After eight years of adapting to the way she thought life was going to be, a hearing test determined she was not able to locate sound, and the MRI that followed found the tumor. Rajabi found a name she deemed worth for the unpleasant growth, and thus it became Herbert.

An Acoustic Neuroma, more technically known as a Vestibular Schwannoma, is a non-cancerous tumor slowly growing in the brain at the eight cranial nerve. This nerve is important because it deals with the transmission of sound, as well as balance information. The effects of the tumors growth range from hearing impairment to loss of facial motion, and in an extreme event death.

To date, Rajabi has had five surgeries regarding Herbert. The procedures, life-threatening in their own right, have allowed Rajabi to keep going, and to even say with confidence that she hopes to be done after two more surgeries. Not every procedure has been for the tumor itself, but instead to fix the issues that come from brain surgery. In December of 2012, Rajabi has her first surgery to remove half of Herbert. In May of 2013, with increasing pains all over, she finds out she has a Cerebrospinal fluid (CSF) leak. This leak allows the fluid to flow into Rajabi’s throat, and so she aptly names the leak Flo. The surgery to correct Flo happens that July, and the CSF leak is completely plugged. The plug ends up being an overcorrection to the problem, completely stopping the CSF flow completely. Surgery three solves this issue, and Rajabi is clear to get back with her life. With a 2014 focused on her dissertation and the rest of life, Rajabi has her fourth operation January 8, 2015 to fully remove Herbert. Within the month another CSF leak sends Rajabi to her fifth surgery, forcing doctors to fully plug her ear, completely negating hearing in her right ear.

Initially, finding the right doctor is a challenge itself. Just as everybody has their own opinion on how to save the economy, every doctor has their own opinion on what the right kind of treatment is. Combine this with personality traits, and Rajabi begins to feel uncomfortable around many of the physicians who want to do dangerous procedures to her. One doctor she met with was Robert Breeze, M.D. of CU’s Anschutz hospital, who wanted to use radiation on the tumor. “Do not do that, do not under any circumstances let that happen to you,” Rajabi said to herself. The fear, as well as unknowns with radiation treatment, meant she would have to find a different doctor. “I asked him (Dr. Breeze), ‘if you had to get treated for this who would you go to?’ He age me two names, one was an iranian doctor living in Germany who’s retired, he’s like 90 (years old). The other was a guy who he basically trained, Dr. Spetzler,” Rajabi said. Spetzler is located at the Barrow Neurological Institute in Phoenix, Arizona, part of the St. Joseph’s Hospital. Spetzler became the right choice because of his the number of surgeries he had under his belt, as well as his plan of action to get rid of Herbert.

The strength Rajabi shows is spectacular, mentally and physically. Currently a Ph.D student at CU Boulder, she is taking the semester off before finishing her dissertation, and is instead focusing on health. As a yoga instructor, Rajabi understands the importance of physical health just as well as mental health. During times when it is not too painful, one can likely find Rajabi doing cross fit or yoga, trying to keep her body and mind sound. “The one thing about this illness is, I’m healthy,” Rajabi told me. “I’ve always thought of myself as completely healthy, at least physically, so even though I have this tumor, I’m still fit, and that’s been important to me.”

Herbert has effected much more than just Rajabi’s fatigue and hearing. During this time, it has become easy for many to see her as her diagnosis, as “somebody surviving a brain tumor.” This annoys Rajabi, “It’s my illness to joke about, no one else’s. You know, i’ll stumble over a word, and a friend will make the comment ‘There’s that brain tumor again!’ I know joking is just how people get past what they’re uncomfortable with, but it’s like a ‘your mom’ joke, only I can joke about it.” There is so much else to Rajabi, and so she becomes frustrated when she’s reduced to this one (now removed) part of her.

Despite the interruptions from Herbert, Rajabi still keeps a lot on her plate, working hard to leave this experience behind her. Aside from her doctoral work, Rajabi is also a Senior Fellow at the Center for Media, Religion, and Culture at CU, an instructor, and a Research Assistant.

During an experience like Rajabi’s, a support group is essential. For her, it all started with her family. Rajabi is from a Denver suburb, and has remained living in the area her whole life. Rajabi’s sister, Farrah, is a Pediatric Genetics Fellow at Boston Children’s Hospital, and has been affected by her sisters predicament in her own way. “If anything, my sister and my concern for her helped me see how short sighted being dismissive in this way can be. A benign finding is a big deal if it’s near important structures.  It wasn’t my background as a doctor that makes me nervous, but rather my concern for my sister that made me see the medicine more clearly.” During Samira’s many surgeries, Farrah has taken many red-eye flights just to be there.

Diba Mani, a friend of Rajabi’s in Boulder, sees first-hand how hard Rajabi works. “Aside from problems we deal with on a regular basis- graduate school/student life, romantic relationships and heartbreak, family discrepancies, money… Samira gets a damn tumor, too. It sucks.” But Rajabi keeps on going, taking the time out of her day to also be a great friend to those around her. “The girl is a trouper. She’s got all this on her plate, but has still been there for me, to help me with my own plate, as I know she is for so many other friends!” Mani said.

What makes someone strong? True strength is having the fortitude to keep going, even when things look like they are only going to get worse. The vigor Rajabi shows on a daily basis is impressive. She lives her life normally, and keeps herself busy, despite the threat of head pains. She makes herself constantly available as a part of Safe Space for students, and is also a “mandatory reporter” if she ever hears a student is in danger. Despite her own health issues, Rajabi takes the time to talk to everyone she can and get to know them.

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