Imagine waiting 15 years for a life changing surgery only to awaken and realize the doctor performed a completely different surgery than you consented to. Then, imagine the surgery is your worst nightmare… undoing 15 years of progress, leaving you with scars on your body that previously were unscarred. I can not only imagine, I lived it, and it was one of the worst feelings I’ve experienced in my life. It was a complete violation of my trust, my belief in everything sacred I held for surgeons and a destruction in the belief my scars would ever get better.
With over 30 surgeries to my credit, I feel like I’ve experienced it all. I’ve had my fair share of complications but I have always accepted them as an inherent medical risk. In each situation, I knew the surgeon did the best he could and was executing our mutually agreed procedure. I had not only accepted Murphy’s Law as being the rule for me, I had learned to embrace it.
Burn surgeries are known for complications and high rates of infection.
In the past, I had willingly accepted the outcome of losing 3 skin grafts to infection. I had accepted my fate when gangrene set in and eventually necessitated the removal of my right ear. I had accepted the outcome when my surgeon accidentally harvested too much skin from the top of my legs, essentially making them a 3rd degree burn, and had to harvest skin from the bottom of my thighs to repair the top of my thighs. I even accepted the impossible when a 4” x 8” full thickness skin graft was harvested from my abdomen and shrank 65% once inserted into my neck (statistically it would only shrink 5-10%). The healing of my body has always defied the laws of medicine and I make every surgeon aware of my history prior to undergoing new surgeries.
I’m growing but my burn skin won’t grow with me
What most people don’t know is burn scars don’t grow when you grow. The scars have limited elasticity and mine in particular were impacting my hearing and pulling down the right corner of my mouth and eye. It was manageable pain but something that was getting worse with the passing of each day and something that needed to be addressed while my insurance was still willing to treat the condition as a “medical necessity”. Previously the impact of growth was so substantial that my right arm was 2” smaller than my left arm, requiring a skin graft 3” x 10” to be harvested from my hip.
It was 1999 and I was finishing my 2nd year of MBA. I had spent the last 2 years methodically interviewing surgeons around the country in person to determine who I felt could deliver the best solution to improve my situation. As you might imagine, despite all of them looking at the same scars and doing the same evaluation, no 2 surgeons offered the same solution. Surprisingly, some were in direct contrast to each other. One surgeon went so far as to say,
if you have the tissue expander put in your neck as Dr. XXXX recommends, it will severely impact your breathing and put you at major risk.
That’s the challenge of burn scars. They are the hardest trauma to fix and everyone’s body responds differently.
As I finished my nationwide search, I relied on my personal experience over the last 15+ years to conclude the simplest solution is usually the best. I opted to have a section of skin, roughly 4” x 8”, to be harvested from my thigh and stapled into my neck, similar to what had been done in 1995 (sample image below). Almost all of the skin had already been harvested from both legs over the past 15 years but surprisingly I personally had great results with reharvested skin grafts.
Impact of the medical battery
Immediately awakening from the surgery I knew something was wrong. My back and my buttocks were in extreme pain, which was strange considering they were not even remotely associated with the consented surgery or ever even discussed. These were the only 2 areas on my body that were still virgin skin – unburned and intentionally not used in previous skin grafts. Over the years, many surgeons had mentioned using my buttocks for a full thickness skin graft to my face – it was soft, unscarred and supposedly the pigmentation of your buttocks is the closest to your face. I repeatedly refused these suggestions knowing I would never be comfortable knowing part of my butt would now be part of my face. Call me crazy, although most would never know, there was nothing appealing about skin from my butt being on my face – one can only imagine how much fun my fraternity brothers would have with this one. Let’s be honest, your face is the first thing people see and would you be comfortable with a large portion of your butt being on your face? The reality of my situation was only telling considering I had called my little sister “butthead” the first 3 years of her life and convinced her that was her name.
As I began to regain mental clarity, I requested to see my surgeon only to be notified he would not be available as he was on vacation fishing for the next 5 days. However, the nurse felt a phone call with the Dr could be arranged when he called in tomorrow morning. How could this be? In all my years the surgeon has always visited me the day after an operation to make sure everything went smoothly and no questions. The harsh reality began to set in, the nightmare was only beginning.
I will never forget the pain I experienced when I tried to sit up in the hospital bed. There was an intense knifing sensation of pain radiating from my buttocks and back. It literally felt as if the skin was ripping apart. It was then the attending nurse informed me that I needed to remain on my left side as large sections of skin grafts had been harvested from the entire right half of my back and the entire right side of my buttocks. The extreme tugging sensation now made sense as she explained the dressing on these areas were actually stapled into my skin. The sensation of skin ripping in my back and buttocks as I moved were not just sensations, they were actual skin ripping – creating 1/2” gashes in several spots on my back.
