Founder and CEO Evans Coleman celebrates her 10th-year CRANIOVERSARY! Over the decade, I have undergone 46 MRIs with and without contrast on a 90-day imaging cycle from 2014 to 2019 and every 6 months from 2019 to the current day.
Should I allow the speculative at best, unknown surgical outcomes be the determination of health-related quality-of-life resulting from the nine (9) hour craniotomy to address the Grade 1 Spheno-Orbital Meningioma with Cavernous Sinus involvement, to become a barrier to what I considered a very vibrant preoperative life? Or take a more direct approach to seek ways to rid me of the debilitating postoperative symptoms that occurred from the in-depth surgical procedures that included, plastic and reconstruction surgery to put my head and face back together after the removal of one-quarter of the right side of my skull (replaced with titanium mesh), the reconstruction of my upper eye socket ( the insertion of a biomedical-engineered PEEK implant), a frontalis sling (an oculoplastic implant procedure) to remedy the severe ptosis of the eyelid to a sightless/blind right eye (a surgical error) and concluding with a grafting procedure to halt the hallowing (sunken right temporal area with implants) caused by the temporalis muscle atrophying?
While the physical changes endured were unavoidable with the election of invasive medical treatment protocols, my health-related quality-of-life was forever changed without the guidance, assistance, or support of the individuals who were contributors to these life changes. Working solo for the first postoperative 5 years, I created, using my healthcare practitioner and scholarly knowledge, training, and skills, a dearth of formidable strategies and approaches that restored some of the psycho-social functioning that has slowly improved my health-related quality-of-life. Yet other skill sets will be forever lost (as outlined in the findings of my postoperative neuropsychological examination), resulting from the lack of focused collaborative care teams' treatment/service plans, and preoperative health-related quality-of-life baseline assessments needed as a contrast to the assured occurrence of postoperative sequelae (severe effects of treatments). Focused attention is needed on the improvement of existing "hit/miss" medical treatment options for this brain disease, and equally important, the lack of medical or healthcare interests in conducting substantive health-related quality-of-life empirical research on meningioma brain tumors surgical outcomes and the target population it mainly affects (i.e. women).
Lastly, with the founding of Meningioma Brain Tumor Network, Inc., the resounding leadership of its Board of Directors, Collaborators, Advisors, and committed Donors, our work is continuing to make strides in collecting, sharing, and reporting the many stories, testimonials, and personal inquiries of meningioma brain tumor survivor-thrivers, while creating structured individually crafted pathways used to navigate the challenges of improving our health-related quality-of-life.
Comments