My Resistance to Surgery

My Resistance to Surgery

Dr. Klest, thank you for seeing. Dr. Gerritz suggested surgery on my hips may enable me to sit upright without slipping thus reducing pain, discomfort, and sores I now get on my lower back. Knowing how busy surgeons are and since I have a significant speech impairment, here is a brief description of who I am and my resistance to surgery.

Born in 1952, I have significant disabilities due to Cerebral Palsy. Since starting grad school at U.C. Berkeley, I use a powered wheelchair. I've always had a speech impairment that has degraded in recent years. Before my spine began to compress in 2009, I performed all my activities of daily living (ADL) independently. I drove vans. I traveled alone throughout the U.S. for my Wells Fargo job, my advocacy work, and vacations. My wife, Denise, also has Cerebral Palsy. We live in our home. We adopted and raised a son since he was 3 months old in 1987. We only used personal assistant services for cooking, cleaning, and assistance with our baby. Now I use personal assistant services for feeding, dressing, transferring, transportation, etc.

My inability to sit upright has always been and continues to be problematic. As I child, I vividly remember my Mom yelling, “sit up straight.” During my high school and undergrad years, I propelled my manual by hooking my left arm over the wheelchair's handlebars and kicking backward. I drove powered wheelchairs by again hooking my left arm over the wheelchair's handlebars and steering with my right hand. In hindsight, my poor posture was probably a significant contributor to many of the physical problems I am now experiencing. However, given the freedom and independence I had, there are no regrets.

I've always been fortunate not to have pain. I don't deal with pain well. In 2011 doctors suggested cervical surgery to delay spinal compression. Denise and I researched the ramifications of that surgery. I decided against that procedure consciously choosing eventual paralysis and loss of functions over possible pain. I admit the paralysis came quicker than I anticipated with more discomfort than I expected. However, I continue to be extremely thankful for being drug-free and able to take advantage of my cognition. I am also very grateful for the assistance I receive from great attendants. With help from a very resourceful neighbor, we have been able to make incredible adaptations to my wheelchair that minimize my discomfort. I am amazed at how changes measured in fractions of inches or degrees can determine the difference between pain and no pain. All adaptations we fabricate are reversible, ensuring that I am always able to return to a known state.

I realize orthopedic surgery is not as dangerous as spinal surgery. However, knowing how sensitive to the pain I am, and knowing that no one is certain as to how my Cerebral Palsy really affects my sitting ability, and knowing that surgery is irreversible, leaves me very skeptical.

After 29 years of working at Wells Fargo, I retired as a Sr. Vice President to start a disability-focused employment company that specializes in consulting on staffing and placement issues. I quickly realized that there are systemic problems that intrinsically inhibit people with disabilities from working and being productive. Our society holds very low expectations for individuals with disabilities. Defining disability as the “inability to work”to receive disability benefits is an inherent disincentive. I am dedicating the rest of my retirement to see that these old policies are changed. I am doing so by working with The World Institute on Disability where I am leading an initiative called CareerACCESS. As of June 1st, I plan to contract with Wells Fargo part-time, assisting them in developing a Disability Financial Management App. I much rather focus on these tasks than working on recovering from surgery.

I promised Denise and my friends to keep an open mind when we meet. I'd appreciate knowing how many times you've performed the procedure on people my age with my degree of Cerebral Palsy. What were the goals and outcomes? What was the people's recovery experience? Would they do it again?
I look forward to your analysis and recommendations.