What To Do When Considering Risky Surgery
I’ve been stuck in a quandary for six months trying to figure out what is best — say yes to a complicated surgery or do nothing and hope that subsequent infections will not happen. Normally, it would be an easy decision: do the surgery and get it over with. But this is not just any surgery. My surgeon tells me there is a 30-50% chance that the surgery could fail, and I could possibly end up worse off than I am now — a scary dilemma. What do I do?
My surgeon thinks my age (78) and medical history (numerous skin breakdowns plus poor blood circulation) could complicate healing following a complicated urethro-scrotal operation, which would also include reconstructive flap surgery. Plus, there is one more potential complication: the location of the major incision — my perineum (center pelvic). Because both of my ischial tuberosities (sits bones) have been shaved down in previous operations, my perineum will bear most of my weight when I’m sitting.
The surgery itself, she says, is not the problem. I am the problem.
Why? My medical chart does classify me as a high-risk patient. That is how the surgeon arrived at her opinion. But is her view biased? Is her opinion negatively skewed by an overly complicated medical chart and her lack of knowledge about spinal cord injury and my everyday lifestyle? To her, I am a “paper patient,” as many of us are to our new doctors. Truth is, my surgeon just does not know me. She also knows next to nothing about the latest wheelchair cushions that can be custom designed and pressure-mapped, another important consideration.
So I challenged her. I asked if she had specific detailed imaging showing my blood flow in the area of my operation. No, she said, she was assuming that my history of coronary artery disease and peripheral artery disease meant that I would most likely have problems. Then why not, I asked, order some kind of imaging test that will show exactly what’s going on in that area — an angiogram or CT or something that shows the specific blood flow?
Join Our Movement
What started as an idea has become a national movement. With your support, we can influence policy and inspire lasting change.
Become an Advocate
I told her I would not give her my permission to operate until she — and I — have current specific information about blood flow, plus I would need to talk to an infectious disease specialist about possible prophylactic antibiotic medication in case I decide to not have the operation. The look on her face told me she has a hard time putting up with a patient who presumes to know their best course of treatment.
To her credit, what she fears could actually happen, so I would be foolish not to listen to her. But no matter what I decide, I am the person who must deal with the day-to-day details of healing and going on with my life — my entire life — after I leave the doctor’s office. For me, it is all about my quality of life. For her, as it is for many doctors, it’s more about having a successful operation and not having to deal with complications. I understand that, but no matter what we decide to do, I am the one who must live with the everyday consequences.
In the end, again to her credit, she listened to me. She scheduled a diagnostic CT with and without contrast to trace the blood flow in the area and referred me to an I.D. doctor. In other words, we will get all the specific info we need to make a truly informed decision. Since I am the one who must greenlight any operation, I want all the info I can get. As patients, we are entitled to that.
To learn more about advocating for yourself, click here.