I would like to tell you the story of one brave patient, Irina who came to see Dr. James Chandler, co-director of the NBTI, in 2004 after experiencing facial twitching and pain for several months. Her MRI revealed a 5 centimeter tumor.
This was the beginning of Irina’s journey. That first year she required three complex neurosurgical procedures. One involved destabilizing her spine to gain access to the tumor through a transcervical approach. After this procedure she wore a Halo brace for six weeks until she underwent a spinal fusion to stabilize her spine. Since the tumor was very large and access was a challenge, Irina underwent her third surgery four months later. This procedure involved splitting her mandible and Irina underwent a tracheostomy to protect her airway.
Five years later, Irina’s tumor returned and she struggled with symptoms including difficulty talking, swallowing and pain. She undergoes her next procedure, a craniotomy in April of 2009 followed by Gamma knife radiosurgery, a form of focused radiation.
In 2011, the tumor has returned again and Irina underwent a transnasal endoscopic approach, which was followed by Proton Beam therapy in 2012. A year later, Irina experienced double vision and follow-up imaging revealed the tumor returned yet again. Dr. Chandler discussed surgical options with Irina and her husband Ray and explained this was the last surgical intervention he could offer but it was a much different surgery than the one Irina was used to. In the 10 years since Irina had her first surgery, technology had advanced to the point where the tumor could be removed thru a person’s nose, leaving no visible scars. Healing and recovery time were dramatically shorter.
When you meet Irina, she puts on brave front, smiles and says she is doing great. When I recently spoke with her she was waiting for a test and smiling. I took a minute to reflect on her strength and the amount of fortitude it takes to continue to undergo multiple procedures that have so impacted her daily living.
As a health care provider, every day I meet new patients and catch up with our long term survivors at the Northwestern Brain Tumor Institute. They all exhibit such courage and strength as they undergo yet another follow up MRI, office visit or surgery. Patients, like Irina, put on a brave face. They say all is well and smile. Then I ask them again, how are you really doing? For patients like Irina, I know it’s not easy. I want to tell them I understand your journey is not an easy one.
But you are not alone.
--- Mary Ellen Maher, RN MSN, APN
Northwestern Brain Tumor Institute