The next day I was finally able to talk with the surgeon. I’m not a violent person, but my head was filled with thoughts of anger and rage as I kept saying to myself how nice of him to take time away from his fishing trip to discuss why he changed the surgery while I was asleep without asking me or my mom who was waiting anxiously outside the OR. I played the conversation in my head 1000 times. Would I just start yelling at him and ask,
what the hell did you do and are you freaking crazy, who in their right mind would do this?
Would I threaten legal action and yell repeatedly,
you’ll pay for this and you’ll regret the day you f***ed me and left town?
Or, would I calmly ask him to explain what he did, and why, and try to keep my emotions out of it. I decided on the latter as my temper has never resolved matters in the past and usually prevented me from getting what I really wanted – the real answer. As calmly as I could, with pain increasing my voice inflexion, I asked my questions and bit my tongue as best as I could as he rambled through his explanation. It was obvious he sensed my anger and overall disapproval of his actions. Without saying I’m sorry or even offering a hint of an apology, he admitted once I was on the operating table, sedated and he could examine my scars in their full majesty, he felt using the virgin skin from my buttocks was the best option for my neck and would give me the best long term benefit. Consistent with what I had told other surgeons over the years, I never doubted that using skin from my buttocks was a viable option. However, I had intentionally chosen not to use it knowing it would always be an option when I was ready. I also held out hope there would be a procedure in the future where using buttocks skin would completely replace all the burn scars from my face (this had been mentioned by other surgeons but they had said to wait as well). Equally frustrated, I asked why did he remove the skin from my back and staple it into my armpit, especially since we never even vaguely discussed my arm being an issue. He reverted back to his story that once I was on the operating table and he was able to fully assess the contractures on my arm, he felt the procedure he did offered the best long term solution.
Road to recovery
Returning to grad school was a challenge to say the least. Essentially, I had two large scabs covering half my back and half my buttocks. Every small movement from a twisting of the back to sitting in a chair to bending over to tie my shoes to grabbing a backpack or even just walking, caused the scabs to rip and start bleeding. When I would sit down in the classroom desks, the large scabs on my back and buttocks would crack open, bleed through my clothes and then bleed again when I stood up because the clothes had dried to the scab. After a couple of days of bleeding through all my shirts, I decided to never put my back against the chair, limiting the bleeding to only my buttocks. It was a nightmare to say the least. To make matters worse, I was also working 30hrs a week at a venture capital firm in hopes of securing a permanent position upon graduation. I managed to keep up with my work responsibilities in the hospital and couldn’t afford to squander this great career opportunity once I returned back to campus. To prevent the chance of impairing my driving, I delayed taking pain medication several hours, and sometimes not at all on days I was working only 4 hours or less.
I registered for campus escorts to class when I first returned to campus but abandoned them after the first day realizing the shuttle service was not timely. Instead, I rode my bicycle and learned to just take the pain and picked a route that minimized pedaling and pot holes. As the weeks amassed into a month, the scabs were finally healed and my daily actions were no longer limited. However, the new scars did not fade and were a daily reminder of that tragic day when my trust was stolen.
Where am I today
One thing I have learned over the years is that people will let you down. Some will do it intentionally and some do it even though they had the best intentions in the world. Luckily and by the grace of God, after 3 years of wrestling with this life changing event, I was able to put the past behind me and restore my belief in tomorrow being a better version of today. I have forgiven the doctor and harbor no ill will against him. I also pray he is not burdened by the years of hardship he put me through. I guess I really should thank him for the idea he cemented in my head that,
I need to continually focus on what I’ve gained in life as opposed to what I’ve lost.
Don’t get me wrong, I’ve lost a lot but I have definitely been given way more than I deserve. Who knows, but without this tragic event, I may not be married with a beautiful wife and 5 healthy kids.
Shay is an All American and World ranked triathlete, burn survivor with scars over 65% of his body and is a sought out national motivational speaker. Despite being told he’d never compete in sports again at the age of 8, Shay is living testament to “Anything is Possible”: 4x Ironman, 4x member of Team USA, ranked top 1% of Ironmen worldwide and has competed in 9 triathlon world championships, including the Ironman World Championships in Kona, Hawaii. His mantra has always been to not merely be a “finisher” but to be a “competitor.” If you enjoyed this article, I encourage you to check out my other posts.